the little things.

Usually I am ok with where Kendall is at. I think sometimes I waffle between thinking of her as a “special needs child”, and thinking of her as just my baby who happens to be a little more medically involved than my others. (It’s a subtle difference, but in my heart, it’s huge).

I have long struggled to watch the beautiful children of my friends who were born weeks and even months after Kendall get to do things that she cannot, experience things that she cannot, move and express themselves in ways that she cannot. While the larger part of me recognizes that each and every baby is different, and each and every milestone is worth of celebration in ANY child, and truly, I AM happy to rejoice with them in the news of their babies walking or saying words or whathaveyou – a small part of me is just the tiniest bit sad.

While I have LOTS of HOPE that Kendall will soon catch up, and while i am SO encouraged by her progress as of late, it doesn’t make it any easier to see, in real life, the disparities between her and “normal” babies.

It hit me today at church – I went up to check on the nursery and I saw Kendall, sitting in her stroller, looking out at all the other kids walking around, sitting up and playing with toys, interacting. And i could see in her eyes that she SO BADLY wanted to be on that floor. But we don’t have a regular nursery. We set up a few mats and a carpet in the middle of a school room, with hard floors and no soft surfaces. For a baby who is constantly falling backwards with no self-help/stopping skills in place, it could be a pretty painful experience! And I waved at her and she smiled at me and bounced in her happy dance little way, and as i walked down the hallway the tears filled my eyes. How long will she be unable to play with the other kids? How long will I have to watch her sit and watch the others, holding back the tears, being strong for her?

She IS making progress and I am so very grateful for that. But EVERY SINGLE SKILL that child has, she has gained through the work of FOUR therapists, FOUR days a WEEK of intensive therapy, not including the exercises that I do with her on a daily basis. She has had to work so hard for each and every new skill she gains. She is amazing! She is an inspiration to me on a daily basis for all that she endures with a smile on her face. But that doesn’t make it any easier to realize that even though she is catching up – she still has so far to go.

And yes i do realize that this is a massive pity party post. In the grander scheme of things, we have so very much to be thankful for. And above all, we always have our hope. hope that things will continue to improve. That maybe she WILL really just grow out of all this some day. But somedays it still leaves me feeling a little…..stuck.

Stuck between “normal” and “special needs”.

And maybe it’s just that i am not quite ready to fully deal with the label of “special needs”. I know Dr. Natalie brought it up to us at her four month appointment, over 6 months ago. And i have been at various points of dealing with it over those 6 months. It’s just so hard to know where you fit without a diagnosis.  And truly, I am not sure I want a diagnosis either. I think sometimes ignorance is bliss. I just don’t know that I am prepared to deal with a diagnosis that could hard to accept. I am not even sure exactly what the docs are looking at right at this moment.

so we just continue in our “stuck” phase.

with a baby who LOOKS and ACTS pretty normal, thank God.

Except that she has a tube in her stomach and stitches holding her esophagus around her stomach.

And she needs twice the amount of a very specialized formula in order to survive each day.

And she cannot have a bowel movement on her own without lots of meds and lots of help from mommy.

And she endures four hours of therapy every week just to try to get her “caught up” with normal baby skills and make sure she doesn’t lose any skills she’s already gained.

And she still wears the same clothes she wore 5 months ago because she hasn’t really gained weight like she should.

And she is still in her infant seat because if I don’t have that then she can’t go to any stores with me because how do you grocery shop when you are pushing a stroller, but can’t put her in the top of the cart because she can’t sit up on her own?

And that she hasn’t made it more than 3 months without being hospitalized, and even less than that without being in the ER and even less than THAT being at one specialists office or another and still NO ONE can figure out why she just isn’t NORMAL…

So that’s where i am at.

 

Most of you just get the shortened version of

“we’re doing good!”

though, when you ask.

so i thought i’d let you know the long version just in case.

We’re good. We are good. Things could be so much worse. And God has had His hand upon us. And we are surrounded by amazing family and friends who lift us up in prayer and gather together to help care for our needs during times of not-so-good.

But sometimes we’re just a little stuck.