There are some situations in life that let the air out of your tires so slowly that you don’t notice it until you’re sitting by the side of the road wishing you could remember how to change a flat tire.
Being a special needs parent is like that, like constantly having a slow leak. We know better than to let the tire blow, because we have to get our research done before tomorrow’s doctors’ appointments. Or we have to hold it together while the doctor explains treatment options. People ask how we’re doing and we honestly don’t know. I call it “medical mode” – the necessary state of pushing all emotion to the side in order to make good decisions for our special needs children. But at some point, we just run out of air. For me, that point came while cleaning up the kitchen after dinner one night. I suddenly found myself sobbing, with my face pressed to my husband’s back as he stood at the sink. The diagnosis was in, the research was done, and I could finally exhale all the pieces of me that had broken during the previous weeks.
Amelia (age 4) woke up limping one morning. Then she didn’t want to eat. Then she stopped walking about 50% of the time, insisting on being carried. Then she started crying in the night. Then it was “ow, ow. Hurt, Mommy.” Then it was scary test results and a hospital admission. Bloodwork, Xrays, MRI, more bloodwork, more xrays. Orthopedist, Oncologist, Hematologist, and finally, Rheumatologist.
So our newest diagnosis has been given: Juvenile Idiopathic Arthritis (formerly known as Rheumatoid Arthritis), an auto-immune disease. Amelia’s pain will not easily go away. We will have to suppress our daughter’s immune system for months, possibly years, with the hope of remission. We will try medicine for 3 months before evaluating whether or not it works. We will have to avoid sick – or even potentially sick – friends.
And so I cry. I’ve been worn out by the slow leak, which has been easy to ignore, harder to stop. Mamas, we need to pay attention to the leak. We need to slow down, pull gently over to the side. Schedule time to grieve. As John Piper recently advised, “Occasionally weep deeply over the life you hoped would be [for you or for your child]. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”
So tomorrow morning I will get up and read my Bible and pray and drink my coffee. I will research ways to help my daughter live with her newest diagnosis (and her previous diagnoses which include Down syndrome and a congenital heart defect). I will make appointments and argue with insurance companies and make charts tracking her medications, while continuing to homeschool my older two kiddos.
But tonight. Tonight, I grieve. Amelia saw her daddy hugging her mommy in the kitchen, saw my tears and said, “Sad, Mommy?” She gave me a big hug and patted my back. She’s the one in pain; she’s the one who’s struggling to walk. But she saw the heaviness in my heart and tenderly reached out to me. So as I travel through each day, trying to be more aware and pro-active about the dangers of slow leaks, I pray that I will care for myself and my daughter in ways that help me to be the best mom that I can be to my sweet Amelia.