Tuesday, June 28, 2011

Preemie Mama Guilt

I just got done reading a beautiful tribute and watching a video of a micro preemie son who recently passed. It was so touching and beautiful. I shed tears each time I read something like this. It hits so close to home.

But then, I also feel guilt.

I know it's not healthy, but it's true. I feel some amount of guilt for Jack surviving, when the odds were so stacked against him. Why us? Why not them? I do not have these answers. Why some make it and some gain their wings, well, this question will probably haunt me til the day I die. I oftentimes feel odd about posting so many positive things regarding Jack, because I know, to a certain extent, some will read my blog who've had their little ones pass in the NICU. And my heart just breaks for them.

And I don't want to diminish the micro preemie struggle. Just because Jack looks healthy, it doesn't really give you the whole picture. This is not quite the normal indicator of how someone in his same shoes might do. But I also want to give hope, of what COULD be.  And then the guilt comes again. Why does Jack have some mobility? Why is he developing cognitively? Should I celebrate this on my blog? Is it just flaunting it in the face of those whose struggle is harder than mine?

These questions could certainly drive me crazy. And on some days, they do. I struggle with what to put out there, especially after reading about the heart-wrenching decision of ending support.

But I also know how far we've come. And it would be unnatural not to celebrate each and every gift we've been given, because we can feel it to our core that it is a gift. We use the word miracle. I don't know why Jack was chosen to be a miracle child. Some pray and pray and pray some more, and still, their precious baby does not make it. It's times like these where I wish my human blinders could be torn off... so I could see life how God sees it.
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Julie said...

Beautiful post, Jessi. Jack is indeed a miracle. Delving too far into the why questions can only make you crazy...but the desire to be a blessing and not cause hurt to others already aching is admirable and I do not think anyone would find you to be an insensitive person!

watermama said...

I'm a mom of a baby born at 24 weeks who had a brain bleed (along with all the "normal" micropreemie things) and ended up with hydrocephalus. He is almost 6 and, despite all medical odds against him, will be in a typical public kindergarten. When he plays with his friends, most have no idea the struggles he's been through. I often struggle with how "normal" our lucky guy seems. When I meet new moms of micropreemies, I struggle with how much to say about how many medical appointments we still have but also about how totally awesome our son's life is. Do I talk about how hard it is? Do I talk about how good it can be? Do I talk about the minimum-6-trips-to-the-childrens'-hospital-each-year? Do I talk about him climbing trees and reading? Do I talk about his multiple brain surgeries? Do I talk about watching him run across the playground with his friends? Do I talk about how is attention span is...wait... what attention span? Do I talk about how he has learned to wrap his arms around me and give me a real, true hug and say he loves me? The truth is, you shouldn't feel guilty. Every mom has their struggles and every baby and every micropreemie has thier own struggles. I enjoy reading your blog because it's nice to know other little guys do well too. I think it's good to give hope - it gives the moms of little babies currently strugggling a reason to hope that they live. I have a friend who's child is much more disabled than mine, but she feels like her daughter isn't anywhere near as disabled as other kids she knows. She feels guilty that her daughter is okay. It was a real wakeup for me. Moms see the bright side, how good things are. We all feel lucky our kids are alive and not-as-disabled-as-feared. Moms of typical babies need a window to our world. Mom's still in the NICU need a window the world that gives them hope. I hope you keep telling your story - all the tough parts and all the easy parts. It's the whole that makes it real.

Shannon said...

Keep telling your story and sharing Jack with us! Every child is different no matter what the circumstance. Jack IS a miracle and I consider Marissa a miracle, too, even though she is not mobile and not cognitively developed even close to her adjusted age. There is absolutely no reason whatsoever that Marissa should be an oral feeder, but she is (and it's one of her best skills) - we celebrate that! I think all of us micro-preemie mamas understand to an extent where each other are coming from - please don't ever feel guilty!

Michelle said...

I have often wondered the same thing. At first, I asked myself, "why me? why my babies?" wondering why my twins were born 16 weeks early. Now I ask the same question but it's "why me? why my babies?" wondering why they both survived and are doing well on so many levels. I've watched a friend of mine spend a year in the hospital with her son only to lose him just after his first birthday. I can definitely relate to how you feel.

mama Lisa said...

Well written Jessi, I especially loved the ending. Keep blogging just the way you are. And keep posting those awesome photos too!

Chelsea - Travie's Mama said...

What I love most about reading your blog is that I can relate SO much! Survivors guilt is definitely something that I struggle with emotionally as well. I met another mom in the NICU who has grown to be one of my best friends. Her son was a 26 weeker and is 2.5 months older than Travis. Our boys were so muck alike in the NICU and everyone knew them both by name. Her son struggled even more than Travis and they ended up coming home on the same day. As all of us micropreemie mama's know, when our babies come home, they are essentially newborns as far as development goes. Slowly Travis started progressing, and Tucker did not. Travis rolled over, and Tucker did not. Now Travis is 3 years old, running, playing, talking, buildng towers with his blocks, naming animals, etc. Tucker has yet to roll over, he is in a wheelchair, still on oxygen, 100% tube fed, and has multiple seizures daily. He has never said his first word and it breaks my heart! I don't understand why Travis has done so well while Tucker has not. Sometimes people will say comments to me like, "Travis is doing so amazing because you are such a wonderful mom" and to be totally honest, these comments hurt, because Iknow my friend is an AMAZING mom, why is her son not doing as well? So yeah, I get it Jessi. But we have to just be thankful for what we have and appreciate EVERY moment of it!