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Wednesday, May 4, 2011


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-


  1. Amanda, I know you didn't want to have to be the one to educate the rest of us about prematurity, but you're doing an AMAZING job. And I thank you. Because of what I've learned from your words and experiences, I've recently been able to be more aware and considerate and understanding of (and hopefully helpful to) other friends who are going through their own struggles involving premature babies.

  2. Apparently one of the regulars on Grey's Anatomy had a baby born at 1 pound 1 oz. I don't know how they are going to handle it but maybe it will help with awareness.

  3. I've never had to be in your situation, thank God, and you've definitely educated me. You're doing a great job. I think there's definitely a need for education. My husband's cousin in Serbia gave birth about 2 months early, in March, and the psychological stress she placed on herself has been awful. She blames herself for the early birth and she's consumed with worry. She has a supportive family, but it would be better if there were more public resources and knowledge available to her. Then maybe she wouldn't feel so alone. (The baby is fine, by the way!) Anyway, keep on spreading your knowledge and experience. And keep posting those cute photos of CA!

  4. I tried to post last night and it got deleted so let me try again...
    Amanda, Thank you for another beautiful post. I often share your posts with friends and family as I try to help them understand why it is so challenging sometimes to be a mom of a micropreemie. Please keep sharing, it is invaluable!

    Ellen, That episode of Grey's Anatomy did more harm than good for Prematurity awareness, especially micropreemies. The baby was a 23 weeker, she did not receive the steroid shots. According to that (very morbid) preemie calculator, she had a 14% chance of survival. I really enjoy Grey's and was afraid to watch it BUT, the baby was out of the NICU in 12 weeks and her whole NICU stay took place in 1 45 minute episode that had about 4 other subplots. There was one spot on meltdown in the first 5 minutes and the rest of it was skirted over and around. She had a PDA ligation and a Grade I IVH but that was all. She was released at 35 weeks (gestational age) with NOTHING, no oxygen, no monitors (even her carseat challenge was done with the doctors just watching her). Grey's Anatomy successfully made a 23 weeker look like just a teeny tiny termie who merely needed some time to grow. It was very frustrating to watch.

  5. Amanda,
    I understand and have been there fighting in that damn NICU too. Now I am in the throws of school, therapies, and IEPs. LOL! My Sam starts typical kindergarten along with Special Ed. kindergarten as well. I so hope he is ready. I'm scared but hopeful :). Our kids are fighters and survivors and so are we!!! Big hugs!

  6. My darling Amanda! I just love you!! Because of people like you who choose to share your personal struggles and experiences with others, people are coming to know and understand. I know that by reading Lori's blog and now yours, I have come to feel and understand in a way I couldn't have otherwise felt or understood. When I hear of a family close to loosing a child, or having preterm birth, my heart goes out to them. I haven't personally experienced either, and yet I feel a connection to their sorrows. Learning to weep, love, and comfort... to feel as best one can feel who hasn't experienced the same pain... that makes all the difference. Thank-you for sharing! I'm so glad I'm your friend. Although you can't see it, I'm sending a hug in your general direction! Love you, friend.