Monday, May 20, 2013

TAKE THAT SPINA BIFIDA!!!

I want to share with you the big milestones we've had!! It's been slow going with the whole standing up thing. It was very de ja vu like and reminded me of our whole crawling expedition. Finally he started standing up at things here and there and climbing on everything! Problem was the standing thing was here and there and he didn't always like it. Then he really wanted to walk. He was constantly putting his hands in the air and saying "walk, walk!" Problem is, he doesn't know how to walk! This made for a very annoyed little Eddie. Because he was so interested in walking Eddie and I started brainstorming on how we could help him out. We saw on Facebook that another family built their child a set of parallel bars out of PVC pipes. So of course I went to work nagging Eddie to build a set! I thought for sure little Eddie would be walking with it in no time. Well, not quite! He hates them, not that that is going to stop me from encouraging him to use them every day! He hasn't really walked on them but he will! Trust me! Here's a picture of the set Eddie put together for him! 



So just when I was starting to get concerned that he wasn't gonna get it. I started mentioning to his therapists that I was concerned by the fact that he still wasn't getting the rolling over thing or the sitting thing and all that when they kept telling me there was probably nothing to worry about and that because of his thin corpus callosum he may have trouble connecting certain things, but that with all of our therapy and exercises his brain would rewire eventually and he'd get it. I totally trust our therapists but I have to say as a mother it can be tough sometimes watching your little one struggle with things that are easy for his peers. Watching parents not even notice things like crawling to sitting, and for us watching our little guy get so frustrated because his brain just can't figure it out. Most days we go out and people don't see anything wrong with Eddie except for a kid whose maybe "lazy" at walking. People say things like "Oh he''ll get it, he's just a lazy walker. Lots of kids are." Or people compare him to their kids or grand kids saying "Oh my little guy was like that too, he'll just get up and run!" Or sometimes I get the opposite end of the spectrum, people say things when others ask if he's walking yet like "oh no, he can't walk, his legs don't work good." I know that neither one of these situations are meant to insult but for some reason both hurt a little. I either want to yell, "HE'S NOT LAZY HIS BRAIN IS JUST CATCHING UP!" or I want to yell, "HIS LEGS ARE FINE HE'LL WALK WHEN HE'S READY!!" Either way I want to tell them to "LEAVE HIM ALONE!!" I understand though, that there is so much focus on milestones. I get at least two emails a week telling me what milestone my 15 month old should be at. What he's doing. I now just delete these emails because they just upset me. They make me doubt myself as a parent. So I say, "screw you milestone emails, back off!" 

So just when I was getting frustrated and doubting myself he surprised me again! This morning we Bella, little Eddie and I were playing in the living room and Eddie stood up at the couch like he usually does while I'm sitting there and said "Hug, Hug" he started inching toward me so I moved away, to my surprise he started stepping side to side inching closer! I was so excited! Movement to another parent is exciting but to a special needs parent like us it's miraculous! There's no way to explain it in words. Only other special needs parents understand that feeling. To make it all better about 10 minutes later him and Bella we playing on the floor and I looked down and Bella yelled "Hey Mom! He just sat up!" I didn't realize what she meant until I remembered that he was crawling just before that and now he was sitting. You have to understand that it took forever for him to get sitting to crawling and he still hadn't figured out how to get back into sitting. It was so exciting!! (by the way he's now done it like a hundred times!) THEN, about ten minutes later I had him on the floor on his back tickling him when he rolled right over to his belly! Something he hasn't done since he was like 7 months old! Such an exciting day!

So all I have to say is TAKE THAT SPINA BIFIDA!