Yesterday being one of those days in reality this week has been horrid.This week I had dreams crushed,stress increased and drama unfold . The baby girl had a fever and a weird rash, then Sammy started feeling sick, nothing was getting done, then my tooth broke. I found out at the dentist that I would have to have yet another tooth pulled. "Just add it to the partial you are going to make" was the response of the dentist. Yeah thanks it's just that easy. I am 34 years old and I have some dental issues, those have caused me to loose most of my back teeth at this point. You see, not taking care of your wisdom teeth can apparently cause roots across your other teeth to shift and break, that causes hairline fractures in the tooth, opening them to decay. My teeth often go from the inside and by the time I know something is up,its too late. It sucks and I was really angry.
I sat there on the way home crying (who thinks that it wasn't necessarily just about the tooth?) and yelling at God that I didn't get it. This week has been one major disappointment after another and I was angry. I keep asking God what exactly it is he wants from me... I still haven't gotten an answer. It's almost funny right now how angry I was about this. Then I came home and relaxed for a while on face book and I found this.
Avery's Bucket List
I will let you head over and take a gander. It's ok I will wait, I have time. All I could think was "My God, and I was angry over a tooth"
It got me thinking... How does a person parent when the end result isn't going to matter? How does that change your train of thought on which to choose? I had read on another blog a while back the same concept, the child was older when they found out and for whatever reason it didn't resonate like this does. Perhaps its that Avery reminds me of grace, perhaps the joyful looks on mom and dad's faces coupled with the words of a post "SMA please don't take my smile away" It's hard for me not to cry. What do you do when those big decisions that the rest of us stress over have absolutely no consequence? The end result never changes, it's always the same. This little girl may live to be 18 months. That is just six short months from now for Grace. After looking at my girl, and reading Avery's blog I thanked God for his blessing and I quit whining.
Because yes while this is hard and this can suck We are all still here. No one knows what tomorrow brings and yes there may not be one for any of us, but to know your child's last day is coming, It makes my heart hurt just to think about it. Autism is hard, but there are tons of people in our corner. It doesn't mean the fight has been won, it doesn't mean the best options for our kids are there, it doesn't mean much really. It just means that someday something may come of all the research that can maybe help some of the 1 in 88. No one is researching SMA. How can this be? Kids are dying from this and there are no clinical trials or anything? Here you can read more information on SMA and find ways to help get the word out.
|Families of SMA|
So today I will hug my babies tight, because even though dealing with autism sucks some days, I will likely have very many more and that, no matter how you look at it, is a blessing.