Six Month Gratitude

Little Miss Eleanora just turned six months old. How quickly time is moving and in our house the six month milestone is a pretty darn big thing.

We celebrated Gwendolyn's six month birthday just after receiving her official SMA diagnosis. Our entire world came crashing down and the weeks that followed were trial by fire and, frankly, hell. At just 6 months things weren't looking so good — Gwendolyn was hospitalized at Stanford for a month and we nearly lost her — several times. But, Gwendolyn being Gwendolyn, smiled through it all. She greeted each new doctor (and there were many) with a sly smile and a gentle touch. And Bill and I were holding on to every single one of those smiles with all our might, drawing courage from our tiny babe. I often think I've romanticized her defined personality in her babyhood, perhaps to help me cope. But having Eleanora and seeing her funny, always joyful little personality already so very specific, reminds me that all those memories of Gwendolyn's Gwendolyn-ness were not a figment of my imagination. She has always exhibited such resilience (and playfulness). And Eleanora is her sister's sister — a strong, silly girl smile

Eleanora wakes up beaming. She's tough and quick to dust off (after shots, etc.) and takes on new experiences in her stride (meeting new people or being in a swimming pool were no big deal). She has always been alert and curious (her earnest looks seem well beyond her years, especially lately when accompanied by her new long monologues). As long as she can see us, she happily rolls all around and plays independently (tags are her current fave). Though, she much prefers to hold our hands and have us help her stand (this girl has loved standing since she was just weeks old). She isn't sitting on her own yet but she likes sitting in the Bumbo, especially if she is helping Daddy cook or helping me fold laundry. She just started giving us neck hugs (the best) and doing a little shy pose for a minute with new people (the cutest). And she loves, loves her big sister.

We waited such a long time to have another child and much of that was feeling we simply were not ready emotionally. I thought we may compare a lot (I don't mean the innocuous appearance similarities). In fact, I worried that we would focus on reliving the many moments we didn't get to experience when Gwendolyn became ill and that didn't seem fair to another child to feel our heartbreak in their milestones. And we didn't want a second child to feel the pressure of living in Gwendolyn's shadow. We had to first find acceptance.

It would be impossible not to acknowledge Eleanora's physical achievements as differing from Gwendolyn's, but, thankfully, this has come out as more astonishment than feeling bittersweet. But the six month marker has definitely reminded us to stop and cherish this moment. Not to compare — but to acknowledge. Six months is a blessing. A milestone most recognize as just a step closer to the big one year mark. But six months in the SMA world is something many parents never get to see. Just this week multiple parents had to say goodbye to their child. Many families have only just received the SMA diagnosis and as they are still trying to wrap their heads around the shock, their precious baby is gone.

SMA has made us all too aware of the gift of life. Yes, six months is very special indeed. And so we celebrate. We sang “Happy Birthday.” We brought out Gwendolyn's old 6-month toys for Eleanora to discover. She tried her very first food (avocado — she loved it!). And we are holding both of our girls extra close as we sit with gratitude for our little family. These two girls are our everything. (And, yes, they look so much alike but Gwendolyn had a smidge more hair wink)