A punch in the gut...

Last night was an unexpected rough one. I have been the mom of a chronically ill child for 6 years now, and I still get that unexpected punch in the gut when I'm least expecting it. At this point, I'm prepared for the big disappointments...the failed food trial, bad lab results from a scope, or having to miss a big event due to  a flare. I'm prepared for those...expecting them. It's the little disappointments that can still surprise me when I'm least expecting them. 

Yesterday was a great day for Gavin. It was a Friday, so no homework. He won his game at chess club and was so proud of himself. He was invited to a friend's house to play after school and had so much fun he was sweaty and tired when I picked him up. Unfortunately, the minute he walked in the door from his pack meeting, I could see the disappointment all over his face. His shoulders were slumped, and all he could say without crying was "Mom, I'm sad. They had cake." I didn't have any idea there would be cake at the meeting, so I didn't know to send a safe alternative. He denied me a hug because he was already barely holding back the tears. We went upstairs, got ready for bed, and climbed in for some snuggles. He couldn't get comfortable because his stomach was hurting, and I knew he was still thinking about the cake, because the last thing he said to me was "can I have a treat tomorrow?", which of course broke my heart even more.

Growing up is full of necessary disappointments that are a part of life. I just wish my boy didn't have to experience all of the extra food-based disappointments on top of the rest. I don't know why, but last night it was just more heartbreaking than usual for me. It's not fair. I want to fix it for him. I want to make it better. 

As I cried myself to sleep, I thought about an article I read lately in one of my support groups on FaceBook. It was about the 'chronic sorrow' that a parent of a child with a disability experiences, and it was spot on. 

http://susanellisonbusch.com/chronic-sorrow-in-parenting-a-child-with-a-disability/

One thing I loved about the article was the way it ended on a positive note. My favorite line:

Some of the most compassionate people I have encountered in my life are people who have suffered.

I already see that to be true in my 10 year old son, and it gives me a proud happiness that combats the sorrow most of the time. This morning both of my children woke up about the same time and crawled in bed with me. There were lots of squeezes and giggles, it was the beginning of a new day, and my heart wasn't hurting so much anymore. A FB friend posted this quote today, which is a perfect reflection of my night and morning:

There was never a night or a problem that could defeat sunrise or hope.

Today is a new day and I do have hope. I watched my son play soccer and enjoy being 10. I will keep praying that a cure will be found in his lifetime, and in the meantime, I will love him and remind myself of the promise of a new day. To my friends who also have children struggling....my best friend whose son can't eat a single food for the next 3 months, my longest EoE mom friend who is far from home trying to find answers for her son, and all the others who are constantly supporting each other online even though we've never met in person...hang in there!! Today is a new and better day already, and at least we have each other. 

The letter I wrote to Gavin's new 5th grade teacher:

This letter serves as an overview of Gavin’s medical condition so you know what life is like for him, and understand how you can be his advocate.

What is Gavin’s condition?

Gavin has an Eosinophilic Gastrointestinal Disorder, or EGID. The type of EGID he has is Eosinophilic Esophagitis, also called EoE. 

What is EoE?

EoE is an inflammatory disease where the immune system mistakes certain foods as parasites and attacks them inside the esophagus by sending white blood cells called eosinophils. This results in inflammation and the destruction of healthy tissue. 

How does EoE affect Gavin?

Gavin’s EoE is currently triggered by dairy and soy, so he avoids these foods. They are not typical food allergies, meaning there is no immediate reaction if he eats them, so he does not require an Epi pen, and there is not a concern about an immediate allergic reaction. Avoiding these foods keeps the inflammation down, prevents long term damage, and minimizes his symptoms.

What are Gavin’s main symptoms?

EoE is a painful disease. Gavin suffers daily from stomach aches, reflux, constipation, headaches, leg pain, and fatigue. We are doing all we can to prevent these symptoms, but pain just seems to be part of the disease.  Fortunately, school seems to keep him distracted enough most of the time. We will be seeing a neurologist soon to see if Gavin’s headaches are migraines, and we are trying daily medication as a preventive measure, but have not found one that works well yet. I will be sending Tums and Tylenol to the nurse in case he is having difficulties.

How is Gavin’s EoE managed?

Gavin’s care is managed by a pediatric GI (Gastrointestinal) specialist. The only way to check the status of his disease is by a procedure called an endoscopy (we call it a ‘scope’), where they put him to sleep and go into his esophagus to take pictures and samples to biopsy. When the biopsies are viewed under a microscope, the eosinophils are counted, and this tells us how active his disease is.

What does the future hold?

There is currently no cure or FDA approved treatment for EoE, BUT lots of research is being done to find better treatment options and less invasive methods to check the status of the disease.

Thank you so much for taking the time to read this.  I hope you enjoy your time with Gavin. He has an incredibly gifted mind, a unique and hilarious sense of humor, a contagious laugh, a kind soul, and a passion for life. I honestly believe that God knew the challenges he would face, and gave him these wonderful traits on purpose. He may fall into the category of a ‘special needs child’ but I simply see him as special, and I hope he brings as much joy to your life as he does to mine.

For more information

www.apfed.org

 www.curedfoundation.org