I distinctly remember running in to our room, collapsing on the bed, and bursting in to tears. We were spending the week at a beautiful lake home in Deep Creek, Maryland with all of our extended family. I rarely focus on the things Anabelle can’t do, but this one was so in my face that day, so difficult to watch that I hit a breaking point. The reality of Belle’s life is just incredible. What she does despite all of her medical challenges is truly amazing. She really does everything. Well, almost everything. Everything except that one thing that had me in tears that beautiful summer day at the lake house.
Before I had Belle, I asked her doctor if she would live. He said, “yes.” Then I asked him if she would LIVE, like really live. “Will she be able to get out of bed, run around, go to school?” I wondered. “Yes, yes, and yes,” were his answers. “She can do everything,” he continued, “everything except for swimming and playing football.”
Perspective changes everything. In that moment when I honestly didn’t know if she would live, “everything but swimming and football” sounded completely amazing. And it is. But at the lake house, when Belle became a happy two year old who happens to LOVE water, and her cousins and brother were splashing around and jumping off the dock, thinking she wouldn’t swim for the rest of her life dug a sharp knife in the deep wound only moms of chronically ill children understand. This day was after a summer of hiding her in the camper while secretly taking Jonah swimming during her nap time, skipping out on water parks, and making up excuses as to why we couldn’t attend friends’ swim parties. That little mama melt down was months in the making. In times of rational thinking and conversing with the Lord, I know that Belle not being able to get wet is not something I should let bother me. But she’s my kid. And she’s awesome. And it sucks, darn it!
Some people with central lines swim. They come up with concoctions of trying to keep it dry and take the risk. But we saw Belle fight septic shock when she was one year old. I recently read an article from CHP that stated sepsis carries with it a 50% survival rate. We just can’t take those risks in letting her line get wet for a little bit of water fun. Still, I was a determined Mama and that day at the lake house I prayed, “God please let her swim. You are the waymaker. Please, please won’t you make a way?”
I started doing research. Was there any way that Belle could get wet without risking a central line infection? I eventually found a company in the UK that makes dry suits specifically for kids with central lines. Then I saw the price tag. Yikes! I knew the suit wouldn’t be covered by insurance and that we would need a new one every two years as she grew so it safely kept her dry. I continued doing more research and found a foundation that gives grants to medically complex children for medical equipment not covered by insurance. I wrote and submitted the in-depth grant for the dry suit. To make a long story short, we were notified in October that Belle won the grant and her first dry suit arrived on our doorstep one week before Christmas.
For the last two years, Belle has stood at the side of the tub while Jonah got his bath and happily splashed in the bubbles. Recently, she started trying to put her leg up over the side of the tub and her brother continually asks, “Why can’t my sister play with me?” But on Christmas eve, God made a way for Belle to enjoy the water. She had her first ever bathtub bath with her brother, and she enjoyed splashing in the bubbles and playing with water toys. She had her hair washed in a tub for the first time, and she even slipped and went head under for a brief moment before Daddy grabbed her. She smiled all the way (even when she went underwater!).
Belle getting her drysuit at Christmas was a sweet memory, and something we will always cherish. We are so grateful. Indeed, as He has all throughout her short life, the Lord made a way. But Christmas isn’t about my kids, or gifts, or God making a way for Belle to do just one more thing the doctors said she never would. Believe it or not, it’s not just about family, or even making memories. Christmas is about God being the true waymaker. It’s about Him seeing that our sin would keep us eternally separated from him if He didn’t make a way to fix the mess we made for ourselves. It’s about Him coming to Earth as a baby, God with us, so that He could grow up and die on a cross and make a way for us to be reunited again. Jesus Christ is the ultimate waymaker and the hope he offers is so much greater than my medically complex child getting to swim for the first time. This is the reality I pray to communicate clearly, for I know that some will read Belle’s story and be inspired by the incredible blessings God has given her, and miss out on the blessing of a personal relationship with the waymaker that He generously offers to every.single.person.
With Belle, we get plenty of opportunities to watch God make a way. Two days after Christmas we got the call that she was scheduled for surgery Jan. 2 at 9am. She will have her gallbladder removed and a liver biopsy. And just as I always do, as I watch them wheel my baby away to the unknown, I’ll weep and get on my knees and ask my Waymaker to make a way for her through the wilderness once again.
The same God who has brought her this far, desires to make a way for you as well. Isaiah 43:16, 19b
“This is what the Lord says, he who made a way through the sea, a path through the mighty waters…I am making a way in the wilderness and streams in the wasteland.”
Now to figure out how my girl can play football someday…