Fight the good fight – 1Timothy 6:12
We’ve entered our third week at Kartini, and I am sitting at the kitchen table exhausted this morning. I feel like it has been so much longer than that. I attempted to write about the battle we’re in like a week ago, but struggled to put all the thoughts in my head down in any kind of organized manner. Now, just a few days later, the battle has only intensified and I still can’t find a way to grasp a coherent thought and put it down on “paper”.
What we are doing is hard. Connor is literally in a fight for his life. That may seem overly dramatic to you but let me make it clear, he is wrestling this disease for control over “his own self” as my kids used to say when they were little. And ARFID does not want to let go. It is a visible fight we witness every day, and it is painful to watch. Now no one in this house is sitting idly by while he does all the fighting. Not by a long shot. Even little sis has donned her battle gear and is in the thick of it willingly to help her brother however she can. Last weekend was Connor’s first at home since starting at the clinic and the first time he’d be eating all of his meals at home. We’d decided on French Toast for breakfast that morning. I sat Connor’s plate down in front of him and he stared at it, then at me. “Are you going to cut it?” I shook my head, he’s 9, he knows how to cut his own food. The rules and what we expect at the table haven’t changed. We refuse to cater to the demands of this disease. He pushed the plate away and folded his arms in front of him. “Well I’m not eating this if you aren’t going to cut it.” Dane and I looked at each other recognizing the beginning of a power struggle. His disordered eating looking for any excuse to not eat. While Eilidh watched us somehow something clicked in her mind, and she realized what was happening. She had figured out that for Connor to eat, which he must do, his food needed to be cut. Boom, problem solved. And she very much wanted him to eat. “I’ll cut it for you Connor!” She piped up. I almost cried. It was such a simple offer, and yet carried so much weight.
And every meal goes pretty much the same way. But the table is not the only battlefield we’re fighting on. ARFID has interrupted our life in such a major way. We’re waging war on all fronts, because our entire life is affected by what is happening to our boy. Trying to keep anything normal is asking a lot. We’re hanging on to any piece we can. Dane just finished his first week back to school. He’s discovered that his work load for this term is ridiculous, and when he’s not at work or in class he’s doing homework. Sometimes he even does homework at work. We rarely see each other, and I miss him so. I, on the other hand just took a leave of absence from work. We’re trying not to think about the affect that will have on our already exhausted finances, but there was just no way around it. I needed to be home for all of them. To try to regain some control over our home and all that just sort of got dumped when we reached for sword and shield.
The weight of our battle is almost too much to bear, and while we know we are better parents, and better spouses when our own cups are full, we just keep pouring out hoping we aren’t at the bottom yet because our kids are reeling. We’re all in survival mode. Heads down, shoulder to the wheel, etc. We feel disconnected, like we’re fighting our battle in an alternate universe or something. Often the fight turns inwards and we start attacking each other. Connor has had to give up so much. There are so many things he just isn’t able to do anymore. Things he can’t eat, places he can’t go. As we move through this whatever it is, we discover more every day just how much we are having to say no to. Birthday parties, friendly gatherings, Bible study, etc. If it is an environment we can’t control, or people who don’t know/understand what our family is going through, it just simply isn’t an option. He, naturally, HATES this. This becomes of the battle of what is fair. In our attempts to keep things normal for everyone, and give Eilidh the break she very badly needs from the heaviness of our situation, we find ourselves battling over what he does and does not get to do. He knows we’re all giving up a lot to help, because we’re a team. But at the end of the day, he’s still away from his friends, his school, special treats, and even activities he loves. And it plain isn’t fair. To be blunt, it sucks. ARFID sucks.
There is yelling, shoving, hitting, food throwing, door slamming, and silence. But there is also, snuggling, hand squeezing, tickling, eating, and “I love you”. Ultimately we’ll keep on keepin’ on. Fighting the good, and oh so important fight.