trisomy 18 – JM Randolph, accidentalstepmom

A while back, I wrote a post called Grace about my nephew Mark, born with anencephaly and my niece Colby, born with Trisomy-18. When babies like Mark and Colby become a part of your life, you grieve; in your grieving, you look for ways to honor their brief lives.

My sister-in-law Melissa just told me about a great thing that has begun at the hospital where Colby was born: Aidan’s Book Corner.

Aidan’s mom is Maggie. Aidan and Colby were born the same week at Community North Hospital in Indianapolis. He passed away at 8 days from a massive brain bleed.

Maggie and Melissa began going to grief support meetings at the hospital in March 2010 and became very close.

They went through grief training and are both now volunteers at the hospital in the Open Arms bereavement department. Aidan’s Book Corner is something Maggie started to honor her son because they read to him in the hospital everyday. New books are collected, and there is a cart that someone takes around the Neonatal Intensive Care Unit for parents to choose a special book to keep for their baby. Barnes and Noble is now also involved and people are able to donate books directly at the a few of the local stores.

Maggie and Melissa and everyone involved in Aidan’s Book Corner are working to create a National Aidan’s Book Corner Day and have chosen February 1 for the date.

I’m gonna go out on a limb and say International. Canada and Australia, I’m looking at you!

Here’s where you come in:

Donate a brand new children’s book to your local Neonatal Intensive Care Unit. Please Tweet it, pass it on, email it, or facebook it. We want this to be an amazing day across the country, where parents in the NICU will feel a little support from the heart of someone who cares.

Every single act of kindness has monumental impact when your baby is in the Neonatal Intensive Care Unit. Don’t underestimate the power of a small, good thing; this is a great way to honor the lives of Aidan, Colby, Mark, and the countless other babies who shared with us a brief and beautiful grace.

Eight years ago today my nephew Mark was born.

I can’t think about Mark now without also thinking about my niece Colby, who was born in January of 2010. Both of them were born with different, fatal birth defects.

Mark had Anencephaly: A congenital absence of the brain and cranial vault, with the cerebral hemispheres completely missing or greatly reduced in size.

Colby had Trisomy-18: A genetic disorder in which a person has a third copy of genetic material from chromosome 18, instead of the usual two copies.

Years before Mark was born, I became aware that the way babies are allotted here on earth can at times seem remarkably unfair. I’ve known people desperate to conceive, who can’t; much-wanted babies who stayed only a short time; people completely unable to care for a child who do conceive despite precautions. It seemed to me that whoever was in charge of assigning the babies was either heartless or incompetent. I called bullshit on the phrase, “Everything happens for a reason.”

Mark and Colby taught me that there may be a greater hand at work.

Unless you have, or someone close to you has, experienced problems in pregnancy, you’re not thinking much about the possibility of problems, which is as it should be. You’re certainly not expecting to go in for an ultrasound to learn that your baby has a fatal birth defect.

Discovering there’s a problem is only the first step in what lies before you. Because then? You have to make a decision. Carry to term, or terminate? You have to weigh your decision against the cost to your soul.

Then you have to follow through on your decision. All the way.

What I know is nobody can make a decision about your baby for you. I also know that if you question the decision you made about your baby, it means you’re human.

In both of these cases, my sister and sister-in-law carried to term. They dealt with strangers coming up to them, patting their bellies, and making small talk about the baby. All the while, they didn’t know if their babies would be born alive, and if so, how much time they would get together. They dealt with the endless appointments and astronomical medical expenses. They dealt with their own fear while soothing that of their other children. They still deal with their own grief.

As far as that greater hand at work goes.

Mark and Colby pushed aside all of my preconceived ideas about The Way Things Should Be With Babies. What’s a lifetime? What’s a success? What is beautiful?

If you hold tightly to your idea of how you think things ought to be, you can miss out on the greatest things happening right in front of you:

Mark and Colby were both born alive. Many babies with these defects aren’t.
They both were born with hair! And itty bitty feet.
They got to be held and loved.
They brought the family together in unexpected ways.
Their brief lives were welcomed and celebrated.

We’re all left with many questions unanswered. Lots of Why’s. But if all our questions were answered in life, what would be the point of seeking? What would be the point of anything? Rarely is there an immediate answer to any Why. Why gets answered later, in its own time.

I’ve heard that grace is when god does for you what you can’t do for yourself. This, to me, is that greater hand at work. I still don’t use the phrase, “Everything happens for a reason.”. Yet I am at peace knowing that there very well may be reasons that simply haven’t been revealed yet, and I’m not actually entitled to all the answers.

You never “get over” something like this, whether you are a parent, grandparent, friend, or other relative. You are forever changed.

Beth and Dave, Jeff and Melissa, thank you. Thank you for your grace.

This post is a call to action to all of you: make today count, whatever that means for you. Always make today count.