My losing season

I wanted to be a writer when I was younger. I was even planning to go and get my MFA in creative writing after I graduated college but met and married my wonderful husband instead. I love words and stories and being lost in a land I’ve never seen before. I’m a bit of a book snob and perhaps have lost a few friends in the past around the time Harry Potter and Twilight were being devoured because, well, it’s simply not literature, and it made my insides feel like they were dying. If you stop reading here, I’d understand.

I love great literature, which I don’t think is a shock if you know me or have been following this blog, but one of my absolute favorite authors is Pat Conroy. He isn’t considered great literature, though I think he will be one day, but he’s always been special to me. Years ago, I wrote to him a short email about my own aspirations not expecting to receive any reply, but, to my surprise, got one in return. I framed the email and still have it today. I’ve read nearly everything he’s written, and when he died last year, I cried. It felt as if I had lost a family member. Conroy’s stories found me during my youth, helped me escape during my own lost years, and stayed with me. We had a connection even though we never met. His stories are dark with glimpses of light and remarkable characters that inevitably shaped his own. He wrote imperfection well and dysfunction even better, and I grew up in a great many ways between the covers of his books.

One of Conroy’s novels is titled My Losing Season. I think he must have felt a great deal of his life was lost to many difficult events and people, things that left an indelible mark on his life and shaped him in significant ways. Most days, this season in my life feels like it’s my losing season, too. In fact, a lot of people see it that way, even though I know we aren’t losing, and it isn’t a losing season, yet there are days where we feel completely defeated by all of this. I’m coming off a long night with Raleigh. We still have long, itching nights, but, truly, the mornings are the most difficult. I like to call Raleigh The Tempest because, when he wakes, he is a veritable storm of emotions. He is unhappy, itchy, hungry, upset and, truthfully, you’d feel the same if you woke up the way he does everyday. It’s just tough, and it’s a Groundhog day every morning for us.

Currently, we are between the fourth and fifth month of the Intro GAPS diet. We are, however, in Stage 5 now. Stage 5 began with cooked apples in the form of applesauce. This was the first fruit he had since being on the GAPS diet. Raleigh had about a half cup of cooked and pureed apples mixed with a lot of coconut oil for fat for six days. On the fifth day he complained of stomach pain within an hour of having the apples and did the same thing on day six. When introducing new foods, we watch for stomach pain and/or bowel movement changes. Those two things let us know if the food is being accepted well by his body or not. After two days of stomach pain we felt was directly connected to the apples, we had to pull them. It was disappointing, but even Raleigh didn’t fight it because he knew the apples were causing him pain.

The next food we introduced was romaine lettuce in the form of a “salad.” I added a couple of drops of olive oil, some salt and a little lemon juice, and he was beyond thrilled to be able to eat salad with us. After seven days of lettuce, we tried some peeled cucumber. Within three days we felt like his body was responding negatively and we pulled back from everything; not sure if it was the lettuce just building in his system or the cucumber.

It has been a few days now of removing all Stage 5 foods from his diet, essentially taking a step back into Stage 4. Now, there isn’t a thing wrong with taking a step back to re-group and rest. It is difficult because there are so few things he can eat, and we cycle through them day after day, week after week. Imagine only eating a handful of different kinds of meats cooked a handful of different ways, paired with a small variety of vegetables, day after day. You’d be exhausted and frustrated and might even give up. Some mornings Raleigh looks at his plate for breakfast and has a momentary melt-down complaining his food doesn’t look good and he just won’t eat it. There are so many things I could say, so many examples and instances and situations that I’ve experienced being the at-home parent with him every day of the week, but, to be honest, some of it I just can’t bring myself to type. Some of it I struggle to process, and a good deal of it makes me cry at random times throughout the day. It feels like losing day in and day out. It isn’t easy to stay the course.

Raleigh’s skin is so telling. His upper back, upper arms, and part of his chest have large white spots of “typical” skin. But lately those spots have appeared to change slightly and we aren’t sure why. It could be moving too fast through stages. It could be as simple as needing more time in the Intro diet. Every day I look at his skin I am reminded of just how sick he was, and still is, but I can also see how far we’ve come in such a short amount of time.  The difficult thing here is we just don’t know what to make of skin changes. Is it food related? Is it emotion? Is it stress? Is this normal? So many questions and very few answers.

It’s difficult to know how to paint an accurate picture for you. I know in my gut what we are doing for Raleigh is right. We are giving him a gift for the rest of his life. Time, however, has never moved so slowly. Next month will be our fifth month on the Intro GAPS diet and to think we are close to half of a year is mind boggling. I want to fast forward. I want to give him a burrito when we ask what he wants to eat and that’s how he answers. I want to jump through time and see us next year when we’ve been at this over a year. I want a little extra hope and certainty even though I feel so certain we’re on the right track. I want the big change to happen now to save him from all he is feeling and perhaps from all i am feeling too. I don’t want to feel like I’m in my losing season anymore.

Here are two shots of his back as it typically looks. There is a large portion that does remain white and moisturized even though it develops tiny pimple-like bumps from time to time. We’re not sure what those are and if they are a reaction to new foods or just simply a part of the eczema healing-process. I also added in this shot of him cheezin’ with some trophies and a gold medal. Despite Raleigh’s pain and this challenging journey, he is happy. He has intense emotions, and, in the morning, nine days of ten, he is The Tempest, but, overall, he is happy and for that, I’m thankful.

August 2017 – very red neck area and lower back

This is a miserable season we are in, but God is faithful. He continues to give us glimpses of hope into the future. We are not anywhere near being out of the thick of it; we are very firmly planted in the wilderness of this losing season. One day that will change.

There is so much emotion in a young child without any kind of physical pain or special need, and it is easy to get swept up into all of the emotion that our situation manifests. I’m an emotional person anyway, so to be able to set some of it aside and forge forward is a challenge, but a skill I’ve been having to hone out of necessity just to survive the day. I’ve spent a lot of time blaming myself for Raleigh’s condition. It’s difficult not to and some days that feeling is crippling. If only I knew then what I know now. But that wasn’t part of God’s plan. This was. All of this. Every bit of it was meant to change me, help me grow, teach me things about God’s goodness and grace. Raleigh’s life is meant for good, and I believe his story is going to change lives. It has already changed mine for the better and that is not a loss.