India and I took the time today to just "chill". Being a Saturday, not many people at Boston Children's.
Showing posts with label Cerebral Palsy. Show all posts
Showing posts with label Cerebral Palsy. Show all posts
Sunday, March 16, 2014
Friday, March 14, 2014
Day 54 In Boston - We are headed home hopefully soon...
The general consensus is to get India back home ASAP. She is asking for her sisters and brother - Marion, Nikki and Abbie. And needless to say, her boyfriend Daniel.
The thought is if she can have more moral support, her spirits will improve and her body will follow.
We will come home soon if all goes well. It's going to be an intense process as India is very weak and requires a lot of assistance; way more than normal.
Once we get home, India will need enormous amounts of attention and TLC. It's not going to be easy.
It's my plan to have India make an unnounced visit to school for an hour or so not long after we return; once she is strong enough. India giggles when we talk about her surprise school visit. And of course she starts talking about her boyfriend Daniel and how she is going to marry him; she is in love.
India also had a series of new x-rays yesterday. Her hips are looking good, India's back however is a different story.
The x-rays were very hard to look at. India's spine is terribly twisted and getting worse. She is +/- 3% points from her scoliosis becoming a danger to her heart and lungs.
No set timeframe on how long until India has to return to Harvard Boston Children's to have rods placed along her spine. But it's safe to say the time will come quicker than anybody would like. It's going to be another intense surgery that is critical for my child and one I dread.
I told the doctor that we needed to buy as much time as possible so India could recover, become stronger, be a teenager and enjoy life; the doctor agreed.
I am however worried sick that when we return home, the "Dementor" will again refuse to use India's Orthotics and/or medications as she has done in the past. India can't afford anymore narcissistic shennagins with complete disregard for the children.
(she·nan·i·gans
SHəˈnanəgənz/
noun
informal
- 1.secret or dishonest activity or maneuvering.)
Saturday, March 8, 2014
Day 47 In Boston - Spa Day
India was treated to a "spa day" by the amazing Theresa. This incredible woman has shown a level if dedication that has made all the difference in the world for my child (and me).
Wednesday, March 5, 2014
Day 44 In Boston - She Pulled Out The Feeding Tube
So on day 44, about 1:30 am in the morning, India pulled out her NG Tube (Nasogastric intubation is a medical process involving the insertion of a plastic tube through the nose, past the throat, and down into the stomach.).
A few hours earlier, after the NG Tube was placed and India was ok, I left the hospital for a nap and shower. I was horribly sick and the break was much needed.
When I returned, India was sleeping soundly. I settled into the "blue chair" next to her bed and tried to get some more rest. About 20 minutes later, a warning "beep" from one of her bedside machines sounded. The nurse came in, turnded the "bep" off and told me that India had pulled out the NG Tube; I had no idea it had even happened.
This feeding tube had just been placed only hours before. As soon as it was inserted and nutrition flowing into her tummy, India was herself again; smiling.
I was told the "Resident" Physician wanted to wait and see how she was doing without the NG Tube that was inserted only hours before; I went numb.
The Resident Physician on the night shift had apparently made some assumptions and decided to see if it was time for India to come off her NG Tube. I asked to talk to this Resident.
When the Resident Physician arrived I was told that India didn't want the NG Tube in anymore. My response was that she didn't want to eat oraly either - so which should we alow her to chose.
The Resident then said that that I shold consider a "G Tube" (Gastronomy Tube [also called a G-tube] is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's an hour surgery.); another surgery that we've worked for 15 years to avoid.
I was upset and panicked beyond words. India is having a difficult time recovering "as is" and another surgery was suggested...
So the next day, India's doctor came to check up her and he gave the order for her to get back on the NG Tube right away. This was done and went well. But we had to restain India's arm with a brace so she couldn't reach her nose and pull out the NG Tube again.
This really upset her. Imagine only having the use of one arm and all of a sudden it's placed in a device rendering it useless and stiff. My poor daughter was pleading with me "help me daddy, please" while she cried and twisted in pure frustration; trying to free her arm.
India and I were up almost all night. I tried to distract her as the NG Tube gave India the nurishment she needed, but I think at in part my child felt as if she'd lost the use of her one limb that worked. I can't imagine the despair she felt.
This photo is just before India went on the NG Tube. She became so weak that she was a limp as a noodle from lack of nutrition.
