Friday Thoughts From Family (Guest Blog Posts by Sean's Family)

Snuggled up in my Hutchinson "blankie" not wanting to face the morning just yet, I feel a small, limber body crawl onto the futon with me. His leg thrown over my waist; his right arm over my shoulder, stroking my hair; his sweet voice softly whispering, "Tawna, Tawna, Tawna." I open one eye, just a slit, not fully, to see Sean grinning at me as his hair petting gets more excited, and I can't help but smile. Never having been a morning person, I know in my heart there is no better way to wake up in the morning then seeing my sweet Sean curled up with me, petting my hair.

My heart catches in my throat when I realize that just five short years ago, we thought we'd lose Sean. I remember it like it was yesterday. My mom had driven out to Goodland to spend time with the new grandbaby, while I was stuck at work. Glancing at my clock, I realized mom should have made it there, but she hadn't called to let me know she'd arrived safely. I picked up my office phone and quickly dialed mom's cell phone to make sure she'd gotten there okay. The horror and fright I felt when mom told me yes, she'd made it, but she was headed to Denver, as Sean had quit breathing and had been life-flighted to the children's hospital in Denver. My hands shook as I hung up the phone; my chest heaved as a sob escaped my lips. No, this cannot be happening! This is our baby; surely God wouldn't take him from us already! I sat at my desk, laid my head down and cried rivers. My co-workers gathered around, prodding me, trying to figure out what had happened. See, they knew I wasn't a crier; they always thought I was a pretty cold woman - until our baby was sick.

Finding out later that he had Down syndrome was a relief. Did I want him to have Ds? Of course not! However, having gone through the terror of him possibly dying, well, Ds was definitely something we could cope with in our family! Here I am, five years later, and I still don't think, nor designate, Sean as "my nephew with Down syndrome." Nope, he's my nephew; my godson; the sweet, silly, stubborn boy that can light up the room with his smile and squeeze your heart with his cries.

It seems every year there's someone new in my office that can't understand why in the world I would drive three hours for a one mile walk for Down syndrome, until I say, "Oh, well, you've heard me talking about Sean, right? My nephew? Yeah, he has Down syndrome!" People are always surprised because I don't "act" like someone with a nephew with Down syndrome. Really? How does one act that way? I've had friends comment on how "sad" it is. No, it's not sad, he brings me so much joy, just as my other nephews and nieces do! Sean hasn't allowed Down syndrome to define who he is, so why should anyone allow it to define how Sean should be?

Being close to a child with Down syndrome is a struggle; some days it's like we're all walking on eggshells, not quite sure what Sean is going to be able to withstand. The eggshell days are worth it, because eventually we get the days of Sean using a new sign, saying a new word, stealing the cheese off of his Tawna's cheeseburger, or eating a banana in Nana's living room. He's growing, learning, changing every day. He's still the silly, sweet, stubborn Sean who will wake his Tawna up with cuddles and hair pets.

Written by Tanya Carpenter, Sean's aunt