About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Thursday, January 31, 2013

Ridiculous

     I am trying to act normal... do the normal things I usually do. Clean, cook, do my homework, play with the kids, etc. But this one realization keeps creeping in. I could actually lose a child. Everyone says things like "Don't think that way" or "That's too morbid, think of something else", and I get that, but that doesn't mean it's something I won't think about right now, simply because it is a possibility.
     I have seen it on TV, I have heard of friends of friends or total strangers losing their children, I watched my grandmother bury her adult children, but I'd be lying if I said it wasn't different.
     It's like when you hear people say "You don't know true love until you become a parent." It's true. You love people, sure, but I never loved THAT WAY until I had babies, created life from my life, and knew that nothing could ever fade or replace it. And now, to even realize that I could lose a baby, that it's even a possibility to lose one of the lives that I created from scratch from my own life, just sounds like one of the most ridiculous things I have ever heard. Like I said, I know it happens... we've all seen it, heard about it, maybe even watched others go through it, but when there's a real chance it could happen to you, it just sounds impossible or made up. Ridiculous!
     I'm taking comfort in the fact that losing her is only one of the millions of possibilities, that there are so many other ways this could go. It's just, to think that losing a child is even a possibility is what seems so out of this world to any parent, I would imagine. 
     At least I can focus on the other possibilities, though. I have been researching how to breastfeed a baby that is mainly confined to an incubator and must stay in the NICU. It will be difficult, but it is not impossible. She is going to need every advantage she can get, especially those nutrients and development-boosting powers that breast milk has and formula lacks, so if learning how to breastfeed in a way that I have never done before is part of that, I am prepared to learn!
     So even though losing her is a possibility, one that is impossible to wrap my head around or not think about at all, I am preparing myself for all the other possibilities: feeding her, holding her, seeing her, talking to her, and most of all, loving her.

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