Sometimes it’s hard to talk about.

Right after my girl was born and subsequently diagnosed with Down syndrome, just about the only people we could speak to about it were our parents. Because I couldn’t talk about it without completely losing my shiz. My maternal hormones were on parade and the words just couldn’t leave my mouth without the flood gates also breaking open from my eyes.

So I did what I do.

I wrote it down.

I sent an email to about 40 of our closest friends, laying down the facts and a hopeful outlook for our future.  I asked that nobody call. I gave permission for them to spread the word as appropriate but asked that whomever they tell respect our privacy, too. The last thing I wanted was for the rest of the world to see the hot mess I had become.

What followed was simply amazing. Encouraging, loving emails poured in for weeks. I saved them all and re-read them many times back in the beginning.  It was the best support I could’ve asked for.

I was thankful to whomever discovered the internet for doing so in my lifetime.

* * *

It’s been just over four years now. I can have a normal, factual conversation about Down syndrome. Ask me about the symptoms, her surgeries, her therapies – I’m good. Touch the emotional stuff, though, and I’m still toast. This is one of the reasons I haven’t gone back and read any of those old messages since that first summer.  I have yet to find the courage (or the need) to go back and feel those feelings.

So when a teenage employee at a children’s museum came up to us last week while on vacation, the lump in my throat grew quickly.

She mentioned she’d seen us in the dinosaur room. My girl had flittered around the displays, looking for something resembling an animal she could name. (Why there were live turtles in the dinosaur room, I do not know – but I am grateful I was able to verify her accuracy on something.)

She asked if Abby had Down syndrome. She went on to tell us how proud she is of her 9-year old brother who shares the same gift. She gushed over her own gift of getting to be the sibling of a person with a disability.

I glanced at my Jake, tears threatening at the corners of my eyes.  (As he threw fake food all over the place.  Nice, kid.)

She told us that the doctors had told her mother not to expect much out of him, never to walk or talk.

She paused. “But you know what?”

I smiled, with an eye on my girl, and answered. “He does all of that and more, right?”

She smiled with a great big “YEP” and went on her way.

IMG_4891 (Rocking her creepy naked baby to sleep while on vacation.  SHH, MOM.)

16 thoughts on “Sometimes it’s hard to talk about.

  1. I like reading your posts because I can always relate having a 4 year old with Angelman Syndrome. I also have a 6 year old who I know loves his brother to the moon and back, yet I worry about him having to deal with all of this “special needs” bologna that we deal with on a daily basis. But- when I hear siblings if other kiddos have so much positivity and love, I feel better. I know that it’s making him a better person in some ways.

    1. Maybe I’ve been blessed my entire life to just know amazing people but I’ve never met an adult who really resented their sibling with disabilities. Although I am guessing there will be jealousy and maybe even some resentment as my boy grows up… that’s the same with any pair of siblings, right? We’ll work through it. xo

  2. I so needed this post today!! My daughter (who is 2 now) survived a stroke at birth and I just came back from a not so good therapy session where I spent the entire hour in tears. I read this post and smiled . . . thank you!!! My daughter is awesome and I have to think about all she can do rather than focus on what she can’t. THANK YOU!! Your daughter is absolutely beautiful!!

  3. As a mother I don’t know what it is like to have a child with DS but, like the teenage employee, I have the privilege of experiencing the purest love in the world from my little sister who was diagnosed with DS when she was born. My mother was told that my sister would be “disabled” and due to the additional medical problems associated with a DS child, would likely not make it past 10 years old. I am happy to say she has been driving me crazy for 30 years now and I wouldn’t trade it for anything! My mom likes to joke about how she is still waiting for this “disabled” child to show up because my sister is a lot of things but “disabled” isn’t one of them!! Enjoy your little girl as she will be the gift that keeps on giving!!!

  4. What a beautiful child you have…OMG I would love to give her some hugs! Nobody in this world is perfect. My brother-in-law was told 17 years ago he’ll never talk… so they taught him sign language at an early age. My brother-in-law was floored the day he yelled poppa! He hasn’t stop talking, walking, going school or proms, horse riding and whatever life throws at him. He is loved by so many people and given the chances he needs. He might be different, but he sure does live life to the fullest and loves unconditionally. If only everyone was like him! We were blessed yet again with another in our family who will be 2 soon and she is a little princess that’s going to give everyone a run for their money. Feel blessed and know that so many in this world are going to understand your daughter and welcome her as an individual no different than anyone else in this world. I understand they will find their limitations, but we all do. Roll with it and embrace a wonderful future.

    1. You have two people with DS in your family? That is awesome!! Thanks for sharing and for your encouragement 🙂

  5. Everything about this post is beautiful – your writing, your honesty, and especially that pic of your daughter…seriously?! Those pigtails…that smile…those little feet…so precious!

  6. This is beautiful, inspiring, and the raw and human that we’re also allowed to be. Much of this resonates for me as our little girl has Autism. She is “all that and more” every day; which doesn’t make it easy, but it does make it her “gift.” Love this, thanks.

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