I’ve been thinking a lot lately about this journey I’m on. The journey isn’t mine. It’s my daughter’s, but as her mother, I am her advocate & voice. It’s a big undertaking as she gets older. I try to balance giving her some independence but also knowing that I have to do most things for her.
I have always been an optimist. I think it’s one of the reasons I’m able to hide my pain so well. I don’t ask for help because I don’t want to appear weak. I don’t want people to pity me or feel sorry for my daughter. She was given to us for a reason and this journey we’re on is one that was prepared just for us.
I have been trying to find a way to express just what this journey feels like and I always come up short. There is so much joy within the sorrow. Sometimes it’s hard to decipher what I feel. My daughter has been sick for a solid 2 weeks. When she begins to improve, I don’t often feel joy. Instead, I’m constantly in survival mode, just waiting for the other shoe to drop. Having a child with a degenerative disease changes you. Suddenly, the laundry and cleaning don’t matter. You are consumed by doctor and therapy appointments and the constant worry. When she starts to regress or get sick, a small voice whispers, “could this be it?” I feel like we’re a long ways off from “it”, but the fear always remains. Any time she starts to improve, something happens and sets us back 2 feet.
We celebrate every single moment no matter how big or small. We hang onto the photos and videos that show the skills she once had, but are gone now. It is bittersweet to see how short-lived those victories are. I relive those happy moments over & over. Many of our hospital stays have been traumatic - for Jordyn and for us as her parents. I live in a constant state of exhaustion trying to make sure everything is done now & to plan for the steps ahead. We never get a moment to just breathe.
As Jordyn gets older, my worries grow. Each year that passes is a year closer to what could be the end. Weekends are often spent just snuggling and watching tv. We will never get these moments back.
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