Sunday, July 20, 2008

My memory is cruel.

He’s almost two. He nearly died and he’s almost two. Why, facing another birthday, a festive event, does it all flood back?

I tell myself all the words he indisputably “meant” to say. Not this:

The form of Down syndrome that he more than likely has is called Trisomy 21, and it accounts for about 95% of Ds cases. We have ordered a karyotype. The “error” occurred right at conception and probably, because of your age, Michelle, your egg…well, your egg…”

“You see… now (mind you, I waited all flipping day to “see” as they would not transfer me to the hospital NICU where Elliot waited without an ambulance and um…they were backed up) he has a small head, his ears are low set, he has a short nose, very poor tone, this crease, that crease and well, look at his eyes.”

“He may have hearing loss, vision issues, gastrointestinal abnormality, an increased frequency of respiratory and ear infections, colds, bronchitis, and pneumonia.”

“He will be mentally retarded, and his heart…well, we had better get cardiology over here ASAP.”

The neonatologist went on to say, “Did you undergo an amnio?”


“Well, then you would have known.”

Known what? I faded away from the room and all I saw when I closed my eyes was this dreadful man. Then, I looked at my wee little premature creature, all 4 pounds of him. I was tongue tied, but I managed to say, “His name is Elliot James.”

“Use his name, please.”

The “James” comes from my OB – my pro-life OB who hugged me many times that day.

Why is my memory so malicious? Why can’t I forget the really bad things about that day? Why are there so many physicians who advocate for abortion when Down syndrome is detected? Why, in God’s name, when I was obviously in a state of shock, could this damned neonatologist not use his name?

There was one nurse, one nurse in particular, who was different. She was our advocate. I equate this one particular nurse with all of the kindness in the world. She told me over and over again that it really would be okay. She said that they would not let him go until we were comfortable taking him home. She was not there when we were dismissed - only an associate of hers. She, by the way, is Elliot's Godmother.

I have finished my BSN application. I am going to go back to school. I hope to God that HE gives me one chance to be in the room when a diagnosis of Down syndrome is given to a mother, to a set of parents, to anyone. I hope HE lets me take care of a premature infant; I hope HE gives me the chance to tell the neonatologists that “No, this mother / father is not ready to take care of this sweet baby at home.” “The baby cannot be sent home yet.” “The baby is too fragile.”

I can hope. As brutal as my memory is, it certainly serves a purpose.


LP said...

Reading this post brought back lots of memories of those first few days for me, too. Elliot is just beautiful. My daughter Bridget will be two years old on Wednesday. Happy Birthday to Elliot and Bridget!

Lisa and

~Melissa~ said...

It's hard to let go of those difficult memories and tough times. But Elliot is beautiful and will bring many wonderful memories to help combat those not so good ones. I can't believe he's going to be 2!!

Christina said...

I remember everything about my pregnancy and birth experience with Kallie like it was yesterday. I pray you get to bless someone with your on hand experience with DS.

James said...

Thank you so much for sharing this. I'm a dad, so I'll never have your perspective, but I had a very similar experience five years ago with my boy, Aiden. I will never forget that day either.

Thanks also for working to find ways to help others. That's why God put us here.

Michelle said...

Michelle - thank you for sharing your emotions, as raw as they still might be. It certainly brings back memories for me as well. Congrats on your application for the BSN program. I can't wait to hear the first patient encounter you have - you will make a difference!


Shannon @ Gabi's World said...

Michelle, You will be a fantastic nurse, and you will get that opportunity! I am sure of it!

I have a perfect place for you to link up this post. Michelle @ In The Life of a Child does a monthly meme called "Finding Courage Through Sharing Blog Carnival." She is the same one who does Magic Marker Mondays on 5MFSN. Tomorrow is the the next one and the topic is wide open so this would be perfect! Her blog is at:

jenhiatt said...

thank you for sharing. you brought tears to my eyes and memories to my mind. Elliot James is a lucky boy to have such a great mama!