[03.21.2005] day 600
» ktb article 006: ventura county star 003
[03.08.2005] day 587
my ktb update note has been moved from to-do lists for days, weeks, and into months. while it appears to be harder to keep up with all the to-dos, actually it is just the reality. so much has gone on, so much to record, so much to tell, yet time seems ever so slippery. and then again, the context of what is contained in the day–to-day activities, some appear as not-so relevant time-consuming exercises. all boils down to perspective. i try to keep in mind that we are but terminal human beings without a guaranteed expiration date. thus if this were to be my last day, what would be most important? the ordinary can suddenly be the profound- the beauty of a cloud, the softness of a hand, the let’s play a game, and the proverbial i love you.
the last couple of moon cycles of 2004 were filled with waxing and waning of emotions: ktb teetering in darkness as she grasped some of her transformations, discovering some of her scars, realizing some permanent limitations [as the ability to drive]; one moment would be fraught with despair, while the next would be met with a gut-wrench squeal of sheer excitement, then unexpectedly there would be those stabs of rudeness leaving others pondering where that came from. those of us who see her in the comfort of our home day-in day-out know this all too well.
november was exuberant indeed. we were in awe of the community support that mr. moccia, her 6th grade teacher, rallied up. the banyan family certainly knocked our socks off wrapping their arms around us, as did the press and the mail from the community at large. when ktb speaks of wishing to die, i read her a note from someone whose life she has touched just by sharing part of her story. momentarily there is a different perspective. we are all connected indeed. and yet while feeling so alone, so betrayed, so abandoned, the revelation that our community cared was a welcomed shock. it felt ethereal. people whom we had not been in contact for years, suddenly called akin to paying respects, tough this was something like paying ‘sorrow.’
then of course, there has been my schooling- my masters- which has taking a new life for its purpose i no longer know, but i must complete it after such an extensive investment. however, there have been the relentless demands and deadlines, exercises and at times, apparently pointless activities. i fight to keep an open mind, wishing someone could only understand where i am coming from [a ktb daily line]. there is that perspective again. one thing i do know beyond a shadow of a doubt is that my calling is not to be an academician. i am too much of a pragmatic, hands-on activist to enjoy the mental masturbation called for in the so-called higher education. that said, i thank all those who facilitate my masters pursuit. that piece of paper will be of value someday.
the reprieve, joy, reward, and excitement arrived in december: our tickets to chile [thank you angels j]. it had been 16 years since ktb had interacted with her chilean family. back in 2003, the phone lines quickly had connected us at the onset of katie’s premature departure: the wearisome journey of coming back from the dead. as time pased, i needed the comfort of the once-familial and wished to fullfil katie’s failed plans: to go to chile in september 2003 for a few months to get to know her chilean family and celebrate her grandfathers 80th birthday. knowing we cannot ever go back in this earthly realm, at least the desire was making that connection, and yes i looked forward to some much needed time off ktb-care. that trip/journey was magical and thought provoking indeed. the physical distance that has separated this bloodline appeared eternal, then suddenly one appeared and it was real that one existed in that realm, even if in a seemingly temporary fashion. thoughts, attitudes, reactions are all too numerous to mention, all the while the memories are priceless. and yet there was that undeniable need for connection and belonging. each being with its own history, while a part of the fragmented whole.
january 2005. a new year ushers new possibilities, hopes, and dreams. back in the usa, we arrived to good news of our house/home struggle having won a battle to secure our housing needs, at least for the time being. the next focus was ktb’s long-awaited and fought for first surgery towards the goal of her teeth implants. january 26th was the milestone day, and we encouraged ktb through her fears and doubts. the five-hour, seemingly eternal, hip-to-jaw bone graft surgery was another excruciating experience, while christina and i awaited the results in the agonizingly familiar hospital waiting rooms. the sounds, the smells, the discomfort within the hospital walls create an experience that brings up much too much pain and sorrow. meeting the doctors in their scrubs and seeing her limp body whisked by us took us momentarily to that deep, dark place. neither one of us could speak. all we could do was to sit and wait in that god-awful uncomfortable room, chocking back the tears, each trying our hardest to be strong. who in the hell designs those back-breaking chairs?
and then comes the long awaited moment when we could actually see her, and the oh-my-god feeling upon seeing her. at least she was still groggy and feeling no pain. later as the meds wore off and the pain kicked in, it was back to that mode: chasing after hospital staff to ease the pain of your loved one. the doctors warned us it would get worse before it got better. indeed they were right. her face swelled and swelled, as the pain increased and increased. that unwelcome feeling of helplessness revisited, and all i could do was to do my best to be patient, caring and kind, while being a hawk to see to her care. my dear friend berney was a gentle source of prudent, caring comfort (ktb thanks you for the 8 dozen red roses j). i am eternally grateful. her surgeons and their staff were/are heavenly sent indeed. never in my life have i encountered such compassionate and diligent care. those who contribute to ktb’s quality of life are my heroes. once home again, the diligent post-op care was on. ktb continued to be quite the trooper, followed doctors’ instructions diligently, overcame the infection and has healed in a remarkable way again. many thanks and kudos to ktb’s visitors as you always brought out her cheer.
spring is in the air and i rejoice at the coming blooms. robert schoenhofen pulled off a remarkable fundraiser at the alamo in newbury park helping the ktb special needs trust blossom. thank you j. we are so touched by stephen and robert vasquez [alamo’s proprietors] for their willingness to help an individual. in today’s corporate world, businesses only help organizations making it very difficult to fundraise for ktb’s needs. we thank you j. we were in awe once again with the turn out of community support. we thank you j. we are grateful for the bands that came out in support of ktb’s cause. thank you, each and every one of you who participated in this event j. particularly amazing, is/was the support from the motorcyle community. a thing that i once loved-motorcyles- i vowed to never be a part of as ktb lay in a coma. i came to realize that the thing itself was never at fault for katie’s demise. rather it was the driver himself whose fault it was to have driven so recklessly, while taking my daughter’s life, leaving the wreckage behind, and ultimately choosing to abandon any responsibility.
regardless, we continue to push forward, knowing that today is our most valuable day. to that end, each day is filled with ktb life engaging activities, the acknowledgment that i still have three other ‘children’ to care for and who still need me [even if i feel barren], and that for what it is worth, i have got to get my thesis done this year. finally, i’d like to thank each individual who has contributed/helped with ktb’s cause. with your help, we will rise and shine, and we will triumph over this tragedy. we cannot do it alone. i pray for the time when we can create happy memories and the days of sorrow are but a distant past. yes, there will still be the cycles but none as severe as the past decade as brought us. and we will become a voice for this silent epidemic: traumatic brain injury. namaste.
[03.07.2005] day 586
okay… yesterday (sunday), i saw the movie, “constantine” with my friends, shawn and ryan. this weekend, i made several thank-you cards for others who donated money to my good cause, my smile. during the week, i saw my caregiver, lalioni, and i defined the words that she chose and i wrote sentences for each of them. i also played tons of “scrabble” with her and my good friend ryan. i also went to h.u.g.s. (heads up group support) for my normality and for fun. currently, i am listening to a band’s music. the band is “overnight lows” and they are so good! they are somehow from ucla because i’m copying this cd from my friend ryan and he went to ucla.
[03.06.2005] day 585
today katie was making thank-you cards. she said, "i would like to paint a smiley face on the front because they are helping me get a smile, you see." then she said, "its kinda sad, you know, that i lost my smile.. i cant believe i trusted damion." she paused before she spoke his name, as if were too painful for her to utter it.
[02.27.2005] day 578
yesterday was my night at the alamo restaurant here in newbury park. they raised so much money for me happily. christina spent the night last night in the guest room. my old 6th grade teacher, mr. moccia, gave me a greek book this weekend as well.
[02.13.2005] day 564
i am still on my liquid diet. a friend of mine is going into a hospital for brain surgery soon. i did all of the warning that i could. tomorrow, i will go with my mama to camarillo to pick up a pair of new glasses at an optometrist’s office. i still have a difficult time sleeping past 4 in the morning. i panted a bare-root purple rose bush in a pot. purple is my favorite color. not much else is going on in my life currently. i play scrabble in my spare time.
[02.13.2005] day 564
i am currently fighting an infection on the roof of my mouth. i got a prescription to rinse out with for one minute to help me out. i am currently listening to bjork's latest album. it has such good beats. she has such a groovalicious voice to sing with. i am so not looking forward to my lower jaw operation in 4 months. i still admire bjork's voice. ciao!!! -katie bee
[01.31.2005] day 551
katie is back from her first reconstructive surgery. the operation was successful, and she is hanging in there with high spirits. congratulations ktb!!
[01.21.2005] day 541
greetings to all,
this is to inform/remind you of our big event coming up next week: on wednesday january 26 at 12:15 pm katie will have her first hip-jaw bone graft surgery performed at goleta valley cottage hospital in santa barbara, california. she is scheduled to be in the hospital two nights. i plan on staying out there. we are most grateful for our community [near and far] support and her oral surgeons for making this step possible through their contributions. needless to say, this is a major surgery. katie has been feeling quite scared, naturally. yet i am helping her focus on the eventual outcome: her top teeth. in addition, she has been feeling very depressed, even suicidal. i reckon in a way it may be due to her progress as she is beginning to acknowledge her transformation. for the time being, she is stuck on the 'i am an ugly freak and my life is pointless' mode. i encourage her to view the remarkable progress she has made, that she is not ugly, and that in time she will feel better. then again, her rehab counselor reminded me that i do not have a clue what it is like to be in her shoes, and to allow the space for some set-backs. i had to humbly acknowledge this truth.
we request your prayers and moral support through whatever means. i am not sure what it will be like post-surgery. i pray for healing and the strength for yet another remarkable victory. i also know that we will need to continue with our fundraising efforts, as in six months she needs the second bone-graft surgery, later the lower jaw surgery, orthodontic treatment, and eventually the teeth implants. we wish you good health and peace :)
with a grateful heart and relentless perseverance,
veronica and ktb
[12.21.2004] day 510
it amazes me how much community support we are receiving. people from all over ventura county-- newbury park to moorpark and california to colorado-- are contributing and it is so unbelievable! every thing counts and nothing goes without gratitude. thank you for your support and sweet words! -christina
[11.28.2004] day 487
recently, family friend and elementary school teacher, raymond moccia brought the newbury park community togetther for the commencment of the smiles for katie fundraiser. the event to gather fiscal support for ktb's jaw surguries was held at our elementary school, banyan, on the morning of november 19th. news reporters attented the event to compose articles in an effort to spread the word of ktb's medical needs. the entire community has been amazingly supportive.
» ktb article 003: ventura county star 002
» ktb article 004: daily news 001
» ktb article 005: the acorn 001
[09.23.2004] day 421
against damion's mother's request, i attended damion's memorial service because i needed to do it for myself and my family. since the night he killed himself, i was having haunting dreams about his service, with the urgency that i did not miss it. it took some resourcefulness to find out the where and when as his mother declined my request for the information.
since this whole surreal tragedy took place [july30 2003], as my kids have said, it has all been about damion and his mom. they have neglected the ramifications and impacts for the survivor and family of severe traumatic brain injury. for over a year they have promised to help kt. i am still waiting. meanwhile, i am the one who continues to care for the remains of damion's recklessness. damion's actions imposed excruciating pain, devastation, and hardships upon my family and those close to kt.
i struggled with my choice to attend the service out of concern for leanne, his mom. then i realized that i have been too overly concerned about her and her son's trials, and it was time to make a stand for what i needed to do for myself and for my daughter's memory. i needed to know who was this man who ruined our lives, what was he remembered for? i needed to do what i needed to do to allow me to cope and persevere through this devastating, life altering experience. it was a need that did not justify rationalization.
i shook and trembled walking towards the service; my heart was in my throat. i was scared, angry, and filled with pain. i remembered that i was there because of the effects of the collision damion caused: kt flying off his motorcycle traveling at some 100 mph landing on her face on the 101fwy. i cannot fathom her freight; her anatomical response was urinating in her pants. damion, convicted of multiple crimes, chose his own death instead of the possibility of going to prison. and yet, i felt so awkward as if guilty of something.
i sat at the very end of the chapel, next to the door, in case i had the urge to bolt from there. of course all the speakers said how much they loved damion. they shared how loving he was, how his smile would light up a room, and how he loved to help others. others spoke of knowing he was a troubled soul. but their consolation was that now he was at peace. i wept in silence. my body shook and trembled more. i felt as if i was being stabbed in my heart. i resented not having had the opportunity to have a memorial service for kt. what would her friends and loved ones have said of her? we never got that chance because we have been too busy to care for her remains.
dr. gloria montgomery, a recovering alcoholic who runs the sober living house where damion was this year and officiating the ceremony, said how much damion liked helping troubled youth and that they [who?] would be starting a foundation in damion's name to help other alcoholics. i wanted to get up and shout what about kt? what about helping the victims of alcoholics? she read leanne's statement saying how fitting it was that she would be the to first find him [he was hanging in her garage when she came home]. for years he had told her that he did not belong here on earth and that she had to let him go. leanne wrote that when she found him and took him in her arms, he had the most peaceful look on his face. then she pressed him against her bosom and offered him up to god; she saw him open his arms and receive her son. it was the most peace-filled experience she's ever had. of course i thought, what about kt? was she the sacrificed and forgotten victim for him to have eternal peace? then there was his aa sponsor talking about how he will dedicate things he his doing in damion's memory and how he wished he could have done more. what about accountability for his actions? what about his victim and her family? his step-mom got up and spoke of how much his dad and she loved him; tommy [his dad] just did not approve of his behavior, and they really did not know how bad things were. really? leanne told me she begged his father last october 2nd to call damion for his birthday, as he was really depressed at promises [elite rehab]. she implored that he acknowledge his son existence. tom magglos replied to her, “as far as i am concerned i only have a daughter, and her name is kimberly,” then hang up. i wonder what his dad would want from the perpetrator and his family, if his daughter was in kt's shoes?
to all those who honored his memory and wished they could have done more, i say the only way to repair the damage done is to look after kt's welfare: provide the finances to meet her medical, rehabilitative, and 24/7 caregiver needs, and cover all of my out-of-pocket expenses.
leanne told me that damion left her a note and katie one. she said the one thing damion asked for was to see to it that kt was taken care of. that was his dying wish. i found it peculiar that there was no mention of this [his dying wish] at the service. maybe it is because, as leanne put it, i am/we are too close to the tragedy; she said she cannot bear to see me now because “you remind me of the beginning of the end.” i can easily interpret this as their desire to just forget about kt. in their eyes, she does not exist. she becomes an unpleasantry.
then there is what i remember about damion. about a year before the collision, kt told me she was going out with this chef, grandson of one of the founders of the baja fresh. she seemed smitten by him, particularly because he professed his love for her and wanted to marry her. i cautioned her, “give it a year…” couple of months later, kt had to be rescued from his condo as damion was drunk and became abusive. kt had been recovering from a terrible assault that led to her losing her job, car, etc. thus she either rode her bicycle or was dependent on others for transportation. a family friend drove from the san fernando valley to get kt out of the situation. we spoke of the event at length. i had divorced her sober alcoholic father and had broken the chains from domestic violence. my mantra is, “do not get involved with addicts, recovering or not. the ‘ism' always remains; it takes on various forms. and if you have been abused once, never go back, no matter the promises made.”