Not long after the NG Tube was placed.
Monday, March 3, 2014
Day 43 In Boston - Feeding Tube
India just wouldn't eat for the past few days. So today the decision was made to put her on a feeding tube.
The placement went well, no X-rays were needed and she didn't experience any discomfort.
India had her 3 BEST (human & non clown) friends who work at Boston Children's Hospital at her side as always; NANCY, Lauren and Theresa.
I'm forever in the debt of these amazing and dedicated women. But my "chapter" about them must age like "fine wine". Or I at least need to add some fancier words with a Bostonian "accent" to pay them the respect they deserve.
India is comfortable right now, watching Marry Poppins and looking at photos on her iPad.
And as you can see on the top photo. India is still wearing her pearls sent to her by Dorothy Vau Armijo McCoy; India LOVES them.
It's been a really rough road, much harder than I expected. I hope India is back at school with her boyfriend and friends soon.
Tuesday, February 11, 2014
Day 24 In Boston - Post Surgery - "1st Attempt To Remove Traction"
Two weeks ago yesterday, Monday January 27th, 2014 - India had her hip/femur surgery at Harvard Boston Children's Hospital.
Yesterday morning, we took India off of her traction. Everything went well. India was making jokes with the nurses and talking nonstop about marrying Daniel.
A few hours later, I went to get India lunch. Just as I was getting back to the hospital a nurse calls me and says "not an emergency but that I should get back ASAP".
The minute I entered the room, India started sobbing and grabbed onto me asking for help; she was in a lot of pain. I tried to sooth her every way I could think of, including handing India a photo of her boyfriend "Daniel". She put his picture against her lips, kissed it and then started crying again.
The nurses gave India pain meds. When that didn't work, they called a "stat" with the Orthopedic team. The Orthopedic team quickly put India back in traction and her pain eventually stopped.
The doctor said they need to keep India in traction for another week.
India went to bed holding Daniels photo.
https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808
Thursday, September 26, 2013
Beautiful Love Part 2 - She Had Something Important To Say.
In the spring of 2013, as the school year came to a close, I
became very concerned about my daughter India.
She was transitioning to high school and I found myself unprepared
emotionally as “Daddy”.
Back in the 1980’s when I was in high school, some kids had
cars, most had sex, we drank rot-gut booze, fought and used drugs. And we had one hell of a good
time. But there was a darker side to my high
school experience that I didn't know would affect me in my later life the way it has.
There wasn’t “political correctness” as we know it today when I was in high school. Seeing students treat handicap peers or minorities with complete disregard and cruelty wasn’t uncommon. And now my handicap and helpless daughter who was also a minority as a result of her condition, was about to be transferred to high school in very same school system.
There wasn’t “political correctness” as we know it today when I was in high school. Seeing students treat handicap peers or minorities with complete disregard and cruelty wasn’t uncommon. And now my handicap and helpless daughter who was also a minority as a result of her condition, was about to be transferred to high school in very same school system.
One morning just before the summer break as we were getting India ready
for school and going through the routine of feeding, dressing, medicating, and stretching, she did something out of the norm. India reached up and placed her little hand on my face. India can only use one arm, she's triplegic and so her touching me like that, so gently is really sweet can be difficult for her to do. She clearly wanted my attention. When India knew I was listening, she moved her hand away from my cheek and gave me
a nervous smile then said: “left thumb
going up and down” (sign for India’s name) + “anniieeeell” (verbal for Daniel) + “koooolllll” (verbal for school). Then she lay there waiting for me to respond. She had just asked "Are India and Daniel going to school?"
This was a daily question that to be honest became so repetitive that I found myself frustrated at times being asked over and over every single morning. But every day I smiled and said "yes" you'll see "Daniel" with the occasional poking fun by saying "young lady, you better not be kissing him!!!" Always said with an exaggerated frown, Richard Nixon voice and demeanor. But I knew all kidding aside, India just wanted reassurance that she was going to see her "boyfriend".
So when I gave India the usual response of “yes, Daniel will be at school today”, India curtly replied “no”. Placing her hand back on my cheek.
That's when I realized my daughter was making a serious effort to tell me something. I smiled at her and said "what can I do for you pal".
Then she did it, and I mean India really did it. My profoundly disabled daughter was looking up at me with her beautiful eyes and said:
So when I gave India the usual response of “yes, Daniel will be at school today”, India curtly replied “no”. Placing her hand back on my cheek.
