I really should be fine. I have been at this for a while right? I am almost matter of fact about all of the interventions I face with the boys, the constant change, and the stressors. Yesterday, even first thing this morning, that’s how I felt.
As I was sitting at work today, I kept commenting to my friend that I just felt weird, like parts of my body were a bit numb and I was just out of sorts. I couldn’t focus, I felt really sleepy. In some ways that’s just a typical Friday, ha. I really didn’t think much of it.
I didn’t mention it, but John was away on a fishing trip Monday through Thursday, so I was on my own with the boys, work, and the revelations surrounding Nate’s health. I don’t mind going solo, in some ways I even enjoy it. But it was busy- I was getting the boys ready for school next week, I took Jack to his first swimming lesson, I arranged for all of the new medications- flagyl, fluconazole, the mitochondrial cocktail, a new supplement for Jack, I tracked down Nathan’s lab results. I spent literally hours on the phone this week, and frankly was feeling pretty damn proud of myself for all I accomplished. On top of all of that, I spent about 30 minutes on the phone with the primary investigator from the NIH study this afternoon nailing her with a million questions. She was very forthcoming, and she was warmer than most, so I count that as a victory. I’ll write more on that later- I have about 5 posts swimming around in this head of mine, but first things first.
Anyway, John helped today- he drove to Baltimore to pick up a special gluten free, flavored version of flagyl because even the doctor said the regular formulation is just too disgusting to expect a child to take. He also drove the boys to and from Cisco Center. So I started to breathe, and relax just a little. That’s when my head started to feel fuzzy. Now I think I was feeling all the overload and shock that I had put aside while John was away. I was starting to actually process all that was going on.
I don’t know quite how to explain what happened next, but here goes. I had planned to go to the grocery store this evening, the cupboards were pretty bare and I needed to pick up the fluconazole. First I went to A.C. Moore for a little retail therapy- I wanted to get some fall decorations. I have been feeling festive. It took me an hour to pick out maybe 3 things- I was wondering around like a zombie, and I felt like one too. I am not usually an indecisive person.
I then moved on to the grocery store. I needed to get regular stuff, but I also wanted to pick up a bunch of different beverage options for Nathan. We have many medicines to get into him right now, and the pharmacist warned me that the Coq10 in the cocktail is not going to dissolve all the way, so he suggested a thicker beverage to disguise it. I got vanilla coconut milk, chocolate almond milk, and vanilla coconut milk yogurt drink. Hopefully my picky boy will tolerate or even like one of these. I made the mistake of trying the unflavored almond milk I use for cooking the other night and he looked at me like I was evil, spat it out and threw his sippy cup down the stairs. Not a ringing endorsement.
I was talking to John last night and we agreed that we need to reinstitute some aspects of “the diet” we had Nathan on a year and a half ago. This is the specific carbohydrate diet, which is meant to starve the yeast in the gut and help prevent it from recurring. So I was standing in the grocery store, thinking about what ingredients we need- I used to bake Nate’s almond bread every other day, fry up almond coated chicken nuggets and cook homemade applesauce for him. I had him on a very very restricted diet. I instituted this diet at what I would have to describe as the “rock bottom” period of our family life that occurred about 6 months after Nathan’s diagnosis. I stood in the organic food aisle and tried to picture the ingredients that I used to have memorized- coconut oil, almond flour, eggs, bananas, honey…..and the tears just started flowing. I couldn’t stop them, I was so embarrassed. It’s like everything that is going on, everything that I need to do just hit me all at once. That and the memories that I associate with the diet combined were just too much for me. I can’t stand that we are facing the same problems over and over again. I can’t stand to think that Nathan’s little body has so many things going on inside that we can’t seem to fix. I don’t want to make that bread again; I don’t want to make the applesauce- even though I know I will. This reaction made me realize something. You can never underestimate the power of your memory, or as our marriage counselor would call it, the amygdala. Those past hurts can creep up on you when you least expect them and completely knock the wind right out of you. And all over something as mundane as honey.
My biggest fear right now? I am afraid to hope for the improvements that could result from all of these interventions. I have gotten my hopes up so many times before only to realize that it wasn’t that a treatment was effective but that Nate was just having a good week- and things went back to baseline soon after that. I want to be that mom, who sees her little boy come back to her so badly, but I have been trying so hard for a long time (or at least it feels like a long time). I don’t want to set myself up for another disappointment.
Eventually I pulled myself together, finished the shopping and came home. Right now, I feel exhausted and overwhelmed. In the morning I will get up and start to make out a new medication schedule, start testing out all of the different beverages and pray that one works. I will bite the bullet and make the almond bread, and the chicken. Tonight, I am eating ice cream and watching a movie, because that’s about all that I’m capable of.