kt lived on her own, but would spend weekends with me. she needed the nurturing. yet, regardless how kt was/felt, her mo was always giving the shirt-off-her-back to help others. she was very/naively trusting, kind, and giving. the first time damion called kt at my home, i asked her who that was as i did not understand his name. she replied, “damion.” i said, that sounds more like demon to me.” their relationship had cooled, and then one weekend leanne called kt. she asked for her help as damion was binge drinking in a hotel and would not open the door for her. she had no one else to turn to because damion had no friends left. in a heartbeat, kt agreed to go to his rescue. she knew she could help. i warned her to not go. “he needs help mom, and i know that i can help him.” shortly leanne arrived and whisked her away to rescue her son. as it became evident, for years leanne had been rescuing her son from his self-destruction, while enabling him.
then i recall the last day i saw the kt we all knew and loved. it was saturday july 26 2003. we had a busy day. she had been helping me, and she was bummed because she had not been able to get tickets to go see radiohead. she had tried to see them since high school. it was late afternoon, and we had settled down to watch a movie. the phone rang; it was damion. she had him on speaker-phone, thus i could hear their dialog. damion wanted her to come over to his mom's house where he lived now [after a fire in his condo]. kt declined saying that she was in a bad mood and would not be good company. he persuaded her until kt finally said “fine.” when they hang up, i asked her what was going on between them. she said, “nothing mom, i am just trying to help him. he is working on his sobriety and wants some company. he has no one else. don't worry about me; i'll be fine.” kt had been clean and sober for sometime, after her own battles with addiction. leanne and damion arrived shortly. we had no idea damion's license was revoked because of a recent dui. i walked katie out to the car, and asked her if i was picking her up at their house on sunday, because we had plans to go sailing in santa barbara. leanne responded, “i think she wants to spend time with her boyfriend.” i did not reply. kt cared and loved damion as a friend. i told kt, “call me in the morning if you want to go sailing.” and that was the last time i saw her. usually sunday evenings she would go back to her place, and we would touch base during the week. i am not one to keep daily tabs on my children when they live on their own.
the next time i heard about kt, was that infamous night, july 30th 2003 at 11:45pm, when an officer informed me on the phone that kt was in a collision, and she was in critical condition. i was staying in northridge with a friend as i compressed my work-week to avoid the commute. she offered to drive me. i declined. all i knew was that i needed to get to los robles hospital in a jiffy. i changed into my clothes and took off. i drove fast praying that i would get there fast and safe. i arrived to find two of my kids in the waiting room. then my friend, and later my other daughter arrived. we huddled in despair. the team of doctors informed us of her severe, critical condition, and the uncertainty whether she would live. they allowed us to see her, only by twos. we wailed beside her disfigured and lifeless body. we had no idea what surviving traumatic brain injury entailed.
our lives have been permanently impacted since that horrific night. that day leanne arrived at her house exhausted from coping with her sister's alcohol poisoning aftermath. she had placed her in the sober living house damion would later go to. she told damion to take kt home. kt asked if she could stay another day. leanne needed time alone. i reckon she forgot? her son, even if he did not appear under the influence, was not licensed to drive. she had bailed him out of jail weeks earlier for evading the police and a dui. damion told me that day he had gone to a friend's house by himself where he drunk alcohol. i wonder who that person is? he said that kt had no idea he had been drinking. the aftermath is that the kt we knew and loved is no longer among us. damion magglos and leanne moje returned to me a permanently disabled woman/child who has unmet medical and rehabilitative needs, and requires 24/7 care.
after some fourteen months of promised financial help by both damion and leanne, it has yet to materialize. i remember the many times he promised, “i am going to have a check for you in two weeks. i talked to my grandmother to get the money my grandfather left me in the magglos family trust early. i am not supposed to get it until i am 35, but i want the whole thing to go to kt. she is my kt bear and i love her. i am telling you, i am trying to get you $100,000 for kt's care. just be patient. it is coming, i swear.”
right. i am still waiting.
leanne told me how much damion loved kt, “what 32-year old would sleep with his bible wrapped in kt's boxers? he needs to get sober before he can help her. all he wants to do is to work to take care of kt for as long as she needs it.”
the tragedy is not over because kt's needs still exist. traumatic brain injury lasts a lifetime.
i implore to damion's family and friends to do the right thing by honoring damion's dying wish, step up to the plate, and contribute to the financial means to care for kt.
~veronica
[09.20.2004] day 418
the rollercoaster continues. i knew last week would be a busy one, yet i never fathom another tragic one. the conference with kt's oral surgeons last tuesday was emotional, for me at least. first, the infamous stereo-lithic model ‘worth it's weight in gold' revealed that one of the treatment plans was ‘not feasible due to the severe bone loss.' the caring doctors informed us that ‘the good news is that we know what we can do.' this translates into two hip-maxilla-bone-grafting surgeries: one for height and one for width, each painful process may take about 6 months. then there is orthodontic treatment, lower jaw surgery [re-breaking and re-aligning], eventual implants and finally crowns to bite/chew and eat with. another ‘good news' is that ambitious dr. bienstock figures the treatment plan can be done in 2 years, versus cautious dr. gunson in 3. for me this translates into get the fundraiser in gear now! i need help. please check: ktb needs.
wednesday was a lousy day in small claims court as i attempted to make kt's slumlord accountable for her security deposit. i am not one to defend myself verbally naively believing that my actions are who i am…i do therefore i am….i was not prepared to be personally attacked by both the slumlord and his ex-wife. kt stood by speechless. once again, i am reminded that our so-called justice system is not about truth and justice, rather who can lie and twist facts most assertively. in the end, i was sorry i made the choice to stand up for kt's rights before a court of so-called law, even if i have yet to receive the judge's so-called ruling.
thursday was a day filled with angst; kt was oblivious to it. we were supposed to get a check from leanne, damion's mother, at a doctor's office. it is claimed to be the funds that damion had earned thus far from a movie he was working in plus his private chef fees. the cell phone message informed me that leanne had been delayed, thus the 4pm planned meeting could not take place. she had been called back to the hospital for further testing. around 6:30pm, while kt and i picked up her rx @ longs, leanne called in distress wanting to make sure i had gotten her messages. i confer. she apologized, while crying, as i inquired. she begged that i do not tell her son. i obliged. she had just been diagnosed with malignant breast cancer. thirty years ago she'd beat ovarian cancer. she did not want her son to know because he ‘is so scared [of going to prison] and depressed. i had to give him a couple of xanax and leave him sleeping while i went back to the hospital for further testing. i knew something was up when they wanted me back immediately.” she offered to come to my house when she was done at the hospital to drop off the check, unless i could wait until the next day in court. after nearly 14 months of waiting, i figured what difference does a half-day make? besides i felt so badly for her. the past year alone, her best friend died, and some 6 weeks earlier her brother died. how could i impose? we agreed that i would get the check in court.
around 10pm at night, while i was writing a new court statement for the judge, the phone rang. leanne was crying. she informed me that there would not be a hearing on friday, so do not bother showing up in court. she said that when she got home from the hospital and opened the garage door, damion was hanging and dead. i could not believe what i had just heard, and in stupor, i replied, “you have got to be kidding me.” she repeated her statement while sobbing saying he left her a note and one for kt; the one thing he asked for was for kt to be taken care of. i wonder by whom and how?
i have been in a state of shock and devastation since. i feel simply awful. i cannot ‘function.' reality is surreal; the ‘other' haunts me and taunts me; i am living in a surreal sphere. please oblige me.
i ache for leanne because as a mother i cannot imagine surviving such a scene. while pity is never a comfort, i do feel so sorry for this woman and all the pain she has had to bear. of course, i cannot negate the pain my family has suffered, because kt chose to continue to see damion, and my assumed duties to care for her remains. kt lost her life while trying to ‘save' damion from his alcoholism. according to his mother, this was the first time damion was sober since he was 17 [now 32]. ironic, is it? that kt was the child of an alcoholic, and each of them fought their own battles with addiction. kt now is a ‘strait edge'. the claim is that damion was sober for about a year. the great spirit knows the score. and i am relieved to not have the ‘judge' role. there are those who believe that damion's suicide was a cowardly act. i believe it was a desperate act beyond reason. having become familiar with damion's personal history, i understand why, even if it does not rationalize the act or its consequences, nor does it appease my/our pain, agony, and frustration. he was not capable, nor equipped to cope. i understand the anger and frustration of those impacted by is action. i also understand the act itself. maybe it is only those who have been at suicide's gates who can comprehend the power of pain, devastation, and detachment. since, i have been told that he was a young soul unable to cope. our soul's journey is beyond our limited human comprehension/logic. i can take on some of my children's fury out of sheer devastation, and yet i know i am not here to judge.
as tragic as things are, i hope to eventually see the purpose of it all. the one thing i do know, beyond a shadow of a doubt, is that there is an ultimate purpose. may i know it, understand it, and fulfill it. of course, i cannot do so without you. thus, i ask for your help. do you know someone who can facilitate/coordinate a fundraiser? do you know of someone who can helps us with our needs? can you make a donation? (payable tothe ktb special needs trust pob 827 newbury park ca 91319). my reality is that it is just my kids and i, and i am the one who needs to make things happen.
there is a silent epidemic –traumatic brain injury- killing/injuring our youth. please help us stop the silence, and please help our family.
the good news: friday i finally received approval to use the room at the behavioral health clinic in thousand oaks to start the brain injury support group. our first meeting is september 30th (www.ecofotos.com/hugs).
in anticipation, with much gratitude.
~veronica
[08.02.2004]
it has been 367 days since that infamous night that changed our lives.
around 5:45am i heard kt in the bathroom. then i heard, "mom i need your help." it was way too early for me to even lift my head off the pillow. the intense pressure and roller coaster of the anniversary week and the sentencing trial left me with sheer exhaustion. i felt like i could sleep for weeks.
shortly again i heard, "mom help!" i jumped from my bed in an instant and went to her assistance. the odor permeating from the bathroom gave a clue as to what i might encounter. "shit, what happened kt?" literally, feces on the floor, the toilet, her behind, back.
still not quite awake and overcome with tiredness, "what the hell happened?" i demanded. "i had an accident in my diaper and i got poop all over me," she replied innocently. i switched into task mode. "ok let's get you cleaned up. i'll start a shower, but you cannot sit on your bench because your bottom is covered with it." she had already taken her soiled bottom pjs off; i helped her take her top off and get her into the shower. she is used to using the shower bench when she showers, so i urged her to be very careful. "hang on to the grab-bar with one hand, as i hold the other, lift one leg up and over the tub, ." once she was in and washing herself, i told her, "i need to get something for you to clean up the mess. remember that we have talked about that the only place that it is ok for you to go #2 is in the toilet. i am not cleaning the mess this time." i returned with the cleaning supplies and informed her, "after you shower, dry, and put clean pjs on, then you need to clean this shit up."
she agreed.
it was about 6:45am, she was almost done cleaning up, flushed the toilet, and of course, it overflowed. i tried hard to keep my composure, and after assessing the situation, i told her to get in my bed. she was really cold by now. i was filled with frustration and informed her, "we'll deal with that later." we snuggled in bed, and quickly i managed to drift off to sleep. in what felt like an instant, kt woke me, "mom, how will you know when to get up."
"don't worry kt, the alarm will go off. please let me sleep!"
i woke up. it was 9am; her therapy was at 10. "kt, kt, wake up! we have to get ready for therapy." she was already dressed, but there was only time for a quick breakfast- liquid yogurt to take her meds with.
we were only five minutes late to speech therapy. afterwards, we were informed that occupational therapy had been cancelled. the therapist was sick. we decided it would be a good day to finally go to the courthouse and file the small claim against her previous slime-landlord for refusing to return her security deposit. on top of that, her friend had spent nearly $1,000 in labor and costs fixing up the crummy room she had rented. frankly, i have had enough of people taking advantage of my daughter. no more. they'll have to walk over my dead body to do it. two and half hours later, we were finally leaving the courthouse after successfully filling the claim; both of us were famished with hunger.
she begged to go to daphne's for lunch, and i promptly obliged. on our way home, we stopped at trader joe's for a quick grocery run to get her weekly sushi and other rituals. then, it was a stop at the post office to mail the aerogram she had written to her grandmother in chile. the aerogram was so old, i had no idea how much more postage it needed these days. we stood at the long post office line with just the mission to mail her treasured letter. every day that went by without being mailed, kt would write on the envelope "i miss you" and date it. the back of the envelope was covered with her sentiments. we learned that aerograms had been discontinued two years ago.
we got home around 4pm. i suggested that she rest, if she felt like it. meanwhile, i tended to some medical bills. first, she got her bathing suit on preparing for her class. "good initiation ktb," i praised. soon, she laid on the couch curled up with the down blanket. from my office, i could see her in heavenly rest.
before i knew it, it was 5:00pm. "kt it is time for your swimming classes!" she opened her eyes and appeared puzzled. she squinted her eyes, and i repeated myself. without delay, we were both in the car on our way to her swimming class. we had waited for months for this opportunity, as physical therapy had stopped until she made more cognitive progress. in the meantime, i had to continue to do physical therapy with her to encourage improvement. it is like that saying, ôif you are not moving forwards, you are moving backwards'. and with tbi survivors, it is imperative to keep pushing forward to avoid regression.
no sooner we were pulling out of the driveway, and kt informed me, "mom i have a terrible headache." i looked at her. she looked pale and had that look of pain. i suggested that maybe she try swimming a little bit. maybe it would help with the headache. she disagreed. i continued driving towards the class, and she was looking whiter. i said, "i will go tell miss holly that you have a headache." she nodded.
"my headache is killing me mom."
"hang in there sweetie, as soon as we get home i'll get something for your headache." as if there were some magic potion to make the ailment go away. the last several times of her headaches had not been pretty sights. i ran to inform miss holly, and tried to get kt home asap. she was looking worse and worse by the minute. we got home, and she was disoriented. she implored, "help me mom." she couldn't get out of the car by herself. she was weak and wobbly. i told her to be careful, as i guided her by the hand from the car to her bed. i helped her lay down, and kissed her forehead.
"mom, my head hurts so bad."
"hang in there honey; i'll get you some medicine." she moaned some more. quickly, i went to get some liquid yogurt for her "take with food" headache magic pill to work. back in her room, i asked her to sit up so she could swallow her cure. slowly and aided, she obliged and partook her treatment. she laid her head back on the pillow, and i turned to put the remaining liquid yogurt on her vanity. in a split second, the familiar sounds of projectile vomiting prompted my immediate attention. i turned around, and her bed, as well as she, was covered in a pool of red and green vomit. she gasped for air. i reached for the trashcan, held it over her face, while holding her head. tears were streaming down her cheeks. i attempted to comfort her, while wiping the heave off her face.
once the purging subsided, she implored, "mom, help! yuck! i am covered in this puke! mom, my head is killing me. mom, help me please."
