Anything can be

“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me…Anything can happen, child. Anything can be.” – Shel Silverstein

I went to the PWS clinic last Friday morning confident that it would be a better experience than it was almost six months ago when we last visited. I felt like so much good had happened in that time…and that I was better educated, less anxious, and more optimistic about what the future would look like for Eliza. Five humbling hours later, I numbly handed over our valet ticket and tried my hardest to keep the tears from coming before the car pulled around. I failed to do that. In fact, I felt like I failed to do so many things. It’s so dang hard sometimes!

We may have left our NG tube behind, but we’re on to new interventions now…there was talk of the next sleep study and the possible directions (like surgery) we could go afterwards depending on the results, talk of the helmet we need to be fitted for (which is uncovered by insurance but the price of my first car), the speech therapy we need to add (because she is apparently speech delayed), the hearing screen, the supplements, the increased hormone injections, on and on and on. It wasn’t that anything was bad in and of itself…it just suddenly felt like too much again. And I remember that I can’t take another hit feeling so vividly that I couldn’t bear the thought of returning to it. I wanted to crawl back into bed and wake up on the other side of the struggle.

But as much as I wished it did sometimes, I know it just doesn’t work that way. The only way through it is through it…so we picked up Amelia from the neighbor’s, ordered in dinner, and poured a glass of wine. We took a breath and let it be hard. We sat through silence together, absorbing the barrage of new developments and accepting that right now, we were drained…and then we talked about all the fears and insecurities that surfaced while we were at Children’s. Saying it out loud is the toughest part sometimes. It somehow seems to make it more real. And it is…there is a very real possibility that despite all the care, all the interventions, and all the love, Eliza will not be able to do and experience everything we hope for her. Even writing those words brings back the tears. It breaks my heart, and last Friday, we let our hearts break just a little.

But we didn’t stop there…we talked about our baby…we reminded ourselves that the future is not in our hands. And we stared at our girl. We went back and forth with, “isn’t she sweet?” and “we are so lucky.” And we are! We have two of the most precious girls in the world, and we have each other. I cannot imagine this journey without Derrick by my side. He is a testament to Shel Silverstein’s words, never having been a person to let the “couldn’ts” and “impossibles” stop him from achieving incredible things at crazy odds. It’s a contagious belief, and one I hope and pray our girls adopt for themselves. Because really, anything can be!

The living splendor beneath

“Life is so generous a giver, but we, judging its gifts by their covering, cast them away as ugly or heavy or hard. Remove the covering and you will find beneath it a living splendor, woven of love, by wisdom, with power. Welcome it, grasp it, and you touch the angel’s hand that brings it to you. Everything we call a trial, a sorrow or a duty, believe me, that angel’s hand is there; the gift is there, and the wonder of an overshadowing presence.” – Fra Giovanni

I went to my fist social PWS function about a week ago…what a wonderful, quirky, and close community I have joined! Derrick and I both hesitated to really be a part of it at first, and now I find myself running towards it with open arms. It’s incredible how positive everyone is…how loving and open and vulnerable. And how powerful! This is a crew ready to fight the fight and find a cure, and a crew ready to carry each other through thick and thin in the meantime. It is beautiful!

In particular, I met another mama who lives in my same neighborhood with a precious little who was diagnosed last year. She is on fire for the cause and started the brilliant idea of planning a Thanksgiving tradition that focuses not on food but on community and fitness and gratitude. Plans are underway now to (hopefully) host a 5k race on Thanksgiving to raise awareness for the fight against childhood obesity and PWS, the leading cause of morbid childhood obesity today. I am blown away by the synchronicity of our meeting and already certain she is a lifelong friend, and I am so excited to help build this with her from the ground up! It has turned up the motivation even more to spread the word. My mind is reeling from all the things I have to do…call to reserve timers and tables and portapotties…write Ellen, write Oprah, learn to run a 5k. I find myself waking up in the middle of the night and not being able to stop thinking about it all. It is so empowering and so exciting!

I wish I could go back in time and tell the terrified me about this…about the group of parents and supporters, about the baby smiles and giggles, about the hope and the momentum, and the purpose that was waiting just around the corner. It sounds crazy, but I feel so blessed to be on this journey. I really do. It has taught me so much and given me a true belief in Giovanni’s words…remove the covering of what is hard and you will find beneath it a living splendor, woven by love, by wisdom, with power. And it has brought me closer to a version of myself that I want to be…one that is honest and broken and grateful all at once. Hopefully one that is kinder too. And who knows, maybe it will even bring me to be a runner…but I doubt it :).