Saturday, May 8, 2010

Just thinking

It is late...after 11pm! That is late for me, I should be in bed. But my mind has been wandering this week. And not really to happy places. Maybe cause Mother's Day has been approaching. Maybe cause Asa's been in a rare mood. Maybe cause we have 2 big appointments in the next month. Who knows but I've been in a funk.

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!


Christina said...

Sounds like you need a girls' day that includes pedicures or maybe just hanging out by the pool. You are such an inspiration to so many people! I wish I had something inspiring and uplifiting to say but I've got nothing! Sorry! Love ya' and let me know when you need to get away and I'll help with that. Haha!

Debbie said...

It's good to release your thoughts and emotions and not stuff them down...this is your platform to do that!

I hope you have a beautiful mother's day!

m_clement said...

Mito really does make your life change! I am glad you feel comfortable sharing your thoughts that so many of us share. It makes it not so lonely in the "mito world." I hope you had a fantastic Mother's Day, and give little Asa a big kiss for me!


ANewKindOfPerfect said...

We talk about this exact subject quite a bit. My Peanut doesn't talk, but she makes an Aaaaaaa sound a lot. And like Asa, she makes it in different tones and levels depending on her mood. I do it back and forth with her, as though we're having a conversation.


It is cute to people now. She's 6.5, but looks like a 3 year old. I often wonder if it will be so cute when she's 12.

I know that to ME, and to YOU, the sounds and conversations will always be cute. :)

Anonymous said...

You will take the next years just like you have the last 2 1/2, one day at a time or sometimes one hour at a time or even minute to minute sometimes.
I can't even begin to know what you go through. I do know you and the rest of your family are an inspiration to many
but I bet that doesn't take away the hurt you feel and the questions about the future. All I can say is know that you guys are loved and supported more than you probably will ever know but again, that doesn't take the hurt away.
I agree with Christina, you need some time off and I can help with that. We'll have to talk about it.

Heidi said..., you took the thoughts right out of my head. They hit home for so many of us, even though I know our kids are so different. We get it...I mean anyone thats thrilled to just have an hour at Target all alone! lol.

I do know what you mean, when do they stop being cute? Jack is 7 and yes he can talk and for the most part looks normal today but when he's in his chair or give him a feeding, people dont exactly smile at us. I remember when he was 18 mos old and not doing anything yet, no crawling, no steps or pulling up. He just laid on his back and kicked like a newborn. Some lady at one of those mall play areas came up to us and called him lazy, but she still thought he was cute! Wearing diapers at 4, then 5 and then 6, face it, not cute. I just got used to it.

I try to prepare myself for the changes ahead but theres so much I cant prepare for, this disease is so unpredictable. I dont know what to prepare for. BUT Im sure he'll be more dependent on a wheelchair at some point. AND now I worry about our daughter too, she's having more problems.

Its sometimes hard to look back at the old photos of me...when I felt more like a "normal" mom. Even though our first had Dev delays/feeding issues, we were always told it was her prematurity so we were oblivious to what was to come. But like you, I feel so blessed, even in the storm, I know Ive got something special.

HAPPY MOTHERS DAY, youre one amazing Mom. AND thank you for all the support you give me and so many others. I love reading your comments :) hugs and prayers--
Heidi & Jack.

(Asa will certainly be ALWAYS cute to me!)

Marsha McClure said...

Kim, I just adore you! You inspire me to be a better mother and wife!

I must tell you that I believe it is so healthy for you to express your sincere feelings........And,you know, the release allows you to create more bandwidth to focus on the needs of your family.

I know for certain that EVERY concern, fear, or doubt, will be met by GOD's grace and mercy. It has been enough and it will continue to be enough....

And, for those of us on the outside looking in, all that we see is a mother (and a family) strongly bonded in love and faith. I hope that on Mother's Day, you were truly certainly deserve it.