I always try to be extremely upbeat here. Keeping it positive and encouraging but life doesn’t always work in the upbeat. I don’t really talk much about my son’s medical issues, it isn’t my story to tell, it’s his. I talk about it when it affects me and yesterday went from an average day to gut wrenching in about 2 hours flat.
We went in for simple 30 minute ear tube surgery and instead were given some rather upsetting news and scheduled for another follow-up surgery next week.
My husband and I just sat in shock listening as the doctor shared the news with us. It was like nothing he had ever seen and we needed to see another specialist since this was out of our own specialists knowledge base.
That’s the thing about having a rare disorder, no one ever really knows. This was surgery #11 in 7 short years and now we are looking at #12 next week.
My gut sort of churns when the nurses recognize us on the pediatric surgery floor. He’s a regular, and he’s always a good sport about what is going to happen.
My husband and I joke that we own our own hall in the hospital and soon we’ll have our own wing. We can pick out first timers in the waiting room and know which hospital elevators lead where. If you’ve ever been to Upstate those yellow elevators are tricky, but that’s how to get to the treehouse.
I suppose we at the very least have a good attitude about it? I’m not sure. We do seem to be private about it. I’ll be honest that even my immediate family doesn’t really know everything that goes on with it. I guess just like anything that’s different at some point it becomes a chore to explain it all.
Even after getting the news at the hospital yesterday, I kicked myself for posting that photo above on facebook before it was over. See these are the things we think about before we go. Usually if we take a photo at all, we don’t post anything until it’s over and all is well. Yesterday I was excited for our first “easy” surgery in and out in less than an hour SCORE! And posted without thinking.
Well I was thinking, but thinking surely everything would go well. This was the first surgery we had requested, as in we made the appointment to say he lost a tube it’s time for new ones.
We never expected bad news. The worst part is when you get bad news trying to explain it to people. Especially when we don’t really have answers.
Then comes the blame how did we not notice? The past few months have been difficult for him. The TV was on volume level 26 most of the time. He hasn’t been listening. I have been yelling.
We assumed it was the tubes. Assumed it was the end of the school year. Assumed it was anything else.
And now we wait. We wait for the next surgery, wait for the specialist. And wait for answers. Waiting is the worst. You try to forget about it and keep things as normal as possible, but nothing is really normal.
If you have healthy children give them an extra hug today and be thankful. If you don’t know you’re not alone, and things will get better.
Thanks for letting me sort out my feelings here today. I promise to resume healthy-living posts tomorrow.