I dont think Ive ever used this blog to express feelings I have in regards to family, mainly my extended family. But it is something that has bothered me for almost 3 years. I come from a split home, my parents divorced when I was still a baby. I have several siblings, some step and some half. I have lived with and been around these people all my life. In all I have 6 sisters and 2 bothers. So all together there are quite a few of us. Anyways, when we found out about Skylar having SMA, I told my family, devastated and in mortal tears. Maybe they did not hear what I said, or take it seriously, as one of my step sisters compared SMA to diabetes... yeah I know, I still cant belive that one. My frustration is this. I have a SMA family that I keep in contact with all the time, I believe there are 130 plus parents in this group. And I hear about how grandma is raising awareness by sending things to news studios, and how sisters and brothers are helping to raise money for a cure. The family's are so supportive, so concerned. In a way i might be jealous of that. You see with all my sisters and brothers, i have two that evrey once in a while will ask how Sky is. The others I never hear a word, there are no Birthday cards or Christmas gifts, or dropping by to see him. Its as if he dosent exist to them. When we were in the hospital for 3 months in 2006 the only person other then my husband and kids to come see Skylar was my dad, he came every week... Im so Thankful for that. At least someone in my family cares. After we got home my eyes were opened to how my family was, and I closed allot of doors. I would of been there for them if the situation would of been reversed. My mother brings it up sometimes, and I just would rather not talk about it anymore. She dosent see why Im upset. My thought is this, Skylar has a disease that could take his life, and if that were to happen they would all be knocking on my door with tears in there eyes. But how can you be sad for someone you didnt know, and I can say this, I would turn them all away. If you cant celebrate the awesome, precious loving life now, why should you get to if its gone. And im sure none of them will ever read this, but at least its off my chest, ad if they do ever read it I hope they hear my disappointment, sadness and utter confusion.
So Ill get off my soap box and move on to the wonderful things in my life. Skylar has been using his left hand more and more each day, he is even drawing and painting with it. he is moving his feet lots more and gaining some quickness in his arms, when we do trach care of trach change you have to constantly pull his hands down, he trys to get those little fingers in there. Skylar to me is the most amazing person, and i would give anything and do anything for him.