"ok honey, just lay down on your pillow. i need to get some towels to clean you with; then i'll get a shower going. do not worry honey; everything will be ok. you will feel better soon."
i scrambled to get the supplies needed for the massive clean-up job. i started by wiping the yuck off her body to be able to get her into the bathroom without spreading the mess any further. i moved her to the clean corner of her bed, and helped her get up and walk to the bathroom. i already had the water running. she requested a bath, instead of a shower.
the bathroom is small, and it is hard to take the shower bench off, with kt and the commode in all at once. i helped her back to the room to remove the apparatus and prepare the bath. meanwhile, the stench intensified making me nauseous. i had to ignore it, and get her into the tub pronto. again, i urged her to be careful. she was light-headed and very weak. i instructed her step-by-step: hang on to this grab-bar here, then lift one leg, while holding onto to this with the other hand. take it slow. safety is first. slowly, yet surely she managed to get in with my aide. i reminded her: keep your feet against the tub so you do not go under water. then, i instructed her: i need to get the linens out of your room, so just stay put in the tub.
i had to drain the acrid puddles in the trashcan before removing her down comforter to the back yard to hose off. then i removed three chuck pads and two mattress covers. the third one was dry. i learned quickly after i brought her home that layers of bedding were needed if i were to protect her new bed from being permanently soiled. i had already been forced to throw out her new comforter after getting it excessively soiled from her projectile vomiting. her down comforter would have to be washed at the laundromat, and without christina or shaun home now, i would have to drag kt in there with me. it works out when she is well, but on a day like this, she cannot go and i cannot leave her alone.
no sooner i had walked to the yard to rinse the comforter, and i hear "mom! help."
i ran inside, and kt had slipped in the tub, while laying on her back. her feet were in the air, she had one hand on the grab bar, and the rest of the body under water. i reached in and pulled her up. she was scared as was i. "i want out get out mom."
once again, i went through the safety drill, and slowly, but surely, she made it out, got dried, and into another set of clean pjs. pale as a ghost, i suggested she get in my bed. i tucked her in, after putting some migrastick on. she said, "my head is still killing me mom." i tried to comfort her for a bit, and then got back to the cleaning. her room reeked. i paged dr horton, our g.p.
this is just one of the many days of caregiving for my tbi survivor 23-year-old daughter. there are no magical cures, and there is little help for us. and for now, i am utterly exhausted desperately wanting help with our every-day lives.
~veronica
[09.07.2004]
time continues to whirl by, except in ktb world. for her the main concerns are her meals, her meds, and who will play what game with her. that is when she is not thinking about ‘guy' and relationship subjects. whatever pops into her mind, she acts on it immediately, without forethought of appropriateness. socially appropriate behavior is something most tbi survivors are challenged with.
no one doubts the remarkable progress she has made. as one said, she is doing real good for a dead person. no pun intended. while her progress as brought about more mobility, self-initiative, and some independence, there is the other side of the coin as with every child testing the waters. as sweet as she is, in split second, she can be right down ruthless. teaching consideration, kindness, and appreciation are no easy tasks. i have had some quite unpleasant moments in public with her outburst, and have been quite offended in private with her rudeness.
this week marks a milestone as her therapies end. it leaves her in a state of confusion and disorientation as the next phase is not yet in place due to the bureaucratic nature of the department of rehabilitation and our lack of access of rehabilitative services. she is confused as she does not know what is ‘happening,' in terms of structure to her day. she most definitely needs constructive structure to her schedule, along with the one-on-one work setting. not to say she could not do something independently, still she needs that eagle eye to steer her away from trouble/mischief. i witnessed her myself today as i tried to study, while she was just in the other room.
so it is some 13+ months since “t” day, and we are down to practically no assistance. no therapies, no social worker, no psychological therapy, a pending $100,000 reconstructive surgery that i must figure out how to fundraise for so she can have teeth to eat with, and her constant needs and demands. yes, i m exhausted. and in all my wallowing, i must recollect and thank all those who have made and given time to help out. i am too tired to name names, but you know, and the great spirit knows who you are. i am most thankful for your kindness and generosity.
next week is a big one for us. tuesday we finally have the conference with the surgeons involved with ktb's oral surgeries for the final probable treatment plan. many consultations, months, test, models, and thousands of dollars we can begin the quest to champion for the means to get ktb teeth to eat with. hopefully, that day we can schedule the first surgery, as it is a 3 +- year process. then i have got to put into motion the fundraiser.
wednesday we go to small claims court to get an order for ktb's security deposit from her slumlord. may the force be with us!
friday we return to court for the sentencing hearing. i can only hope and pray for restorative justice: make the driver accountable for his actions, make him pay for ktb's needs as long as she lives. thus far, i am the one left with the burdens of her every day care.
i have gone back to continue with my grad school courses at csun. ktb's care is still on trial and error. i tried taking her to school with me hoping to inspire her, but it backfired. in fact, these days it is hard to get ktb interested in doing much of anything besides play games and eat. how can one teach enthusiasm for learning, if not by doing?
as its been said, do not give up hope.
we are still waiting –started the process in june- on the approval for a room to use for a brain injury support group in thousand oaks. i have contacted every official in the chain of command, including our county supervisor. we are still waiting. tbi survivors and their families are no priority to anyone else ?.
~veronica
[06.28.2004]
dear judge clark:
this letter is regarding the impact that the motorcycle collision on july 30th 2003 has had on the passenger, my 22-year old daughter katherine berke [aka katie], and our family due to damion probert-magglos' recklessness and negligence. your honor, i request that restitution is ordered on this case, as we have no possibility for a civil case.
it is most difficult to put into words the impact that the defendant's irresponsible behavior has had on my family and all those who truly cared for katie. it requires much more than a few pages to be read quickly among a plethora of other pending cases. this is merely an abbreviated synopsis. katie is an innocent victim in the course of these events. her blood tested negative to drugs and alcohol. that infamous evening, damion drank alcohol when he had gone to see some friends by himself. and when leanne, his mother, told damion to take katie home, katie had no idea he had been drinking, nor that he was an unlicensed driver. yet, both damion and leanne knew his drivers license had been recently revoked. from a mother's perspective, damion killed my daughter on that tragic night. part of me died too, as well as our upcoming plans. even worse, he left me with a ghost of her persona to care for the rest of my life, without the ability to bury and mourn the katie we all knew and loved; and worst yet, tragically without the funding for the medical and rehabilitating care to provide a quality of life for her.
katie's very severe traumatic brain injury (tbi), numerous facial fractures and multiple bodily abrasions have permanently transformed her into a very different human being, physically, mentally, and emotionally. physical effects: her once china-doll-like face is disfigured due to the multiple jaw fractures and facial cuts as her face landed on the 101 fwy, while the helmet crushed into her face ripping off her teeth; her once proud and perfect $3,000 smile with bright white, perfectly-aligned teeth transformed into an odd one due to the loss of her 11 top teeth, severe bone loss of the maxilla (dr. bienstock), crooked bottom teeth due to the severe jaw break, and with most of the remaining teeth damaged due to the corrosion of the enamel from tube feeding while in her lengthy 45-day coma; her once perfectly shaped, minute nose transformed into a broken nose with blocked airways; her once delicate tone of voice now is now a different one; her once perfectly shaped, smooth and pointed tongue that comforted her daily since babyhood (a tongue-sucker), now an awkward, lumpy tongue to suck on after being lacerated into pieces and deformed; she has permanently lost her left field of vision ("left homonymous hemianopia from right-sided brain injury"-dr hymas), making her permanently unable to drive, even unable to ride her bicycle, and what remains of her vision classifies her as legally blind as it is blurry; her gait/walk is frankenstein-like; she has incontinence and needs to wear a diaper at bedtime; her speech is distorted due to her injuries; her sense of smell and taste are impaired; she has neurological disorders, such as delayed mental processing, agitated rubbing of her hands on her thighs and daily, sudden ôshivers;' she lacks coordination, balance, and muscle tone; her weekly headaches are managed with medication; her skin abrasions throughout her body have required daily (3x) treatments of ointments and oils, with the first several months requiring wound care, later scar care, including injections.
mental and emotional effects: before the collision she lived independently and managed her own health care, now she requires constant supervision and i have to manage her health care and every aspect of her life; she has sleep disorder, anxiety, agitation, inability to self-monitor, poor emotional control, and sexual dysfunction; she lacks executive function, the ability to organize thoughts and work, to create plans and successfully execute them, to manage her administrative functions; she suffers from the common tbi effects: amnesia, both retrograde and post-traumatic, and the organic behavioral manifestations: adynamia, disinhibition, and flooding. she is no longer the dynamic, energetic person she once was, she has apathy, loss of drive, slowed mental functioning with evident decrease in ideas, while exhibiting repetitive behavior (i.e.: calling her brother -literally- 10 times in a day to tell him the same thing); and activities are rarely self-initiated. she struggles knowing socially appropriate behaviors, gets frustrated very easily, lacks ability to work independently and judge safety. her cognitive impairments include changes in thinking and reasoning skills, diminished learning, attention, concentration, planning, problem solving, and abstract reasoning abilities; and impaired long- and short-term memory.
this is where she stands after eleven grueling months fighting for her medical care.
to begin with, the horrific, nightmarish, dreadful night of july 30th: when my children and i were finally allowed to see katie, only two visitors at a time, we quivered and cried in dismay of the sight. katie's face disfigured, bloody and swollen beyond recognition with blood running from her ear, nose and mouth, blood oozing from abrasions on her left shoulder, arm, hand, knees and feet; her partially shaved head, with tubes running in and out of her limb, lifeless body, and machines recording every one of her vital signs. a team of doctors informed us that katie had suffered a severe head trauma (no clue what that meant at the moment), was unconscious and in critical condition, had severe, multiple jaw fractures, had lost several of her teeth, had broken her nose and had a complex lacerated chin, her tongue had a stellate laceration about 10cm long, which they hoped to repair it as best they could. they had already performed an emergency tracheostomy. although in critical need for surgery to stabilize her jaw and hopefully control the bleeding, the doctors waited for the results from the ct scan and the evaluation from the neurosurgeon to determine if she was stable enough to undergo surgery. dr chan, the neurosurgeon, decided it was too risky to perform the extensive, needed jaw surgery. her glasgow coma scale was 1-1-trached, the lowest possible. he performed a ventriculostomy to measure and monitor the intracranial pressure, critical to her survival. dr tokuyama, oral surgeon, and dr. wareham, e.n.t., performed an emergency team surgery placing a metal plate on her chin and circumdental wire to stabilize her jaw, and sutured her facial lacerations. in addition to the jaw fractures, x-rays revealed that she had inhaled teeth and bone fragments shown in her right lung and mid esophagus, as well as in her stomach; furthermore, she had bilateral interior pubic fractures and a fracture at the base of the skull compromising the brain stem and medulla. in fact, she began posturing (effect of brain stem injury) at the scene of the accident.
notably, it was dr. wareham who saved katie's natal life as he was on the 101 fwy that infamous eve and witnessed the collision. he stopped to help. when he got to katie's side to assist, she was already unconscious, blue, and not breathing. his instincts told him that he needed to cut her throat to make an airway. he was willing to assume responsibility for my daughter's care, as paramedics do not allow such intervention out on the field. the problem was that he did not have an air tube. fate was that a respiratory therapist happened on the scene, and he had the life supporting tube. dr. wareham obliged his medical oath by intubating katie at the scene of the accident, something unheard of. had it not been for his intervention and willingness to assume responsibility for katie's life in her darkest hour, damion would be facing murder charges.
the first seven days, a group of seven doctors did not think katie would survive. i was so impressed with the medical care my daughter was receiving from the team at the intensive care unit (icu) at los robles medical center. my other children and i camped in the icu waiting room, taking turns to be with katie when allowed. those were the longest days of our lives as we monitored each heartbeat and her intracranial pressure, while she lay lifeless and distorted. her severe tbi meant she had cerebral contusion and edema. dr. murthy, the neurologist, explained to us that her entire brain matter was swollen and bruised, while bloody and flooded with excessive fluids.
after the seventh day, when doctors believed that she would live, her medical care slowly and surely began to decline. by the sixteenth day, the burden of her care fell on my shoulders, as her medical insurance would not cover her range-of-motion exercises. to prevent permanent damage to the use of katie's hands, arms, feet, and legs from her "bilateral decerebrate posturing" for such a long time, i had to set up a schedule to exercise katie's limbs three times daily. this was needed so that when [and if] she woke up from her coma, she could have full use of her limbs. it was no easy task. it required our training and daily balancing act to perform the needed limb-saving exercises amidst her critical care. katie was in intensive care 26 days.
through katie's 31 days of acute and intensive care at los robles hospital, 46 days in sub-acute care at topanga terrace, 30 days in acute rehabilitation at northridge hospital, and since her homecoming on november 11th, i have had to struggle and fight to get katie the necessary [and desperately needed] resources for her continued medical and rehabilitative care. my relentless efforts to provide the care that katie needs have been a key factor in her miraculous progress. the trials and tribulations i have had to overcome, while fighting for katie's care, are too numerous to mention in this space. all the while, foolishly i trusted damion's and leanne's claims that they were "going to do anything and everything they could to help katie." the $1,000 check leanne gave me for katie in january led me to think that they were willing to assume responsibility for the damage done. it was the tantalizing carrot that had me believe in their promised help. for almost one year, they have been telling me, "in two weeks i will have a check for katie." the amounts quoted have been $10,000, $20,000, $40,000, and even $100,000. damion told me that he was working with his grandmother to give katie his entire $100,000 trust fund his grandfather left him. all the while, i have been asking for their help and waiting. for instance, well before i resigned from my positions at csun due to the high cost of caregivers, i asked damion and leanne to pay for a caregiver so i could keep my jobs. the standard answer was, "we'll have some money for katie in two weeks." we are still waiting for their restitution. their negligent actions show no remorse over the impact that the collision has had on katie and her entire family.
katie now waits for funding for her much needed extensive, lengthy, painful, and very complex reconstructive inpatient surgeries of both the maxilla and mandible (upper and lower jaw), and eventual teeth implants. to start with, she needs two maxilla surgeries for bone implant and growth. this process takes between 12 to 18 months. next, she needs orthodontic treatment to repair and align the remaining teeth. this process takes between one to two years. then, she needs the mandible surgery, in which they have to re-break her lower jaw in three places to re-align the bones. this process takes about 12 months of healing. and finally, she would be ready for the necessary implants of her missing teeth. months ago, i told damion to do a fundraiser to get the approximate $70,000+ that katie needs for these surgeries and teeth implants alone. he "promised to help katie." even with the extended sentencing hearing, damion has continued to avoid his responsibility towards katie, myself, and our family.
during all this waiting, katie's speech intelligibility was deteriorating due to her missing teeth. she was forming the sounds in her throat, a habit that once formed, according to her speech therapist, is impossible to rectify. in desperate need to get katie the medical care she needed, i began charging the expenses for her treatment plan consultations and variety of test at the center for corrective jaw surgery in santa barbara, and temporary partial dentures from ucla's maxilofacial ctr. on my visa. the local oral surgeons, who had done the emergency care, said they had done all they could due to lack of funding. while her temporary partials assist katie with her speech, they are useless for eating as they constantly fall off because of the lack of bone and teeth to hold on to. she cannot even suck on a cough drop with them on.
to bring katie home in november, instead of institutionalizing her, my son shaun moved out in october to make room for his sister. this permanently interrupted his affordable plan to live at home while he pursued his associate in arts degree. additionally, in january shaun had to be hospitalized due to major depression and major anxiety disorder affected by the added financial burden and his fragile mental state experienced since katie's tragedy, as it compounded his familial losses. following his hospitalization, shaun lost one month of work, and worst yet, his desperately needed medical insurance on my plan, as he could no longer be a full time student. this exacerbated his frail mental state, and at the same time delayed his career opportunities as a graphic artist.
