It’s a long suffering patience

Hello! Yes, we’re still here. It’s been a hot minute since I updated.

Today is Mother’s Day and also 11 months on the GAPS diet. We celebrated by letting Raleigh eat a fresh apricot we bought from the farmer’s market on Friday. He loved it, of course. But eleven months doesn’t seem real. Every month that passes sort of has this surreal feeling. I remember a year ago very vividly when we were wrestling with the idea of starting GAPS. I was also wresting with the idea of sending Raleigh to his first VBS at our Church and deeply concerned about what even a three hour window would look like for him in someone else’s care, likely a teenager, playing outside in the heat and without me there to slather his face in lotion or re-wet his wraps if they dried out. It was a torturous time and decisions were difficult to make.

I ended up sending him to VBS, and I’m glad I did.

I’m also glad we decided to do GAPS. I’m glad we decided to jump into this thing, and I’m happy to report we’ve almost made it a year! Raleigh will go to VBS again this year, next month in early June, and because his body is so significantly changed by the GAPS diet, I have so many less worries for the time he will have alone during his week. What a blessing. What an answer to prayer. I cry many tears of joy and thankfulness for the healing we’ve seen in these eleven months. God has been so faithful and gracious to us.

In the last two months of being away, we got Raleigh’s Viome results back. They were fascinating and have given us some invaluable insight and new direction into his healing plan. Viome showed us that Raleigh’s microbiome is not in balance, that was not a surprise, and he has average beneficial bacteria compared to everyone they have analyzed. The app lists every strain of microbes residing in his gut, of which he has somewhere between 190-200 strains. I can’t even imagine how many strains a healthy individual has. Many of Raleigh’s strains are associated with lower rates of obesity, production of anti-inflammatory molecules, production of vitamins and lower rates of numerous chronic conditions. Raleigh is a balanced metabolizer and uses energy from food in a balanced way. We weren’t shocked by this, either, considering he is a lean, mean fighting machine of a five year old. There isn’t an ounce of fat on this kid, and he is always hungry.

So based on their findings, they present to us a list of recommendations and a wellness plan that revolves around foods that specifically feed the bacteria in his gut. Eating a variety of foods from the “Indulge and Enjoy” list will help to balance his microbiome and manage inflammation. So for anyone out there new to this idea, the basic premise is this: the food you eat is eaten by the microbes in your gut. So a food that is healthy for you may not be healthy for someone else. You take a food like cucumbers, that most would agree is a healthy food, but if you don’t have the bacteria residing in your gut that flourishes on cucumbers then cucumbers may not be the best food choice for you. This is a completely new area of personalizing healthcare in a way that hasn’t been done before. It’s intriguing and exciting.

So Viome then breaks down a specifically chosen list of foods and places them into four categories: Indulge, Enjoy, Minimize, and Avoid. They also present five superfoods that benefit the microbiome the best. Raleigh’s five superfoods are spinach, broccoli, cauliflower, parsley and blueberries. This was incredibly exciting because it gave us two new foods to work into his diet right away that we had been avoiding; broccoli and spinach. I had “tabled” those two due to their high salicylates and the possibility to cause more itching and eczema. Since they were placed on his superfood list, we decided to give them a try.

Now, armed with a new list of foods and an idea of what microbes were helping keep him alive, we connected with our GAPS practitioner and made a plan to move forward to help his good bacteria flourish and increase. We have added in a prebiotic fiber and butyrate to encourage his good bugs to thrive. We have also begun our slow introduction of new foods starting with what was found on his indulge and enjoy lists.  Thankfully, there are many new things to try, and, so far, he’s seemed to tolerate everything except ghee.

Our GAPS practitioner wanted to test ghee because it is a form of butyrate, and if he could tolerate it, we could work up to a “mucosal butter” recipe that would aid in the healing of the gut. On May 2nd I gave Raleigh 1/4 tsp of ghee at 1:55 pm. He didn’t enjoy the flavor, so I added a little dollop of raw honey on top. He finished it and went off to play. At 2:45 I checked his face and noticed horrible red splotches everywhere.

I asked him if his throat hurt or stomach hurt and neither did. I applied a little calendula cream to his face and walked away. About twenty minutes later, I went back to check on him and was shocked to find his skin had recovered almost 100% from the histamine response the ghee had given him. The second two pictures are taken twenty minutes after I applied the calendula cream to his face.

May 2nd taught us a great deal about how much healing has truly taken place inside his body. Not only can we tell in many ways that healing has happened and continues to happen, but this incident showed us how much more capable his body is of healing itself, not even a year on the GAPS diet. Before GAPS, when he would have any kind of reaction, the itching would overwhelm him. He would attack his face or wrists or wherever he was feeling the itch and benadryl would be an absolute requirement. The fact that his body was able to recover in such a short amount of time without having any other secondary complications and without the need of benadryl is proof positive, in yet another way, that healing is happening. It is always disappointing when we find a food he cannot have, but this incident actually gave me more hope than anything else.

If you’re out there reading this and you have a sick kid, you know the helplessness well. I have felt for so long a helplessness that many don’t understand. But it’s not just helplessness, it’s also fear. Fear that your child is sick beyond what you can handle or can even realize, and that he may be more fragile and susceptible to danger and illness, and there is precious little you can do but cry out to God for His mercy and healing hand. It breaks you. It’s broken me and changed me in a way I wasn’t expecting to be changed. This entire journey has changed me as significantly as it’s changing Raleigh. We believe God can heal if He chooses to heal. But sometimes the healing comes in ways you don’t expect, and it has done exactly that for us. We have come to believe that God didn’t choose to miraculously heal Raleigh because He has a greater plan in this journey. God is healing Raleigh though. He’s just healing him through food and through our determination and perseverance, and He’s giving us a voice so we can be a light and a support for all the other mothers and fathers out there who feel so helpless in their child’s illness.

Raleigh isn’t healed yet, but one day he will be, and his story is going to help other people find healing in their own lives. I believe it to be true, more now than I ever have, and I believe it to be why God has led us down this incredibly difficult and narrow road. There is hope here. There is always hope.

Since getting our Viome results back, Raleigh has successfully eaten sprouted sunflower seeds, sprouted pumpkin seeds, parsley, broccoli, spinach, jicama, tomatoes and saurkraut. I can’t find any emojis, but if I did, I’d put that one in right now with the hands-in-the-air HALLELUJAH. You know which one I mean.

His body is changing constantly. He wakes with a soft and moisturized face. A few days ago, I didn’t even apply lotion to his face until around 10:30 in the morning. The skin on his belly and lower back are softening like his face has. He still has difficulty itching the back of his knees and ankles. These spots still prove to be tough for him, but his thighs and calves, for the most part, are clear of eczema as far as we can see. Right now the main area giving him the most trouble is his upper chest and shoulders. The areas change constantly. They muddle up, get cut up from itching, the cuts heal and skin clears. It’s a consistent ebb and flow, but we look to the promise that change is still happening, and we see healing. We are forging forward. His asthma is pretty nonexistent. We haven’t heard it in months. I am still cooking at least 90% of his food in stock, so he continues to get the healing benefit of the stock because warm, simmered foods are nourishing and healing for the gut.

Here are a few pictures from the last couple of months and a video truly capturing his spirit:

I don’t know where we’ll be in another year. To be honest, looking forward is hard for me, so I don’t do it often. Most days I focus on making it through the next meal, and then I look up and realize we’ve almost done this thing for an entire year. It is a long-suffering patience. It is a refining fire.