Monday, March 16, 2009


I have a little trisomy group online. I used to get dozens of emails a day from the group. There were medical questions and concerns, triumphs and disasters. When I was pregnant and Charlotte was newly diagnosed, the first words of encouragement I received were from the trisomy group members. "Congratulations!" they'd say, and "don't be surprised if your little one decides to hang around and enjoy her family despite what the doctors may say." Later I asked them about birth plans and photographs, and then oxygen and airway floppiness, and apnea and feeding tubes, and preschool and wheelchairs, and airplanes and Make A Wish, and finally, my last post to the list was called "Down Tonight." Charlotte had about a month more to spend with us when I wrote "Down Tonight." It said simply that I was discouraged, and tired of hearing Charlotte cough in the night, and tired of her alarms going off, and sad that her oxygen need had gone up, and that I felt, deep in my secret heart of hearts, that she was getting ready to leave us.
I received lots of responses, words of hope and encouragement, and little online hugs ((((erin))))
and promises for prayers and good thoughts. And I got a few notes, from others who had lost their children, that said they had felt the same in the weeks and months before. Before. And now it is after.
I am Down Tonight again.
I cleaned off the counter top corner of Charlotte's little needful things. Honey for her cough, children's tylenol and motrin, various homeopathic cold remedies, bought with hope and a bit of guilt, benadryl I wasn't supposed to give her, but did, once or twice, in tiny 1/16 doses, hoping it would clear her dear little sinuses. Little bottles of hope and faith, put up in the cupboard for when Ella may need them.
Since Charlotte went, I turned the settings on my trisomy list to the digest mode. Instead of dozens of individual emails, I get one, with various topics, and responses, which sometimes I read and sometimes I delete. I joined the list "tri-wings" for parents, like me, who have lost their child who happened to have a trisomy. Tri-wings is lonely. There are very few triumphs on tri-wings. There are very few funny stories, there are no medical concerns, no announcements of hospital stays, of surgeries, complaints about bad doctors, praise for good ones, advice about adaptive toys, talk of medicaid, feeding tips, no everyday happy sad stressed exhausted chat.
Everyone on the tri-wings list is down tonight. It's all we have left to say.

4 comments:

Amanda said...

You have every right to have "Down Tonights". Considering all of the Up Days you have had since all of this... well, since Charlotte was born, really... its okay to feel sad. I wish I knew something to say that would make you feel better. I wish I had a way to take away the pain that I know you are going through. You are my best friend and I love you very much. That's all I have. Sorry it's not more.

Lacey said...

Oh Erin I don't know what to say. Even though my Trisomy is a lot more common, I feel more connected to you, and Julie because Jax is so severly delayed. I can't say I know what your going through, only that I'm praying for you and thinking about you.

Erin said...

Thank you so much to Jack's mom and Jax's mom. I love you guys and your dear little boys.

Michelle said...

Hang in there Erin. I know it's easier said than done... but you are such a strong woman and you offer your readers so much to admire in you. I see it, and I know Charlotte does too :)