having katie home took a toll on christina, her younger sister. a senior in high school, christina had difficulty coping with school, work, and every day life with her now ôbaby' sister, a tbi survivor. to manage her life, christina needed to move out, unexpectedly, during her last semester of high school. the ripple effects of this tragic collision forced christina's premature departure from home.
personally, damion's actions ruined my career plans that i was diligently working on since 1994, forced me to resign from positions at cal state university northridge (csun), turn down job offers, and delayed my master's degree to care for katie 24/7. being a single mother since 1989 and raising my four kids on my own, i was eager to put my parenting ôon a backburner.' my plan was that by 2005 i would be working abroad as a documentary photographer in ecotourism, having my master's degree completed and with christina, my youngest one, in college [she starts this fall]. my curriculum vitae [attached] is an indicator of my career pursuits. in addition, having already received one fellowship, i was confident that my last two years of graduate school would have been fully funded. this opportunity was taken away through damion's actions, as i can no longer meet the criteria, not even have the time to compete for the much sought-after fellowships. not only did i lose the opportunities for the fellowships and the recognition, but also i was forced to extend the duration and cost of my master's degree. this translates into $45,052 of additional expenses ($15,684 annual graduate student budget x3), for me to complete my degree and the loss of about $20,000 annual income from my part-time positions at csun as campus photographer assistant and part-time lecturer, and my freelance work, while being forced to decline teaching two 12-week photography courses to at risk youth paying me $18,000+. furthermore, the massive financial impact that damion has burdened me with due to his irresponsibility has been compounding since july 31st, from missing work, to having my mother fly in from abroad, to moving katie's belongings into storage, to buying a storage unit, to moving her belongings again, to purchasing clothing for her various stages of recovery, to the cost of alternative medicine and practitioners, to the expenses for preparing the room for her and transform the house into a handicap-friendly and therapeutic environment, as katie came home in a wheel chair from a veil (enclosed) hospital bed. now we are in jeopardy of losing the home we have lived in for thirteen years due to financial strife.
tbi experts claim that tbi does not happen to an individual, it happens to a family. indeed this has been our case. they also claim that the support nucleus of the family becomes smaller and smaller as people in general have a difficult time being around disabled individuals. this effect has been experienced by every one of us, and worse yet by katie. out of the numerous friends katie had just one year ago, only two come around occasionally. tbi experts also claim that the average cost per tbi survivor is 4.5 million dollars. the perpetual and ripple financial impact this tragedy has had on the family is enormous. this year alone, i have driven over 9,000 miles taking katie to therapies, doctors, and tests. to date my out-of-pocket expenses alone total about $37,000 (see attached list), in addition to the pending funds needed for the surgeries, my loss of income and teaching job opportunities. meanwhile, her los robles hospital bill alone came to $294,000+, and to date medicare as paid over $163,000 (see attached list), for her medical care.
in summary, katie's loss extends far beyond the physical, mental, and emotional lifelong disability caused by tbi. she is now a child trapped in an adult body needing diapers and someone to supervise her 24 hours per day, seven days per week, with no chance to ever drive again in her life. no week goes by without me having to get up with katie in the middle of the night. her life now consists of mostly mom, doctors, medications schedules, and therapies to work hard on her progress daily. the disastrous ramifications of this collision have permeated our family, forever affecting the dynamics, while imposing extreme financial burdens. although i am a believer in restorative justice, damion's lack of responsibility and remorse towards katie and her family during the first year of this tragedy are appalling. he needs to be made accountable, as katie will have the effects of tbi for the rest of her life. to this extent, he should be ordered to make financial restitution comparable to the losses our family has encountered thus far and its lifelong burden. also, he ought to do community service helping tbi survivors and their families so he becomes aware of the impact of his actions. i wonder if he has bothered to learn about what it means to be a tbi survivor? "brain injury is forever, get involved" www.headinjury.com.
your honor, i hope this letter helps you understand the severity of the effects of damion's actions on katie and her family, and why i am asking for restitution. i ask for the restitution payments to be ordered into a special needs trust, so that katie does not lose her much needed benefits. i request to have his wages garnished as long as katie lives, because we will live with the effects of her injuries on a daily basis for the rest of our lives. finally, i wonder if there is a possibility of having a lien placed on damion's trust from the magglos family trust that is payable to him when he is 35 years old?
sincerely,
veronica martain-haverbeck
ps: your honor, i would like to share with you a quote we have had on our refrigerator since august 2003: "true justice never punishes for the sake of punishment, but instead seeks to provide the experiences that will educate and reform." ~john robbins
[09.07.2004]
time continues to whirl by, except in ktb world. for her the main concerns are her meals, her meds, and who will play what game with her. that is when she is not thinking about ôguyõ and relationship subjects. whatever pops into her mind, she acts on it immediately, without forethought of appropriateness. socially appropriate behavior is something most tbi survivors can be challenged with.
no one doubts the remarkable progress she has made. as one said, she is doing real good for a dead person. no pun intended. while her progress as brought about more mobility, self-initiative, and some independence, there is the other side of the coin as with every child testing the waters. as sweet as she is, in split second, she can be right down ruthless. teaching consideration, kindness, and appreciation are no easy tasks. i have had some quite unpleasant moments in public with her outburst, and have been quite offended in private with her rudeness. impatience, impulsivity, and short temper are also common among tbi survivors.
this week marks a milestone as her therapies end. it leaves her in a state of confusion and disorientation as the next phase is not yet in place due to the bureaucratic nature of the department of rehabilitation and our lack of access to rehabilitative services. she is confused as she does not know what is ôhappening,õ in terms of structure to her day. she most definitely needs constructive organization to her schedule, along with the one-on-one work setting. not to say she could not do something independently, still she needs that eagle eye to steer her away from trouble/mischief. i have witnessed this while trying to study with her just in the other room.
so it is some 13+ months since òtó day, and we are down to practically no assistance. no therapies, no social worker, no psychological therapy, a pending $100,000 reconstructive surgery that i must figure out how to fundraise for so she can have teeth to eat with, and her constant needs and demands. yes, i m exhausted. and in all my wallowing [or venting space], i must recollect and thank all those who have made and given time to help out. i am too tired to name names, but you know, and the great spirit knows, who you are. i am most thankful for your kindness and generosity.
next week is a busy one for us. tuesday we finally have the conference with the surgeons involved with ktbõs oral surgeries for the final probable treatment plan. many consultations, months, test, models, and thousands of dollars we can begin the quest to champion for the means to get ktb teeth to eat with. hopefully, that day we can schedule the first surgery, as it is a 3 +- year process. then i have got to put into motion the fundraiser(s).
wednesday we go to small claims court to get an order for ktbõs security deposit from her slumlord. may the force be with us!
friday we return to court for the sentencing hearing. i can only hope and pray for restorative justice: make the driver accountable for his actions, make him pay for ktbõs needs as long as she lives. thus far, i am the one left with the duties of her every day care.
i have gone back to continue with my grad school courses at csun. ktbõs care is still on trial and error. i tried taking her to school with me hoping to inspire her, but it backfired. in fact, these days it is hard to get ktb interested in doing much of anything besides play games and eat. how can one teach enthusiasm for learning if not by doing?
as its been said, do not give up hope.
we are still waiting ðstarted the process in june- on the approval for a room to use for a brain injury support group in thousand oaks. i have contacted every official in the chain of command, including our county supervisor. we are still waiting. tbi survivors and their families are no priority to anyone else
::veronica
[05.14.2004]
today was supposed to be a day of celebration of sorts. nine and a half months in the waiting, akin to the birth of a child. except the expectancy was that of katie’s front top teeth- the ‘temporary partials.’ as i drove her through stop and go traffic in the heat of the concrete jungle, i asked katie how she felt, she responded, “anxious.” anxious as in happy or anxious as in worried i implored. anxious as in happy she quickly replied. for some unknown reason to me, i felt an underlying disturbing current. consciously i knew that i was so happy for her to finally get some upper front teeth, thanks to my visa. it pisses me off that ucla’s dental clinic- a state institution- does not accept either medicare or medical [both state and federal health care programs], the only access to medical health care my brain-injured, disabled daughter has. capitalism at its worse.
interruption. as i sit here trying to cope with the pain, despair and rage i feel, i hear a motorcycle start up right in front of my house. when katie and i pulled up and i saw it, it had that post-traumatic symptom effect on me: the horrific night. the life altering phone call. the apparent eternal drive to er. the first sight: a disfigured face in hues of purple and red, blood oozing out of every orifice, bloody hand, shoulder, knee, feet. a product of her body’s encounter with the 101 fwy at 100 mph. tubes running through her withering body. death was in the air. the motorcycle revs up again. i intellectually understand it is a public space. i cannot bear to hear the sound that in a distant past was a turn on and a thrill to ride. i walk outside and ask the innocent bystander to never park in front of my home again with the brief explanation. it was the only thing at that moment that i could do something about the devastation and pain i feel. he apologized and promptly left. i return to my home. katie asks what is wrong as the red patches on my face reveals my crying. “i just need time alone.” i quickly tuck her in, put her diaper on, and kiss her good night.
back to ucla and our big event. i had anticipated how wonderful it would be for katie for finally be able to eat artichokes, bite into foods, to have a more decipherable speech, and most important in her eyes – to ‘have a smile.’ i always answered to that comment, “ you do have a beautiful smile, even without your top front teeth. hindsight, as trendy as ‘big, bright, white smiles, became, in her previous life katie took great pride in her $3,000 smile (braces her paternal grandparents paid for), and then the bleaching treatments she paid for to get her teeth ‘fashionably’ white.
we arrive at ucla somewhat late to our appointment after hustling friday traffic. once in the parking lot, i suggest to katie to practice her ‘speed walking.’ she willing obliges holding on tight to my hand. we get to the maxillofacial clinic. my heart is beating fast with anticipation. we check in. quickly we are called in. katie sits on the dental chair. soon dr ting-ling chang appears. the long awaited moment is here. within a few blinks, katie’s temporary partials are in. she smiles. i cannot believe my eyes. wow! beautiful top, front teeth. but, who is this person before me? i snap a few shots. she experiments putting them on and taking them off. tears well up in my eyes and i cannot contain them. dr. chang states, “momma is crying. are those tears of joy or…” not wanting to tell, i say “joy and…”
while i have adapted very well to care for katie in this altered life, and adapted to her transformed image, the sudden blunt visual of the irrevocable transformation had me speechless. how can i explain, or put into words? i have said that my daughter died. the katie we all knew died on that tragic night, she left this earthly realm, and in her place we have a resemblance, a new being for better or worse. and maybe it is still too soon to understand why it was that dr wareham and the incognito respiratory therapist would revive her and forge her into a new destiny. what in the bloody hell gave them that right unless they were going to care for the remains? why is there such heroism in saving lives, yet such killing-me-softly unspoken abandonment? i know i write out of sheer pain and agony because the truth is that only those who have walked this forsaken path can comprehend.
interruption 2. the driver’s mother just called. we spend a good hour or so on the phone. as usual, i mostly just listen. i have had a very hard day and i am trying to at least process some of my pain and sorrow through the written word. that is irrelevant apparently. her concern is her son’s pending prison sentencing and their efforts to make him accountable in their terms. no doubt that the driver’s pending prison time will not help katie. i have told them from the beginning that what they can and need to do is to be paying for katie’s care now. ten months later, well over $500,000 in medical costs alone, not counting job loss, time and energy spent driving to/from while being in medical institutions; exponential pain and suffering, and so on, i have received $1,125.
meanwhile the mother tells me that she has spend close to $100,000 trying to save her son’s life. lucky for him. i can understand and empathize how alcohol has destroyed her family’s life. it has run rampant. it is a disease that kills, if not, maims. it cripples and debilitates and god only knows the cost inflicted unto society. and why is it that the alcohol industry has never been made accountable for their harmful product as the tobacco industry has? i know that they are powerful, and apparently have all the politicians drunk in stupor to do anything about it. all the while, our society is rapidly deteriorating with one addiction after another. so much for ‘progress.’ as mothers, we have both suffered a great tragedy and loss. however, truth be told, i was not the one to tell the drunk son to get on the bike and drive katie home. that is a heavy cross for her to bear. meanwhile, she marvels at the progress her son has made in his sobriety and tells of how much better equipped he is now to ‘assume responsibility for katie financially, if only he does not go to prison.’ i am not the one who will be judging this case, and apparently whatever i have to say as the mother of the victim has little meaning as the probation officer has already made her recommendation, without any of my information that i have been gathering. after my own personal setbacks with dis-easses and ‘finals’ in graduate school, i asked for a continuance of the case. i reckon the deputy da was right on the money when he informed me that they were not there to represent katie’s interest. they were there to prosecute a crime. to get katie’s interest represented in court i need to hire a civil attorney for which i have no funding. besides lawyers are the only ‘winners’ in this so-called justice system. the bottom line is that i am alone in this struggle. day in and out, hour after hour, meal after meal, therapy after therapy, i must keep fighting for katie’s well-being and her hailed ‘progress;’ yet i feel utterly barren.
right this all started with our long and awaited trip to ucla. so why would i be crying upon seeing my daughter’s brand new temporary partial dentures on her innocent face? as she said, “they are straight and white!” what more could i ask for? the only way i can explain it is: imagine someone taking your young, beautiful child, and in return receiving a frankenstein sort-of version. it is similar, but with a different gait, a different head on, a transformed face, different sounding voice, legally blind, without a sense of smell, with a different way of thinking and cognitive skills, yet above all as loving can be. frustrates easily, mostly content with eating, sitting and sleeping, playing uno and go fish, and occasionally visiting. why should i cry? what is the pain i feel inside? it is the bloody honest truth staring me in the face: desperately needing to accept what is. she is with no doubt still my child, just a different one. i can accept a different child much easier if it did not have to be in the shadow of her very own past. still, i cannot change, nor choose what is. acceptance. may it impregnate my being.
what i desperately need is the space to mourn my child lost. i have been so busy caring for the remains of her ghost that there has been no such luxury. at least this is the luxury i am allowing myself: to bare my pain and expose it to the world in hopes of healing. may the angels and great spirits guide my path to redemption from this nightmare. may i find the way to make the good happen in our lives from all of this misery, for this is the only purpose i can fathom. may we be vessels of peace and inspiration and comfort to others.
without a doubt, i am most grateful for the great ‘progress’ katie has made. seeing those bodies trapped in limbo for years was sheer horror. i am most grateful to those triumphant souls who have accompanied us in this tragic journey; one i do not recommend nor wish on the worst of human beings.
[04.21.2004]
kt told me today that she cannot taste. she said she regrets seeing damion, "i lost my teeth for that fool."
::shaun
[04.14.2004]
kt is making progress everyday. she is walking with out a cane or walker.
::shaun
[04.02.2004]
kt had an appointment with a dentist for the initial assessment for new teeth.
