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Wednesday, November 10, 2010

The Luck and/or Guilt

The night Charlotte hit her 24 week viability marker, a doctor from the NICU came to speak with me in the hospital.

She explained the risks. 30% of babies born at Charlotte's gestation survive. 70% do not.

The week after Charlotte was born we had a meeting with another doctor from the NICU. He explained the risks. 90% of babies born, who do survive, at Charlotte's gestation have a morbidity.

Those were the statistics, but not the reality.

By all means Charlotte has not only survived, she has thrived.

Sure, she has a g-tube, is on oxygen and has visual impairment (the level of which is unknown). Yeah, she's developmentally delayed.

But there's an equally long list of things that didn't happen. Things that SHOULD have happened. Things like death, brain bleeds, shunts, trachs, and NEC. Charlotte has a general sense of her surroundings. She can move her arms and her legs. She has made progress in every area.

We have every reason to believe that even if Charlotte develops Cerebral Palsy, she will have a mild form. We can, with caution, say that Charlotte both hears and sees well enough to lead an ordinary life. {Everything we say is with caution... there seem to be NICU gods who laugh at our successes :)}

We feel incredibly lucky. Scratch that. We feel blessed.

We also feel guilty.

We escaped things that we should not have escaped. Statistically, we should have buried our daughter. That's the reality of Charlotte. She should not have survived. But she did. And every time I hear someone's baby lost their NICU battle, I feel guilty that Charlotte did.

Not that I would trade away our success, well, for anything. But I feel guilty that we have been given so much. when others have lost so much. I wonder, why us? Why is that wonderful, loving, caring family going through so much? It's not even a comparison between babies who lived and babies who didn't. I feel intense guilt when I meet a preemie who is blind and deaf. It eats away at me when I see a child with a trach. I could go on, but I won't.

I know there is no rhyme or reason. Charlotte did not come early because of anything I did. She did not live because she's a fighter-- believe me, I've seen more "fighter" in babies who have passed away than in any child who has ever lived. Charlotte lives because she does. And that's what it comes down to. She has a purpose here and she has been given the skills she needs to complete it. Other children have different purposes. And they need different skills. We are given what we need.

And that's the reality of parenting a preemie. You are living in a land of limbo, somewhere between being incredibly angry at the hand you have been dealt, and feeling incredibly guilty for all that you have survived, all the while being so grateful you've even been given the chance to try.

And so, we remember that that is the moral of parenting in general. Whether we are parents of a preemie, a full term child, a child with disabilities or a child who has passed away, we simply try. Sometimes we are overwhelmed with guilt. Other times we feel incredibly blessed to have such a special individual as a part of our lives.

But we try. We don't always do it properly. But we try.


  1. The longer I live the more I understand that it isn't what happens to us in life..It's how we respond that makes all the difference. Therein lies our own personal mission and purpose, our own personal growth, and the opportunity to reach out to others and be a blessing to them. In that you and Peter along with so many others who have had to walk this path have been a blessing to us all.

  2. farrma, agreed.

    love you miss amanda.

  3. I agree with Farrma too.
    Every day I am grateful to be given that day to try.
    Thank you for sharing your personal experiences with Charlotte. You and she are amazing.

  4. Thanks for your honesty and for sharing you life with Charlotte.

    There will be a preemie chat on Twitter tomorrow, Nov. 16th at 3 PM EDT. If you'd like, you can join us to chat about the challenges you and your family have faced. You’ll find us at #pregnancychat.