Sunday, May 1, 2011

the view from here...

 Jayci is getting stronger everyday, and I will always have hope for a complete healing.. Currently Jayci's primary movement is a "butt scoot"..  at Christmas time 2010, She started "bearing weight" on her legs (age 2). She has a gait trainer that holds her up and she is able to take steps. She is in Physical and Occupational Therapy up to 4x per week. It would be hard to put an accurate age of where Jayci is at physically.. For instance, she is unable to lift her head and chest up from the ground while on her tummy. but while sitting, she can sit completely straight with her head up. the nerve racking part is, if someone startles her and she starts to fall, she cannot stop her fall, her low muscle tone in her arms is not enough to assist her with stopping a fall. Lifting her is different then lifting a normal child, you will instantly feel the "low tone". She can roll, and her newest accomplishment is while sitting she can get into laying. She loves her Jumpy, she is able to dance and twirl in it. Jayci will love it, if you "scoot" with her.. or "sit" by her.. she demands it quite regularly especially by one of her papa's.
The following is part of the email I received, after the phone call from the doctors at Gillette Childrens..
If you are a mother who has ever received a phone call "like" the one I did.. You know there are no words to write or speak, to explain the fear that I was experiencing in that moment. I had asked the woman to send me an email, because I couldn't even hear the words being spoken to me.. here is just a paragraph..
Congenital muscular dystrophy with merosin deficiency is the most common form of congenital muscular dystrophy accounting for approximately half all congenital muscular dystrophies.  It is estimated that 1/76,000 individuals is affected with Congenital muscular dystrophy with merosin deficiency world wide.  This condition ranges from never walking to walking at the later age (2 or 3 yrs).  A majority of children are diagnosed at birth or shortly after because of low muscle tone.  The best predictor of how a child affected with this condition will do clinically in the future is how they are currently doing.  Jayci is continuing to improve and gain new skills, which is a great sign...
Congenital muscular dystrophy, merosin deficient- 5 words... I had never heard, read, wrote or said aloud before that moment. These 5 words were placing my baby girl in a "group of individuals", these 5 words were bringing me more tears then I thought were possible, these 5 words were going to now, be a reminder that my life was not going to be the way I had originally planned.  At the beginning, 5 words sounded hopeless, Its been over a year now, and it is easier to say them, they are words, it is easier to hear them, partly because the unknown, became the known.. or rather, the starting to know. Jayci may never get to dance like other 2 years old spinning around in their princess dresses, or at a prom, or at her wedding. She may not ever get to walk around the mall shopping with me,  She may never get to run full speed into her daddys arms when he gets home from work. All these things and more I had never thought about until the day they said "it may never happen"..As Jayci's mom I can't stay there in that mindset. Please remind yourselves daily that there is hope. Our world needs hope, we all experience and feel different hurts, pains and obstacles. But we must move beyond it, because we can't live there forever in a state of fear. A choice can be made to love, forgive, or serve in such a capacity that helps lead to a decision to heal a "hurt". to run to your child, when she can't run to you, to pick her up and dance with her in your arms wipe tears,  Yes, it is a very different view today. and no matter what obstacles you are going through today, I challenge you to live with Hope, because Joy will come! I am a mother, that has learned to help heal what I am only capable of healing,  and to trust the only One to heal, that which I cannot.