To My Daughter on Her Birthday….
This past year you’ve conquered more than most people do in a lifetime. Over 50 hospitalizations, 7+ serious bacterial infections and thousands of seizures. You did it all with a quiet grace and strong grit that peaks a smile even in the hardest of times.
You conquered all this on top of a genetic condition that says you shouldn’t be able to swallow on your own safety, or walk, or use your hands, or talk- and you do all of these things still with a fiery determination that is simply inspiring. You said mom twice yesterday kiddo. And Dadda for the first time ever. Wow. Just wow.
You are the strongest person I know. Hands down. Your journey to wellness has been long. It's been hard. Actually, it's been really, really hard - but always worth it.
But I want to tell you today is to never give up. Do not lose hope. The battles we faced before are not the battles we face now. You shine bright. You are seen as a person, not as a sum of your genes.
You are heard. You are seen. Your worth is more than the sum of your genetic blueprint. You are not a problem that needs to be solved. You are the gatekeeper of hope for so many. You are the light, the potential if we don’t limit it. And you should stand proud knowing you are changing the way things work, one doctor, one hospital at a time. Just at six years young.
The people in charge of caring for you - we all see you, feel you, hear you. And that’s family and doctors and larger systems of care like hospitals, social systems, school. We are all rooting for YOU.
I know you say you are lonely. Scared. Worried. I want to take it all away. But I can’t on my own. You will still say you are lonely until you have a true best friend. And this birthday that is my wish for you, my sweet child. It is a true best friend. I know it’s why you’ve been asking for a dog, and I am so sorry we have not been able to give it to you.
You so clearly communicate what you want, and life isn’t that simple my little princess. But the time will come, and you will have many, many close friends. And a dog. Who will silently love you as much as you love them.
All I can say now is that you are traveling this path for a reason and you are teaching lessons to people that need to be taught. That is God's work. And you are doing it. And soon your trials will be over. And soon you will be what you are in your dreams. I can’t guarantee that life won’t bring you more pain, because it will. But the stuff you’ve had to deal with, kid - that stuff, it's almost over. And friends are soon to come.
So keep your strength. Don’t give up. No matter how bad you feel- no matter how scared you are- know that you are never alone, and this stuff is solvable.
You are with so many who are fighting their own healing journeys near and far - young or old. You and their souls speak to each other in the echoes of loneliness in hospice rooms or trauma rooms.
Find your breath, my love. And there you will find your people.
Being a mom to you has been simply the best reason for existing one could ask for.
Today, you are six years old. Cheers to many, many more years of love, laughter, school, and birthday parties with lots of friends fighting for your gifts. My only, my love.