Four years ago, I hunkered down on our computer which was affixed in our cozy makeshift nursery. I had been riding a wave of intense emotions for nine days, isolating myself from the rest of the world and transitioning through each and every thought and feeling. I was a brand new mom, and my first born daughter was just officially diagnosed with Down syndrome after her cord blood results came back two days earlier.
Tessa was sleeping sweetly in her bassinet, and I had been unintentionally avoiding sleep for a few days. I knew very little about Down syndrome at that time, but I knew far less about blogging or how on earth to start a blog. But thanks to Google’s magic, I found an easy and free site that I could create in minutes. Over the next two hours I poured my heart (and a week’s worth of hard tears) into that computer and let it all out. No longer would I be bound by silence and heartache. It was time. We hadn’t shared her extra chromosome with all of our families, and we had only otherwise shared with close friends. Because I knew at that time that I couldn’t repeat the story each and every time we crossed paths with people, this was the easiest solution to get it all out there. For me anyway.
I was scared; terrified actually. Once you put something out there, it is really out there. I knew that by doing so during a vulnerable time that I would be opening myself and our child up to critism, but I ultimately felt that love would greatly outweigh my fears or any judgment that could potentially arise.
Prior to sharing, it was a horribly confusing time. There we were madly in love with our newborn baby girl and celebrating her arrival, yet grief stricken by an unforeseen surprise topped off with heavy guilt from giving into moments of sadness. We navigated as the days passed and we learned so much, so fast.
I had already been in touch with one mom of a child with Down syndrome. She helped me through those first hard days. She also encouraged me to share our story.
I was right. Love poured into us from our family and friends and from those unexpected through tearful phone calls, text messages, visits, etc. I needed all of that. I needed people to rally behind us; to lift us up and to carry us through.
Even though we were scared, we were ready to see what the future would bring for our sweet girl.
Fast forward to today.
We rode that wave through four eventful years. And she rocked the hell out of each one. There were many difficult days and periods of time, but there were triumphs bigger than I knew possible.
Tonight she wrote the first two letters of her name over and over and over while doing her listening therapy. Per usual, I took 300 pictures and 22 videos of her while doing it because that’s the kind of mom I am. This week she mastered wrist manipulation to open doors and to remove caps from things like applesauce pouches and water bottles. Little milestones that we crave so much and celebrate so big. Just recently, she became potty trained before she turned four. She is talented, creative and brilliant. She sings, dances and plays with every ounce of her soul and loves with her whole heart.
And if I could go back in time four years to that mom anxiously sitting at her computer desk, I would hug her first and then tell her that every day forward would be worth every amount of tears–that her fragile mama heart would experience love more deeply, understand more clearly and appreciate more frequently. I would tell her that her beautiful child sleeping peacefully in that bassinet is going to profoundly change her life for the better.
I would say the exact same thing to someone out there facing news they weren’t prepared for; feeling scared, guilty, overjoyed and totally confused. I would say all of that and so much more.
This page has brought me so much healing. It has taught me about knowing when to push Publish and knowing when to save things in the Drafts file. It has allowed me to learn about so much about myself in the process. I need this page in my life; and even though I put it on the back burner often, I remind myself to carve out me-time to spill my brain here. Even if it means I have to stay up late and watched recorded episodes of the Real Housewives and The Bachelor.
So thank you readers…
Thank you so much for loving us, for choosing to stay with us and for supporting us for the last four years. I still don’t know a lot about blogging, but I let it be the only vessel for my thoughts. So many times I thought about hanging up blogging, but I remembered each person who is on the other side of the screen. Lots of friends and family and those I have grown to know over time. Plenty of people I have never met, but somehow feel so close to because you allow me to share so openly this life we live.