diagnosis day take 4

Today marks 4 years since we received that dreaded phone call confirming Leah's diagnosis of Rett syndrome. The phone call that changed the entire trajectory of our lives. And while I cannot say I'm glad we got that phone call, I can say I'm glad to see, four years later, where it has led us. The people we have met, the lessons we have learned, the lives Leah has changed for the better.

Life with Rett syndrome is rough. Period. It's rough if you have it, it's rough if you live with someone who has it. But, four years later, I can say I feel much less lonely than I did that Friday afternoon, sobbing all alone on my kitchen floor.

In the last four years, we have amassed an army of people who care. People who have given their time, talents, energy, money, and love for one little girl. Family, friends, acquaintances, teachers, therapists and even strangers. We have been welcomed with open arms to a new family, our Rett syndrome family, who picked up our crumbled pieces and put us back together. And now we are the ones welcoming fragile families to the fold.

Most days, I see people in a very different light than I used to. I'm not afraid of a child who is different. I feel a connection to a grieving mother. I try to give the benefit of the doubt to someone who has wronged me. I have so much gratitude for individuals who have seen a need and stepped in to help. I have been humbled daily by the sacrifices made by others for our family's benefit.

Every year, I promise myself that today will just be another day, but I always end up thinking so much about that particular day and its events, and the few months leading up to it and I seem to grieve all over again.

I know we are blessed to have Leah in our lives, but four years ago we officially lost parts of her and had to bury a lot of dreams.

And this year, for the first time, Leah has shown us her own grief over her diagnosis. She has shown us sadness and anger and even a bit of fear. That could be partly due to Kate and her daily developments and achievements. It could be because Leah is getting older and truly seeing everything other children can do that she can't. I'm not sure. But either way, she feels it, and some days I just don't know what to do about it. 

Leah has taught us more than I could ever have imagined about strength and love, forgiveness and courage, faith and work, joy and sorrow. 

So much joy and sorrow. So much joy that sometimes I can't contain myself and I smile on the outside and in. But so much sorrow that sometimes I find myself unable to even breathe. 

But you always do. You stand back up. You take a breath. You wipe a tear. You give a hug. And you move on. And you do it with your amazing army. (And your amazing miss ribbons.) And then you try and do the same for others who are crumpled on their own kitchen floors, phone in hand, today. Because their lives will change. Drastically. The new path might be rough and rocky and dirty and dark. But you'll see amazing things along the way that you would never have otherwise seen; and in the end, it leads you exactly where you need to go.