When we first received
Baker's Down syndrome diagnosis, I hadn't knowingly met a single person who had experienced the same thing. I hadn't met a person with Down syndrome or knew anyone who had someone with Down syndrome in their family. I don't remember seeing kids with Ds in school or in stores or on TV. Maybe I had blinders on or it just wasn't on my radar. We had friends and family supporting us but as far as I was concerned, we were alone in experiencing this first hand.
And as you can imagine, that's a pretty f'ing scary place to be. It felt like our world was caving in but after taking a day or two to process the initial news, I needed to do something. I needed to learn what this meant for Baker and our family. I needed to see what life would be like once Baker was born.
Social media is so strange but it can also be really wonderful at times, people can connect easily and hashtags are searchable so that's where I turned. I had been added to a local Facebook group the week before by a friend-of-a-friend after we learned of Baker's heart. The group was for heart moms, women who all had littles with some kind of congenital heart defect. I posted an introduction, explaining what type of defect Baker had and the fact that he'd most likely be born with Down syndrome.
Within an hour, I had received two messages from moms in that heart group who knew of
other moms who had kiddos with Down syndrome. Those babies had the same CHD as Baker and each one offered to get me in touch with them.
Within a day, I was messaging back and forth with Blair who lives in Iowa. Her son was born the previous year and had recently recovered from open heart surgery. Her story was
my story and all of a sudden, we weren't alone.
Not even close.
Blair introduced me to the
Down Syndrome Diagnosis Network (DSDN) whose mission is to connect and support families who have received a Down syndrome diagnosis. They have Facebook support groups for anything you need related to Down syndrome. There's a heart group and an infantile spasms group. There's an All Star Mom group filled with veteran mamas who are all raising kids with Down syndrome and have most likely seen it all. Most importantly, there are smaller birth groups divided out by year so I'm able to connect with over 300 other moms who have babies with Down syndrome that are all Baker's age.
These are all places I can go to ask questions, voice concerns, laugh and cry, because they get it. They understand what it's like to feel like your world is crashing down around you, and then getting the chance to come up for air and see the beauty in the diagnosis. They get the feeling of wanting to punch someone in the face when they tell you, yet again, that you're "blessed" and "lucky," They understand apologizing later because maybe - just maybe - they were right. They understand the stares and awkward questions and incorrect or outdated terminology and appreciate the chance to educate and advocate because these kids deserve it.
This past weekend, I traveled to Phoenix with 8 other moms from Kansas City to attend DSDN's annual Rockin' Mom Retreat. It was a chance to finally meet all of my online friends in real life and spend the weekend relaxing and taking care of ourselves. To be in a room with 400+ other women who share your story is a pretty powerful thing. Down syndrome is what we all have in common. It brought us all together and paved the way for friendships to form that will last a lifetime.
Unfortunately,
my weekend was cut short after Justin called me and told me he was taking Baker to the emergency room. I flew home a day early to be with my family but not before getting the chance to share mimosas with the girls, log some hours in the lazy river, drink fancy resort cocktails, take questionable uber rides to In-N-Out and buy all the tallboys at the convenience store because fancy resort cocktails are hella expensive.
I got the chance to eat a hot breakfast that I didn't have to make and drink a hot cup of coffee all in one sitting. I was able to shut my eyes at the pool and not worry about anyone drowning on my watch. I read, like, 4 magazines. It was amazing!
I also got the chance to thank other women for sharing their stories, for sharing their children. Because of them I was able to scroll Instagram and search for those hashtags and they showed me life with Baker would be okay. It's hard at times, sure, but we're okay.
We had a running joke at the retreat while we were sitting by the pool, drinking and chatting under the palm trees as one does when they're
retreating... *This* was Down syndrome. *This* is what you get. It may be scary at first, and you will have to process some really heavy feelings in the beginning but what you get after all of that is truly amazing. You get friendship and support, picked up when you feel sad and others to help you celebrate the happy. People who become your confidants. You get to be surrounded by hope and you get to share joy and that's pretty special.
Thank you, DSDN for putting on an amazing weekend. I hope to enjoy the entire thing next year... ;) This organization is changing lives and the way the world views Down syndrome and my family is honored to be a part of it all.
