I’ve blogged pretty extensively about Sammy’s pneumonia, Wren’s Celiac, the year of 2011 being a roller coaster ride of PICU stays and allergy testing, counting baby breaths and eliminating over half of the foods in our diet. We grew a ton in Christ during this time, and we became more disciplined.What I have hesitated to blog much about because it hurts is that I think I was the worst of the worst of mothers that year, especially to Wren. Because I was so tired; because I was so scared; because, at times, I was so hungry; because I didn’t even focus on trying to be patient, instead settling on surviving every single day and moving to the next with everyone still intact. Some days, we just barely made it.
When we arrived home with Sammy after his bout with pneumonia, I came home to a quarantine situation with two kids, one of who had a major nervous breakdown in my absence and one who was to be rushed to the hospital immediately “if you even think he might be breathing differently.” Wren did not recover from her breakdown; it was her trigger event, activating her Celiac and beginning days that looked like this:
- Wake up at 5:45 in the morning to feed Wren, try to keep Sammy asleep while nursing him and watching Alice in Wonderland or Cookie Monster.
- All day: stay in the house, feed Wren 13 more times (not an exaggeration), change her diaper full of food at least seven times, nurse Sammy, deal with Wren crying for no reason, call the doctor, wait for Dennis to get home.
In between I was crabby, sleep-deprived, and not that understanding. Once Wren was diagnosed, we added forcing supplements down her at least five times a day and completely changing our diet, with grocery shopping averaging about two hours a trip. At least we could all leave the house by then and go to the store.
My memories of that year involve me saying “no” a ton and “take the supplements the easy way or the hard way, but they are all I have to help you.” I also fought with some GI doctors, rushed Sammy back to the doctor for breathing issues, and went to bed every night replaying all the things I had done wrong as a parent, vowing to do better tomorrow.Wren was two. Sammy was an infant. They deserved better.
What I learned later was that sleep deprived people have memory issues, one of them being that they remember the bad times but can’t remember the good. I spent that entire year fearing sleep, afraid I would awake to Wren choking on vomit or Sammy not breathing, so even when I did sleep it was broken. I started to wonder, had there been some good? Would I ever be able to dig deep enough to find it?
About two weeks ago, Sam found the old C is for Cookie DVD. He asked me to sing the theme song; I knew it by heart. Then I started getting flashes, memories, short but real. Sometimes we watched Cookie in the afternoon, when Wren would sleep in later than 5:45. We’d save TV for the end of the day. Sammy would be awake, and towards the end of the DVD, Cookie would go all retro and enter the disco. He’d proceed to sing about how he “lost his cookie at the disco” complete with 1970s styled back up dancers. Wren loved it. It was glitter and crazy and disco ball delicious. It was right up her alley.
And I danced. Almost daily, I held a baby Sammy on one hip and a tiny, malnourished Wren on the other. We spun under the ceiling fan, our own private disco ball, and we sang about our cookie at the disco at the top of our lungs. It was the best part of my day. I’m the TV control freak, but we would rewind that song and dance to it four or five times in a row, until I didn’t have the strength to hold them both anymore. It was so good.
I cautiously asked Wren, so scared I had filled that year with so much bad that she wouldn’t be able to retrieve any good, if she remembered Cookie. She’s five now, and this just happened weeks ago. Thankfully, a smile spread across her face, and we started singing our cookie disco song, hand motions and dance moves. She laughed. I wanted to cry.
Cookie monster is a self-confessed glutton, but he’s a good friend. He reminded me that it is almost never all bad. As I let myself try to release the guilt and think about that year a tad more objectively, I hope more good stuff will surface and I’ll remember giving my kids at least a few things that were precious to treasure, like disco ball memories and a mom who cared, even as she came unhinged.
I attached Cookie rocking it at the disco. Enjoy.