Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Sunday, December 28, 2008

Why Are We Different Than Other Parents?

Because we woke up every day for months thinking "is this the day my child dies?"

Having thought about this thing that makes us different than parents of healthy children, for way too many nights, I have concluded that it is the constant fear of impending death that caused something in us to change. Normal worry about a child's illness or injury doesn't seem to do this to you. A brief hospital stay might create an acute case of angst in a parent, but it is not the same as a chronic angst that a prolonged and uncertain NICU course can cause. Sure these parents are panicked and upset over the immediate problem, but they don't have this bone weary look we all seem to have.

I, and the other parents on this cruise ship called prematurity, have heard every platitude on the books. You know them and I know them. Heck, I've even said them to people in my pre-Eliza days: "you're not given more than you can handle," "things happen for a reason," "time heals everything," to name a few. To me, these things just caused me to roll my eyes and offered no comfort for the hand that Eliza had been dealt, because maybe she had been given more than she could bear and I could see no justifiable "reason" for any of this happening to her.

There is a chip we seem to wear but one we really wish we had never carried. I think it makes us jaded to the point where we almost lose compassion for other people and their children's seemingly routine ailments and quirks: Your kid had an ear infection for a few days? Big deal, my kid spent a month trying not to die from sepsis. Your kid doesn't like pasta. Big deal, my kid lives on some vile liquid called complete medical nutrition. I can't deny thinking these things but I don't very much like myself when I do have these thoughts. At what point though do we stop focusing on the fact that we are raising micorpreemies and simply focus on the fact that we are raising "children." Not that we should diminish our children's struggles or give up on trying to find answers to the long term effects of their extreme prematurity, but at what point can we put that aside and just enjoy our children, just like those other parents do? I suppose that point is different for every parent, but I think I am, thankfully, reaching that point.

I want Eliza to define her life by the things she can do instead of the things she cannot do. I want her to remember that she enjoyed a vacation because she was in a beautiful new place and not whether she was able to eat the local food on that vacation. I want Eliza to remember her life for the words she could say instead of the things she could not say. I want Eliza to remember her experiences by the sensations she enjoyed instead of by the things she had to avoid.

I think the best way for me to help Eliza enjoy her life is for me to accept that I have been deeply changed by this experience and that Eliza is different than her typical peers. Once I can do that, I can let myself enjoy the things Eliza can do and will do and not to fixate on the things Eliza may not be able to do.

That almost sounds like a New Year's resolution, now doesn't it?

And no post would be complete without a few snapshots of Miss Eliza:


MamáChanga said...

You manage to put into words what I'm sure many of us cannot express so gracefully. I am beyond thankful for my blessings, but have learned to understand that there are very few others that actually get it.

Happy New Years! That Eliza sure is a cutie pie (enjoy your "moments").

Hugs & Blessings!

Tiffany said...

I completely agree. I recently got very frustrated with people apologizing to me for Chloe's sensory issues. As soon as I mention that they are looking at Autism for one of the possible issues, people say they are sorry? Sorry for what? I love my daughter as she is, and I feel that she is a miracle. There were to many close calls to not appreciate what I have with my daughter now. All I can do is thank God for the time I have had and will continue to have with her, and trust that feeling I have inside of myself.

Sarah said...

I've had those 'thoughts.' I wish I didn't have them either. Every time someone tells me about their 36-week preemie I struggle not to roll my eyes. It's getting better as time goes one.

I, too, found no comfort in those glib comments. One friend went so far as to say that if Emery died it was because God was keeping him from something worse in the future.

As always, you say these things far better than I. Hope today was okay :)

Robin Elizabeth said...

I'm not quite there yet but I'm trying. It's not an easy place to get too but I am confident I will!
Eliza is awfully cute!

Natalie and Abigail said...

That's just beautiful Anne. Amen.

Jodi said...

I've had those same thoughts and it makes me feel like an awful person. I was in Babies R Us the other day watching all of the happy, joyous parents to be. It should be a joyous time. No one should have to go through what we went through. It just doesn't seem fair. It does change you. . .not always for the better. Thinking of you!

Anonymous said...

You have a wonderful way with words! I wish you could be a spokesperson for parents of premature babies! Why don't we ever hear stuff like what you have to say on shows like Oprah?! You say what we have all felt!!

Emily said...

I smile as I read this because these are MY thoughts almost on a daily basis. I am a mother of 7 month old twin boys who were born in April at 27 weeks. I got/get so sick of the "everything happens for a reason" and the "you're strong", and the fact that NO ONE understands except for other preemie parents. However, I keep it all to myself and wonder when I will ever feel differently. Hopefully someday I will also be raising "children" rather than "preemies".

Preemie Miracle said...

I love this post. I have read it a few times and never commented but I really appreciate all your words in Group and in all you do. Preemie power for sure

MoDLin said...

Eliza is such a beautiful girl - you are truly blessed.

Thank you sharing the challenges and fears of preemie parents. Prematurity is such a huge issue that November is Prematurity Awareness Month. Thank you for helping the March of Dimes spread the word.