World Down Syndrome Day 2015

World Down Syndrome Day.

March 21- 3/21-  a day picked to represent trisomy 21 or three of the 21st chromosomes (most of us have only 2- the third is what is responsible for what we know as Down Syndrome).  It’s a day of celebration for the Down Syndrome community- a group I tentatively belong to.  For me it’s a day of celebration, a day of sadness and anger, a day of reflection.

Last year I wrote a letter to those who were expecting a child with Down Syndrome.  I’ve written a lot throughout the year about Down Syndrome- what I see in the news, how it crosses my path on a daily basis, my memories… I recently reblogged this post by Sadie at Invincible Spring, which I wanted to share again today, of all days.

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

After reading her words, I have totally changed my practice.  In the babyloss community we are admittedly very sensitive to words and phrases, even if they are well intentioned.  “God needed another angel” is well meant, hoping to give us comfort- but those words sting us, even those in religious communities.  Those in the Down Syndrome community, can experience the same hurt.  And it starts early- before a diagnosis is even made.  We obstetrical providers are the first to address the idea of having a baby with Down Syndrome.  Sadie’s words has made me rethink how my simple words as a midwife portray Down Syndrome in our society.  I no longer use the word “risk” when discussing  genetic testing.  I now talk about the possibility of having a baby with Down Syndrome.  One little word, that connotes so much.  Especially for me.

I was open to the possibility of having a child with Down Syndrome.  I opted for testing even though based on my family history and my age, I was “low risk.”  But as I have counseled patients in the past, low risk doesn’t mean no risk.  I wanted to know my chances of having a baby with Down Syndrome, even though I didn’t think it would change my management- I thought I would continue a pregnancy with that information.  I have also learned, we don’t really know what we would do until actually faced with a certain situation.  When I was told, “it’s Down Syndrome,” I felt relief. The initial abnormal screening had me worried about all the life limiting conditions it connoted, but Down Syndrome was livable in my mind.  My baby could live!  I certainly cried my tears later over the loss of the dream child I thought I was having, but I also eventually embraced the idea- going to my state’s annual Down Syndrome conference, talking with parents of children with Down Syndrome, researching therapies and pediatricians who specialize in children with Down Syndrome.  I had a registry full of special baby wearers and toys made for children with Down Syndrome.  I accepted.  My baby began to feel extra special- yes, a wanted baby, but a wanted baby with Down Syndrome.  An estimated 92% of pregnancies diagnosed with Down Syndrome are terminated.  I was proud to be part of the minority, and also sad that I was part of the minority.  In some ways, I feel future pregnancies may never have that same specialness.  Don’t get me wrong, I hope for nothing but as healthy a baby as possible, but having a baby with the typical number of chromosomes seems almost easy.  Almost.

International Down Syndrome Day is also a little painful for me.  I see photos of smiling children on the news and flooding my facebook and blog feeds, their features of Down Syndrome evident in their faces and their stories of how happy and loved they are written underneath.  I so badly wish I could be in that club- that club I at first never wished I belonged to- the parenting a child with Down Syndrome club.  It’s a lovely community, full of support for people having both an easy and a hard time.  Raising a child with Down Syndrome is a challenge- no one can argue that.  But what child doesn’t have his/her challenges?  Learning your baby has Down Syndrome simply makes your baby’s challenges known and upfront.

At times I can be a little angry- it was the extra chromosome that stole my baby from me.  Mabel’s kidney defects are rare, but they are more common in babies with Down Syndrome.  I sometimes get angry that I was in that minority that said “yes,” that I would raise a child with Down Syndrome, while the overwhelming majority chooses not to.  But I was given a child that wouldn’t live, while others terminated a pregnancy of child that might have lived.

I still believe in a woman’s right to choose. I just simply wish that more people would choose yes, when it comes to Down Syndrome.  It is not an easy road- sometimes it can end in heartache, like with me- but I don’t regret taking the risk of loving my child with Down Syndrome.  I would carry another child with Down Syndrome, despite the risks of loss.  There are no guarantees in life, in love, in family- all we can do is hope.

***

In remembrance of our daughter Mabel, my husband is fundraising for Best Buddies, an organization that helps people with intellectual and developmental disabilities- including those with Down Syndrome.  On May 31 he is biking 100 miles across Cape Cod to raise money in her name for Best Buddies.  If you’re looking for a way to celebrate World Down Syndrome Day, consider donating by clicking here.

Mabel

 

reblog: Risk versus Possibility

Check out this post: http://my-invincible-spring.blogspot.com/2015/02/microblog-mondays-risk-versus.html

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while weshy away from risk.

Oh my.  Here I am, counseling patients every day about whether they want genetic testing for things like Down Syndrome, having had and lost a very wanted child with Down Syndrome, and have never thought of this simple word choice.  Reading this blew my mind and will chance my terminology.

Many thanks to Sadie at Invincible Spring for bringing this to light.  Read the whole post- short, sweet and worth it.

 

“Healed”

Healing. It’s a word we use frequently when talking about grief and I don’t particularly like it. My therapist pointed it out when she used the word and I stiffened. My issue with the word is that it connotes an end. We use it in medicine to talk about how someone gets better, and in a way this is applicable. As we move through our grief, we function better in society, we come to terms with the unchangeable fact that our babies are dead and we begin to find enjoyment and fulfillment in the world around us. But… and it’s a big but…in my medical world we declared someone healed- their uterus is back down to normal size, their stitches have dissolved and their milk has dried up- they are healed. In grief, there is no end. There aren’t even any concrete steps. Going back to work, holding babies, getting to the one year mark- these are things we do, but it’s not clean cut. When I went back to work, I shook, I cried, I took Ativan just to get through the door. Now I move fluidly through my day, rarely crying for my own situation. But there was no discrete time point when I went from being barely able to function to now. It was gradual and I still wouldn’t say I am in a great place. I recently came across this post and loved how he used the word adjusting to loss. A more apt term.

As Mabel’s one-year mark approaches, I think people have certain expectations. One year, I should be healed. I worry that expectations at work will change, that people will think somehow getting through the anniversary of my daughter’s birth and death somehow means something huge. That somehow the difference between February 15 and 16 will be significant, when really it’s just another day in the process. I remember reading early in my grieving this post (I can’t seem to link it directly.  click on http://glowinthewoods.com/  –> at the kitchen table –> scroll down to the post entitled “Tick Tock”) and taking away the message that it can take up to two years to integrate babyloss into your life. (I like how they used the word integrate and not “healed”). Two years! I thought. How am I going to survive two years!?! I thought I wanted to be healed right away, but now I can see I really just simply wanted to stop feeling the pain so acutely. Those early days were rough, weren’t they?

I still stiffen at the word “heal.” I think when those within the babyloss community use it, there is subtext. We know we are never healed from our children’s deaths, but it signifies we are functioning in the new world, the one without our babies. When those outside of our community use it, I can’t help but feel a little resentment, believing they think there is a true endpoint in our grief.

Where are you in your loss timeline? What do you think- are you healed? How do you feel about that word?