::shaun
[03.27.2004]
it almost feels as though we have been in this abyss, far in the depths of the tbi world where eventually it gets smaller and smaller, or is it bigger and bigger?
our family currently has a resemblance to a house of cards that falls apart easily and is quite difficult to put together again....and i never forget that i am a survivor indeed...
truth is we are all struggling, yet we all appear strong before ktb. in her world, everything is great. and as a mother, i am grateful for that feeling of reality for her. heaven knows i am working hard to provide the safe haven kt needs for her journey, or could i really call it recovery? frankly, i do not think it is a recovery process, rather a birth along with its continual growth. those who are near her see the distinction: we marvel at her progress, yet are keenly aware [i hope anyway] of the transformation. even if at times kt's previous life's characteristics surface, one knows it is of another lifetime. serendipity has it that i would have saved a birthday greeting from kt on my answering machine from 2002. that voice tone compared to the current is a stark reminder of what was and what is. then i remind myself: life is change, always and continually....
for those, if any still...., wonder how kt is doing: she continues to make progress. it has been her m.o. all along. and as the mantra goes...polé, polé [slowly, slowly...i dream of kilimanjaro's summit.. and the lesson learned] all the the way to the top. outpatient therapy 3x per week has been wonderful. kt blossoms continually. she loves cooking with cheryl in occupational therapy [maybe most of all?]. she baked a grrreat vegan chocolate cake for shaun's 21 bday [yes w/ help, but oh well..]. takes great pride in her homework for ashley in speech therapy, and willingly complies with physical therapy [even if she gets "exhausted" ... picture those sad puppy eyes]. pushed her we have and with great results: kt's stability has improved a great deal [went from a wheel chair, to a walker, to a walking stick], initiates many of her self care needs [bathroom and grooming], not to mention the more-often-than-not getting-up-in-the-middle-of-the-night-to-have-cereal. yeap, how can i forget that task of feeding ourselves! yeay kt, you rock! she has accomplished many of her goals already, such as picking out her clothes, dressing herself, brushing her teeth, washing her face, putting away the silverware, walking around the block, and even walking on the beach! it has been my pleasure and delight to be part of all these milestones and much more. just wish that all the other nuisances of daily rat life would leave alone and let us focus on just what truly matters on this earthly existence: our quality of life. the obstacles i/we face are so great that i do not even have the energy to express. the rat race goes on, yet my daughter's life does not wait. every moment is precious/a milestone/a miracle.
::veronica
[02.16.2004]
kt is improving with her writing. she made a pizza yesterday. more shortly.
::shaun
[01.16.2004] day 179
it has been a good week for ktb. we started with outpatient therapy, and i am encouraging kt to work harder. as of wednesday, we have been walking all the way around the block, at least once per day. the next goal is to try to do it faster little by little.
this morning she was kind of quiet on our walk, and i asked her why she was so quiet. with a very low voice, she replied, 'there are bad people out today.' when i asked what she meant by that, she said, 'there are just bad people today.' i sense the times when she 'checks out' and visits other spheres. each day with kt brings various surprises, and at times it borders on the surreal, while others provide good hearty laughs. the great news came: the glasses are ready! tomorrow kt will see the focal plane that she does see much better. it caused us to celebrate. tonight we were watching the movie frida at home, and when frida's sister, christina, was giving her a shot of morphine, i turned to kt and said, 'hey you were on morphine 45 days!’ she turned to me an gave me the biggest grin, and we both broke out laughing, knowing all too
well the underlying meaning. i said, 'guess you don't remember any of it.' kt, 'nope.'
::veronica
[01.15.2004] day 178
kt reached a goal of hers to walk all the way around the block. she is working very hard to recover. her speech has noticeably improved.
::shaun
[01.11.2004] day 174
slow progress. motor skills are rough, there should be an improvement once kt has her glasses. it seems that she cannot control voice inflection. kt and i played halo on xbox; i had here follow my character around. she did well, and enjoyed herself.
::shaun
[01.09.2004] day 172
mr lehmann [shaun's friend's dad] posted an ad for us today in a local paper for a caregiver for kt. the phone was ringing off the hook. guess we shoulda/coulda done that much sooner, but as i have said, i cannot keep up with all i need to do. all will not be lost as i will interview these callers to have someone to hire when i do get a job that pays me a wage comparable to my skills.
ironically, today i resigned from job at the university as campus assistant photographer [with student assistant classification] as i could no longer afford to pay for kt's care more than what i made. i could no longer wait to find someone private to care for kt. i simply could not afford to keep paying the agency gal. the funds were not there. it was a very difficult decision for me to make as i really enjoyed my job [how many people can say that?], even if i had 'outgrown' that position. i have been a nervous wreck, the headaches have been really bad, and today i had to medicate myself [truth be told, with all the meds i could], between trying to manage my ripping headache, and basket case condition with my nerves and crying. i cried all the way to work, and even as i told my boss, lee, my news. not only was it hard to let go of a job i liked, but also, the fear factor of the uncertainty was huge. while i am very busy with kt's care, i will need to manage to make time to write proposals for a brain injury documentary, to develop my freelance photography work, to make greetings cards to sell, to re-launch my web site, and to look into joining a photo agency to start selling some of the stock photos i have, and to find a real estate investor. i will need some magic potion to give me the energy as i am so tired all the time. i wake up tired and go the bed exhausted.
but enough about me, kt has a cold and feels 'crappy.' she just got it yesterday. so i guess i'll be letting her just rest, recoup and heal. however, tomorrow i'll be taking her to the optometrist to pick out her glasses, so than in about two weeks she can see better.
the sobering concluding consideration of the day: according to chapter 1658 of the welfare and institution code [usa?], brain damage/injury is defined as 'the significant destruction of brain tissue with resultant loss of brain function. 'this affects a person's behavior, personality and the ability to perform daily activities of caring for oneself. we witness this on a daily basis.
::veronica
[01.06.2004] day 169
today was one of those days we have been waiting for months: finally got some need diagnosis. kt and i went to see dr. hymas, the ophthalmologist. he was very kind, with great bedside manners, and very compassionate and optimistic. we were there 2.5 hours, they did many tests, and we waited for the results: left homonymous hemianopia from right-sided brain injury, which means she is legally blind, but unquestionable that with glasses she will see much better. also, she does not see left side at all. it is very important for those around her to be aware of this for her safety and that of those and things around her. "this is a permanent deficit. everything is static, nothing will change." he also observed that she has mild optic nerve damage due to the traumatic injury to the brain compromising the optic eye. he emphasized that glasses will help her tremendously, so we will be off to see dr star, our optometrist [who takes medical]. as medicare does not cover glasses.
it was quite a day. one of those very full days: kt woke up at 7am, and wanted me to be up with her. i had stayed up late reading, and i was soooo tired. i got her up and to the bathroom, then helped her sit down in her bedroom chair. i laid beside her, in her bed without a hope to snooze no matter how i tried. i was trying to keep her entertained by having her sing, yet i had to keep prompting her. after a breakfast of yogurt and papaya, we were off to her room to get her dressed. we were just about done, and suddenly i saw the face and quickly grabbed the trash can just in time to catch the vomit. i felt so badly for her. quickly grabbed a wash cloth while christina held the bucket by her face. rinsed the cloth with cold water, and placed it over her head, as tears rolled down her red cheeks. after some 8 mouthfuls of vomit, she could finally catch her breath. i said maybe you better just lay down and rest. she had been eager to go outside, in spite of heavy winds, for our morning walk. while at the dr's office, 5 minutes after me asking if she needed to go to the bathroom, she had an accident on the dr's chair. we both just started laughing. i said good thing i carry an extra set of pants for you in case this happens [a wise tbi survivor, lois, had advised me]. this is a very common thng with tbi.
::veronica
[01.04.2004] day 167
kt has been taking longer walks outside [previously a few houses up the street, now just around the corner]. she is progressing with feeding herself. soon kt will be going to a specialist to assess her vision. later this month kt will have an endoscopy to see about her frequent vomiting. we have acquired the name of a psychiatrist as well as a psychologist that accepts medical, so they will be contacted soon.
we are looking for a compassionate and reliable caregiver to help out 20 to 30 hours a week [$9 an hour for the first month, $10 thereafter]. please contact veronica at 805-498-6851.
::shaun
[12.30.2003] day 162
yesterday, december 29th, ktb and i had a very busy day checking out outpatient rehab places for her, as her in-home therapies stop tomorrow. she did so well, as we had a lot of driving to do. we checked out the out patient facility in oxnard and one in santa barbara. then i took her to my friend's [berney] place to let her take a nap. on our way home i asked her, if you had just one wish, what would that be? ktb: 'i would get on a plane and fly to chile.' so i told her, 'that's great, we can make it our goal: spend next xmas in chile.' she had a big smile on her face and said that would be wonderful. so now you know; you can help us make it happen.
happy new year! we trust that this will be a much better year for our family, and pray for peace and good health for all.
::veronica
[12.29.2003] day 161
kt lost her balance when trying to sit on the toilet. her hands were on the chair, but she swayed and hit the tile floor. after going potty, she was feeling extremely dizzy, she couldn't stand on her own, so i took her to her bed. she had a small contusion above her right eyebrow for a short while, and said that she her hip hurt. soon after she said she was feeling better and wanted to return to the movie she was watching. she asked me if i was ok, as no doubt i was very worried.
...kt asked me if i was ok.
::shaun
[12.23.2003] day 155
today, tuesday, december 23, was our big anticipated appointment with dr murthy, kt's neurologist. christina came along, and took kt back home, so i could get to work. robin, an agency caregiver was coming to care for kt. dr. murthy, in his usual cool, clam, and collected manner, begins by informing us that the eeg was ok, although the electrical activity is a little slow [8 cycles per second, versus the normal 10]. time will tell the progress, but it should improve. there was no indication of seizure activity, however she is on anti-seizure meds. then he said that the brain scan 'showed that there was no brain.' ‘bad attempt at a joke’ i replied. then, he stated the brain scan was ok, there is no hemorrhage now, but she has mild hydrocephalus [fluid in the brain]; this will be monitored with another mri in 6 months. there is sinus inflammation. she is coming along, slowly, but surely. he referred us to a psychiatrist [was shocked to realize that she has been abandoned by the medical system with her psyche needs]. she needs to be under someone's care, because he cannot help with that. when i mentioned kt's projectile vomiting episodes, he referred us to see a gastroenterologist. when i inquired about kt's double vision and dizziness, he referred us to see an ophthalmologist. he was ready to let us go, and then i said what about the treatment plan for kt. he ;looked at me a little dumb founded, saying something like: well what she needs and what she can get are two different things. i need to find out what programs she qualifies for, check out st john's in oxnard. what about the incontinence? 'in time, it should improve.'
ok, so in addition to me keeping up with kt's daily care, i need to get a gastroenterologist, an ophthalmologist, a psychiatrist, and a psychologist - all willing to accept 'medi-medi', which were we live, they are a rare breed. but this is not all, the list goes on. the in-home therapy she has been receiving is coming to an end this month. i have to find an outpatient treatment facility. choices are limited, but gotta make the effort to check them out: st john's in oxnard, solutions in santa barbara, or there is northridge outpatient, but honestly, the experience was so bad there, that the idea of going back there, even if it is a different program, makes me cringe.
we did finally get to see a dentist yesterday. of course, one who accepts 'dentical', the state funded program. every one knows that you can only get very minimal care. when they saw her, and yes i did take one of her photos of who she used to be so they could see the beautiful teeth she used to have, and they are apologetic because they tell me that all they can do is request for the crowns, gum treatment, dentures [etcetera] that she needs; but we will have to wait and see what they will authorize. we should know in two months or so! never mind that her missing teeth are quite essential for her speech and eating.
and yes i cannot forget that i still have to find a caregiver. rocio is gone, and i only have robin through an agency, which i cannot afford. of course i am grateful for the great progress that kt has made. what a miracle she is. i have no doubt that the loving care she gets at home is making a great difference. imagine how much further along she might be had she received the care she needed all along. the images of the people i saw in sub-acute care at the goleta hospital are imbedded in my brain, and i give thanks that kt is not in that vegetative condition.
however, i always try to avoid comparison: there are always more fortunate folks, as well as less fortunate. the bottom line, is the reality of our lives as no one walks in our own shoes, except ourselves. i echo the sentiment of a tbi survivor who titled her article ‘don't tell me how lucky i am.’ shaun is right indeed; i scream into space: ‘please help!’ i will not deny my anger, frustration, and angst. day to day, i focus on what must be done: kt's most immediate needs: the basics. and there is so much more that i simple do not have the time nor energy to do that must be done. and the days turn into nights and the nights into days, one hundred and forty-five and still counting. and the to-do piles keep getting higher.
and what's up with damion? the da's has a big hard-on to put him in prison. what about kt's care? will his being in prison help kt? the da's office does not care about kt's welfare, just about their own scores.
oh, yeah, i almost forgot, it is xmas. we no longer even celebrate jesus' birth [too many people have been killed in god's name]; just a time to spend with family, and we have to get away from that present-buying-trap because none of us in this family can afford it. at least there is a new year coming, and i hear that the stars and planets are going to be kinder to us humans. it has been a very bad year for many.
so hang on to hope.
i hope for the vision and the actualization of the good that will come from this tragedy. i am telling kt that she will be famous, more important, she will make a remarkable contribution to this sick society of ours. and i'll be there right along. this is a story worth sharing. for those of you who pray, pray for the resources needed to care for kt and for grants for her documentary.
may 2004 bring peace, good health, and happiness to all.
::veronica martain-haverbeck
[12.21.2003] day 153
kt’s belongings are finally in the shed. kt is doing well with helping herself up, and going to the bathroom. things are rough, it is hard going to the house to help out. it is beyond my comprehension as to how veronica does it. amazing. the internet's ambiguous grandeur can be so misleading, we are screaming in space.
::shaun
[12.21.2003] day 153
a sample day with ktb: friday, december 19, 2003.
7:00am » wake up thinking about the busy day; get up. start getting things ready for ktb. get clothes out, shoes socks, etcetera. go prep white sage tea. get dressed. 'time to rise and shine kt,' open blinds. kiss her and kiss her. 'it is a brand new day, time to rise and shine.' ktb: 'nope.' 'let's take you potty.' ktb: ‘ok.’ we walk to the kitchen to get breakfast. walk back to the bedroom to get her dressed.
8:30am » llori-p/t arrives. got to go with christina to drop off her car. call cathy, next door, to help cover me, while i go help christina.
9:30am » back home. cathy with ktb. maria from ihss home to train on time cards.
10:50am » got to get ready to go see dr wareham [who saved ktb's life at the scene of the accident. he saw the accident and stopped and did a tracheotomy on her right there]. informed him that ktb had been projectile-vomiting the night before [fourth time since being home]. he performs a-something-oscopy, looks down into kt's throat through nose with a scope. no obstructions found, but reflux discovered, and reddened vocal cords. referred to gastroenterologist.
12:50pm » home. ktb very tired. does not want lunch. she has been sad all day long. puckering off and on, welling up in tears...'i miss daddy....why did he go?....i miss daddy.’ on and on. heartbreaking. i try to find ways to bring comfort to this mourning, to little avail it seems. 'please take me to bed mom' she begs me. ‘ok, but i'll have to bring you your lunch to bed.’ ktb: 'i am not hungry.' ‘honey, you need to eat something; i have to give you your meds.' ktb: ‘i am not hungry.' dialog goes on, until i get an ok to eat.
1:00pm » i try calling the aide to not have her come. she arrives and kt is exhausted in bed. we re-schedule.
