I have explained Hailey’s diagnosis to many people. I always end my explanation on a positive note. Jordan’s Guardian Angels is working with cutting edge science, around the clock, to find a treatment and a cure. And I KNOW that it will happen. One thing that I have proven through our diagnosis journey is that my instinct has not been wrong yet. So when I say that I KNOW there will be some type of medical breakthrough, I do not doubt myself or SCIENCE for one second.
When I tell people how hopeful we are for her future, I always get the same question. What would a treatment or cure mean for her?
I don’t know, truthfully. Only time will tell.
I have spoken with other Jordan’s moms, and we talk about the future. I talk with another mother about our daughters, constantly. We dream about planning a trip to China or the United States, and how we would watch our girls run around together, go shopping in matching outfits, and simply cause mischief. We would love for them to cause mischief. This is our hope for our girls; for all kids with rare diseases or any illness.
I envision a medical intervention as almost a magical switch- all of a sudden, a typical child without difficulties. One day, she will wake up and start running around, and she will be talking up a storm. Realistically, I know that whatever science brings us, it will be a marathon, not a sprint. It will take time, therapy, and MORE love and support for her to catch up with her peers. But again, she doesn’t need to catch up with anyone. It is at her pace and her speed. Hailey is being compared to Hailey and Hailey only.
One question I have been asked by a few people, which was astonishing to me, was…will a treatment or cure change her facial features?
I chuckled in the uncomfortable moments, because it was all I could do in that time and space.
I am learning how to be an advocate for my daughter, for humankind in general. I have never been in this place before.
I reeled the conversation in my mind so many times, over and over again. How did I not say something?
Will a treatment change her appearance?
G-d, I hope not. Because she is beyond beautiful. She is the most beautiful baby girl I have ever seen.
I wish I said that in the moment.
But I am saying it now.
I am learning now.
And hopefully, people will learn along with me.