I hesitate to even begin to write this post. I know I will leave people out and I'm sorry for that. My hope is that this would become an eventual series... The People Who Make Life Better When Raising a Kid with Down Syndrome.
In special education classes, at conferences, in meetings regarding youth ministry for kids with disabilities, I've completed the following activity a LOT.
Make a circle. Write your name in it. Around your name, write your close friends/family. These are the people you see a lot. Make another circle, write the names of casual friends. Make another circle, write the names of people with whom you have shared activities. (Classmates, etc.) Make another circle, write the people paid to hang out with you. (Teachers, caregivers, the waiter at your favorite restaurant.) Repeat the activity for a friend with a disability and notice that circle #1 and #4 tend to have the most names for people who have disabilities.
At age 4, Ellie has a lot of professionals who have been part of her life. Most have been outstanding. Her list of people paid to hang out with her in four years probably is longer than most kids twice her age. NICU nurses, early intervention therapists, teachers, coaches, school based team, related service providers, doctors, caseworkers.
The people who have made a difference for Ellie are the people who have believed in her from day one, who have laughed with us, and who believe that Ellie should have the same opportunities as her same age peers.
Nadia, Linda, Megan, Lisa, Jessica, Sonja and so many more.... Each of you walked into our lives as someone doing a job and gave us hope for our kid. Many of you became close personal friends. You never looked at Ellie as less capable than her peers but understood her needs and gave her extra time to learn, whether it was how to eat when she was just a couple weeks old or how to write her name (which I KNOW she will get someday!)
The Friends Slightly Ahead on the Journey
In August 2010, we joined a club we only vaguely knew about. When we got Ellie's Down syndrome diagnosis, we became parents of a kid with a disability, and we had no idea what we were doing. (Who has this whole parenting thing figured out anyway?) I googled. I called our local Down syndrome group. I found an online group of parents also expecting babies with Down syndrome led by parents who have big kids with Down syndrome.
I was terrified. I called our local parent coordinator and left her a voicemail, relieved she didn't answer. She returned my call promptly and I was angry, not yet ready to talk.
The moms of big kids guided me, answered all my dumb questions, and assured me everything would be okay. They showed me beautiful pictures and promised me that I would "get there," get to the place where I would be okay with my daughter's diagnosis.
Whether one email, one cup of coffee, one returned phone call, blog posts you wrote or responding to my every post on an online forum - thank you Missy, Amy, Stephanie, Nancy, Meriah, Melissas, Kelle, Elizabeth, Courtney and Heather. And more. So many more.
The Friends Who Didn't Care (In a Good Way.)
They care about my kid, don't get me wrong. But Ellie having Down syndrome wasn't and isn't a big deal to them, and if it was, they hid it well. They sat with us in the hospital and prayed for us when we were scared but they've never made Down syndrome a big issue, even when it felt like the only issue in my life. I have to give a special shout out to Christina, who got a call that went something like, "We're having a girl and she has Down syndrome and I don't want to cry telling people but I can't stop crying so you need to tell everyone." (Nancy and Stephanie, when you update the pregnancy book someday, I think that method should be included in the "how to tell people" section.) There are too many friends in this category to attempt to list. Know that I noticed.
The Friends on the Road
Parenting includes plenty of self-doubt and guesswork and feeling lonely and wondering what the heck you're doing. Some friends on this Down syndrome journey are on the journey intentionally - Kyle and Kelly. Other friends raising a kid with Down syndrome are here by God's grace/chance/chromosomal fluke/all of the above, and I couldn't be more grateful. Nate and Laura, we aren't really sure what we'd do without you guys.
"You're not alone." "I've been there." Those words bring so much comfort.
Whether it's friends in the neighborhood (although would you all stop moving??) or friends online with same-age kids, I'm so glad to have met you, even those I haven't actually met. And I'm happy to live in a tourist friendly place where we can greet visitors.