1:10pm » i bring her lunch to bed: scrambled eggs, crackers, cucumbers, carrot juice. she eats a little bit. 'ok, i am full now.' she has had maybe 1/4 of her small plate of food. she gags with her last bite. she implores to sleep. i tuck her in and kiss her, wish her a good nap.
2:00pm » neighbor helps install grab-bars for the bathroom; a long project. ktb sleeps.
4:30pm » ginny, o/t, arrives. ktb sleeping, but wet. i kiss and wake her up for a quick shower. resistant. o/t tells me she can do that herself. ‘really?’ i said. she assured me. i observe kt refusing her orders to get in the shower. it is a struggle. i think, 'i told you so.' even if it is only in my presence; it is my reality. egos battle and in the end, ktb agrees to get in the shower, and we get the job done. clean pjs and feeling better.
5:30pm » go to the kitchen to prepare dinner. ktb claims she is not hungry. i tell her she needs to eat. knowing that she may still be queasy, i offer just simple boiled pasta. she agrees. i start prepping dinner, cut up some cucumbers. try to have her eat some. ' i cannot'. we battle. i help her. noodles are boiling, kt begs, 'please take me to bed now.' ‘i need to give you some dinner to give you your meds.' ktb ‘ok.’ she eats a little bit, and is done. i try to clean up a little bit first. suddenly, she begins to throw up quite violently. i grab a big bowl to hold for her. she fills it up and is covered with vomit, and the kitchen is splashed with it, i am splashed with it. i get a cool rag for her forehead. her eyes are filled with tears, face is all wet. i grab as many towels i can.
somebody, help us please... it is just the two of us.
her hands are drenched with vomit. ok. i keep my cool. i feel nauseous. 'it is ok sweetie. sorry you got sick. i'll help you clean up. let's get back in the shower.' she faintly agrees. i shower her again. she is cold and looking very pale. i get her dried up and put on some clean pjs. put creams on again. kiss her and tuck her in. she is exhausted. just wants to go to bed and sleep.
7:00pm » i go clean up all the vomit. the kitchen reeks. i do a load of laundry, scrub the kitchen sink. i am exhausted.
8:00pm » log on the internet. i need a digital slr [camera]. i am losing jobs for lacking one. in the back of my mind wondering how to make it, things are not adding up, and it is too expensive to hire care for kt for me to keep my 20-hours-per-week job at csun that brings home a lousy $1,000+/- a month. have e-mails with good ideas. need time to follow through. my desk is buried with paperwork [five months worth]. i can barely meander through my stacks and piles of papers in my office. camera equip, kt's files, everything overflowing, piles of unfinished business. i remember kt saying to me that it was bad fung shui to have clutter in office.
i need help.
there is so much i need to record, so much to do for kt's care, i am not keeping up. gotta figure it out.
8:30pm » i wait for kt's 9pm meds to go to bed. my back throbs with pain. can't wait to go to bed and sleep. tomorrow will be a new day. a better day.
::veronica
[12.16.2003] day 140
apparently kt's nightmares have ceased. kt is able to walk short distances unassisted. she is doing better with feeding herself. she misses her dad.
::shaun
[12.13.2003] day 137
kt has had some rough days, with much mental/emotional struggles. not only are they hard on her, but also difficult for us who help care for her. however, i am glad to report that today was a very good day. after a good session with her physical therapist, lori [who we really like because she cares], then she had a massage gifted from a great massage therapist, deedee. after that she had her shower, then i figured she was ready for a nap, but she surprised me by not wanting to rest. that was a welcomed change. she even wanted to go on a car ride with me to the post office, and then we went by in-n-out to get a milk shake. she enjoyed that without any reservation, which was great as lately it has been hard to get her to eat. she ended up staying up until the evening having fun with shaun and kirsten while they took care of her so i could go to work. the best part of this day was seeing her in good spirits. my belief is that having had a spiritual healer here last week and seeing a native american medicine woman last sunday made a profound difference, and deedee's massage helped in bringing all that into a forward transition. many thanks to all those who continue to support us in this journey, and may the great spirit bless you ten-fold.
::veronica
[12.07.2003] day 131
kt has been making progress, little by little. she has seen a few doctors, and today she saw a native american medicine woman at satwiwa. kt is remembering more and more; like her first job at baskin robins, and how to say 'hello' in russian. we listened to bob marley and kt sang along to every song.
december fifth was the anniversary of scott berke's death. we had to tell kt why her dad was not with her. that is fucked up.
::shaun
[12.02.2003] day 126
ktb twelve-days-of-xmas-wish-list-according-to-mom has been moved to the support page. muchas gracias! and happy holidays!
::veronica
[11.30.2003] day 124
kt is practicing walking short distances with a walker. i hooked up her xbox for her, and we played doa3 briefly. she remembered the game and enjoyed playing it. the shed, for kt's belongings, is complete.
::shaun
[11.29.2003] day 123
in keeping with the yin yang of life itself, i'd like to share what it is like to care for kt, and at the same time some thoughts on traumatic brain injury [tbi]. i invite you to check out some tbi sites:
□ http://www.biausa.org
□ http://www.nidcd.nih.gov/health/voice/tbrain.asp
□ http://www.headway.org.uk
and i have only scratched the surface. i feel the need to reminds us that kt is not who she was, she will never be the same. we must accept this as she must cope with it as well. it is important that we do not tell her she'll be back to "normal," or any such thing. it would be a cruel thing to do. yes she will continue to make progress, and the spirit only knows what that means for her. i understand the first year is most crucial recovery wise.
i feel as if i've been thrown into the abyss to care for kt, and i am finding my way through it. some days are good. those are when we are both home doing our routine, her pain is under control, we take baby steps, then rest and enjoy the hummingbirds, the flowers, each other's company, we laugh, we share meals. days when we-i do not think about the fiscal realities. then there are those other days, even when after a nice thanksgiving dinner shared with loved ones, it is 4am and kt calls on me. i rise most sleepy to see to her care. she asks me to take to the bathroom. we go. i put on a clean diaper and tuck her in bed. i go back to my bed. a few minutes later, she calls me again. i go back to her room. the same scene. this time i stay in bed with her. a few minutes go by, she says, "honey, i need you to get me up" i say it is 4am, and we need to sleep. she says, "oh that sucks. ok." few minutes go by. she starts again, "honey i need you to get me up...." i tell her i'll get her up when the sun comes up. we go through this until almost 6am. finally we both go back to sleep. then morning comes, and we must greet the day to prepare to go to get the mri. i have to remember that everything takes longer, and that bathroom breaks sometimes can be as often as every 20 minutes, sometimes even less. i had gotten her dressed and ready to go, then had her rest while i got ready, except while i got ready she had an accident. then i had to get her dressed again. now we are running late for our appointment. we get there, and thank [nothing -ed.], things go very well. i believe we got a good mri, which means next time we see dr murthy [hopefully sooner than december 30th] we will have a better understanding of ktb's condition, at least from a physical stand point. we came back home. i asked her if she wanted to sit on the couch while i fixed lunch, she said, "no. please take me to my room." ok. got her there. went to the kitchen, then i hear, mom! i go see kt. "please help me up and take me to your car" i ask why. "we need to go. please take me to your car." we do not need to go anywhere. "please take me to your car now." i tried just taking her outside with her walker, but she insisted on getting in the car. ok. i ask christina to sit with her in the car, while i go fix lunch. lunch is ready and i go get kt. she is in the kitchen eating lunch. "mom please take me to my room now." "kt you need to eat your lunch, then i take you to your room." we go through something like this until, she is done with most of her lunch. i take her to her room, help her get in bed. shortly thereafter, "mom, please help me get up and take me to your house." honey you are at my house. "then please take me to dad's house." i ask why. "i need to go to my room." i explain the current times. "mom, please help me get up and take me...." understanding that she's agitated and confused, i close the window blinds, sprinkle some lavender oil, put a lavender eye pillow on her, put on some soothing music, and ask to breath deeply. after much dialog and encouragement, she relaxes and begins to fall asleep. shortly, the aide arrives to give her her shower. later, christina stays home with her so i could run some errands. i return to find her -kt- frightened. she'd been having nightmares, those horrible nightmares and each bastard that caused them. believe me, it is bad enough living through that once; relieving it in the mind, is torture. more like re-living terrible experiences, clinically called post traumatic stress syndrome. i attempt to comfort her, assuring her that she is safe now, that no one will hurt her. then, in the back of my mind i scream would some one please fucking help her/us! where in the hell are the so-called doctors or experts in the field to help her through this. how do i navigate through this hell? she is in my bed, where she feels safe. tucked in, sprinkled with lavender and many kisses. for now, she sleeps, i hope in peace.
::v/mommy
[11.28.2003] day 122
kt had a pleasant thanksgiving. she ate moderately, but enjoyed the meal nonetheless, particularly the sweet potatoes. kt did well with conversing with her loved ones, and laughed quite a bit. kt is asking for help more frequently, and is very appreciative when she does so. she has become a lot more consistent with recognition skills. thanks pat and amie for preparing the meal.
::shaun
[11.25.2003] day 119
many thanks to all who have taken part in assisting with kt's journey: all those who came to the hospital at the beginning; thanks sioux for being there during the darkest days; many thanks to those who took turns doing kt's exercises [grandma iris, helen, amie, pat, shaun, kirsten, peggy, sioux, christina]. we saved her extremities! thanks to that she can now walk and use her hands. thanks for the meals/food brought to the hospital and the home. many thanks to those who help packed her stuff and moved her 2x [eric, ed, kirsten, garth, charlet, maria, amie, shaun, amanda and friends]. thanks to the shed building team: ed, shaun, and brice. thanks to her room prep team: sioux, cathy c., sean. many thanks cathy b. for helping put that darn mirror film on the window and assemble the bed; kt loves it! many thanks to all of you who have sent/given financial contributions [dave, cathy b, judy, gene, mr luithly, the caseys]. many thanks to those who come and take care of kt so i can take care of the many other businesses [amie, shaun, christina, pat, brice]. i/we could not have done it without your help. muchas gracias por todas las llamadas del extranjero [papi, mami, andres, pablo, christian, tia gaby, gaby, tia nena, gloria, juan, mabel].
muchas gracias, and may the great spirit shower every one of you with blessings of good health, peace and joy. kt's journey is far from over, but she has come a long, long way. nothing short of a miracle. yet she continues to need loving care and support. just hope i have not forgotten to thank any one in particular.
::veronica
[11.23.2003] day 117
kt has a contusion on her right eyebrow, but she is relatively well. today kt potted pansies that are now outside her window. she picked fuji apples from a small apple tree in the backyard. she is doing well with feeding herself and drinking from bottles. she exercises by batting a balloon with a partner, and [assisted] walking with balancing weights about her ankles. kt enjoyed watching contact, and was able to pay attention for the entire film.
[funny-strange-sad]
veronica: do you want shaun to take you for a walk [in the wheelchair]?
kt: nope, i don't.
shaun: how about me? can i take you for a walk?
kt: sure, that'd be cool.
kt has been having terrible nightmares. the origin of which is most likely from previous abuse. kt told me a of horrible memory she has of damion [see day 001] and she almost cried. upon my asking, she requested that we keep him away from her.
::shaun
[11.22.2003] day 116
apparently kt had a temporary loss of vision recently. she was scared and said that she could not see veronica or the room. she has been more consistent with recognizing the people around her. kt sang lyrics to, a no doubt song, don't speak.
kt has an appointment with dr murthy, the neurologist, on tuesday. dr murthy's assessment is long overdue, and should provide useful information. dr wareham [see day 001], the ear, nose, and throat physician, will be seen sometime in the near future to determine whether or not to re-break kt's nose to accommodate her difficult breathing.
::shaun
[11.20.2003] day 114
rosio will only be available until xmas. so we will need to find an aid to nurse kt when family and friends are not available. see calendar.
::shaun
[11.18.2003] day 112
kt heard her hourly buzzer sound and before assistance came for her, she got up and walked to the bathroom all by herself!! while sitting she told veronica that she had a nightmare: damion [see day 001] came to the house.
::shaun
[11.15.2003] day 109
medical came to assess kt's situation. although kt needs care 24 hours a day, medical will only pay a fraction of that, at the rate of $7.11 an hour [caregivers range from $16 to $21 an hour]. fortunately, family friend mrs hanson [kirsten's mother], was able to recommend a classmate of hers who is willing and able to provide assistance. her name is rocio. there are still plenty of days not accounted for. see the calendar for the current schedule.
::shaun
[11.11.2003] day 105
kt is home. she was smiling and laughing. christina prepared a nice lasagna dinner, i picked up the dessert, while veronica and cathy brought kt from the hospital. either from overexcitement, a sip of apple cider, or possibly medication, kt vomited on the table. her rebound was quick, and soon after we put her in bed. upon the inquiry, kt knew the room she was in. she was very happy to be home.
::shaun
[11.10.2003] day 104
recently at the hospital, kt fell out of her wheel chair a second time. she has a bruise on her lower back that is about a foot long. she said it hurt. i asked kt how she felt, and she said "crappy." when i asked why, she replied "i just do." she became frustrated, and said "who cares" angrily. a moment later i asked her how she felt again, she said "good."
kt was very happy to be home. brice brought salmon, and kt ate a nice home-cooked meal in her mother's bed. i asked kt what you play [the videogame] halo on, and she said "xbox." this was correct and good too hear, as that pertains to, relatively, recent memory. grandma iris phoned, and amazingly, when we handed the phone to kt and told her who was on the line, she began speaking in spanish. kt was very comfortable in veronica's bed. she fell asleep smiling. later, we took her back to the hospital and put her to bed. all went well.
::shaun
[11.09.2003] day 103
kt is coming home for the day and will be taken back in the evening. regardless of the hospital's recommendation of continuing care, medical support is ending. so kt will be home tuesday. preparations are incomplete.
::shaun
[11.05.2003] day 099
ktb fell off the wheel chair yesterday as she attempted to go to the bathroom herself. if only the hospital staff could get her to the toilet on a frequent basis. she has no apparent injuries from that, but she told me that it hurt a lot. the discharge date is being postponed to the 11th, maybe because nothing is in place?
::veronica
[11.03.2003] day 097
many thanks to those who helped this weekend to prepare for kt's homecoming. you know who you are, and i could not have done it without you. you rock! by this friday i still have to:
001 » paint kt's room
002 » laminate her windows - for privacy
003 » install a fan and a light
004 » buy her a comfy bed
005 » organize her room
006 » finish the shed
007 » move her stuff into the shed [now it is in the garage].
as you see there is much to do still, and little time left. hope someone can help me. f.y.i. you can call kt. call the nurses station, and ask them to put kt on the phone. she likes talking to people on the phone. if you need the number, ask any family member. may we rise victorious from this tragedy.
::veronica
[11.01.2003] day 095
when i visited kt, she was talkative. she kept asking me to help her, "help me, help me please. please help me" over and over again. then she just balled "please!" over and over again, she begged please please please help me. :'( so i asked, what can i do kt? and she said "nothing" and then i asked again. she said "everything" then again "anything" so i said, tell me one thing i can do. she said "nothing." she quieted down. i just sat there on her bed, holding her. i winked at her and did a little "click click" thing and she did it too! it was super cute! she wanted to get up to walk and the nurses wouldn’t let her. her therapies were short. the o/c therapist is an eff-wit. i do not like her. not at all. treats kt like she’s an invalid child. she’s still a person. she’s still my sister. she still has feelings. she can push herself in a wheelchair! i didn’t know this! she walks better now- straighter line, chin up, etc. when i left, she kissed me and did our <puh puh> thing [does anyone else know what this is? it is soo cute!]. she kept smiling. then she did it one last time, and she pulled back and just smiled at me. i could tell i was really looking at her, and there was a person behind those eyes. she was there and smiled at me! as i walked out, she whispered, "puh puh. puh puh". i love her too much!
