SPACE FOR A HEADER PICTURE

SPACE FOR A HEADER PICTURE

my sweet rosie

Friday, March 15

 photo rosiemama.jpg
My baby has an incureable genetic disorder. And a congenital throat disorder.

But it's okay.

No, really. I mean, yeah, there are parts of this that suck. Like that phone call from her doctor where he said, "I don't have good news," that sucked. And the part where I didn't see my husband for a month because I stayed my family while we figured out her treatments? That wasn't so great. And watching my baby's ribs suck in and seeing her arch her back and throw back her head as she struggles to draw a breath and can't? That's the absolute worst.
But other than that, it's okay.

Mostly.

It's much better now that we know. When she wasn't gaining weight even though she ate all day and wasn't sleeping even though she was exhausted, that was worse. When nothing I had read or researched was jiving with my baby's behaviors and I felt like the world's most incompetent mother, that was worse. When she couldn't breathe and we took her to the ER and were told that nothing was wrong even though we 100% knew something was, that was way worse. But now we know.
Rosie has cystic fibrosis. Rosie has a genetic life-shortening disease. Rosie also has tracheomalacia. Rosie has a floppy throat that can't stay open for her to breathe. Rosie is being given more medications by her parents than most people pick up from the pharmacy in a lifetime. And she's not even three months old.

But you know what? We caught it early. We're managing it. And with any luck (even though luck has most definitely not been on our side so far because seriously, couldn't she have been one of the 2,999 people out of 3,000 that doesn't have cystic fibrosis instead of the one that does? And on top of that, did she really have to have a throat issue that compounds the complications of an already difficult condition?) her life will be normal, even though her daily routine must be different.

And boy, will it be different.
And I suspect that's the hardest part. Knowing just how different life will be. Different from what I expected, hoped, dreamed, wanted, prayed for. Rosalind's life won't be what I wish it could be. And my stomach falls out of me every time I think about it. My life won't be what I imagined it would either. And how selfish do I feel, thinking about the trials this diagnosis will bring me, when I know the hurt will be completely hers and not mine? Pretty darn selfish. But still, a small part of me, when I'm not looking at her and soaking in absolutely every second with her and every inch about her that is possible, I mourn for the life I wanted. I do. I'm trying to send my thoughts down an alternate route, one with detour signs and turn after distracting turn. I'm failing. But I'm trying.

And it's really okay. I think. At least for now, because the not knowing, the uncertainty, the question of how much longer I have to look at her face, her cheeks, her tummy, her fingers, her thighs, her hair, her furrowed brow, her dimple, her toes, her chin(s), her lips, her ears, her eyes... it makes my baby, who everyone said I would love more than I could fathom and I didn't understand how until the first time she looked at me, really saw me, and I really saw her, all the more precious to me. I love my sweet Rosie. I truly can't believe how much and how fitting the phrase "so much my heart could burst" really is. We're not part of the 2,999 out of 3,000 but we have her. And she has us. And even though my heart is breaking, I get to hold her and be her mom.

And that's how it's okay.

7 comments:

Megs said...

You are amazing, and wonderful and the perfect mom for your little angel. We love you all so much!

Cami Olsen said...

I tried but could not get through this without crying. It is so amazing how someone so small can consume your entire life and more importantly your heart. Beautifully written.

Lisa Tanner said...

I'm with Cami...every time you post this stuff I bawl. You are so strong, even in the moments you don't think you are, you have so much strength.

rick.and.kels said...

i'm with cami too. rick worked as a pulmonary tech doing breathing treatments a few years ago and he saw people with cystic fibrosis all the time, he said it's super rough. i can't even imagine what you are going through, you guys are so strong and rosie is lucky to have you! she is absolutely beautiful, love her little round cheeks!

Julianne Beecher said...

Beautiful post and beautiful picture. Blog update too? I'm a google-reader user so I haven't seen your actual blog in a while. So cool. Love it. You are an amazing mama, Sara Soda. I love you, and I am a rotten friend for not taking advantage of the entire MONTH you were in town. I keep you and Rosie in my prayers. She is precious.

Javan and Heather Bowles said...

This post made me cry. The love a mom has for her baby is indescribable, isn't it? You are an incredible mother! Sometimes I feel like life isn't fair, but, at the same time, I know you are blessed with an incredible little spirit, and you will receive blessings for every single sacrifice you make for her! You are incredible. Seriously. I admire you so much! Love you friend!

BJ said...

Sara, Amy told me about your baby, I was so surprised because I had talked to your mom after you had Rosie and she said things were so good. You are a strong girl and you will be able to do what you need to do. It's amazing how mom's know when their baby needs something even if doctors don't know. We don't always get what we want but I believe it makes us better.
She's a cute baby.

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