my husband and I had the honor of going to Qui to the Cure, a benefit for the Cystic Fibrosis Foundation, again this year. In much of the same way my husband tells me that Nathan makes me a better mom, I think Nathan makes my husband a better PA. Having a medically complex kiddo, helps him understand on a personal level what it’s like for his patients, and especially his patients’ parents.
I love getting to meet some of the parents of the kids he cares for and reconnect with his co-workers. This year the keynote speaker’s wife came up to me and said “I read your blog.” How completely shocking and humbling. It feels strange when worlds collide through the Internet, and the medical community, and all in the same city. Anyway she is an amazing mom who is boldly sharing her son’s story to help more families like hers and to find healing herself.
I don’t fully get CF, but I get having a medically fragile kiddo. And it’s hard. It is filled with doctor appointments, therapies, medications, and precautions all while living with the threat of loss.
This family’s story touches my story just enough to remind me, yet again, that there is something greater and brighter going on here. Something outsiders may not see at first glance. But when you look inside and look deeper, you feel it intensely. The hidden blessings in the midst of the messy circumstances. It’s the little successes that become major victories.
To advocate is to argue the cause of another. On nights like this – though few and far between – the advocating makes us feel stronger than the illness. It unifies us in a way and gives space for hope and progress to surprise us. We even dare to anticipate and expect it. Through the tears of another parent I know that our stories are different, but they are not so different. And in a way we are advocating for each other.
So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” – 2 Cor 4:18
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!