That's when I realized my daughter was making a serious effort to tell me something. I smiled at her and said "what can I do for you pal".
Then she did it, and I mean India really did it. My profoundly disabled daughter was looking up at me with her beautiful eyes and said:
“Why” (verbal) + “anniieeeell” (verbal for ‘Daniel’) “by-by” (verbal for ‘going away’) + “koooolllll” (verbal for ‘school’) + “left thumb going up and down” (sign for India’s name) + “uuhhhhhh- uuhhhhhh” (verbal for ‘crying’)” + “patting her heart” (sign for love) + “anniieeeell” (verbal for ‘Daniel’)” + “no by by” (verbal for ‘don’t go’).
I sat there with India’s head on my lap while she looked up
at me, a cautious smile on her face. She wasn't sure if I understood what she’d just told me. Most people can’t understand India at all and seeing her frustration when her just trying to ask for something to drink can be heartbreaking. Especially when people talk back at her like a baby.
So as I looked down at India, I realized I
was crying. Tears were dropping directly from my eyes and onto her face. India didn't flinch or react when each landed on her skin; she just kept staring at me, waiting to see if her message
was understood. It was.
My daughter said: “Why is Daniel leaving school? I’m going to cry, I love Daniel, and I
don’t want him to go.”
As India and I always do when we communicate, I repeated
what I thought she’d just told me for conformation. This time I started by saying "Did you just say..." when the last word passed my lips, India started to nod her head up and down while her chin began to quiver. Her eyes filled with tears. I could see she was trying to hold it in but just moments after her bottom lip began to stick out, she loudly said "yes" as the dam broke and she cried harder than I'd seen in a very long time. India knew I understood, her voice had been heard.
I stroked her hair and said "I'll take care of it, don't you worry" India slid her hand onto the back of my neck, pulled me to her, held me and said “taaank ooo Daddy” (verbal for ‘thank you Daddy’).
I stroked her hair and said "I'll take care of it, don't you worry" India slid her hand onto the back of my neck, pulled me to her, held me and said “taaank ooo Daddy” (verbal for ‘thank you Daddy’).
About an hour later, I watched India's bright yellow school bus pull away from our house as she grinned at me out of the window. This beautiful, beautiful girl had been so afraid of losing her boyfriend and the frustration of not being able to tell or talk to anybody about it was overwhelming for her. I was feeling so happy in so many ways. So much sorrow for her knowing how frustrating and cruel her world is being trapped in a painful broken body where can hardly communicate. I felt fear because I had no idea what was going to happen to her boyfriend, where he would be transferred
to. He too was in the 8th grade and scheduled to move onto high school next semester.
What if his parents were going to transfer him to a school too far away for India to attend; should I be prepared to move to that part of town so they could be together? And what if Daniel's parents were leaving the state. I had no idea and I'd just told my daughter that "I'll take care of it, don't you worry".
What if his parents were going to transfer him to a school too far away for India to attend; should I be prepared to move to that part of town so they could be together? And what if Daniel's parents were leaving the state. I had no idea and I'd just told my daughter that "I'll take care of it, don't you worry".
Later that morning, I drove to India’s school. As expected, India and Daniel were sitting next to each other, holding hands. But I was caught off guard when the teacher walked straight up to me and before I could say a word asked “what are your plans for India next semester”? So I told her what had happened between India and myself that morning. When I was finished, the teacher smiled at me and looked down at the ground. Then she said “You know – I hear Daniel is going to stay here for another year. I can’t say for sure but you might want to check”.
The relief I felt was intoxicating. All I could say was "thank God".
So before the school day was done, I let the school administration
know that India would be remaining for another year. I think it caused some heartburn
in the system. To be honest, I didn't give a shit and felt like saying to the irritated "paper pusher" who was urging me to move India onto high school – “fuck off sunshine”. But I didn't, I just said "no thank you", my daughter would like to stay at this school for another year.
That night when I tucked India into her cozy bed she asked me: “left thumb going up and down” (sign for India’s
name) + “anniieeeell” (verbal for Daniel)” + “koooolllll” (verbal for school) =
Are India and Daniel going to school?
I said with a grin “you bet baby girl". India smiled,
curled up in a ball and squealed with delight.
