It’s been a day. After reflecting on my yesterday, I should have seen it coming.
I cleaned bathrooms yesterday. I hate cleaning bathrooms. But I cleaned them. I even painted the basement bathroom before cleaning it. I literally scrubbed them both so hard that my arms and shoulders were sore this morning.
Later in the evening I sat down to read with one of the kids and our little dog jumped up with us. I started to pet her until I realized she was covered in her own crap. If not her own crap, then the crap of her dog brother. I had to give her a bath in my clean bathtub and then clean it again. That is 3 bathtubs in one day; my least favorite chore ever.
I woke up this morning to a press release that informed us that the FDA had denied approval of Ataluren again. There is still a path forward and boys will still get medicine. All good news. Except after months and months of the process, after waiting for months for the answer…that is what I wanted, an answer!
Now we will wait, I can talk to the drug company or other parents, but it still means we wait longer for an answer. What if the answer is no again? What do I do for my boys at this point? Wait!? It is not what I was expecting despite having an understanding that it could happen. I can’t process it today. It worked out because today was not done with me yet.
Max has been home for 2 days now and today it was confirmed that he has Influenza B. Yuck. He’s going to miss school and play practice. 3 of his 5 siblings are starting Tamiflu with him. I’m washing bedding and have cloroxed the entire house and have the diffuser going.
I have a headache and can’t decide if I’m getting sick, tired, stressed, sore or all of the above. I also forgot to eat lunch until 3:45. Food helps.
Mister Charlie asked me if he was going to die when he was 13 as we pulled into the drive way after school.
(( This is the silence in my heart for the few moments before getting out of the van, walking around to his side and giving him a big hug ))
It hurts as bad as you imagine it does if you are fortunate to have never been asked such a question. I know other Duchenne parents read this blog so I know that some of you know the feeling too.
Another first grader told him that. I want to be mad at that kid, but he’s a first grader and probably overheard something he didn’t understand. I’m really not mad.
It didn’t happen today, but today is when Charlie asked me if it was true.
We had a good talk. I told him we are doing things that have never been done (no thanks to the FDA) and we are changing the outcome. I told him that no one knows how old they will be when they die and neither do we.
Rowen ended it with, “We are Duchenne history makers!” I’m glad he felt like a warrior about it because I mostly felt like a pile of mush about it. Not a conversation you can prepare for.
I’ll have to see about going in and talking with his friends again. Still stings.
So now, I put a hold on all homework doings. We are watching Teen Titans, eating yogurt (Charlie in his underwear) and putting off the real world for an hour. Except me, I am processing or trying to as I write this…it’s the only way I know how to process a day such as this.
There were good things today, I’m sure. I paid preschool tuition on time. It’s the only bill I am responsible to pay and this is quite possibly the first time I’ve paid it on time all school year. So there’s that.
I may not clean the bathrooms again for awhile.