- Day 11 To Boston - Tonight is one of those rough times...

I want to thank everybody again as I'm sure I will - over and over, for all the support for India and her upcoming surgery. This has been an emotional time for our family in so many ways.  Yet we keep getting up each morning after very rough days and nights and taking that first step.

Tonight is one of those rough times...

It's 1:00 am and India's called out in pain twice now; screamed. Vikki and I go and stretch, re position and comfort her. During India's first bout of pain this evening, I helped her relax after re positioning by telling the news that she's going to transition to the same high school as her boyfriend. She giggled with excitement and then asked if her boyfriend also has pain in his body.

During the second time India's pain woke her up and she yelled for help, it was heartbreaking.  

Vikki did what Vikki does best, she stretched and positioned India in a way that made her little broken body feel ok for the time-being. When Vikki left the room, my child wanted reassurance that she wasn't going to her biological mothers house. I held India, kissed her forehead and assured her that she wasn't going there tonight. India smiled, gave me a kiss and went to sleep.

This life we live is very confusing and I'd give mine for my child to not live in pain and fear.

Tomorrow she will wake up with a smile, ask about her boyfriend and best friend Kate.  And we'll  do all we can to make it a good day.

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- Day 12 To Boston - Dates Set For India's January 2014 Surgery!

Our dates are now set for India's surgery. It's been an intense journey and we have a long way to go. We are still coordinating, fundraising and logistics. But the sense of relief we are feeling right now is intense. India's pain has been rearing its ugly head and no child deserves that.

1/21/14 - 1:00 PM CCS
1/22/14 - 9:00 AM PREOP ADMITTING
1/22/14 - 11:00 AM DR. EVALUATION
1/22/14 - 2:00 PM SURGICAL CONSENT
1/27/14 - SURGERY DATE

We are grateful beyond words for the worldwide support for India.

The Kate & India Show - Markers

NEVER MESS WITH TWO GIRLS IN WHEELCHAIRS ARMED WITH MARKERS!

Public School Photos At Their Best!

This is my daughters 2013 fall school photo.  I'm so grateful for the effort they took to take a beautiful photo of my child.

Massive Downpour In The Desert

This was a great downpour in my home state of New Mexico. This one just north of the Mexican Border.

If we've had a very dry year and one of these hit, it's really intense. Because the downdraft pushes all the dry dirt/sand like a wave.  Next thing you know, a wall of sand is coming at you and when they hit it's amazing.

Nothing About Her Life Is Easy

India has to make monumental efforts for things that most of us never think about.  She is trapped in a body that won't listen to the minds instructions.  

The effort it takes for my child to ask for water, say "hello", taking a step and having any sort of communication can be exhausting. 

But she never gives up and she continues to smile and laugh.  

This evening I learned that some homeless people are giving their only dollar to help my daughter.

Today has been a long day but for once in many years, not in a bad way.  

I'm too tired write about everything right now, I just want to curl up under the covers and sleep. But I do need to share one event out of the many that just happened.

The following is a text from an Angel - one of my daughters best friends that I received just after dinner:

"My sister volunteers at a homeless soup kitchen in Austin. She mentioned India's situation, and several of the homeless people gave my sister a dollar each"

This happened at the "Holy Cross Lutheran Church" in Austin, Texas.

The moment I read this text on my cell phone, I went into the other room and shared it with my wife. But something unexpected happened to me, I began to weep. I tend to cry now and then but this caught me off guard and was confusing. Not because I was embarrassed but at the moment, I couldn't process the intense emotions I was feeling. This was actually frightening.

Some time has passed and I think I have some idea of my unexpected reaction.

I've dismissed hundreds of homeless people in my life around the world without a thought as they've asked for money, work or food. This includes many times in Texas and even Austin.

I don't doubt that some of the homeless I've ignored, walked across the street to avoid or coldly said "no" to, had no business begging in the first place.

But how many of those homeless with their hand out who I shunned were living in fear and in need of help and had nowhere else to turn to?

Did they have children waiting nearby and were they disabled, cold or hungry?

And am I any different than the homeless in dire need as I'm reaching out for help this month for my daughters medical needs, quality of life or life itself?  

So tonight I learn that homeless people in Austin, Texas are giving money to help my daughter.  That is absolutely beautiful beyond words to me.  And it's horrifying at the same time as I've turned my back on that very same group without a second thought.

Imagine if one of those homeless that gave their last dollar to India tonight, a cold night, is one of my fellow humans that I ignored, went out of my way to avoid, or coldly said "no" to.

Also, I can't help but think about India's last 5 trips to the emergency room when not a single family member took the time to show up, nor help in that time of crisis.  Yet I blessed with homeless people who have never met my child who are making an effort to help.

