Sunday, June 10, 2012
We have the summer calendar cleared. We were ready for months of surgeries, castings, recovery and physical therapy. Suddenly we now have an eerily empty schedule and I am utterly lost and unprepared.
We took Jaeya and Meisyn to our long awaited Shriner's Hospital appointment to finally get their evaluations along with the medical plan for their futures. It sounds so strange to be devastatingly disappointed that there will be no surgery for Meisyn to repair her dislocated hips. There will be no spica body cast to keep those hips in place as she recovers. There will be no leg braces to support legs for walking. There will be no back brace to keep her crooked spine straight. There will be none of this. Instead there will be priority given to three things:
1. Her comfort
2. Her safety
3. Her mobility
For Meisyn this will mean that she will be fitted for a motorized wheelchair. Won't she adore having the ability to zoom herself around? She will LOVE that chair. It will take me some time but I will get to the point that I will love that chair too. But right now, it symbolizes to me overwhelming sadness and loss.
I want to plead, "Tell me she has severe scoliosis. Please say that I will need to find a way to lug Meisyn around in her cumbersome spica cast. Tell me that she even has an enclosed form of spina bifida. But don't repeatedly pull her skin and let me hear you tell the other doctor that you suspect she has Collagen 6."
That is how it went. When I heard Dr. Pond tell the other attending doctor that he believes she has Collagen 6, I blurted out, "I don't want it to be Collagen 6". Dr. Pond looked up surprised and questioned, "You know about Collagen 6?" I replied that another little girl from China had just been diagnosed with Collegen 6 about 4 weeks ago and I have been in communication with her mother. Collagen 6 is a rare form of muscular dystrophy. These are the markers:
1. Congenital muscle weakness
2. proximal joint contractures
3. hyperextensible limbs
5. hip dislocation
6. protruded heel bones
7. Low weight and height
8. normal intelligence
Meisyn has all the markers. Each one. And the prognosis?
"Repiratory failure in the first and second decade of life is a common cause of death. Most die of respiratory failure in their first decade. No individuals with this form of muscular dystrophy have been known to reproduce."
It will take some time to have the muscle biopsies back the metabolic tests completed but in my heart I feel this is the answer. This is what my precious baby girl has been born with and will ultimately die from. Our Shriners doctors stated, "It is possible that Meisyn has a metabolic disorder or a myopathy but it is likely muscular dystrophy. Unless the tests come back to conclusively prove the contrary, she is considered to have muscular dystrophy." Makayla refuses to consider any such diagnosis until the tests prove it.
I have decided to allow myself to grieve now and if by some miracle the tests come back showing something else less devastating, then I can rejoice. For me, I can't put myself through months of hoping, hoping, hoping it is not Collagen 6 to have my hopes shattered if it is.
We have decided to live every minute with a fun list at hand. We spent the weekend swimming, shopping, going to her first movie, freezing our behinds off at the summer parade, and even adopted a shelter dog that I DO NOT NEED but that Meisyn adores. Right this minute Makayla has taken Meisyn to get her ear pretties she has longed for since the minute she saw Makayla's sparkly earrings.
Meisyn heard me crying at the computer as she approached my office. Soon I could hear her sobbing. She knew Mommy was sad and it made her sad too. She doesn't understand why I am crying. Her sweet, compassionate heart just wanted me not to cry. But if I had too she would join me. Makayla scooped her up for me and she and Shayna have gone to get her ears pierced. I am certain it will hurt a whole lot less than the piercing in my heart.
We know we will lose Ammon far too soon. And now we must likely do the same with Meisyn. How much can a heart take? I am afraid I will have to find out.
Posted by Stefani at 5:21 PM