The Best Advice I’ve Ever Received About Getting a Diagnosis


It’s been two years already since we welcomed my daughter, Ellie, into our lives with her little extra somethin’ somethin’. And in these two years, I’ve received some amazing advice:

“Be kind to yourself.” “Don’t project into the future, enjoy each day.” “Milestones, schmilestones.” “Don’t compare.” “Don’t limit her.” “Admit when you need a break.” “Follow your gut.” The last one has proven to be an important one. But the one that’s really stayed with me was given to me less than a month after Ellie was born. Let me explain how it all happened.

Somehow, the Down Syndrome Network of Oregon heard about Ellie’s birth diagnosis, and they wanted to give me a Basket of Hope. I had no idea what this meant, and I hesitantly agreed to meet a local mom. We chatted over email, and I found out she had a son named Jacob with Down syndrome; he was 13 at the time. They planned on coming over to meet Ellie.

Meeting Jacob would be the first time I’d actually talked to someone with Down syndrome. I was nervous, and I asked my mom to come over to meet them with me. In a fateful sort of way, this mother lived a couple doors down in our neighborhood just a few years earlier. And now they live only a couple of miles away — I love when this stuff happens!

She and Jacob and his older sister arrived and were so welcoming and sweet. Jacob was tall and lanky, considerate and well spoken. I’m ashamed to say it now, but upon meeting him I realized I had some serious misconceptions about what the diagnosis meant, and I had a lot to learn. He was so sweet with Ellie. He held her carefully and he brought tears to our eyes when he said quietly, “You’re like me.”

elliejacob

Jacob’s mom was laid back and easy to talk to. I felt like I’d known her my whole life. She asked me what we liked to do for fun, and I told her our favorite things were entertaining and going boating. This was when she said “So, you like to throw parties? Keep doing it. You like to go boating? Keep going boating.” It was as simple as that. It was a defining moment for me. It’s hard for me to explain, but I felt lighter, like a weight had lifted off my shoulders. I kept thinking our lives were forever changed when we found out about Ellie’s Down syndrome. This mom went on to explain how therapy is important but to not let it rule our life. Ellie being home with her brothers, going on the boat, spending time with family and friends doing regular things is just as important as therapy. 

Since meeting her that day, I think about her words often. I get caught up (a lot) in wondering if I’m doing the right things. The list of therapies available is as long as my arm, and the list of vitamins and supplements she could be taking is huge. I have to take a step back quite a bit to make sure I’m not spinning out of control with the research. We have a smart, happy little girl who is a complete riot, who loves partying, and she absolutely loves boating. Our life as we know it is pretty dang good, and I’m so glad I had this seasoned mom to remind me that things only would change for us if I let them.

Next weekend I get to deliver a Basket of Hope to a new local mom. I have to mention how grateful I am to the Down Syndrome Network of Oregon to give me this opportunity. Receiving that basket two years ago meant the world to me. I’m so giddy to be able to meet this mom and her beautiful new baby boy. We have been in touch over the last few months, and I feel like I know her already. Actually, there were two new babies born in the area on the same exact day, how awesome is that!? I just have to say it, welcome to the club new mamas!

elliedec2

This post originally appeared on our three little birds.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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