Whenever people ask how our two-year-old daughter Georgia is doing I’m pretty quick to reply with some version of, “She’s amazing! She’s doing great! She’s actually phenomenal!”
And typically, I really do mean it. Georgia has been through more than anyone I’ve ever met and yet she is still the happiest person I know. She has the innocent joy of a child, the heart of an absolute warrior and the wisdom of my grandmothers. While our journey hasn’t been easy, I am thankful every moment of every day that she chose me to be her mom.
I also know there are a lot more questions people have about Georgia - and her future - that they probably don’t feel comfortable asking. I know because I have those very same questions. Will she walk? Will she be able to go to college? Will she ever live on her own? Will she have a career?
The truth is, we don’t have all those answers yet. We may not have some of those answers for a while. But in the meantime, I wanted to share some deeper insights related to that question I get asked every single day: how is Georgia doing?
First, let’s start with the big picture view of Georgia as a pediatric heart transplant survivor. The first year is critical. If you make it through your first year with no major complications (Georgia is going on two years and counting) then outcomes improve dramatically. So we have thankfully been able to step back and take a breath because (knock on wood) - from a cardiology standpoint - Georgia is doing well.
That said, there are now plenty of obstacles she’s facing that are related to the stroke she suffered when she was nine days old. The stroke affected the left side of her brain which is the part of the brain linked to language and memory. I remember the day they told us about her stroke. When your baby is holding on by a thread on life support, when the nurses are chasing her blood pressure and the labs are showing she is coming out of multisystem organ failure, the news of a stroke seemed less significant than if it had been an isolated event. The truth was all I wanted was to hold her and breathe life into her and make everything else go away. But I couldn’t. And that reality was a hard truth to face every single day, until the day we took her home.
I wish in those early days someone could have shown me this video from two and a half years into the future.
If I could have seen that video and known the outcome - at least had I known that we were going to be able to take her home one day - it would have helped me with the balancing act of trying to be the best mom I could be to all of my children. Knowing would have helped me on those nights when I had to walk by her empty room as I was putting her siblings to bed after a long, hard day at the hospital. It would have helped when I had those overwhelming maternal instincts kick in, almost like Kevin’s mom from Home Alone when she forgot him in Chicago and the rest of the family was on their way to Paris. I would be driving down Route 3 and I would suddenly snap my head around to see nothing but an empty backseat. Instead of Georgia it was just me, by myself, and the tears would start streaming as I recognized the instinctual reaction I was having to being away from my newborn baby. I know I’m not alone with these feelings.
Today, through answered prayers and medical miracles, Georgia is a joyful, dancing, bubbly, BABBLING MACHINE! Her growing vocabulary already includes a handful of words like mama, dada, diaper, light, hi, and...wine (no idea where she learned that last one but I assume it was from her dad).
She’s in an adorable phase right now where she will chatter for three or four minutes straight. She talks with her hands and uses all sorts of different intonations that mimic how Ryan and I speak. The point is - she’s communicating with us and we all understand each other. And whenever I start asking the question - but what’s next? - her stroke neurologist patiently reminds me that Georgia is making incredible developmental strides and is continuing to defy neurological odds on a daily basis.
I can tell you that one of the topics not included in the pamphlet they give you on caring for a pediatric heart transplant survivor is how to navigate toddlerhood. Seriously where’s the pamphlet on that, science? One of our newest challenges is figuring out how to maneuver some of those endearing childhood phases that I didn’t think twice about with our three older kids. For example: SLEEP TRAINING. We had no problem sleep training Kendal, Scarlett or Jack and to this day, they’re all great sleepers.
But Georgia...not so much. She has always wanted to be with me at night and she’s never been shy about making that desire known. More often than not, she ends up in our bed. For the longest time I just couldn’t bring myself to sleep train her. The problem wasn’t that she couldn’t physically handle it, the problem was that I couldn’t emotionally handle it. I watched her fight so hard just to survive, and if she wants to sleep with me instead of in her own crib, so be it!
However…I think it’s also worth remembering that sleep deprivation is a form of torture. :) After a really rough night with Georgia a few weeks ago, Ryan and I realized that we probably needed to try something new. Our nurse practitioner at Boston Children’s Hospital referred us to the great team over at Boston NAPS. A week later, Georgia started sleeping through the night. I truly believe her sleep consultant Ellen is a miracle worker, and I’m looking into getting her sponsored for a Nobel Peace Prize.
I know that life with Georgia will never be “normal” (whatever that even means) because we are always trying to get ahead of whatever the next bump in the road may be. This past summer she started having seizures and ended up being diagnosed with a rare form of epilepsy. Her eplieptic spasms were not only excruciating to watch as a parent, they were also terrifying because they’re associated with long-term neurodevelopmental delays. But after a high dose steroid treatment, the seizures subsided and much like every other medical setback Georgia has encountered, she persevered.
So yes, there’s much that remains out of our control. But as a family we are committed to effecting change and it’s our mission to help fund as much research as we possibly can to advance the field of pediatric cardiology. It’s why we launched The GCB Foundation. I want to know that no matter what, we did absolutely everything in our power to give our daughter every possible chance to live a long, fulfilling life.
And in the end, in order to assess what’s possible in her future - we have to acknowledge how far she’s come in the past. When Georgia came home from the hospital she was on a feeding tube and she was taking 19 different medications. She’s now eating on her own like a champ, and down to five medications per day. Sometimes when I’m eager for answers on her future, I have to remind myself to step back and remember that every milestone she hits is its own miracle. She keeps showing us that there is no scientific ceiling anyone can put on what’s possible for her.
That’s why I remain so quick to tell everyone who asks - Georgia is amazing. She’s doing great. She’s actually phenomenal.
From my heart to yours, I’m wishing each of you a holiday filled with peace, love and joy this year. Cheers to all the mountains we’ll climb in 2021!