Today has already been a day of mixed emotions and overall sadness for me, it was on this day one year ago I took my love bug Sky to childrens hospital for test results, and its then we learned of his SMA.
Just reflecting on events and changes not just to Skylar but to our family is hard. Its been an up hill battle ever since March 14th 2006. SMA is a cruel and heartless disease, it takes away so much and its so hard to see your baby upset because he cant do something. You know he wants to, but he just cant.
He knows he is different, he has figured that out a while ago.. He will touch my neck and then touch his, what do you say? He knows that when he losses his ball he cant jump up like everyone else around him and get it. But he does know that his mama and daddy are hear for him, and we will get that ball and we will be there for him as he gets older to try to answer his questions of why, I just hope that when he asks me why he cant, I have the answer. I tell him now that God just made you extra special. But to be honest there is NOTHING special about SMA. But my Skylar is SPECIAL, he is very patient, he may get upset for time to time, but I think any of us would...
I love every season and every day, but March scares me, there were too many things that went wrong last year. I cant wait for Spring!We would like to again to ask everyone to please log onto GoodSearch and for one day select FSMA, and help us find a cure for Skylar and every other little person out there with SMA.Thank YouSheila
OK enough of the mama pity report....
Skylar is my little rock star, he has been back to his normal little self for almost a week. We are done with the Cipro (Thank God) that stuff is icky... Today we are taking in a sputum spec to make sure the bug is gone. We should know Friday morning. Big Bug Hugs Sheila and Skylar
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