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.
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.
