Wednesday, June 23, 2010

finding my identity

Sometimes I feel so alone in this journey with Sadie. I will hear and see all the neat things babies her age (and younger) that I know are doing and it makes me feel bad that Sadie doesn't do those things yet. I know, I know, don't compare my baby to other babies. But I can't help it. When I read about Cameron rolling over at 4 mos. and I see Nathan holding his head up so well on his tummy at 8 weeks, I can't help but think what it would be like if everything had gone according to plan when Sadie was born. And even though I know it's destructive to think like this, it's an uphill battle NOT to.

I recently found some groups of moms with babies like Sadie. There's a newborn brain cooling group, and an HIE group on facebook. I've been able to "talk" (and by talk, I mean email and IM) to other moms who have experienced similar things with their children. But no two cases are the same. And while I find similar stories, I don't find what I'm looking for: reassurance that everything is going to be okay.

Sadie has started teething, and it's sort of weird to me that even though her development is so delayed, physically, she's perfect. Her body's clock doesn't know that her hands are still in fists or that her sensory system is hyper-sensitive, it just knows it's time to start teething. So, she gets the drool, and the multiple poopy diapers daily, and the not sleeping well. But it doesn't seem fair, because she can't deal with it like a normal baby would, she doesn't have enough tools in her toolbox yet. So, while teething is fun and exciting for most parents, it's just more screaming for me (but I AM excited to see those teeth pop up...eventually)

I went on the babycenter website, where I visited MANY times daily when I was preggers, looking for I don't know with sleep? help with teething? some sort of reassurance that my baby is normal even though I know she's not? I don't know why I even ever go to these forums anymore, they just make me feel bad. Babies born the same month as Sadie are laughing and playing and sitting up and rolling. But not my baby. Like I said, uphill battle.

But we don't fit into the special needs groups either. That P.O.P.S.I.C.L.E. group? It's for babies with SEVERE eating issues. Those babies have g-tubes, and aren't gaining weight, and never breastfed. And those moms really have it much worse that me. Sure, my baby won't take a bottle, and she has trouble sleeping, but I don't have to push a button to release formula into a tube that is surgically placed into her stomach. It makes me nauseous just thinking that that could have been us. Sadie doesn't have down syndrome, or cerebral palsy, or even epilepsy (officially)...but she's not normal either. Where's the group for that?

So, here we hang, somewhere in the middle. We're not disabled enough to be called disabled, but we're not normal enough to be called normal. And I don't know, then, where to turn for support. I feel like my/Sadie's problems are too minimal to be wasting the time of special needs groups. They can't help me, offer me advice, give me support because they're issues are so much more severe. Yet, when I receive help/advice from people about teething or sleeping who've had perfectly healthy and normal babies, it's of no use to us really because Sadie isn't normal.

I guess we continue to hang in the balances, teetering between special and normal. I guess we continue to go to bed every night wondering if Sadie's hands and feet were more tense today because she's uncomfortable, or because her cerebral palsy tendencies are becoming more apparent. I guess we continue to wonder if she WILL have seizures if we wean her from the medicine. I guess we will continue to try to get her to sleep independently. I guess we will continue to have hope that THIS car ride is going to be different. I guess we will continue to measure her head with crossed fingers that this time the number will be higher. I guess we will continue to live life through the screaming and not sleeping. I guess we will continue to hope and pray that eventually we WILL fit in on one side or the other, just so that we can at least find an identity.

1 comment:

  1. oh christy. i'm so glad you're doing this blog. get it all out! it's so good to process this stuff. my heart aches for you and will be praying for that connection for you somewhere. there is unexplainable comfort in connecting with someone else that is walking the exact same path that you are. i will pray that your paths will cross. there must be someone out there. praying for peace for your heart when you need it too - you are still in the fighting stages of this as you figure it all out. it's exhausting, on top of the exhaustion that comes with a "normal" healthy baby, you have a whole bunch more piled up on that. be gracious with yourself. you are doing an amazing job. thanks for sharing your heart!