Letters to Charlotte: Progress

Dear Charlotte Amalie,

Last night, your nurse told me how you were trying so hard to make the "la-la-la" sound. You would go through the motions, desperately willing your body to function as your mind wished it would.

Yesterday, this was not possible.

This morning, out of the corner of my eye, I watched you effortlessly roll from your back to your front, push yourself up and practically fly into the crawling position.

Last week, this was not possible.

Right now, you are precariously perched on your feet, in a stance that cannot be comfortable. You are holding yourself up, leaning over Caleb's yellow dump truck, attempting to laugh at the laws of physics, as you recklessly lunge towards the wheels. Spinning them around and around, you throw your head back and laugh. Laugh at the world, baby girl, laugh as much as you can.

Last month, this was not possible.

Tonight, I will place you in your crib. In your own home, I will lay you down for a night of sleep and slumber. I will attach your monitors and push medicine through your feeding tubes. I will swaddle you as you smile and kick your legs. You're the only baby I know who is so ecstatic to be swaddled. I will sing you a song, and then walk into the kitchen to wash the dishes. When I finish, I will walk back to you, and find you sleeping. I will gently place your BiPAP over your face, and I will stand frozen for a moment, mesmerized by your image; hypnotized by your presence.


Last year, this was not possible.


Baby girl, if you are certain of nothing in this life, be certain of this:

Anything, anything at all, is possible. 

And no one can ever count you out.

All my love,
Mama

Employment

Dear Charlotte,

Today is just one of those days. Maybe its because Mother's Day is around the corner, maybe it's because Daddy is out of town, or because we've had to experience the loss of a grandparent. Or maybe it's just because its raining today. Who knows. These days come and go without a mention of return, without a warning of arrival.

We're so proud of you little girl. We're so amazed by how well you are doing. We're so blessed to have the smiling, interactive baby that we have. Because we know how bad it could have been. We know too many who have faced headstones and caskets, too many who have never had their children look into their eyes. We'll never, ever understand how bad it could have been-- no one can; no one who has not actually laid their child to rest can ever understand. But we know of it. We've lived around it and in it and we've walked through it.

Despite our knowledge, on days like today, I feel marginalized. As though the whole of society continues about their days, supporting causes like "Breastfeeding in Public" and "Home Births for All" and I want to scream. I want to scream, not because I am angry at their causes. Not because I do not believe in their vision.

Rather, I want to scream because I just want your situation be noticed. I want someone to understand. I want the world to know that not everyone gets a "choice" in their birthing plan, nor do they care. Those people are more worried about the ventilator settings and the results of blood tests. They are more concerned about MRI results and ultrasound findings. Those people just want their baby to live, forget how they entered the world.

I want your journey to be recognized by those who have not had to take this path. I want to be understood by people who have not spent months upon months in the NICU. I want to feel as though others are concerned, others are devoted to your cause, not because they too have been touched by this plight, but because it is something that has been normalized, something that has been accepted, confronted and recognized. I want to not have to educate so many on the effects of prematurity. I want to be able to explain that my daughter was born 16 weeks early and have someone understand just a little about what that means. Just as a cancer patient does not have to explain how difficult chemo is, I want a basis of understanding.

I know that understanding only comes through education. I know that I have a job to do. I know that as a parent of a premature child, the only way prematurity will ever be understood is if I help to educate those I interact with on a daily basis. But on days like today, I just want to curl up in bed and cry. I didn't ask for this job, and I really don't want it.

And then I look at you, and my feelings of pity and frustration feel trite and ridiculous.

I wanted you. I want you.

And I have you.

If I have to take this job to get you, I'll do it a million times over.

Consider my position full time.

Your Faithful Employee-
Mama

Day 273

Charlotte Amalie-

Today celebrates nine months since your birth. 273 days of life.

The numbers tell us one story. In the past 273 days, you have spent 216 in the hospital. Those 216 days included heart surgery, chest tubes, abdominal surgery, eye surgeries, blood transfusions, sepsis, and more. The 57 days you've been home have been unbelievable. In those 57 days, you've had 18 appointments with a doctor and 14 therapy appointments. That leaves 25 days of just.being.home.

Your actions tell us another story. You've learned how to smile, how to bring your hands to your mouth, how to flatly refuse anything you don't want. {Let's be honest, you knew how to refuse things you didn't want from the very beginning.} You've learned how to blow raspberries and how to stick out you tongue (a very necessary skill for a little sister, I might add).

You're determined. You don't give up. You voice your opinion rather well for a little one without a voice. I'd say that you've developed a personality, but as any of the NICU nurses will testify, you've been this way since you were born. And despite your strong personality, you go with the flow. You're happy on the floor (on your playmat, we don't just throw you on the floor...), in the swing, or in your crib. You are learning to let us hold you. Previously, you thought that this was rather pointless.

We're so grateful for the past 273 days. We're grateful for the possibility of more. We're grateful for tonight, for tomorrow, for yesterday.

We're grateful you've taught us to appreciate each moment.

We're grateful for you.

Momma