"Fall is here, hear the yell
back to school, ring the bell
brand new shoes, walking blues
climb the fence, book and pens
I can tell that we are gonna be friends
I can tell that we are gonna be friends
Walk with me, India B.
through the park, by the tree
we will rest upon the ground
and look at all the bugs we've found
safely walk to school without a sound
safely walk to school without a sound
Here we are, no one else
we walked to school all by ourselves
there's dirt on our uniforms
from chasing all the ants and worms
we clean up and now it's time to learn
we clean up and now its time to learn
numbers, letters, learn to spell
nouns, and books, and show and tell
playtime we will throw the ball
back to class, through the hall
teacher marks our height against the wall
teacher marks our height against the wall
and we don't notice any time pass
we don't notice anything
we sit side by side in every class
teacher thinks that I sound funny
but she likes the way you sing
tonight I'll dream while I'm in bed
when silly thoughts go through my head
about the bugs and alphabet
and when I wake tomorrow I'll bet
that you and I will walk together again
I can tell that we
are going to be friends
yes I can tell that we are gonna be friends.
... Jack White - The White Stripes
"Fall is here, hear the yell
back to school, ring the bell
brand new shoes, walking blues
climb the fence, book and pens
I can tell that we are gonna be friends
I can tell that we are gonna be friends
Walk with me, India B.
through the park, by the tree
we will rest upon the ground
and look at all the bugs we've found
safely walk to school without a sound
safely walk to school without a sound
Here we are, no one else
we walked to school all by ourselves
there's dirt on our uniforms
from chasing all the ants and worms
we clean up and now it's time to learn
we clean up and now its time to learn
numbers, letters, learn to spell
nouns, and books, and show and tell
playtime we will throw the ball
back to class, through the hall
teacher marks our height against the wall
teacher marks our height against the wall
and we don't notice any time pass
we don't notice anything
we sit side by side in every class
teacher thinks that I sound funny
but she likes the way you sing
tonight I'll dream while I'm in bed
when silly thoughts go through my head
about the bugs and alphabet
and when I wake tomorrow I'll bet
that you and I will walk together again
I can tell that we
are going to be friends
yes I can tell that we are gonna be friends.
... Jack White - The White Stripes
Saturday, September 21, 2013
Friday, September 20, 2013
Our Day In Hell Part 11 - Chronic Pain
During India’s 11th year, she began to show signs of
chronic hip pain. Her condition became progressively worse over the next
twenty-four months. Viktoria and I did everything we could to prevent the
problem from becoming worse but Mother Nature had other plans.
Because of her worsening condition, we
took India to visit her local Pediatric Orthopedic Surgeon. She had
multiple x-rays taken and the results were chilling. The tops of India’s
femurs had grown perfectly straight versus the natural angle placing the ball
into the hip socket. There were no hip sockets and the balls of femurs
were worn down to virtually nothing; just jagged edges.
India's pain rapidly became
unbearable; every movement came with a grimace and moan. This was crushing for
me as her father, to watch my child in so much pain and not be able to take it
away. She’d wince with every move, often bringing a scream to her mouth or
tears to her eyes. I’d regularly have to hold India in my lap, while I
tried to sooth her. She’d sit there holding onto me with her one good had
saying “owie daddy – help me”.
India’s Orthopedic Surgeon told us
that our only real option was to open up each of India's femurs, saw of the
tops and stuff the void left behind where the bone was removed with material to
try and prevent the remaining bone from piercing through her muscle and
skin. This invasive procedure would have taken up to a year for India to
recover and virtually guaranteed a lifetime of pain and discomfort. In
addition, my little girl was so fragile; I didn’t think she’d have good odds of
surviving this surgery.
My wife Viktoria and I did a massive
amount of research to find alternatives and the best doctors in the world that
could help India. We discovered that some of the finest physicians out there
for India’s condition are located on the east coast of the United States.
India and I immediately flew across
the country to meet with these cutting edge physicians and get their
suggestions on how to help my little girl. The doctors suggested 3 procedures
that were relatively non-invasive and outpatient. We booked India’s
surgeries on the spot for the following month, and then flew home.