::christina
[10.29.2003] day 092
today i was rushed through a 'care team meeting' at the hospital, most likely in response to my grievances. while i am too exhausted to go into detail, i'll post the highlights.
dr kaveh, her physiatrist and primary doctor, reported that her ct scan and eeg are negative. there 'appears' to be no physical damage to the brain at this point; however with brain injuries, there is also the organic component of brain injury. it is along the same lines of dr murthy's prognosis. her pre-morbid condition, prior to accident, compounds the issue. she does have episodes of hallucinations.
the speech therapist continued her stand that kt cannot handle soft foods because when she gives it to her she chokes. "the computer still has her on a pureed diet" barf! maybe kt is reacting to her. i pointed out to her that when i feed her soft foods, she eats without a problem. i have chosen to select my battles, and given that kt will be home shortly, i'll let this one go. i recently received info on a study on brain injury and nutrition. my instincts were right on. she does need raw foods daily. that hospital has no clue on nutritional needs for brain injury patients. when kt is home, i'll see to it that she gets the nutrition she needs.
nursing reported that they are trying to be more consistent with kt's toilet training, and with no surprise, she does much better when they take her to the bathroom on a regular basis [you don't say!]. in fact, every time i am there and take her to the toilet she goes, wow! they did report that kt does much better when i am there. i guess that proves that there is no care like a mother's loving care. i just hope i can sustain it.
overall, the comment was that kt continues to make progress. she is more focused, yet the attention span is brief; something that hopefully will continue to improve as she recovers.
i only have about one week to prepare for kt's homecoming and there is much that needs to get done before the 7th. i need help!
001 » building a floor for the shed
002 » moving kt's stuff out of storage into the shed
003 » spackling and painting kt's room
004 » installing a light and fan
005 » moving a futon from santa barbara
006 » hiring and funding caregivers
help please! contributions can be mailed to the house: 3937 elkwood street, newbury park, ca 91320-5210 [805-498-6851]. many thanks.
::veronica
[10.27.2003] day 090
she’s on tegretol, same as dad was, for seizures, no? she remembered our little “puh puh” thing that we do! she twiddles her thumbs when she rests. she wants to see maria. she hasn’t seen her in “one month.” she drew “pictures” for mom, shaun and brice. it was really her writing their names and she had a specific color for each: mom: red, brice: black, shaun: green [i think]. kt mentioned grandma. she “saw her last month and gave her an award” [achievement award, she called it] for “being such a good mother.” she mentioned dad, so i asked, did he get one? she said, no. she kept mentioning october 18 significance? she kept saying “ow ow ow!” she cried out in pain, but shed no tears. she quieted when i massaged her and scratched her back; closed her eyes and rested.
i walk in and she says, “hi girl!” i told her “you’re so cute” and she said “i know.”
me: what are you doing?
kt: anything i want.
me: what color dress am i wearing?
kt: red [correct!]
me: what can you do when you turn 18?
kt: model.
she kept saying “oush oush oush.”
me: what hurts?
kt: everything ouch.
kt: it’s good to see you. always.
me: what did you do today?
kt: i hung out with my boyfriend.
me: who’s your boyfriend?
kt: daniel.
me: daniel who?
kt: daniel luna. [!]
me: was he here?
kt: no.
me: how did you see him?
kt: i went to visit him. i called him.
me: i brought some crème brule. do you want some?
kt: no i can’t. i’m on a diet.
kt: now buckle up and drive to my house.
me: what’s there?
kt: me.
me: where’s your house?
kt: shortwood.
me: where’s that?
kt: thousand oaks.
me: who lives with you?
kt: four people. sonja king. her brother. and …
me: “you float like a …”
kt: “…feather in a beautiful world” [i didn’t even help her!]
kt: damien.
me: what about him?
kt: he didn’t care. he didn’t care about anything. he just didn’t care.
me: do you remember the accident, kt?
kt: yah. we hit a tree. [she mentioned it hurt and she was sad].
kt: will you massage me? [she takes directive with it: “lower.” “to the left.” “other left.”].
[later]
kt: i have a boyfriend.
me: really? who?
kt: tommy lee.
me: really? where is he?
kt: at work. whole foods. across from work. i walk there.
me: where do you work?
kt: i work anywhere i want to.
kt: you know, last time i took a science class, kirsten was in it. at nphs. she flirted with the black guy.
kt: like today, shaun and kirsten picked up her brother.
me: oh yah. did y’all visit?
kt: yah. he’s kinda boring.
kt: i want you to ask me questions.
me: what’s your favorite kind of dog?
kt: zeus.
me: what’s your favorite kind of flower?
kt: bird.
me: do you mean bird of paradise?
kt: yes.
what’s your favorite kind of food?
kt: crepe.
me: do you want me to make you some crepes?
kt: no.
me: oh. why?
kt: because. you don’t make it right. [oh.]
me: when’s your favorite time of day?
kt: middle of the day.
me: why?
kt: because i can listen to my music.
me: what kind of music do you listen to?
kt: country music.
me: really? like who?
kt: leann rimes.
me: oh. what about shaina twain?
kt: no. leann rimes.
me: you remember the descendents?
kt: yah.
me: like sour grapes?
kt: “sour grapes, you leave such a bad taste” [lyrics!].
me: silly girl [her favorite descendents song].
kt: silly girl. no. i don’t remember that one.
kt [waves frantically]: bye bye. bye bye. bye bye me.
me: where you going?
kt: out. to hawaii.
me: when are you going to hawaii?
kt: august.
me: august what?
kt: august. that’s all i know right now.
kt: you have to go? [randomly]
me: no.
kt: no. yah you do. if you massage me, you can stay longer.
i did. then after a while she said the same thing “you have to go” only it was a demand. she kept repeating it, practically yelling it. “get out! get out! leave! leave! you have to leave now! now! get out. get out now!”
::christina
[10.26.2003] day 089
preparing for ktb's homecoming. nothridge hospital has turned out to be a disappointment in terms of all the therapy and drs' consultations and tests that we needed for kt. it is a fiscal issue: those with $ and/or 'good' health insurance get better care. i have witnessed half hour therapy sessions last 15 minutes; hour therapy sessions, last maybe 30 minutes. she is supposed to get one hour of speech therapy daily, she has only been getting 15 to 20 minutes. enough of that.
i am very busy preparing for kt's arrival at home. friday nov 7th i'll bring her home overnight, then shaun will take her back to the hospital the next morning. then sunday the 9th i am supposed to bring her home. we need to paint kt's room -prep walls first-, install a fan and a light in her room. it iwill be important to make it a 'safe' room for her.
next weekend friends/neighbors/and caring people will help me build a shed to store kt's belongings in, and sunday move her stuff out of storage and into the shed to save that monthly fee. then may be on monday or ? i'll get a futon from berney to try it out for kt. a hospital or regular bed will not work for her because she falls out of them. they have been keeping her 'caged' in at the hospital; this will be a change i am confident kt will welcome. my goal is to make her bedroom just a simple and serene environment. she can do her activities and therapies in the living room/kitchen areas.
i need help finding and funding caregivers. kt needs supervision 24 hours per day, seven days per week. those who can commit to a time block , please let me know. i have no idea how i am going to pull this off. i need to work 3 days a week at csun. even being home with her, i will need help as i know already that when i am with her 10 12 hours, i get burnt out. thus far, i have a commitment from pat for about 4 hours on saturday and one week night.
i would also encourage you to educate yourselves on traumatic brain injury [t.b.i.]. there are several web sites on the subject. as one states "brain injury lasts a lifetime, get involved."
kt has made great progress, and we can hope that she will continue to do so. yet is it very important for those interested in her to understand t.b.i. she is not who she was. she continues to need our daily support.
one night when i was tucking her in bed before leaving, i asked her if she wanted me to put glow worm in bed with her. she said 'no'. i said, 'oh kt but he is all alone out here'. her response was, 'so am i'. i could not argue the statement, as i was already told by one of the aides at the hospital that when she is alone, caged in in her room, she is like a caged bird that goes crazy. i hope that her homecoming will be comforting to her and that it will help in her recovery process.
::veronica
[10.24.2003] day 087
dr zeeman, a neurologist and acquaintance of dr murthy, came by friday evening to visit with kt. he informed me that kt's recent e.e.g. [electroencephalogram] was encouraging. the test gauges seizure activity, and the results were good. although, this is just one aspect of many accounting for a healthy brain. the neurologist considered an m.r.i. [magnetic resonance imaging], but kt is too active to get accurate results. they may try a c.a.t. scan [computerized axial tomography scan], being that it is a faster process.
kirsten and i asked kt various questions, and she did well in responding. it is worth noting that the nurses had recently given kt a pain-killer shot. that may, or may not, have enabled kt to concentrate. kirsten asked kt if she remembered seeing jonah's band, onelinedrawing, and she replied that it was a good show. upon kirsten's asking kt of her favorite band, kt responded afi. i told kt that it is october, and that tuesday was the 21st, at which kt said that's christina's birthday. kt remembered the street name of our old house [firwood], and the names of our last two cats [mittens and figuero]. i told kt that i have a late birthday present for her. after hinting that it is a movie with jodie foster and is about searching for life in the stars, kt guessed it! [contact].
as i applied oil to kt's scars, she said thank you and that she appreciates it. she asked us kindly to let her sleep. we left her with music and lavender. zipped into her crib, with her hands folded over coco, we said goodbye.
[10.22.2003] day 085
you nailed it shaun, it is devastating. your comment about kt's condition was very honest and insightful. it breaks my heart every day i see her. i am glad to see the progress she is making, yet devastated to see her condition. how could i not?
may be now some of you may understand why i wanted to turn off the machinery, specially after the meeting we had with dr. murthy only 2 weeks after the accident. even though at that time i had no familiarity with t.b.i. [traumatic brain injury], my gut instinct was that letting go was that the humane thing to do. i can only hope that kt proves me wrong. it is her battle, yet she cannot be alone. she needs loved ones around every single day.
accept that the kt we knew is gone; she began a new life, much different, right next to where she was born the first time. yes, it will be a very long and hard road and our love for her must be shown by being there and/or providing for the care she needs.
i will not hide my pain, frustration and anger. i am angry at the sick society that does so much to save a life, then to be slowly abandoned. i am angry at the sick driver for his recklessness, angry at his mother for not driving her home/ or calling me/ or letting him drive, and even angry at kt for getting on that bike. then again, i know how kt was all too well, fearless and always willing to give the shirt off her back to help anyone. she paid with her life.
to those who say at least she is alive, i say be there for kt 24/7
given that we gave kt the chance to come back and fight the battle of her life, we must give her the support and help she needs. for those of you who have been there helping, my heartfelt thanks.
kt may come home november 9th, at which time we need to provide caregivers 24 hours a day, 7 days a week. please help in any way you can: commit to blocks of time to do the care giving, or commit to a monthly sum to help pay for some blocks of time. the rate usually is $10 hour.
it is a very long journey, and we cannot do it alone. in great sorrow, despair, and reaching for hope surrounded by help.
::veronica
[10.18.2003] day 081
for those of you who have not seen kt since her accident: it is hard to convey the extent of change. she is a very different person. she is kt, but she looks, sounds, and acts differently. she is not all there. of course there is still much progress to be made, but seeing her is absolutely heart breaking. the road home is almost too long.
medical bills are arriving. the first ambulance: $2,000. the first hospital: $299,000. the second facility [estimation]: $200,000. current facility [estimation]: $200,000. various medical specialists [estimation]: $100,000. excluding the reconstructive surgery, that kt will eventually need, we are facing $801,000 to $1,000,000 for kt's recovery. unfortunately, the irresponsible-alcoholic-who-is-the-bane-of-kt's-family-and-friends will probably not have the means to pay for his stupidity.
my apologies if this is drab, but i thought this family knew what bottom felt like.
kt says "ow" a lot, although she states that she is not in pain. i offered her a new word, "boo," so she said that repeatedly. kt stopped saying "boo" and "ow" to sing for us, as we requested. kt sang the doe-a-deer song, as well as the alphabet. veronica and i helped kt walk to the bathroom, veronica assisted her, then we walked her back to bed. i took kt for a stroll around the hospital in her wheelchair. she helped push the wheels, and correctly directed us "left," "right," and "straight." she said her sister's birthday was in october, upon my asking. i asked her if she wanted to dress up for halloween, she said yes [as "anything"]. kt steered us to a medical records window and asked a clerk "trick or treat?" when we returned to her room kt was eager to get back into bed, so i [alone] helped her; she did very well. although, one minute she knew who i was, the next, she didn't.
[10.15.2003] day 078
kt is getting used to her new environment, but has been quite agitated [a normal process]. still, i have found her to be quite talkative in the evenings when i am there. she likes playing with her stuffed dog and cat. i think she might even enjoy dressing a doll-got one?
but she is in need of family and friends to be with her during this time as she is not doing all the therapy hours that she needs to. thus is spending a lot of time alone in her vale bed. so please go visit her. call the nurses station first. gracias.
::veronica
[10.13.2003] day 076
kt did very well during the transfer today to the acute rehab hospital. once there she was quite agitated, but after a shot to calm her down, she slept peacefully and deeply. she is in a vale bed to keep her safe. i have a good feeling about where she is, and trust that she will make remarkable progress there. she will receive the therapy and care that she has been in need of.
her weekdays will be very busy with therapy until 4:00pm. evening visitors may find that she might be very tired after hard-day's work. good time for plain old t.l.c. we are once again reminded that when one visits kt to limit stimulation to one thing/person at a time. when trying to talk with her, turn off the music and tv.
in about a week we will have a better idea of kt's condition as she will be tested and evaluated by several doctors.
::veronica
[10.12.2003] day 075
kt brushed her hair and when i was lying down with her, she kept pulling me in and kissing me :) she watched fantasia. she talked, and counted 01-20 in english and spanish. she always responds to "i love you," even if she doesn’t respond to anything else.
::christina
[10.12.2003] day 075
kt's is scheduled to be transferred to an acute rehabilitation facility on monday. there will be a strong, and much needed, emphasis on her physical therapy. surely she will make great progress.
in about a month kt will be coming home, and the fit will hit the shan. veronica is working arduously to prepare for this, while simultaneously fighting for the proper care for kt [while trying to work and attend school]. we will be in dire need of assistance. care is needed 24 hours a day, and the house will most likely need significant modifications to accommodate kt. maybe someone could start a fund raiser.
[10.09.2003] day 072
kt had a vicious cough attack, in which she coughed up a tooth. veronica found this tooth on kt's bed after the cough attack, where the tooth was located is unknown. kt went poo in the toilet with the assistance of veronica and two nurses.
[10.06.2003] day 069
with the assistance of veronica, a nurse, and a walker kt walked approximately ten steps!! kt appeared as if she was trying to get up, so veronica asked her if she wanted to, and she said "mhm." so the nurse retrieved a walker, and they assisted kt in her first steps in months. congratulations kt!!
