Tuesday, March 10, 2009

Some days are harder than others.........

Its so hard to know what to do when Alex is so grumpy. We don't communicate with one another, like most moms, and 18 month olds....That's right Alex is now 18 months old!!!! He cant tell me his tummy hurts, or that he is hungry. I cant ask him to go get the ball for mommy. Communication is one of the big mountains that RTS brings. So while I'm in the middle of this grumpy bird period, I am up close and personal with the lack of communication that I have with Alex. I know you mommas to other differently abled kiddos know the poem Welcome to Holland. It is pretty, and it brings out the special parts of raising our children, but it doesn't mention, or at least in great detail all the rocky spots, and mountains that will be climbed, and climbed again. It talks about the beauty, but leaves out the vomit, it talks about what is learned, and forgets the feeding pump. It leaves out the malformed body parts, and the surgeries, therapies, and tubes. So while I'm in the midst of this struggle of Alex wanting to tell me whats wrong, and me desperate to figure it out, I leave you snippets of my Holland. Beautiful, and hard, unfair, and perfect, all at the same time.........




































This is my world, and even though it is full of feeding bags, tubes, holes in my child's stomach, cute angulated thumbs, puffy feet with odd deep crease (geneticists words not mine), therapy, expensive milk replacement, and a perfectly sweet non-verbal boy, its my home, some days are just harder than others.




8 comments:

Brandi said...

Jessica,
It's so evident that you ARE communicating with Alex. The video you posted a few days ago of him "reading" and turning pages is his way of communicating "Hey mommy, I really get this reading thing." No, it's not the way your first two boys did it. It's Alex's way. Tubes, bags, vomit, and doctors appointments along with smiles, laughter and making progress slowly but surely are our boys' way. I'm sorry you had a hard day. Sending you hugs friend.

The VW's said...

Poor grumpy Alex and poor Momma! Hope he starts feeling like himself soon!

'Holland' is a beautiful and wonderful place to be, but somedays a vacation from it sure would be nice! Hang in there sweet friend!

Terri H-E said...

True words. But you can tell him to go get the ball for you. You can tell him, model for him and then one day (maybe in a few months, maybe in a few years)he'll find a way to tell you to get the stinking ball yourself. Also true words.

He does communicate to you and he does understand what mama says. For us, believing that has made it so.

I have seen a lot of RTS thumbs and toes, but never have I seen a set of each that exactly match Addie's until your pics of Alex's. Her thumbs were C-shaped just like his before her surgery. Her great toes bend under the others, like Alex's and have, as my 9 year old calls it "a butt crack" at the base. Odd crease is a step up from her description, I think.

Hang in. This day will give way to a better one.

Michelle said...

I'm right there with you, Jessica. ((hugs))

Marissa said...

Communication issues stink. I am dealing with this with Marissa right now, to a lessened degree.

But I have to agree with the others, from what you have shown us here on this blog, there is communication between you two. Of course, it is not on the level of most 18 month olds and their mamas, but I can tell he communicates with you; the way he smiles at you, the way he "talks" and turns the pages when daddy is reading to him, the way he puts his fingers in your mouth to pacify himself. This is all communication. It does stink that he can't tell you what is wrong, but give it time.

I pray there will come a day soon that he surprises you and lets you know just what is up!!

Hugs to you my friend,

Alicia

Ally in Wonderland said...

I can't ever claim to understand what you are feeling, I'm a tour guide in Holland, not a tourist. But I can say, your boy is beautiful. He may make you climb mountain after mountain, but I can see the love you have for him and you charge up each and every one. I can't even express to you how badly I wish the students in my room had mommies like you. You may have sad days, but that's ok, you're there, you love, you care.

YOU'RE AWESOME!!!

Kelly said...

Wish I could come to be there doing those not so fun things with you!

Kelly W.

Amy Genn said...

I'm right there with ya, sister!
It all becomes old hat after a while...and we think nothing of it all...and then a moment hits you and you think "this really sucks, huh?" Then you move on and the day goes by again...in our "new kind of normal"!
My son has cerebral palsy...and is severely disabled, non-verbal, non-mobile and has been having lots of issues lately that we are trying to figure out. I had a moment in the hospital a couple weeks ago where I thought "I just can't do this". But, luckily that feeling fades as fast as the tears...
Have a great day!