Sunday, October 30, 2011

I Wish I'd Known

Sadly, receiving the news that your child has Down syndrome often fills parents with dread.  Almost every parent of a child with DS that I have talked to since we received Wyatt's diagnosis has mentioned that time, that dark time when you don't know what to expect and you don't know what to do.  I wish it didn't have to be that way.

At the time, I was literally at war with myself.  I knew it wasn't a death sentence... I knew that it wasn't the worst case scenario.  I had more information than most, being an RN.  All that meant nothing.  All my knowledge and experience went right out the window.  Despite knowing the contrary, I felt that I had failed, that this was somehow my fault.  This was one more thing that I had f☠cked up.  Somehow I deserved this.  I was embarrassed; I felt ashamed.  I wished that I could reach into him and pull it out whatever it was that made him that way so that he wouldn't be that way any more.  My mental image of two perfect twins smiling in the stroller with the cute outfits that my family had given me was gone.  Shattered when the neonatologist shuffled over to us in the OR and carefully cleared his throat.

I've talked about that time briefly before... touched on it, roughed up the surface a bit.  I described how I would suck up the pain, the exhaustion and head to the hospital and do what I had to do.  The crying would come whether I wanted it to or not.  In the shower.  In the cafeteria.  Holding my son while he slept as the NG tube delivered my milk to his tiny tummy.  What I haven't described is how I watched his "upside down" AVSD altered rhythm on the ECG for hours, side by side with my daughter's normal one.  I imagined in three months time, turning him over to the surgeons and getting him back intubated, with a big wound on his chest.  When I was dressing him, I imagined him with a scar and it terrified me. I would trace my finger down his tiny sternum as I reattached his leads after his bath and I wouldn't know I was crying until the tears splashed his chest.  Sadly, what was really fear from lack of proper information, the post-partum blues, accepting his heart diagnosis and dealing with NICU anxiety, was projected onto Wyatt's extra chromosome.  It's unfair, but it happens all the time.

It's not like I didn't have support either.  Most of our family and friends have been wonderful.  My colleagues and the staff were wonderful, even if they didn't always know what to say.  However, as I've said before, I did not know or know of anyone with Down syndrome.  There was a lot of empathy, but little knowledge and no shared experience.  Despite all the well meaning people, I was in a dark, isolated, hopeless place, projecting all over my newborn son.

Once I had started gaining insight, once I had started learning a bit more and had made contact with others in my place (and began self-educating) that darkness began to ebb.  I joke at work that we shine lights into dark places. It was like that for me as little by little, candle by candle, my world began to brighten as I absorbed more and more about DS.  I got to know my little boy in that time too.  I got to know his little baby moods, his vocalizations, his smell.  His routines and his likes and dislikes.  The little things I could do to make things better for him, from extra burping to ensuring there was always something on his little blue feet.

I have since healed, I have moved on.  Time and knowledge have healed my wounds and refocused my energies in a more positive direction.  It hasn't always been easy, but we are here.  One of the reasons that I started this was that I never wanted anyone to feel like I had again.  Never.  If I could reach out to one more mother residing in that dark place, I would.  If I could help fast track someone from those early horrible days to where I am now, I most certainly would. 

A few days after the babies were born I was wandering around in one of the rooms the NICU has for parents.  On one of the shelves was a book of poetry written by parents of very sick and often terminally ill babies.  It was meant to provide comfort.  I found it ghoulish and after reading a few words, I shut it up and threw it back on the shelf with disgust.  A few weeks later I stumbled across this publication and hoped that one day (hopefully soon) I could feel like this too.  It is called "What Parents Wish They'd Known". As time went on, these words became more and more fathomable.  One day, not so long ago, I read it again and realized that I had arrived at a new place, where these words are reality and not some distant dream.

Now, when I read it, I wish I could go back in time and seek out that Mom in the NICU watching the monitors as the tears fell.  I wish I could go back and let myself know that it was going to be okay.  Although it felt then that my own heart had stopped, I wish I could be able to tell my then self that it would start again.  I would eventually exhale and everything was going to be fine.