[10.05.2003] day 068
the facility is providing one-on-one care for kt until monday. that will give me a chance to arrange one-on-one care for kt [starting monday] until she is transferred. we need help from 2pm to 10pm, if she sleeps all night. otherwise we need to provide care for her until 7am.
::veronica
[10.04.2003] day 067
kt is taking medication to help her sleep. kt appeared happy to have visitors. she replied that she was comfortable and tired. i asked her how she felt, and she said "confused," and would not respond as to why.
she is making progress in using her arms to scratch her face, adjusting her neck pillow, and moving her blanket. she is beginning to use her legs and body to position herself more comfortably in bed.
[10.03.2003] day 066
we need to be with kt 24/7 until she is transferred, and that may not be for another week. she fell off the bed, was put on a bed on the floor, but is active and needs one on one care. the facility cannot provide that. we need to avoid restraints so she does not get skin break down. you see how long it is taking for her wounds to heal.
we need help now: either people to be with kt or money to hire help [$12 hour]. please let us know what you can do asap. thanks. [calendar] [support] [contact]
::veronica
[10.02.2003] day 065
the bed rails were up, but apparently kt put too much weight over the rails. she fell onto the floor and called for help. at some point a nurse [presumably gloria] came to her aid. there are no apparent bruises or wounds, aside from the ones she already had. kt's roommate is no longer there, and she is situated on the floor with three twin-size mattresses. veronica was feeding her jello and kt kept saying "ow ow ow."
the acute rehabilitation facility has been selected, so now we just need confirmation of acceptance. kt is tentatively scheduled for relocation on monday or tuesday. if we are fortunate, kt will have twenty-eight days of rehab therapy.
[10.02.2003] day 065
kt fell out of bed today. more details soon.
[10.01.2003] day 064
when kt is agitated, she pushes people and things away.
[09.30.2003] day 063
kt ate soup, tuna salad, and a bite of bread for dinner. she drank apple juice, milk, and two health shakes. for dessert she ate pudding. it sounds like a lot of food, but they were actually small portions. she said she liked the food when i asked. a nurse asked her quite a few questions in spanish, kt kept relpying "si." she likes her crescent neck pillow, and enjoyed me scratching her head. the staff was prompt at tending to kt's needs.
a lot of kt's responses were "mhmm," but when every time i said 'i love you,' she used her energy to say "i love you too." she was not responding to many visual queues.
[09.28.2003] day 061
sharon, kt's speech pathologist, and her biggest advocate at the facility, recommended:
a goal for family and friends working with kt is to make eye contact; i.e. "kt look at..." [show her photos, simple objects, etcetera]. have her tell you what she sees. note that her apparent vision range is very limited at this point [only the middle area of the right side, out of the four visual quadrants], and she probably has diplopia [double vision].
it is also very important to work with her eye and motor coordination. encourage her to brush her hair, brush her teeth, put lotion on, and to feed herself. furthermore, ask kt simple and direct questions, i.e. "how do you feel? what is my name? what day is it?" she has dysnomia [difficulty retrieving names], thus it is important to keep working with her on this. she also has oral apraxia [difficulty initiating voluntary movement, as in talking]. so encourage her to speak. it is very important for visitors to help with kt's rehabilitation process. many thanks to those helping her out. :)
please be sure to say: "thank you kt for [telling me how you feel, what you need, etcetera]." we need to encourage those responses from her.
::veronica
[09.27.2003] day 060
she said "i'm worried." when asked about what, she replied "about this."
[09.27.2003] day 060
help needed: please bring kt books-on-tape and a headset. i have an old tape player that i can bring over to her.
keep encouraging kt to keep working hard so she can get on with the next step of her recovery, and eventually come home. let her know that she has come a long way, and that we are very proud of all the progress she has made.
i have checked out all the acute rehab facilities available, and we are between two. we are waiting to see which facility accepts her. the delay is due to medicare's restrictions. they only allow one try at an acute rehab. if kt does not manage 3 hours of rehab, or make progress, she is discharged. so she will be at the current sub-acute care facility until she is further along. hopefully by the first or second week in october, she will be transferred. meanwhile, we have to be vigilant that she gets the treatment she needs where she is so she can make progress.
it looks like before thanksgiving kt will be home. at that time we will need commitment from family and friends to help with her daily care.
::veronica
[09.25.2003] day 058
i got to spend a good five hours with kt yesterday and it was the first time i got to hear her speak. i asked if she good say hi to me and she said "hello amie" and upon my prompting said many other things. among the many words were: "hola, te amo, grandma iris, i will survive. "when someone came to give her meds i asked kt if she could say time for medicine and she responded "tiempo for the medicine"...how exciting as this shows she is remembering and can process spanish.
when nurse diana came to see kt i asked her to say hola and she did. diana responded "hola, como estas? and to this kt responded "bien" which excited us both! when i asked if diana was her amiga, she sat back in bed and sighed "oy vey" [yiddish from her grandma inez].
kt is enjoying sitting up now while in bed and requests to be "up" when asked if she wants to lay down or sit up. she has said that she is bored and that she would like to watch videos of the show friends. when asked if the video is good she says "yes!" i showed her pictures of her loved ones and she repeated some of the names. she said "alan, hugo, and hugo is from cuba."
when i left for a bit to get her some things at rite-aid, i told her where i was going and she said "okay." then i told her i would be back in 20 minutes. and she said "okay." i hugged and kissed her and told her i loved her. she responded "i love you too." i asked her if she knew who she was talking to and she said "amie" and gave me a kiss.
after a good bath from mum and me, she was settled for the night and upon my leaving wished me "buenos noches.” it was an amazing day!
::amie
[09.25.2003] day 058
kt continues to make great progress. she is such a fighter! her trachea tube was removed on september 22. she is beginning to sit up [with help of course]. think of how babies begin and evolve. she is learning to hold her head up. she is responding more on cues to questions. still, she tires easily.
she is out of the comma, but in a state of temporary reality and dreamlike [when she is more peaceful]. as she becomes aware of her condition and reality, she struggles. yesterday when i asked her how she was, she responded "i am very scared." when i asked about what, she was non-responsive. then when i asked her how she felt, she told me “very stupid.” i share this with loved ones because we all need to understand this process of recovery, and be prepared because the more she stays in reality, the harder her battle will be. we need to be supportive, understanding, loving, and patient through this step. wednesday night [september 23], she pulled her stomach tube feeding off. by the time nursing staff noticed [hours later of course], the stomach hole had began to close. they will need to monitor whether she is getting sufficient nutrition eating soft foods on her own. she needs a dentist as soon as possible to begin repairing some of the damage from the accident.
now that she is going to live, the medical system is very slow at providing the care she needs, if at all. it only works well when saving a life, then the help goes down hill. it is about bureaucracy and screwed up national priorities. the richest country in the world rather spend most of the national budget building weapons of mass destruction and drumming up wars, rather than health care and education for the millions of its citizens who desperately need it. i consider it a crime against humanity. sorry for ranting, but i am so frustrated with the continual, daily, up-hill battle to get the care kt needs and deserves. of course if we had money, or better health insurance, it would be a different story. but this is our reality. i know that we [my family] are not alone. millions of others face the same struggle in our position. i cannot help but to feel angry at the same system that worked so hard and diligently to save her life, to now give her minimal care, which translates into minimizing her rehabilitation potential. in years past, the medical care system would have already transferred kt to an acute rehabilitation hospital providing her months, maybe a year, of intense rehabilitation. these days, the u.s. health care system provides an average of 18 days of acute rehabilitation, up to 28 days only if you are really lucky. instead, this government rather build bombs at a billion dollars a pop. where is the humanity in this? please help us in providing the health care kt needs.
::veronica
[09.24.2003] day 057
per dr flynn's suggestion, veronica brought kt a television and videocassette recorder to keep her occupied. kt asked to watch the television show friends. she spoke sporadically to amie: "oi vey," "olah," "grandma iris," etcetera. more specifics soon.
[09.23.2003] day 056
kt is restless. she needs to see a neurologist to assess her current condition. transferring to an acute rehabilitation center is paramount.
[09.20.2003] day 053
she responded "you're welcome honey" to a nurse. christina asked her who wanted chocolate, she replied "meee." brice told kt that he lives nearby, and she said "how cool." kirsten brought kt a gift, and she said "hello kitty." a nurse asked kt why she didn't sleep last night, she responded "i'm depressed." kt rolled onto her right side five times. this was in response to my back massage offer.
[09.19.2003] day 052
she is talking more and more. to a nurse she said "don't go, you are my friend." to veronica she said "i love you too mommy." a physical therapist asked kt to count her leg exercises and she did. kt mumbled three or four incoherent sentences with the speech therapist and christina. i told her she looked pretty, and she replied "thank you." i told her a joke and she laughed "ha ha." i asked her to stick out her tong and say "bleeeeeeh" and she did. and "i love you too."
[09.17.2003] day 050
veronica will be evaluating acute rehabilitation centers specializing in tbi [traumatic brain injury] and accepting medicare. a facility should be selected within three weeks.
[09.13.2003] day 046
kt is talking more, little by little. she gave me several kisses, and she loves to kiss glow worm's face. she gets very tired after five minutes or so of questions. they are getting her up on the chair every day and taking her to have lunch in the cafeteria. she is eating a little bit of soft foods, and she is drinking from a straw. it is very important that no visitors feed her or give her a drink unless they are trained, she could asphyxiate. when visiting her, only one source of stimulation at a time [i.e. if reading to her, turn off music. if talking to her and asking questions, turn off music]. just be sure you leave her with her music on. it is also best to keep visitors to no more than two in the room at a time, otherwise she gets overwhelmed. thanks to all for the help and support. kt needs us for the long journey to recovery.
::veronica
[09.13.2003] day 046
veronica showed kt photographs, and she slowly said each of her siblings' names.
[09.12.2003] day 045
she said "i love you" to veronica.
[09.11.2003] day 044
she responded with "good morning," "yes," "no," and something else. the night before she was trying to communicate something and said "mom." she is getting better everyday. her leg movement is involuntary and is called "restless leg syndrome." her arms are now in the same state, "restless arm syndrome." we are trying to obtain custom made arm and leg braces to help keep her in a comfortable position. write to her.
[09.11.2003] day 044
great news!!! kt talked!!! she answered four questions to the speech pathologist, sharon. she said that kt is making great progress, but do not be surprised if she does not respond. she can only do so very briefly. it is important that she gets rest after stimulation.
::veronica
[09.10.2003] day 043
she moved her right arm. her leg movement was diagnosed, more details soon.
[09.07.2003] day 040
she sipped water through a straw. if you listen closely, you can hear her faint voice. kt pooped a tooth.
[09.04.2003] day 037
when visiting: monitor her care to ensure she is being taken care of. be observant. if something seems off, or if you have questions, seek assistance. "the squeaky wheel gets the oil."
[09.02.2003] day 035
many thanks to all of you who helped packing and moving kt out of her room in t.o.: pat, charlotte, maria, amie, eric, kirsten, sioux, shaun, ed, and garth. it was a great help!
kt is now in a sub-acute care facility [ask the family for the location]. we are still trying to arrange for her care there, so we still need help with physical therapy two times per day. at this point the nurse will do it once, until we get doctor's orders for more frequent exercise. what is most important now is to flex her feet and toes and to stretch her fingers and lift her arms. she is doing well exercising her legs on her own by lifting and bending them.
as some of you may know, we have to monitor her care at the facility, otherwise things do not get done. when you visit her, please sign in her sign-in sheet so we know who has been by to see her.
the great news is that sunday, august 31st, she smiled for the first time! veronica asked kt if she could hear and smile, and she did. then she continued to smile to other responses. we will seek speech therapy for her so she can learn to communicate with her eyes.
::veronica
[08.29.2003] day 031
the latest mri yielded no results due to her movement during the scan. the sub-acute care facility has been chosen. the location will not be posted on this site to maintain confidentiality. visiting hours are unrestricted, but we will set up a schedule to have some one by her side as much as possible.
[08.28.2003] day 030
per dr murthy she is not comatose, but she is [for the most part] unresponsive. so basically she is comatose [but not really]. wait and see. relocation is tentatively scheduled for friday. we will keep you posted.
[08.28.2003] day 030
jaw wire removed. temperature stabilizing. she will be relocated to a sub-acute care facility in the near future. professionals will handle physical therapy at that point. at the moment though, there is still a great need for these exercises three times a day. schedule.
[08.25.2003] day 027
stabilized and relocated. ask someone for the location. she is scheduled for a cat scan and mri. there are empty time spots in her physical therapy schedule that need to be filled. the schedule page will reflect this shortly.
[08.22.2003] day 024
the guestbook should be in working order, click here. contact fellcoda@yahoo.com if there are any problems with the website.
[08.22.2003] day 024
the week-by-week physical therapy schedule has been added to the etcetera page.
[08.22.2003] day 024
more movement and response.
[08.20.2003] day 022
a tooth and unknown shard were successfully removed from her lung through the trachea.
[08.19.2003] day 021
apparently the guestbook is non-operational. we'll have to see about that. physical therapy is absolutely vital. a week-by-week schedule has been posted in her room, and may be posted on this site at some point. she needs this three to four times daily. please do what you can. thanks.
[08.15.2003] day 017
sign the new guestbook. the link is the 'thank you' on the main page. or just click here.
[08.15.2003] day 017
physical therapy training session set for 3:00 on 08.16.2003.
[08.15.2003] day 017
we need to set up a schedule to do physical therapy with her. she needs to be exercised three times a day. unless her limbs are exercised while she is in a coma, she will have permanent damage [meaning loss of function of her limbs]. unfortunately, medicare can only provide physical therapy while she responds to treatment. so for now, it is up to us to keep her limbs functioning. saturday we will set up a training session with the physical therapist. those interested in helping, please let us know.
::veronica
[08.15.2003] day 017
currently infection and fever is the big hurdle. she now has an infectious disease specialist on her case. we do not know the outcome yet. either today or monday they will do surgery again to attempt to remove the tooth from her lung through her trachea.
[08.12.2003] day 014
she is breathing on her own.
[08.12.2003] day 014
according to dr murthy she is still in a coma, but she is getting better. if anyone reading this would like to add information/history/daily status to this site, please email fellcoda@yahoo.com.
[08.10.2003] day 012
is she awake?
[07.30.2003] day 001
the day it happened.
it was evening. kt was on her way home. her irresponsible alcoholic "boyfriend," damion, never got her there. damion's blood-alcohol level was 0.18% when they both got on the motorcycle. he drives fast, she once said it scares her. witnesses reported that he was driving at least 100 miles per hour and swerving in and out of traffic. they smashed into the back of a mercedes.
and she flew through the night air. alone in an instant of infinity and fright. she landed face-first, tumbling and sliding over the pavement. the oversized helmet she wore broke into her. her jaw split and she inhaled teeth and debris. she couldn't breathe. she was probably choking on the tongue she bit into pieces. she waited, dying on the 101.
a doctor, on his way to a hospital, happened upon the situation. his name is dr wareham. he cut a hole in kt's throat, then and there, allowing her to breathe. her body swelled from trauma. her brain bled, as did her ears, nose, mouth and wounds. machines held her life.
thirty days later she came out of her coma, fourteen days after that she spoke. unfortunately, damion is ok and still alive.