Just after India and I returned from
the east coast, a lump was found in my chest that appeared to possibly be
dangerous. My doctor immediately scheduled surgery to remove the
mass. My operation took place on a Wednesday; it took about 2 hours to
remove the growth. Two days after my surgery, I began to have substantial
internal bleeding. The doctor had to remove a large quantity of blood from my
chest, leaving an impressive dent in my right breast. Two days after
that, I flew India to the east coast for her surgeries. The trip to the
eastern United States was rough on me as I had just been cut open, was black
and blue, leaking fluids, exhausted and experiencing quite a bit of pain.
I had to constantly lift and maneuver India, her wheelchair and equipment
throughout the trip on airplanes, shuttles, trains and all around airport
terminals. All the while trying to be gentile with India because of her
hip pain.
India’s mother had flown the same day
but on a different airline. She told me that she didn’t want India to
stay with her on the first night because she was tired from school and the long
flight to the east coast; she needed her sleep. Even though Veruca knew
about my surgery and complications several days before and that I had also just
finished a long flight, caring for India was out of the question for Veruca,
she wanted a good night’s sleep.
I brought India to Verucas hotel room
the next afternoon so that she could spend the night with her mother. As
I was leaving Verucas room, as usual, India began to plead with me to not leave
her with her mother. I told India that I loved her but she needed to stay
with her mom. 2 hours after leaving India in Verucas room, I received a call
from Veruca letting me know that India hadn’t let up on wanting to be with me
and had become more adamant that she wanted to leave. Veruca asked if I’d
come get India and let her stay in my room, I happily agreed.
We arrived at the hospital the next
day at 6:00 am. I could feel India’s apprehension and fear, not to
mention my overwhelming worries. We were taken to the pre-operative room
where I placed India in her hospital gown and onto the gurney. The nurse
said that only one person could accompany India to the surgery prep-room.
India’s mother asked to be the one to accompany her. Not wanting to make
a scene, I agreed. As they began to wheel India off with her mother in
tow, India in a scared voice began to say “Daddy, Daddy”, reaching for me. I
paused, foolishly thinking that Veruca would respect India’s request, turn back
and let me go with our child, but this didn’t happen and I was foolish to have
expected it to have.
Several hours later, we were notified
that India was out of surgery. We went into the recovery room and saw an all
too familiar sight. India was unconscious, swollen, her skin a
grayish-yellow and surrounded by monitors and intravenous lines. Her lips
were dry, the sides of her head stained with yellow surgical Iodine solution,
ears stuffed with gauze, blood seeping through. The numerous bandages on
her surgical points all had had red splotches. I’ve been in this
situation so many times with my baby girl, it’s difficult to describe how
deeply painful it is for me to see my child in this state; regardless of the
reason. I find myself indescribably sad, anxious, helpless, physically
exhausted and even angry. This sweet little girl did nothing to deserve
this, nothing at all.
When India was released from the
hospital, she was very lethargic and drowsy; she looked terrible. We took
her back to the hotel to rest. The doctor’s philosophy was to get the
patient the hell out of the hospital ASAP to recover; hospitals are major incubators
for infection. Veruca wanted India to stay in her room the night she
returned to the hotel. India was in and out of consciousness as we got
her set up in Verucas room. She wasn’t looking any better and clearly had
significant pain, enough so that Veruca suggested that she should stay an extra
day or two in case India had to be hospitalized; Veruca was scheduled to leave
the next day. I responded that it might be a good idea; I felt the odds
were high that India would have to be hospitalized.
The first night out of the hospital in
Verucas room was extremely tough for India. She was in a lot of pain and
took a huge amount of care. According to Veruca, she was up most of the
night caring for India. The next morning when I arrived, Veruca was
packed and ready to go. After a long night caring for India, she’d
completely blown off our conversation about her staying a couple more days to
help with our daughter. She was leaving regardless of the possibility of India
having to be hospitalized. I didn’t say anything; I’d seen this
narcissistic behavior from Veruca many times before. When I confronted
Veruca with this later, she would use the excuse that she had to get back to
class, although her professors gave her all the time off she needed. She’d
also use the excuse that she had no money even though I offered to pay for her
room and meals.
Luckily, India didn’t have to be
hospitalized. Viktoria, India and I spent the next week in our east coast
hotel room so that India could recover enough to take the long flight
home. It was a stressful, exhausting and a long week as India was weak
and in pain most of the time; she required a lot of care. We were able to
take an afternoon drive with India to New York City to tour the Plaza Hotel. India’s
favorite book and TV character is Eloise, who lives at the Plaza. India
had the time of her life, an ear-to-ear smile the entire time. This was
the first time India seemed like her old self in months.
