Wednesday, May 4, 2011

good. bad. ugly.

I wanted to show you some photos of Braden at almost 10 months old... Standing. Sitting. Expressing emotion.
Feeding himself. Climbing stairs. Going down the slide...

It is my desire to show these photos so that everyone can understand the kind of pain and sadness I experience when I see other children who are Mabel's age doing things that she should be doing.

One of the hardest things about this roller coaster I am on is that nothing feels validated or justified. It's as if, because we have no formal diagnosis, people assume we're being dramatic. Because they see photos of her looking at the camera, they assume that she's good--progress must be happening. They assume that she is ok.

They aren't behind the scenes living the everyday in this home, though, and I urge you to remember that. I urge you to remember that I pick and choose every photo that I publish on this blog for the world to see. I don't always write about the nights that I sleep with her on my chest because her breathing is abnormal or the days that I cry because all I want to do is hold my baby on my hip without her low-toned body folding in half or her head drooping because she can't hold it up. I don't talk about the moments when I hear her wake up because her hand is tapping the side of the swing repetitively and I laugh because if I don't, I'll cry. I don't talk about the deep despair that my heart feels because although I'm pleading for a diagnosis for my child, it seems unfair to my own spirit to do so. It feels as if I'm desiring for something to be wrong with her. I am not. But as her mother I have heard it all:
'Mabel is fine,'
'she's going to be ok...just give it time,'
'she's just different; all kids develop differently.'
...and I can't honestly sit here and tell you with confidence that Mabel is fine or that she will be ok or that in time, this will all be washed away.

But I am her mom. I know her best...and these things I just don't know. That's the hardest part-by far.

I have, at times, been made to feel like that for some reason this is our fault. I don't think anyone intentionally means to say that or make us feel that way but comments have been made and things have been said. People love our family and they want the very best for Mabel but I want to make it clear that at no point will I be made to feel guilty for what is happening to our baby.

*Of course we hold Mabel all the time: She can't sit on her own due to severe hypotonia. I will not, after this post, justify the things we do with Mabel in order to educate anyone on her conditions. I just want to ask someone--what else would you like us to do with a baby that is 10 months old and cannot sit up? Do you think that by us holding her we have caused her body to be weak and muscles to be low-toned? If so, I beg you to please do some research. It's not only hurtful but you are misinformed.

I have struggled almost every. single. day. to fight off guilt from my mind. I know, however, that we have done absolutely everything right and good for Mabel.
*She does still get swaddled: She maintains a startle reflex that wakes her if we do not. She has arm and leg tremors that are either seizures, or the result of seizures that are constantly happening if she is not restricted. And, the swaddle calms her.

If you think that by us holding Mabel or swaddling her, we are hindering her growth or development, I suppose that is your opinion. I reiterate that I believe it's a very uneducated, unsupported, and misinformed opinion-but it's yours nevertheless.

Behind the scenes isn't as pretty or glamorous as I can make it appear.

It is sad, frustrating and often times devastating.

It is enough to shake me to my core some days. But I choose to focus on Mabel's success and progress. I choose to publish beautiful photos from great moments with her. I choose to embrace the people who stand by me and face this thing head-on with me. I choose to live practically and spiritually but not in denial. I choose to be present in this time and experience the emotions of this journey every day-whether I'm sad, angry, hurt, frustrated, confused, or joyful. I choose to be here and live it. Because it is mine. Mabel is mine. She is perfect. And although it's not always great and glamorous, it is my life. Please keep that in mind when you conjure up your judgments or comments. Please keep that in mind when you choose to be disheartening and discouraging.

This is our life & Mabel's life. It's all a great big, beautiful mess and we are celebrating that every day. Be part of the celebration or take your cake and leave.

For those of you who have seen the good, bad and ugly--I love you. You know who you are and I could NEVER do this without you. I'm thankful that God knew that.

1 comment:

Snapshotsofhappiness said...

I'd just like to say something about swaddling. I swaddled my daughter till she was almost one and she was developing just fine. I still tuck her into bed tightly, that's just how she likes it. You do what's best for your baby.