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.

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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

 

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Mabel’s First Birthday

One year ago today was the saddest day of my life. The day also brought joy- the birth of my first child, long awaited and very wanted- but that joy was overshadowed in the hours following her birth. I went from utter amazement that I had a baby and despite the odds stacked against her, she cried. She might live, I thought. My excitement lasted minutes, until Chris updated me from the NICU. Her lungs were too small. She would die. As I raced to wrap my mind around this outcome, known as a possibility for months, her condition deteriorated in the hours that lay ahead. The days I thought I had with her melted into just a few hours as the vent and oxygen failed to sustain her tiny body. We took away that pain, removing her from life support, after just six and a half hours of life. The warm solid baby that lay on my chest became heavy and cool, her skin turning from a light pink to a mottled purple, her lips deepening to a dark red. I held her until I could hold her no more and gave her up for the final time.

One year ago today my daughter was born. Today is her birthday. But today is her death day.

In my early days of grief, I envisioned such a different day. I would plan a birthday party- a large, kiddie birthday party, with hats, and cake and balloons. I would invite everyone who I would have had she lived and ask them to bring books to donate to a needy school or library in the area. I would write Mabel’s name in each of the books, so she would live on when others read her name. It would be a celebration of her life. I was inspired reading about another mother’s celebration of her baby taken too soon.

Holding that birthday party is part of that ideal grieving woman I often aspire to be, but feel like I fall so short of.

But I can’t have that birthday part for Mabel. I’m just too sad.

I’m sad that it’s even a decision I have to make- how to celebrate my dead baby’s birthday and death day. I’m sad that my baby died. I’m sad she suffered. I’m sad that I have suffered. I’m sad that I’m not where I thought I’d be in my grief at one year. I’m sad that she’s not here. I’m just so so sad.

No big party today for Mabel. No party hats. No book collection.

Today I plan to hide under the covers. I know I have so many people in my life who are supportive and thoughtful (many of whom have already graciously reached out) and their support is welcome. Today, though, I plan to turn off my phone and hide from social media and just be sad. It’s too overwhelming to be gracious and sad at the same time on this day.

As the day approached and I recognized I wouldn’t be making my dream birthday party happen for her, I made an alternative plan. I couldn’t face an in person celebration, but I wanted her recognized so I invited friends and families to a virtual one. I sent these invites out earlier in the week:

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In memory of our daughter on her first birthday we invite you to join us in doing a Random Act of Kindness.  Enclosed you’ll find a small notecard that you can leave behind, if you choose, when doing your Act of Kindness.

We would love to know what you do in memory of Mabel.  Please feel free to email us or post on social media.

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Feel free to join us in Mabel’ virtual birthday party. Or you could simply learn more about her here:

Happy Birthday, baby. I love you. I miss you. I wish you were here.

My 35th Birthday

My birthday was last week. I turned 35.

I used to be all about birthdays.  As someone who chose a career that plays such an integral part in birth-days, and who even started a non profit centered around birthday celebrations, I can say I really did find people’s birthdays very meaningful. It was the one day of the year, where we exclusively celebrate someone’s life- we show our delight and appreciation that this person is in our life and has lived another year. Sure, we should be doing this throughout the year (kind of like Valentine’s Day- we should be celebrating our loved ones every day, not just on the commercial day), but there is some fun in make a big hoopla about someone on their birthday.

Last year I celebrated my birthday in the hospital. It was still a joyous time. I still had some hope- the reality of a dead baby hadn’t hit yet. After Mabel died, I pretty much stopped with the birthday hoopla. My birthday non profit went on hiatus (for other reasons as well). I stopped doing call- being such an intimate part of a baby’s birth-day. I stopped posting cute facebook messages on people’s birthdays. In fact, I barely recognized anyone’s birthday. And for those reading, who did not get the usual birthday love from me this year, I am sorry. I thought of you but could not write the words. The celebration has been sucked out of me.

So this year, my first birthday since Mabel died, I wasn’t particularly excited for my birthday. I wasn’t dreading it- it just simply seemed another day. Chris is away on business, which also took the kabash out of it. I filled the day with work and appointments and had a very nice dinner out with friends. But the reality is, my birthday came and went, seemingly uneventfully, and now I am one day closer to my daughter’s birthday (or death day?). Our birthdays being so close feels like my birthday will always be a reminder of what day is to come next. I’m not sure if I’ll ever feel like truly celebrating knowing what happened a little over week after my 34th birthday.

But it’s ok. Because it’s really just another day.

How have your birthdays been since your loss?