“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!