The next day we flew home but
unfortunately, and as usual, we were facing more of the same from Veruca and a
much longer and tougher recovery for India than we thought.
Several days after returning, Veruca
tried to put India back in school, despite my vigorous protests and India’s
obvious physical state. Veruca did send her to school but it lasted only
one day. India spent the entire time asking her aide to hold her in her lap
because she was in so much pain. The aide couldn't give my
daughter this comfort because the school system said that it wasn't appropriate
for the aid, who is a woman, to hold my 42 pound daughter and comfort her; it
was a terrible day for India. Fortunately, India got to come home to me
that afternoon.
India returned to my home in very bad
shape. She’d not been stretched as directed by the doctor and as a result
was terribly stiff and in bad spirits. She began to have exceptionally
intense and painful contractures in her legs. The doctor who performed
the surgery on India had prescribed liquid Diazepam to control these
contractures. He told us to not hesitate to use this drug when India’s
contractures began. When I went to India’s medicine bag to get her the
Diazepam, it wasn’t there. I quickly contacted Veruca to ask about the
Diazepam; I assumed she forgot to send it over from her house. To my
horror, Veruca proceeded to inform me that she intentionally kept the Diazepam
and didn't want India using this necessary and prescribed
medication. After many attempts to gain access to the withheld
prescription, I was forced to call the police. After about 45 minutes,
the police arrived at my house with India’s Diazepam. The policeman let me know
me that Veruca was very difficult and angry that she had to give up our
daughter’s medication. He went on to say that he couldn't understand
why a mother would unilaterally withhold prescribed medication from her own
daughter. India had to endure several hours of needless pain because of her
mother’s personal beliefs, regardless of the impact on India; I was livid.
Because of Verucas past history of
neglecting our children, her aggressive desire to place India back in school
before she had healed from her 3 surgeries and now her refusal to provide our
child with the necessary medication, I was forced to bring in an officer of the
court. Fortunately, the court ordered that India was to spend every day
with me during her mother’s week every day so that Viktoria and I could care
for her. Veruca wasn’t happy about this and fought as hard as she could
but thankfully lost the battle.
India’s recovery was brutal. At
times, she was in extreme pain. She had bruises throughout her body where
the surgeries took place. The operation for her mouth caused a bad
reaction, which resulted in a nickel sized bright white hideously painful sore
that formed on the tip of her tongue, resulting in India not being able to
eat. Then India came down with a nasty virus that caused her to vomit every
time we were able to give her smallest bit of food or drink. And finally,
she began to have horrendous nosebleeds. The worst of which happened one
morning before dawn. When I went into India’s room to get her ready for
the day, she was laying in a puddle of blood. Her long beautiful blonde
hair was knotted in black and red congealed liquid. Her face was
completely covered, including her eye sockets. Her tongue was black from
the blood that pooled in her mouth. India’s ears were caked with the
drying fluid and both nostrils were totally blocked with black blood
clots. It was a gruesome sight. It had visibly shaken her as she began to
sob when I walked in the room, she grabbed onto me and said “Daddy” over and
over while she cried.
I picked India up and took her to my
bathroom to give her a long warm bath and get her cleaned up. When I
lowered India into the bath, the water instantly turned dark red. I had
to fill and drain the bath three times as the water would continually turn dark
red from the blood that came off her little body. It took us over an hour
to comb the blood clots out of her hair.
At one point while India was soaking,
I stood up, my reflection in the mirror caught my eye. I was covered in
blood; it was everywhere. My chest was still horribly bruised, deformed
and painful from my recent surgery. My skin that wasn't smeared with India’s
blood looked sickly pale. My body didn't look
familiar to me, it looked frail and old; I’d lost over 22 pounds in the
previous 6 weeks. As I stood there staring at myself in the mirror, my eyes
began to fill with tears. I tried to hold back the emotion but it was useless,
I began to weep. Then I began sobbing, I sat on the floor with my head in my
hands, tears rolling down my cheeks as weeks, months, and years of pain,
despair, empathy and anger came tumbling out from deep inside me.
At that moment, as I sat there looking
at my tears dropping onto the tile floor, I realized they were bright red. My
tears were mixing with India’s blood that was smeared all over my face.
