My response to an article...

I read this blog. And I've definitely gone through stages where I couldn't read it, because Kelle is just too darn happy about everything. And she makes a life where special needs is involved seem perfect, and beautiful, and full of harmony. Well, I'm not here to crash the party, or at least I don't want to, but darn it, when the only way your child is fed, is through a tube, and due to your own forgetfulness you don't clamp the little white clamp on the extension set, and then while they're sleeping in the car, the tube pops open, and they puke out God only knows how many precious ounces of fats and calories, that's when special needs really blows. 

I read this article earlier this week when Kelle posted it for Down Syndrome Awareness Month. I left the article feeling a variety of emotions. The first one was anger, because for us and for most of the people I know in the special needs community, we/they do not have in-home therapy services. That would cost a fortune. Sure, that would be fabulous. To not have to worry about child-care for Isabella, packing up the feeding pump and supplies, diapers, spare clothing in case the contents of ones stomach empty by accident, and snacks, there must be snacks because obviously, Isabella will be starving the minute we arrive anywhere. Yeah, I think I could easily get used to therapy in my home. I'd even vacuum a little bit more so that they wouldn't leave my house with a good helping of Stella. 

As stated in the article: 

"Mothering a child with special needs? Well, that's the easiest part. Yes, there are challenges—because life is hard—but we are equipped to deal with them. Loving your child—regardless of how many chromosomes he or she might have or how many times you worry about the future or when and how she learns to read—it's like breathing. It's what you do, without even thinking. You love your child. You believe in your child. You fight to make the world a better place for your child. And that? That never changes."

I completely agree, I do feel equipped to deal with whatever challenges are ahead of us. And one of the only reasons I feel that way is because of the love I have for Isaac, and the amazing bond the two of us have with each other. The other reason, is my faith. Some people don't believe that God still performs miracles, but I believe that Isaac proves that miracles still happen. I would do anything for Isaac (and Isabella). I will fight for him to end. I do not believe that anyone is fit to fill my shoes (except maybe my mom, because she doesn't put up with any crap, and I've learned most of my survival skills from her). 

The only problem becomes the mothering part. Like my friend told her daughter's psychologist (sorry Laurie, I'm going to steal your words), "you don't want to be in this club". Sure, a new world is opened up to us. One that we didn't fully understand until Isaac came along, but the truth of the matter is, I'm no longer just a mom. I'm a physical therapist, an occupational therapist, a speech therapist, a feeding therapist, a nutritionist, a maker of blended meals, a care-taker of a g-tube, and then, on top of all of that, I have to try to feel normal, and remember to just be a mom. So no, in my opinion, mothering is not the easy part. Loving, yes, that's the easy part. Mothering a child who is par for the course, that's easy. And I didn't realize that with Isabella. At the time, I didn't realize that when we played with the shape sorter and she knew her shapes and colors in no time at all, that it would ever require more work than that. I took for granted that she stood up and walked, fell down, stood up again, fell down, and did it all over again, and within a few weeks was walking. Oh, and the feeding, wow was I naive. 

I love my children without thinking--that's a given. But caring for Isaac without thinking? Nope. Trying to figure out our next steps to take with him, following through on his goals, setting the stage for progress and success, planning out appointments, following up with all of the right doctors, that all takes a lot of thinking. And often, all of that thinking is really annoying and takes away from mothering. 

I agree with Kelle, I too have changed since Isaac's birth. I too am stronger, and have learned things that I never thought I would learn. And that is the truly wonderful part of this journey. But there are so many layers to this onion. There are the layers of grief, and acceptance, and the affect on your marriage, and "typical" siblings, and the list goes on and on. Some day, I want to share all of those layers. Not only for me, but for people who are becoming more aware of children and adults with special needs, and also for the people who are "in this club" and quite possibly need someone to relate to. 

Oh, and for the record, the designer of Britax car seats must have had issues with his parents, and decided to take out those issues on any parent who ever had to take apart the car seat to wash it. 

Can you tell that Isabella loves when I take her picture? 

Evelyn...

This picture has "I'm five, and I have an attitude" all over it. 

I can officially say that Isaac is walking, more than he is scooting. It's awesome!

He thinks he's pretty funny. Oh, and he picked out the robot shirt and insisted that he wear it.

He kind of walks like a chicken, and it's super cute.

Socially, we've seen some really big improvements. That's Milo, with the overalls on. He's also Isaac's greatest enemy, except, Milo doesn't realize that, so the fact that they are standing at the same table and Isaac isn't screaming or pushing him, is huge.