I want to be able to reach out to new parents and let them know it will be okay.  If the information I have given in the course of this blog has not been a strong enough safety line, if my voice has not been loud enough to echo-locate, then allow me to share more voices.  Hopefully together we will be loud enough.
I wish I'd known the stands would erupt with cheers when she got a hit in baseball, and that her classmates would circle around her with love and protection if anyone was mean to her. I wish I'd known that "being slow" would mean savoring every step, every puddle, every blossom.
--Michelle, mom to Ciarra (9 years) 
I wish I’d known that it was ok to grieve and scream, cry, vent and be angry. I wish that a facility or network had been in place to reach out to me, instead of the other way around. I wish that every parent coming home today could see my girl and how she smiles and loves.
--Amy, mom to Larkin (2 ½ years)
I wish I’d known that this would be such a marvelous journey, and that everything would turn out . . . JUST FINE.
--Jackie, mom to Emily (28 years)
I wish that I had known that my broken heart would one day heal, and the love that I felt for my son was the cure.
--Kristy, Mommy to Zachary John (3 years)
I wish I’d known I would look Avery and NOT see Down syndrome. I see her as this amazing, smart little cookie—strong-willed, self reliant, and cute as a button.  She walks around like a little queen in a parade, waving, hugging, and talking to everyone.
--Kathleen, mother to Avery (3 years)
I wish I’d known I was strong. My husband and I always thought we were the people who couldn't handle raising a child with Down syndrome. Actually,there’s really nothing to “handle.”
--Stephanie, mom to Megan (4 years)
I wish I’d known the pure joy, happiness, pride, love, and dedication that my baby would show us all. I wish someone would have told me that this baby was going to change my outlook on life, make me a better mother to his siblings, a better wife to his daddy and a better person to this world.
--Carmen, mom to Jaemen (3 years)
I wish I'd known that my son would develop a personality like any other child.  I spent so much time wishing his babyhood away wanting to know what he was going to be like. I wish I had relaxed and enjoyed the sweet baby I had.
--Ann, mom to John (5 years) 1


I wish I'd known that we would be okay, that we would overcome all the obstacles together as a family.  I wish I had known that there were thousands of mothers like me out there and that we all have felt this way at one time or another. I wish that I would have known that I would see him as "having" Down syndrome, not "being" Down syndrome and then not really caring about it at all.  I wish I had known then what an adorable, funny little guy he would be.  I wish I had known that his smile would wipe away any 12 hour work day and that his laughter would be like music.  I wish I had known that despite all the testing that his heart would stabilize, he would not sicken like they predicted and that his surgery could be postponed until he was a toddler.  I wish that I had known that he would be the sweetest baby on earth.  I wish I had known all of this then, so I could have enjoyed that time together.  I wish... I wish that I had known that he and his twin sister were exactly what we needed. 
--Jen, Mom to Wyatt (8 mos).

 1 Excerpts from "What Parents Wish They'd Known",  Copyright © 2008 The Segullah Group, Inc)


  1. When our daughter was born it was the worst day of my life. Now two years later I look back and I am embarrassed by how I acted after receiving the news of her Down Syndrome. She is the best thing that has ever happened to us and I wouldn't change one thing about her.

    1. I'm glad to hear it. Thanks for the comment. :)

  2. One day my daughter, two years older than her brother, told me that a friend at school asked her if she ever wished that her brother could change overnight to be "normal".....I asked what she said, because I had fervently wished the same when he was born.
    She said, "I told her that sometimes I do wish Steve could be like other kids' brothers, but, if it happened, then I'd miss him just the way he is." Pretty profound for an 8 year old, huh?

    1. That's pretty good, for sure and a reflection of great parenting. Thanks for sharing!

  3. What a great post. Happy to have found you on the hop!


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