I imagine this may be as tough to read as it was to write, but it’s time.
In May, after a brain MRI, we received confirmation that Adelaide’s brain was smaller than it was in December. This was now a trend that we couldn’t explain away with med side effects. Her overarching condition, whatever it is, is neuro-degenerative. The word that has haunted us from our earliest days on this journey, our worst nightmare, has come true. We’ve watched as she’s lost the ability to suck her thumb, as she’s drifted more distantly from us month after month, and now this. There is no cure and no way to reverse it, her brain is deteriorating and we can’t stop it. When we received this news, Miguel and I were still determined to fight and do everything we could to provide her with the best quality of life available to her, but several events over the course of the summer changed our position. We realized we had to listen to what her body was telling us and, last month, we shifted our goals from improving her health to keeping her as comfortable as possible: we transitioned her to hospice care. Without an overarching diagnosis there is no way to know how long we have with her. I’m sure you don’t even want to imagine how difficult a decision this was for Miguel and I to make so we appreciate your support and knowledge that we have fought as hard as we could for Adelaide. Our number one priority remains to do what is best for HER.
For now I leave you with a Ietter I wrote to my sweet, strong, and feisty, Adelaideybug…
Becoming a parent is undoubtedly life changing. But you, my dear, didn’t just change my life, you caused an eruption. As the pieces have fallen these last few years, I haven’t been sure what to make of the remnants. The once familiar landscape was charred and with each step I worried the ground might give way beneath me. You have been stronger than me every step of the way. Nothing has come easy for you, fighting for some of the most basic and essential life skills, then losing them and having to fight for them all over again. I think that is why this next leg of the journey has been so hard for me to accept. We’ve been standing at the precipice for weeks? Months? I’ve allowed myself to be comforted by denial asking you to wait until I’m ready. Though, I realize now, I’ll never be ready and even more so, that the timing is not up to me. You’ve been fighting for your life for so long and I can see now that you are tired. It is my turn to be the strongest… and let you go.
You will not be getting better this time. The skills you have lost will not be regained. I am so sorry that your body has betrayed you in this way. It is not fair and it really, really, really sucks. But somehow, I think you know this already, in your own capacity. You’ve been, quite literally, screaming at me - trying to get me to listen to you. Of course I heard you, but listening was too painful. I’m listening now, though, my love and I will be with you every step of the way
As we make this transition I will be trying to understand what you want and need to keep you as comfortable as possible. Please forgive the extra pictures and videos I’ll be taking, I know I’ll want to hold on to all the memories I can. It’s the things I can’t capture that I will miss the most: the way you smell, and not just after a bath, but your sweet, “just you” smell. The feel of your forever baby soft skin and how tightly you squeeze my fingers even still. The way your hair feels when I run my fingers through it trying to comfort you and the weight of your body against mine in those rare moments when you let me snuggle you.
Please don’t worry about us, we will be ok. I know that may be hard to believe from my 4am tears when I crawl into bed with you, but we will. The volcanic soil from whence you erupted nearly four short years ago is the most fertile around and I can see now that you’ve been planting seeds this entire time. Seeds of hope, community, empathy and love. You’ve planted more than a garden, its an entire vista and I have never seen anything more lush and beautiful. But you didn’t just plant the seeds you brought the people into our lives to help us nurture and grow them. Without you, we might never have met the warriors who walk beside us now and who will help hold us up in the days to come.
I promise you, my angel baby, that your efforts, your fight, your life will not have been in vain. We will take the eternal lessons you taught us and continue to plant your seeds in the hearts of anyone who will listen. I promise you that I will never stop advocating on your behalf, raising awareness and money for research so that families in the future will receive their epilepsy, mast cell activation syndrome, dysautonomia, hypotonia or neuro-degenerative diagnoses along with a treatment plan to full recovery. I promise you that I will fight for science to catch up to the next child even though it could never catch up to you. I will fight so that you can rest, free from the pain this world couldn’t relieve. I love you so much my Adelaidey baby. Your loss will shatter me in ways I never thought possible but you’ve provided us with everything we need to heal. When it’s time sweet girl, we’ll be with you, and forever after.