One thing I'm thinking about is this....
Asa has started making an "mmmmm" sound. Not a "ma" sound but just a steady "mmmmm". Kinda like a hum. Sometimes he is loud and singy. Sometimes it is deep and angry. Sometimes it varies. But, I like this new sound. He is usually silent other than grunts or screams so a "mmmmm" is music to my ears.
That is until we went into some stores this week. Asa will "mmmmmm" for a long time. Sometimes I "mmm" right back and we have a conversation. This week I noticed something. At what age do the "cute baby" comments get replaced by stares and then worse avoidance? Right now Asa's "mmm's" are cute and baby like, kinda like babbles. But what will the reaction be when he is 10 and only has "mmmm" or grunts in his vocabulary? What about when he is an adult? Will he be one of the adults out on a shopping trip with an aide and people avoid the aisle or section he is in? Ya'll know what I'm talking about.
What about his chair now? Heck, I even get compliments on it and people wan't one. I bet that won't happen when he is 12 and needs a wheelchair. Or when he is 30 and his head tilts to one side because he doesn't have the strength to sit up straight.
And don't even get me started on diapers and changes!!! I'm certain people aren't so understanding of that.
The point is when a baby is delayed, it can somehow be ok. But when an adult is delayed or disabled we look at them completely differently. I can admit that I did, even do. I was never mean or made fun of a disabled person but it can be uncomfortable. This week I tried to picture the adults I saw as kids, as babies. I see one lady and her grown daughter out often. They probably don't even see me but I wish I could pick the mom's brain a little. Boy, the wisdom she must have!!!
I have also been going through some pictures for a project I'm working on. Pictures of Disney World before Asa was even a thought. Pictures of us in Mammoth Caves while I was 6 months pregnant with Asa. Pictures of the beach from this past summer when Moma and Daddy took the big kids. It just seemed like too much to take Asa and the beach isn't someplace that Asa would love, I don't think.
All of that seems so far away now. A different life. I can't even image trying to plan a vacation anymore. And we have it easy. I know some who travel with a lot more accessories than we have! This just isn't how we thought it'd be when we found out we were expecting again. When is it ever how WE thought it'd be though!!
Maybe it is seeing all the people at the ball park who were pregnant last year. Now they have walkers and toddlers they are chasing around the ball park.
In the special needs world we have it pretty easy. Asa is delayed but healthy. Nothing immediately life threatening. So I can kinda ride on easy street for a while. But then I realize how completely different we are to "normal" families and I feel like we are on the outside looking in again. I guess that sounds like jealously doesn't it. Not that I want someone else to have to go through what we do. No child should ever suffer or have to endure what Asa does. I just wish we were "normal" too.
Don't get me wrong, I thank God everyday, numerous times a day, for the blessing in our lives. The struggles do make us stronger. I do see the world differently than before mito. But I also tend to walk around with blinders on. I wrap myself in this little cocoon and I don't peek out often. I visit blogs that are about special needs kids. I check and post on message boards for special needs kids. Most of my Facebook friends have special needs kids. It is a safe little world full of encouragement and love, mostly. Sometimes the real world isn't always that way!
I know this isn't a post you'd expect while you celebrate Mother's Day. But I had to get it all out. I'm not a good stuffer of feelings. Especially when you throw hormones into the mix! Anna and Barry probably wanted to throw me out of the van this afternoon during my mood swings!! I did get to walk around Target all alone for an hour though so that was nice!
And I'm so happy to be the mother of 4 great kids. Anna is so smart and funny. She loves Asa and is a huge help. He even wanted her today instead of me. He put her hands on his sides to be picked up and pushed my hands away! I'm not kidding!!!
Cade is....well, a 9 year old boy! He is pushing my buttons by wanting to negotiate and control EVERYTHING and while it drives me bananas, I'm sure those are great skills for the real world! Right?!?! He is also super sweet! We have been butting heads lately but he usually comes back around and gives me a hug and tells me he loves me! Gotta love a soft heart on a boy!!
Gracie is the funniest thing I've ever seen! She can say the sassiest things with the innocence that makes you believe she isn't being sassy. Maybe I'm just too gullible. And talk about a soft heart! She is my helper and isn't grossed out by much! Gracie is just so easy going she can be Anna's best bud or Cade wrestling partner and Asa's best nurse all in a single hour!
And Asa! Well, ya'll know he is the toughest 2 year old around! The things he has to endure each day and then depend on me to boot! Really, it is a wonder I can even remember half of what he needs! Poor guy, somebody should get him someone who is better at this than me!! And even through the pain and frustrations of his life, he is the best cuddlier in the world. He is very patient with me, usually, and try so hard to an easy kid!
So despite what I may moan about, I am blessed! I am loved and supported. I have great kids who cut me some major slack and love me all the time. That is my mother's day present! Just forgive me of my yelling, of my forgetfulness, of my weariness and love me and my frozen pizza suppers! Who needs more than those little arms wrapped around your neck and the "I love yous"?!! Maybe Asa will surprise me with a hug tomorrow, too!