Happy trails

4/27/11 Wednesday

This is how I am feeling today, that nothing is ever enough, that is except pure love.
I was working all day, and Jewel had her second last O/T session with Crystal.
Raven said that it was an amazing session, all about the arms and weight baring.
Some of the gold nuggets that we have learnt are; nutrition is the golden key, keep the child moving at all times, keep them in functional positions - not left on back - if on floor put on side or on stomach.  Weight  baring on arms opens up hands, builds stronger bones and is the foundation for functional movements.
The 1hr session was focused on her arms because they were so tight, they looked like chicken wings.
We do not want this, her range of motion must be kept and increased. Stretching and weight baring is critical in keeping the body healthy.  Massage is good as well.  (The muscles dictate the shape of the bones, so keep those muscles balanced.  For too loose will enable bones to dislocate and too tight can deform, pull out, fracture and break bones.  This is how powerful the muscles and ligaments are.)  So we will ask Shriners Children's Hospital for a elbow brace.
It is never ending and this feel so scary once again.  So I will look at the glass being half full, I must be grateful for the session, thankful that she focused on Jewel's arms and alerted us.  It is not worth being naive to the situation, so we will roll up our sleeves and carry on.
"One never notices what has been done; one can only see what remains to be done." -Marie Curie, French scientist.
Jewel had her AFO's on most of the day, and I did not take them off even when she said that they,  "really hurt".  She sat in her wheel chair a lot despite the discomfort.  I am learning that life is full of discomfort and pain and if I continue to baby her and take her out every time she cries she will suffer in the long term.  I am learning and growing in this area, growing out of being a codependent  and enabler Mommy.  So I will toughen up and hope this will help her grow.
Jewel was emotionally sad and cried about her Da.  His choices affect her directly and yet he constantly bales out on her.  They have a strong bond of love and we are all connected as a family, so our choices directly affect each other.  It makes me angry to see people who are mobile choose not to live to their full potential.  We need to make a way for Jewel to be ambulatory, this is my driving thought.   Life happens weather you have a special needs child or not.   All we are left with is our attitude we take into the situation and hopefully we have more love in our hearts than fear, more hope than despair.  I/we have to believe in the impossible.  "Those who can see the invisible can do the impossible".  We have to be able to look beyond this moment.  Our faith is what sustains us.  Our family is not perfect.  We are very organic and real family.  We can look camera ready and picture perfect, like our Christmas card, we all looked great.  Jewel was on her horse with Raven behind her, supporting her on Cookie Dough, we all looked 'normal'.  You could not tell that Jewel had cerebral palsy in that picture, and we all looked so happy.  But behind that photo is just a family trying to keep it together, trying to help their daughters reach their full potential.   A family trying to make ends meet just like other families, a family trying to help Jewel get all the services and equipment and help that she needs to be healthy and live a full life, with love and integrity.
We are trying our best and at the end of the day this just has to be good enough, then we do it all over again tomorrow.  Happy trails xx