I think at this point, most of you know about all we've been going through with Nolan's health and digestive issues. I talked about it some here.
It's hard to explain his/our struggle to other people. I can't easily describe what daily life is like for us or what, specifically, is so hard.
It's difficult to explain fructose intolerance to people. I had never heard of it before Nolan was tested for it, and I understand that other people haven't heard of it either. But nearly every single time we explain fructose intolerance to someone new, they confuse it in their own unique way. People keep telling me that kids grow out of food allergies, and I don't have the energy to explain the difference between food allergies and food intolerances. My next-door neighbor is allergic to all corn products, and since Nolan cannot have high fructose corn syrup, my neighbor thinks Nolan has the same food allergy he does. I can't convince him otherwise. Because Nolan had to avoid wheat (because it contains fructans, which are chains of fructose), many people can't understand that his diet is different from gluten-free diets.
The inability to make people understand fructose intolerance isn't the worst part, even though it's frustrating.
Finding out Nolan is also lactose intolerant was "the straw that broke the camel's back" for Nolan. That was the point at which he just got plain old tired of eliminating foods from his diet. I wasn't as bothered by the lactose intolerance since I already deal with it myself and feel like it's manageable. Adding a second distinct food intolerance isn't the worst part, even though it's extra work.
Nolan's gastroenterologist concluded that Nolan also has IBS. I hate the term IBS. I feel like it's a doctor's way of saying, "I've given up trying to fix your pain." At least that's been my own personal experience. Feeling like Nolan's doctor may be giving up trying to get him feeling all the way better makes me want to pull out my hair and scream in the streets. But it's not the worst part.
We can't easily eat out at a restaurant as a family, and Nolan can no longer eat at church potlucks, birthday parties, or other similar gatherings. We have to send a packed lunch for him any time he won't be eating at home. It's extra work and planning, but it's not the worst part.
I never know if Nolan will make it through the day at school. All the other parents drop their kids off at school and then go on with their day. Some go to work, some go shopping, some clean or accomplish something on their to-do list. They know exactly how much time they have for whatever they're doing. That's not my daily life. God, in His great wisdom, has made it possible for me to not have a job in this season of my life, so I don't have the added pressure of getting out of work when my kids need me. But I do carry my cell phone with me EVERYWHERE I go because I know I could get a call from the school nurse any moment. I never go outside of our little city, even to run errands, because I'd be too far to come get Nolan quickly if he gets sick. I've stopped making clear plans for my day because they just get interrupted and changed.
Today I compiled our grocery list and then convinced Nora that she would actually survive a trip to the grocery store. Just as we pulled into a parking spot at Kroger, my cell phone rang. A glance at my screen told me it was the school calling, and I already knew. Nolan was too nauseated to eat his lunch, and the nurse wanted to know if I wanted to come get him or make him tough it out. That's always the question. The constant, torturous question. I gave up on the idea of getting groceries today and drove back across town to pick up Nolan from school.
The uncertainty isn't the worst part, even though it's constant. Uncertainty about how my day will look. Uncertainty about how hard to push Nolan. Uncertainty about when all of this madness will end and our life will be normal. Uncertainty about what in the world we're even dealing with.
Uncertainty about how in the world I, as a mother, am supposed to help my child.
Which leads me to the worst part.
The worst part is when my boy, my baby, looks up at me with eyes that are both tortured and brave. Those eyes plead with me to make him better or somehow remove his constant battle to keep going when he doesn't feel like he has it in him to do the next thing he's supposed to do. As he tells me that he doesn't feel well, I look into those precious eyes and notice whether they look blue or green or gray today. I gauge his pain level and his discomfort and I weigh the importance of the next task he faces. My insides twist and I wonder what I'm supposed to do. Do I make him go to school or church or practice or whatever? Do I let him stay home? If I let him stay home every time he felt sick, he would literally be home every day and every night. We don't want to shut ourselves in our house forever, so where do I draw the line? How much pain is too much to make Nolan tolerate, and how much is small enough to make him endure it? Who looks at a child and measures his pain like this?
Looking into the eyes of my child and not knowing how in the world to help him is the worst part. And it happens many times a day, every single day. Every. Day.
I feel like a shell of a mom. Like when you open a bag of chips and find out how much of the bag was just filled with air. Or when you open an egg of Silly Putty and find all the Silly Putty is stuck inside one half of the shell while the other half is just empty. On the outside I look like other mothers. To Nolan, I look like someone who knows how to take care of him. But inside I'm all pressed to one side with all this empty space that should be filled with answers.
So I comfort my son, make whatever decision I'm going to make for the moment, and press on until I'm faced with the worst part again. Which is always mere hours away.
This is what our current struggle looks like. I'm not trying to get sympathy; I just want to explain why it's so exhausting. I've already begged God for healing and wrestled with how to trust Him when he chose not to heal Nolan right now. I reaffirm that decision to trust Him every single day. But it's not like I entrusted Nolan's health into God's hands and then the problem faded into the background. It's there when Nolan wakes up, when I drop him off at school with a prayer that he'll make it through a whole day, when I pick him up and get a report of how he felt at school, when we need to take Nora to dance or go to church, when I make dinner, when we eat dinner, when Nolan lays down at night and can't sleep. We spend time and money buying the right foods, cooking the right foods, packing the right foods...and Nolan still has pain and nausea. We get him to bed at a decent time, and he's still wiped out. We try to keep our schedule from getting overloaded, and yet it's still more than he feels up to doing.
We are doing everything we know to do, and our child still isn't well. Maybe that's the worst part.