Wednesday, October 24, 2012

An Overdue Thank You - 31 for 21

I've been reading a lot of blog posts about Down syndrome this month.  That's not surprising, since so many people are participating in the 31 for 21 blogging challenge or are posting their own tributes to Ds Awareness month. 

Many of the birth stories I've come across have talked about nurses and doctors that repeatedly express sympathy about their child's diagnosis; some of them unable to stop crying in the parents' presence.

But we didn't get that type of reaction.  I don't know if part of it is because we were the "home birthing" family who brought their baby into the hospital on Day 2, and maybe there was a stigma about that.  Or maybe because they thought that we knew all along.  Or heck, maybe because we seemed so "together" that we didn't need sympathy.

But no, nobody came and told us they were sorry.  I'm sure I'd have been pretty upset if they had, but  part of me felt like nobody was acting like this was as big of a deal as I thought it was.  We did have a chaplain visit, asking us if we wanted to talk.

But most of our nurses and doctors were professional.  Some were kind. One was rather mean.  Others were amazing.

One of our nurses (in hindsight I don't remember if she was actually assigned to Cora or not) came to us in the NICU and told us that her daughter had Ds.  She told us stories about her toddler, and about her medical history.  She told us that she had adopted her daughter after meeting her as a patient in the hospital and that she had come to United States from abroad for medical care.

In the first few days after Cora's diagnosis I would sit by her bed all day, taking only a few hours at night to go sleep in the parent room in between pumping and trying to feed her.  I held it together most of the time by her bed, but every time I walked into the parent room with Nick I would break down and sob.  I would tearfully read passages aloud from the books I was given and then fervently search for groups and real information online.  I discovered the Northwest Down Syndrome Association and ordered a New Parent Packet, but it couldn't get to me soon enough.  I needed someone to talk to, to tell me that things could be fine.  To show me that life was still life.

And our nurse friend did that.  Even though her introduction to parenting her daughter was different, she was living a version of the path we were now on.  She had chosen this life, in fact.

She provided me a kind of lifeline.  She was the first Ds parent I met after Cora was born.  I don't even remember all of what we talked about, even.

But talking with her was the first time I felt like someone had an inkling of what our life could be like.  There was no pity.  There was sensitivity, and for that I am thankful.

I have seen her at a handful of other events in our community since then.  We always talk for a few minutes and share updates on our daughters.  But I don't think I've ever really told her how much I appreciated her in the hospital.  I've never told her how much it meant to me.

Looks like I have a thank you to deliver.

My sweet NICU girl under the bili lights.  Oh the sweet cheekies!


  1. I'm sure she knows how much that interaction meant. So wonderful that you had that connection in the hospital! It makes me so sad for all the people who are left alone, floating along with news they aren't ready to handle, with no support available.

  2. That's awesome that you had that support immediately. It's always great to see someone else who has gone down the road before you. I didn't find those people immediately, but I have them now and it is so wonderful to have them!

  3. A beautiful "thank you" for that nurse. My 3 neighbors were/are such a big support. They all came to the hospital, chatted, and held Ellie. They are in the 60s and 70s, a generation when children with Ds were institutionalized. They spoiled my little girl then and spoil my little girl now. They made me realize that even with my and Andrew's parents so far away, we were not alone.

  4. I think that is so awesome that you had some one to talk to right away who also had a child with Ds...And that you had good kind Doctors and Nurses...Because in the beginning that makes a world of differenc!

  5. I was the same, a beautiful home birth then thrust in to hospital the next day, then surgery when my girl was 8 days old. Ironic, isn't it!!
    I had a mixture of amazing kindness and sensitivity and a few humdingers of total insensitivity ! Both still rattle about in my head.


Thank you for sharing your thoughts with me!