Thank you.

Bama & Da's Cabin Timelapse.

A good friend put together this video of my grandparents cabin.

Want To SKI?!!

India LOVES to ski.  And the people at the Adaptive Ski Program in Ruidoso, New Mexico are amazing beyond words.

Let's Go For A Walk!

My beautiful Vikki has been one of the most influential and and life-changing persons to come into our lives.  She arrived from another universe and didn't skip a beat from the day she stepped into my home and focused on my daughter.  This stunning but irritating and stubborn lady that I'm proud to now call Mrs. Brainard.

Vikki (India calls her "Dicki") took my child, pissed her off, didn't give in, treated her like any other child,  and the result was something that has more value than anything I can think of.  Vikki gave India physical mobility, independence and pride.  To this day, Vikki is India's best friend and now her mother.

This little compilation is of India walking, one of the most exhilarating things I've ever seen. And until Vikki, it was beaten into our heads that India could never take a step!

She can't do any of this now and most likely ever.  And the reason is gut wrenching but regardless, we'll not give up and continue to find ways to bring India joy which in turn makes our lives beautiful.

 

And The Crowd Goes Wild!!!

Indias graduation from elementary school. 

May I Have This Dance?

Until recently, India would take every single opportunity to dance. In 2011, her body was experiencing too much pain to do so many of the things she loves anymore.

If all goes well, this month or next, she'll get this hip problem taken care of and be the next winner on "Dancing With The Stars".

She Doesn't Deserve This

My oldest daughters name is India Frances Brainard. She and her siblings are my life. 

 

India, born without issue, but was injured only weeks after entering this world at a hospital; physicians error. 

Now at the age of 15, my "baby girl" is profoundly disabled and primarily non-verbal. 

For those of us who interact with India daily, are blessed with beautiful conversations in which her gratitude is so amazing when the messages is understood. Tearful laughter and relief is often the norm by both India and those of us patiently listening.  

But it's only those who clean her body without hesitation. Race India to the hospital during seizures as her breathing ceases and lips turn blue while she looks up with incomprehensible panic - who feel the desperation. It's us who defend her within the public system and horribly damaged family that have selfish motives other than her well-being or mine; resulting in terrible results. And regardless of physical exhaustion or financial ruin, we aid India day in and day out so that she may enjoy every moment to the fullest.

Today, India is in pain and needs help. It's a gut-wrenching situation.

India does all she can to try to mitigate the hurt.  She's had me change her pants thinking it's that which is causing the "bone to bone" agony.  As India tries to find relief, she's also has me move her from wheelchair to wheelchair in the belief that it's these devices causing the torment. And when none of the these work, she holds onto me with her one good hand trembling, asking "Daddy - help, please help, owe".

This morning,  3:00 am - Sunday December 8th, 2013.  I'm up as a result of the 5th time India has called out to me in pain in the hopes I can help her.

India has Cerebral Palsy, Seizure Disorder, Cortical Visual impairment and too many more diagnosis to waste anybodies time on now.  But I'll look all in the eye as she's in my presence and tell you that she is the most beautiful person and spirit to ever grace this planet that doesn't deserve what she’s enduring.

India is in dire need of help and thus the reason I'm reaching out to you.

India has dual dislocated hips, a dislocated elbow and a life threatening curvature of the spine. The cause is in part from her Cerebral Palsy and ten-fold that as a result of something that I'm still coming to terms with but not worth addressing at this point.

My child is experiencing life I'd not wish on anybody.

Until this day, I've tried to control the pain through Phenol procedures; nerve alcohol blocks.  All of which took place on the East Coast. Unfortunately, this is temporary but we needed to give my child time free of her debilitating hurt so that she could gain the strength and survive this inevitable surgery.

Equally important, I wanted my child to be a “kid” and experience going to school and making friends for as long as possible. A beautiful result is her "boyfriend" which was unexpected and brought me to my knees.

I sit here this morning reaching out to the world for help. As I once was wealthy and poured a fortune into my childs care as well as so many others.  I’m now in a dire financial position and am humbly asking for help to ensure India receives the medical care she needs. 

We have the private and state insurance in place for the next 60 days. But we are in desperate need of co-pay and day to day living assistance leading up to the intensive surgeries and during the recovery period.

The surgery can take place at Harvard Boston Children's Hospital in the next 60 days if I can find the means for the additional costs.

I'm humbled beyond words reaching out in this way but India doesn't deserve this and there is a way to take away her day to day agony. So I'm "Daddy" asking for help.

I appreciate anything you can do from financial support to emotion support.

Here is a link to what I've written so far about India's life and what happened: http://moomock.blogspot.com/

Thank you in advance for your time; it's appreciated beyond words.