My birthday boys, then and now, will be 7 and 9 this week. I’ve been in the worst mood the last two days. At first, I thought it was the more typical mom feeling of being taken for granted and feeling like the last one anyone in the family considers, me included.
I was wrong. It hit me this morning. It’s the fact that my babies are another year older. I’ve not typically struggled with birthdays and holidays with my boys. The celebrations of them being here with me has been such a fun and bright part of the birthday that I didn’t think a lot about the fact that I don’t know how many they will have, or the changes that have occurred in the last 12 months or what they will lose in the next 12 months.
There is no handbook on how to raise a child with a terminal illness, more specifically Duchenne, more specifically three very different boys with Duchenne. I question if I’ve made the right decisions for them. I wonder what the next hard decision will be. I have to accept that I have to trust that I made the right decision with the information I had at the time. And trust that I will make another best decision if that information changes.
This was a hard year full of battles and changes. We are still waiting and fighting for FDA approval of Ataluren, the insurance battle for coverage of another important medicine is still ongoing. At home we installed a chair lift and built a ramp.
We know that soon we need a new vehicle because although I am strong and work hard in the weight room to be able to lift the boys and their scooters into the van, doing so long term is not practical.
When we were first diagnosed we were told the boys would be confined to a wheelchair by the time they turned 9. We found a better doctor and we know because Max that 9 is not the average anymore and that it is 12, 13, 14 and older now before boys stop walking completely.
But, Rowen is going to be 9. There are things that are becoming increasing more hard for my son and he needs growing amounts of help. Bathroom modification is necessary sooner than later. If we are forced to stop using Ataluren in the next year if it doesn’t gain FDA approval, it could be 9 for Rowen.
Last Saturday we couldn’t get a handicapp parking spot and because of snow and frigid temperatures I asked the boys to walk further than usual so I would not have to unload the scooters…there was a door close to us that we could enter and then just walk the hallway to get to the gym on the other end of the school. It was really really hard for him. I’m actually crying now because I felt so bad for not taking his scooter. Seriously, his muscles don’t work like mine and everything is hard for him, but I decided it was too cold to help him by getting his scooter. I feel like scum.
And yeah, I’ve been so damn mad at my husband for leaving me to travel alone with the boys. And I hate that, because they are my children. I hate that sometimes traveling alone overwhelms me. I hate that I’m mad at my husband, he is my partner in all this and really we can’t afford to me mad at each other.
Then last week at church, it was just me and Rowen. He wanted to lift his legs up into the pew. He could not. He had to grab the material of his pants and pull up to get his legs up. It’s those little things I notice that eat at me.
This post really has no lesson to be learned. It is just this. Duchenne is hard. These birthdays are hard for me this year. I do know though, that it would not hurt like this if I didn’t love them so much. To have this love for them, to have them, to be able to celebrate them though….I would take the hurt and stress a million times over…my children are my everything and we will celebrate them this week and always.