Yesterday was rough. For me the days leading up to the kids having surgery are some of the hardest.
I find myself unable to sleep or concentrate. Yesterday I was supposed to work a full day, but at noon I signed out for the week. It wasn’t just about focus. It was also about patience. I just don’t have patience for all the little nonsense that comes up in the day. Or the, although well intended, comments people make or advice people try to give. To add a little humor here are some of the best things I’ve directly been told or read.
1. “I had bronchitis once, so I understand what Lexi goes through.”
2. “Your kids problem is that you believe in God.” (Social media troll)
3. “My cousin found a miracle drug that cured their herpes. Maybe it could cure cystic fibrosis too.” (This person has sent me this message three times.”
4. “Your kid just wants attention. She could cure herself.” (Social media troll.)
5. Vaping causes cystic fibrosis. (Online news article.)
Normally I can just roll with it, but not presurgery. Presurgery I let myself get into online debates about the benefits vs harm of being able to modify genetic code. Yep that happened yesterday. Presurgery I have zero patience for people who create their own perceived trauma, like chronic illness is a competition?!
We live in two realities. In one we move along, do our day to day, and pretend our lives are normal. In the other every decision, every thought, is consumed by health concerns. The normal side usually wins. It’s where I remind myself to ensure we are living our best life. It’s where I repeat grateful, thankful, and blessed as to if trying to burn it into my subconscious. The darker side allows frustration to creep in. It’s where the words grateful and thankful are harder to speak, but where I forcefully remind myself that we are.
We are surrounded everyday by a world that mostly only sees the normal. The people we work with that know of CF but not the impacts. Even family that avoid the topic, because they really don’t understand or know what to say. The dreaded “she doesn’t look sick.” Or my favorite, never been madder in my life, “I showed her picture to a doctor, and he said she doesn’t look like she has CF.” Lexi is not pancreatic insufficient true, but that isn’t a requirement you know?
Lat night Advil PM was my friend. I went to sleep at 8pm. Hoping for a really good nights sleep, before we are in surgery mode. Today I’ll hospital pack, for a planned one night stay, but I’ll pack for three just in case. Last time 3 nights became 7 and my poor neighbor was at my house hunting nightgowns for Lexi. We will make sure all the laundry is done, and put fresh sheets on the beds. I’m going to teach Lexi to make lasagna (her requested dinner) to pass the time. I may take Brooklyn to the doctor if she’s still super congested, as she will spend the next couple of days with Grandma and Grandpa.
Tomorrow morning I’ll get up before 4 (if I sleep) and place the Nebulizer mask on Lexi. She needs 30 minutes of treatments before we head to the hospital. Timing treatments with surgery is important because of her lungs. Normally we don’t do sleeping treatments, but I’d rather have her asleep then anxious. We will leave the house at 4:30ish to make the drive to the children’s hospital, and checkin time of 5:30.
I’m sad because of the routine of it all. I don’t have to make a list or worry about what to pack. I know what meds the hospital pharmacy will have trouble finding, and I’ll have those labeled meds handy. I know to take a sheet for Lexi’s hospital bed, because hospital sheets make her itchy. I know to have two detailed lists of prescriptions and treatment schedule. One for preop and one for the floor nurse. I know if admitted to the 4th floor to ask if Nurse Hannah is working.
I pray you never have to have such a routine, or be sad because you honestly can’t remember how many times your child’s been sedated. But if you have a friend with a special child, and they always seem to have it all together, give them a hug. There is probably another view of their story that they aren’t letting you see.