Monday, March 31, 2014

Day 3 - UNM Hospital, Better Day

Day 2 was much better for India. She was exhausted, rested a lot and had much less pain.

Sunday, March 30, 2014

Dear God - Your Relationship With My Child Is Frightening Me

"Dear God"
Your Relationship With My Child Is Frightening Me...

My beautiful India is my best friend as are her two sisters and brother; I'm sure you know this. India however was dealt a bad hand, apparently under your watch and has now been sentenced to a less than comfortable existence. Did my child fall through the cracks while you were distracted, did you make a mistake? Surely you'd not intentionally inflict this horrible and debilitating pain on an innocent child if you are truly an all powerful, loving and compassionate God. 

As you know dear God, almost every day for the past 15 years, India's big beautiful eyes have looked up at me for help; what was your reason for this undeserved pain placed onto a little girl? You've watched as India time and time again holds onto me with her broken body and tells me that things aren't ok. 

I regularly find myself trying to comfort India as she sobs from the hurt, frustration, fear, or anger. And I have no way to make a difference other than to bury her head into my chest as I rock back and forth and hum. Will you explain why you've allowed this to happen dear God?

God, remember a couple years ago at the park? It's something I've tried to block out of my mind but find myself thinking about all the time. 

You and I witnessed India experience the joy of children her age running up to her at a park. We watched as the kids started asking India questions. They wanted to know her name, why she was in a wheelchair, was it fast and one little girl even said "you're so pretty". 

At that moment I felt a warmth in my soul that I'd never known and wanted to embrace you to show my gratitude. You and I witnessed India become the happiest girl on the face of the earth; smiling from ear to ear. 

But as you're aware God, India couldn't respond to her peers in a way they could understand. I'll never know, why you chose to not intervene, make an exception, perform a miracle and allow India to communicate with those kids; would that have been too much to ask?

If it's true that your power affords miracles like water being made to wine, the Red Sea being parted and your sons image burned onto tortillas, I'd think you could have given a bit of assistance to my child to have the ability to communicate to her friends in this rare but beautiful situation. But I might be asking way too much of you.

So God, when you did nothing, I quickly tried to translate and answer all the children's questions in a silly and entertaining way to keep their attention on my daughter. 

However India's excitement from all these new friends looking at her with big smiles and asking about her, India's body stiffened up and she started to rotate her head back forth.  Then she squealed with delight as her eyes sparkling with happiness.This is when the children lost their smiles and their questions for India stopped. They didn't understand India or what her body was doing; they became afraid.

One of the kids asked me in front of India “what’s wrong with her”? Another said “why is she doing that”? India sat there in her wheelchair watching helplessly as something beautiful become tragic.  India's smile went from an ear to ear pure joy smile to a nervous grin. India looked up at me hoping I could do something. 

The kids turned and ran off before I could say a word. One of them stopped and turned around to look at my daughter. India still was putting on her nervous grin as she glanced back and forth between me and the kid who had stopped turned around. 

God, after this and so many other harsh experiences that I'd thought you'd protect my child from, she took a terrible physical turn for the worse.  Your "child" India could no longer go to school full time and be with her friends because of her dislocated hips. She'd been reduced to days of floating in a hot bath to manage her pain.

It was one of these days that India decided to ask me the most painful question she'd ever asked me:
  1. Hand in a fist with thumb going up and down = “India”.
  2. Wiggling fingers quickly = “how many days or what day is it”. 
  3. Then India did a new sign which was spiraling her good arm upwards from her hips to the sky ending in an upward pointing position with her index finger.  
  4. She then placed her crippled and functioning hand together at chest level = Virgin Mary. 
  5. Next India lifted her hands to her forehead as she turned her head down onto the tip of her fingers = praying.  
  6. India then took her good hand and placed her face on the back of it at an angle and closed her eyes = sleeping.
My child had just asked me how many days until she gets to die, go to heaven with Mother Mary and rest.

India's pain, both emotional and physical, had caused her to look to the Virgin Mary and Heaven as a place of rest and comfort.  

As you know God, I'd never once taken India to the Catholic Church much less any other church. Yet since the age of 4, she's had a deep appreciation of the Virgin Mary; have you two been talking?

Not long after India telling me she wanted to die and go to heaven, she asked if her wheelchair had to go to Heaven with her.  When I told her "no", India asked "why"? It was explained to her that when she went to Heaven, she'd walk through Heaven's gates on her own two feet and Mother Mary would be waiting for her.  India let out a gasp, swiped her hand over her forehead and said "wheew" in a sign of relief.

India then pointed to her legs and hips and said "owie", then did the sign for going to Heaven.  When I told her "no, you wont have anymore pain in heaven", she started to giggle and asked if I was going to go with her...

Day 2 - UNM Hospital, Nightmare

India had the worst pain attacks she's ever had in her life today. When it happened, they were so jolting that the physical reaction for those who were in the hospital room was frightening. And the pain didn't stop. She screamed in agony for most of the day, into the night and early morning.

I prepared myself at one point for my little girl to die. I could see the sparkle in her eyes disappear, She had never done that before.

Late in the evening, India began to moan. We realized that her IV had failed and the IV fluids were filling her wrist, hand and forearm with fluids. Her forearm began to look like a balloon.

So at 1:30 am, doctors and nurses were trying to place a new line. It took them hours and my child being stuck with needles over and over. They brought in an ultrasound to locate a good vein which didn't help.  A line was finally placed in India's shoulder.

Her arms are riddled with puncture marks from failed attempts to place an IV...

Saturday, March 29, 2014

Day 1 - UNM Hospital, Returned In An Ambulance

India has been taken to the hospital tonight by ambulance. She was barely eating, drinking, major pain and vomiting.

India is being admitted now. The doctors and nurses are working on stabilizing her now and trying to control Indias pain.

University of New Mexico Hospital - Carey Tingley Hospital Pavilion Building - Floor 5 - Room 5511 - Bed 10. Visiting Hours 9:00 am to 10:00 pm. Nobody under the age of 14 allowed.

Tuesday, March 25, 2014

What The X-Ray's Tell Us.

Pre-Hip Surgery X-Rays

Post Hip Surgery X-Rays

Spine (Scoliosis) X-Rays

India's hip surgery is done and we are home after 2 months in Boston. India will be recovering for many months and require around the clock care.  Soon, India will be facing another procedure to place rods along her spine. Indias' Scoliosis is at the point that it's putting dangerous stress on her heart and lungs, not to mention painful.

We have a long road ahead of us and are grateful beyond words for your support.

Wednesday, March 19, 2014

Day 57 In Boston - On Our Way Home

After 57 days in Boston, India and I were finally going home. It was a very emotional day for both of us. We had made friends with some of the most amazing people imaginable.

A trip that was supposed to last no more than 21 days turned into something I'll never forget.  

When we said our goodbye's to 10 Northwest at Harvard Boston Children's Hospital, it was all I could do to not have 57 days of intense emotions, highs and lows come rushing out of me.

Saying goodbye....

Headed home...