HARD TO FIND THE WORDS

Sometimes SMA sucks so badly I can't begin to put it into words. We in the SMA community deal with it the very best we can. Once we are thrown into this unknown bullshit disorder, we research, talk to and support other SMA families, and learn more about neurology, pulmonology, nutrition, cardiology, physical therapy, endocrinology, etc than we ever wanted. We do it all because we love our kiddos, and like any parents, just want the best for our children. We find joy where we can and celebrate the lives and accomplishments of others with SMA. That's why when a sweet, beautiful, smart SMA child dies, it stabs us all in the heart. Your heart sinks, you're stunned, and really you just want to crawl in a cave and grieve for anyone who has ever had to deal with this awful disorder. This family is very active in the SMA community. So many people that are in my "inner SMA circle" are shocked to hear of her passing. She will be "forever 7" but honestly, this is a term I'm having a hard time accepting right now. We say we cannot imagine what the family is going through, even though in the back of our minds we know that really at any time it could be OUR kid next. So many of us have SMA kids who have far outlived their expectancy. Hard to believe Colby is only 11, yet is considered an "old man" in the SMA Type I world. News like this resonates how precious our children really are, and how every day we have we them is priceless and should be celebrated. Listen to me people, because I'm as guilty of this as anyone else, but please, please don't sweat the small stuff. Get perspective!  

I HATE SMA! That's such an understatement. Really I can't find the words to say how devastating this disorder can be on an individual and family. This is not a pity party. This is reality. The harsh, overwhelming reality of raising a child with SMA. This is where I get my perspective. Yes, it's important for Colby to learn math, how to spell. But I always try to keep my bearings about all of it, because his health is ALL that really matters. Keeping him alive and giving him a good quality of life is my first and only goal in this world, period. Many days I want to shut the whole world out. Lock the doors, pull the blinds, turn off the phones and do nothing but spend time with my sweet boy. Snuggle with him. Listen to him jabber. Have him squeeze my fingers. Look at his adorable, handsome face and take in every precious second. I've gotten to do this for 9 extra years that doctors said I'd never have with Colby. My heart breaks for the families who no longer have their sweet children. I don't use this word often because I don't want to sound like a whiner, but it's UNFAIR.

I feel like this blog entry is rambling on, but I'm just trying to express how very sorry I am to hear of Kaitlyn's passing. I will keep the family close in my heart and will be praying they some day find comfort and peace with all this. I started this blog as a way to keep family and friends informed of what all is going on with Colby. But as time goes by, this blog has proved to be very helpful to me, too. It's a way for me to get some of my feelings out, the good, bad and ugly I suppose. So thank you for allowing me to share and to vent. Thanks for celebrating the good times, too, and for staying connected to us through my blog. Your comments and support over the years help me deal with SMA in a somewhat healthy, manageable manner. I'm very grateful for that, because on days like this, I need it in the worst of ways.