I will use the words utter despair and
absolute horror to try and describe that moment. But in all reality, I can’t accurately
convey the emotions I was experiencing and I don’t believe I ever will be able
to. For me, just writing this story has
been exhausting and taken me over 2 years to complete.
Friday, June 7, 2013
Beautiful Love Part 1
I went to pick my oldest daughter up from school a bit early on her last day. I arrived knowing she had a crush on a boy who is equally disabled. My 14 year old daughter sometimes blushes when she talks about this boy. She’s known him since they were young and he’s one of the first names she mentions in the morning as we prepare her for school as she looks for confirmation that she gets to see him each day.
I was pleased this “boyfriend” India always talks about made her happy. I fostered the romance but assumed it was just a “crush” from a distance. I didn't fully understand the bond until India’s last day of school and it almost brought me to my knees.
As I walked into my child's classroom, I found her wheelchair that she can maneuver positioned next to her boyfriends. They were holding each other and clearly enjoying every moment; it was beautiful beyond words.
The joy of knowing my child had been given the opportunity to feel the happiness at 14 of having a boyfriend, the butterflies, the excitement; this love is a gift that most never experience. Especially considering both of these kids are trapped in broken and painful bodies yet have found happiness in each other.
Here is a photo from this day, nothing more need to be said and I’ll sleep a bit better every night to the day I die as the world has become a bit brighter for all of us.
(Not long after I'd posted this story, I was driving through the mountains with my daughter India. We were listening to music, enjoying the scenery and having a great time.
Cellular service is very patchy where we were at 8,000 feet in the Rocky Mountains so the phone coming to life is rare; which I enjoy.
So when I heard my phone buzz it caught my attention. I pulled over to take a look and was taken aback by what I saw. There were hundreds of responses to this post; they were beautiful.
While my daughter was sitting next to me as I read the heartfelt responses to my post, a song came on the radio and the timing of it was indescribable.
I began to cry like I've not cried in a long time. These were very bitter sweet tears. But of course my Angel asks me with a big grin on her face "why Daddy 'uhhh' (her word for cry)". Then she started laughing which of course made me start laughing. So there we were in God's country, laughing like loons and enjoying that incredible day.
"Fall is here, hear the yell
back to school, ring the bell
brand new shoes, walking blues
climb the fence, book and pens
I can tell that we are gonna be friends
I can tell that we are gonna be friends
Walk with me, India B.
through the park, by the tree
we will rest upon the ground
and look at all the bugs we've found
safely walk to school without a sound
safely walk to school without a sound
Here we are, no one else
we walked to school all by ourselves
there's dirt on our uniforms
from chasing all the ants and worms
we clean up and now it's time to learn
we clean up and now its time to learn
numbers, letters, learn to spell
nouns, and books, and show and tell
playtime we will throw the ball
back to class, through the hall
teacher marks our height against the wall
teacher marks our height against the wall
and we don't notice any time pass
we don't notice anything
we sit side by side in every class
teacher thinks that I sound funny
but she likes the way you sing
tonight I'll dream while I'm in bed
when silly thoughts go through my head
about the bugs and alphabet
and when I wake tomorrow I'll bet
that you and I will walk together again
I can tell that we
are going to be friends
yes I can tell that we are gonna be friends.
back to school, ring the bell
brand new shoes, walking blues
climb the fence, book and pens
I can tell that we are gonna be friends
I can tell that we are gonna be friends
Walk with me, India B.
through the park, by the tree
we will rest upon the ground
and look at all the bugs we've found
safely walk to school without a sound
safely walk to school without a sound
Here we are, no one else
we walked to school all by ourselves
there's dirt on our uniforms
from chasing all the ants and worms
we clean up and now it's time to learn
we clean up and now its time to learn
numbers, letters, learn to spell
nouns, and books, and show and tell
playtime we will throw the ball
back to class, through the hall
teacher marks our height against the wall
teacher marks our height against the wall
and we don't notice any time pass
we don't notice anything
we sit side by side in every class
teacher thinks that I sound funny
but she likes the way you sing
tonight I'll dream while I'm in bed
when silly thoughts go through my head
about the bugs and alphabet
and when I wake tomorrow I'll bet
that you and I will walk together again
I can tell that we
are going to be friends
yes I can tell that we are gonna be friends.
Subscribe to:
Posts (Atom)