Outside the window are huge, wet, sloppy snowflakes falling fast, yet softly. I walk outside to catch them in my hands and they melt on contact. Andrew is still asleep, we both feel like we’ll never recover from the painful sleep deprivation of this fall. I truly don’t know how we survived it.
I like the snow because it causes me to actually stop. How can I feel stressed when I look out at that white magic and take a deep breath? It is like God is showering my backyard with calming confetti. I curl my fingers around my coffee cup and throw a fluffy blanket across my lap. In the South snow makes everything stop.
Sometimes we need our schedules hijacked by beauty.
These days it feels like we are walking a tightrope with Oliver’s health. A small gust of wind or a lapse into dehydration can send us tumbling down. In the past, I used the phrase “medically fragile” to describe our situation; now I feel like that is actually our reality. The threat of going back to the hospital is a fear based in reality.
But if I am honest, sometimes I miss the hospital. I don’t miss the terrible pull out bed that makes you feel like you slept on steel rods, or the endless beep of the monitor. I miss the simplicity. Just like snow stops the South, hospitals cause you to hit pause on virtually everything in your life. When I am in the hospital, the world is about caregiving and nothing else. Every single move I make is about Oliver’s care. Andrew and I’s conversations orbit around him and we click into hospital mode, where we work so well as a team that we even surprise ourselves. The hospital doesn’t feel like a tightrope, because there is a safety net and people on every side to catch you.
There are two factors to Oliver’s health that require intense monitoring everyday, the input and output. We have to get 1800 calories, 55 oz of water, 2 wet diapers and 2 dirty diapers a day just to maintain his health and weight. This is not easy to accomplish, and sometimes causes us to do crazy things.
The other day we were so focused on enemas, catheterizations and getting to our output count that we got behind on calories through the feeding tube. So in the afternoon, John and Angela took him around to tons of places to see if they could get him to eat. You can only get so much nutrition through a tube in a 24 hour period. They tried it all...cheeseburger, no thanks. Taco, not today. Donut, not in the mood right now. Yogurt parfait, not my favorite anymore.
By now we know that the initial genetic tests didn’t show anything definitive. He will have another wave of testing that will take a few months. By the end of the summer we might know more; then again, we might not.
When Ollie was diagnosed with Tuberous Sclerosis we were so thankful to have a community, clinical trials, advocacy for research dollars, Facebook groups, etcetera. We never felt alone with the diagnosis, and could quickly identify what we needed to do to get him the best care in the country.
Not so with Mitochondrial Disease. I feel lost. I am not a stay at home mom this time, so I don’t have time for endless hours of research. I feel torn about juggling all the responsibilities I have this time around. This diagnosis also comes with g-tubes, catheterizations, feeding teams and staying out of school. It flipped our world upside down in a way that Tuberous Sclerosis only did gradually.
These days, we often put Ollie in the bathtub to help with his stomach pains and G.I. issues. He loves it and happily splashes around or spins the wheel on a toy truck for an hour or two. We have never been big fans of the bath because of his seizures. Since we haven’t seen them in almost 5 months, we are feeling more open to it. Oliver has our master bathroom, so he has a huge triangle shaped tub. We are so pleased he likes it and it provides comfort for him, especially on days when he is working through painful constipation or gas pains. When he lies all the way down in the bathtub his ribs poke out, his little gtube sticks out above the water line, and his face is often dotted with bubbles on the edges of his hair line. As he giggles, I smile, but I also feel that deep pit in my own stomach, worrying about his frailty. I know a stomach bug or the return of the seizure monster could put him in a life threatening situation. The tightrope life means you have to stay focused, even when you need a break or feel exhausted.
I want to pull his thin, wet body out of the water carefully and slowly to making sure he doesn’t slip, and then hold him in my arms. I want to wrap him in a huge, warm towel that smells like lavender and tell him I am so sorry that I can’t control the length or even quality of his life. I want to whisper how unfair all this is as I tuck his wet hair behind his ear. I want to tell him that all those things I shouted after he attacked me in the wee hours of the morning in October weren’t true. I said things I regret. I truly thought I was going to shatter into one million tiny pieces. I want him to know I can handle this new tightrope living, even though I said I couldn’t. And I want him to know that for every strand of hair he ripped out of my head and every scar from bite marks he left, it never changed my love for him. I now know how much he was suffering. I will always feel brokenhearted that I didn’t know his aggression was an expression of extreme pain that I misread.
On the whiteboard in our living room we are tracking all these metrics. Nurse John remarked the other day, “It takes so much work just to keep Oliver alive.”
Andrew just came downstairs. He looks a little more rested than yesterday. I wish I told him more often how much I love him. I want him to know how much respect I have for the way he has handled the past 6 months of exhaustion; screams of pain, that life-changing diagnosis, sleepless nights and rapid response teams. His noble character shines so brightly. I feel so thankful that Ollie gets to have him for his Dad.
Andrew stands at our front window and marvels at the white wonderland that has appeared in an otherwise warm and early Spring. It is a sweet Sunday morning surprise for two often broken and weary people trying to love each other all the way through the unimaginable.
The snow is still falling swiftly and my coffee has cooled. It is time to crush pills and draw them up, place the syringes side by side on a tray and push them into the tube. There is a long list of caregiving tasks ahead, but isn’t the sweetest kind of providential gift when an everyday life is hijacked by beauty?