Today we put together our new filing cabinet (a Christmas present, thanks family!) and I was tasked with moving papers from our makeshift crate/filing cabinet to this real one with drawers.
After sorting the car titles, credit card statements, investment reports, etc–I finally reached the big one. The health-related documents. Insurance EOBs. Bills. Appointment summaries. I saved it for last for a reason–there was a lot.
And while I was sorting these health-related papers, I found myself unexpectedly near tears. Seeing the dozens of insurance benefits statements and bills for my 18 months old son, far more papers than I had in my own stack, was difficult for me.
Seeing the itemized list of tests he has had done–x-rays and lab work, a sweat test, a barium enema, half a dozen speech evaluations–brought back the emotions experienced during each of those tests. Charles cries when a stranger says ‘hi’ to him, so you can imagine how pleasant he is when doctors are passing mild shocks through his arm or poking around for blood draws. Every test left my husband and I questioning if this torture we were putting our son through was worth it, if we were being the best parents we could be, if those who said “he’s just small, leave him be” were actually right. I remembered the feeling of lugging a baby in a car seat, a diaper bag, a pump, and a cooler of milk around a hospital complex going from department to department for tests and appointments, feeling out of place and overwhelmed. Seeing the feeding therapy notes saying he only ate 1 bite today, all the notes on cups and bottles to try, all the lists of ideas for “heavy work” to do before eating so that his sensory needs would be met….it’s just a lot, people. Seeing all the papers just reminded me of all the STUFF that our family thinks about daily that wasn’t part of our plan.
Are we running low on medical supplies? Better call the home medical supply store again.
Do we have an emergency g tube along in case his gets pulled out?
Is the feeding pump having issues, what do we do if it doesn’t work tonight?
Should I go back to tracking each calorie, is he eating more now or less than a month ago?
Is he back on the growth chart yet, or still under 1%?
This was not our plan. I believe it is part of the plan God has for us, but we certainly weren’t expecting this when we planned to have a child.
9 months ago I called my mom crying because my son was going to have to be evaluated by a speech therapist–a specialist!–because his weight gain was so slow. They wanted me to try adding formula to his breastmilk bottles–how awful! I laugh-cry remembering those thoughts, considering he had surgery 4 months later to place a feeding tube and now sleeps with an IV pole next to his crib. His list of specialists has grown since then for sure.
Sometimes it feels like out new normal, no big deal, but other days the reality hits me: this isn’t typical. This wasn’t what we expected. And the unexpectedness of it all is what has the biggest impact on me. The day to day really isn’t bad at all. I have a very happy, mostly healthy son that just isn’t a big eater and inherited my super fast metabolism. He’s recently learned how to say “turtle” and “hat” and loves to do the actions to “Baby Shark”. But when I consider what I thought his life would be when I first held him in my arms 18 months ago or felt him kick inside me 2 years ago–I’m sad at how this is different than that plan. I didn’t plan to pack puke bags in the diaper bag and store pictures of the inside of my child’s abdomen in his file (pics taken during surgery). I didn’t plan to feed my child daily through a hole in his stomach. I didn’t plan to see failure to thrive, low weight gain, feeding difficulties next to my son’s chart every appointment.
Everyone has unexpected things that happen in their lives, and many people have far more difficult journeys with their children than we have had so far. One of my students recently had surgery to take a biopsy from part of his brain, and I know that my son’s journey is far simpler than his and far less difficult. But today, while sorting the papers to place into the new filing cabinet, I’m just struck with lots of emotions. I’m reminded of the constant inner battle to keep believing this isn’t my fault. I’m reminded of the questions that make me feel inadequate, even though they have to ask them. How often do you offer liquids? Do you keep meal times positive? Are you sure you’re producing enough milk? I’m reminded that our kitchen cupboard full of syringes, extension tubing, and pump feed bags isn’t something that most homes have.
It’s been a really good week. Charles has had a much better appetite than usual, hasn’t thrown up once, and actually gained a few ounces. But I still mentally count how many calories were in his 3 crackers earlier (29), I still hurt a little when I see posts on facebook about a child just a couple months older than Charles moving into a toddler bed (not something we can do while Charles is hooked to a machine during the night). And even though it’s been a good week, I still starting tearing up when sorting through the filing cabinet. This wasn’t the plan, but it is our reality. And even though my plan was for a family with simple health needs, I wouldn’t trade my son for the world.