I am introverted which is honestly the worst thing you can be when your child is battling something like Duchenne. I used to have all these notions about the person I would be if one of my kids were sick but those were the miscalculations of a woman with healthy kids. The truth is it's so staggeringly painful that I struggle to put words to it.
To most observers Robbie seems fine and we seem happy and I guess in some ways that's true but in others it's not. Every day Shelby and I are watching him slowly lose abilities we watched him struggle to gain. Maybe to other people it's not dramatic but to us it feels like we are slowly, painfully watching him go. He is dying. There has never been a person to beat Duchenne, it has always won the war.
We feel alone, all the time, even when surrounded by the people that love us. Most people don't understand and I never want them to but it's lonely and isolating. We don't ever have the luxury of denial. We don't get to pretend everything is okay. We have to figure out accessible housing and a van. We have to buy a house with a ramp and 36-inch doorways because someday Robbie will be confined to a wheelchair. There isn't a chance he won't. There is no beating the odds, I'm not sure zero percent survival is even considered odds.
People tell us all the time that we make it look easy which I'm never sure if that's a compliment? I mean it is not easy. We don't have to together. The last 5 years have been survival for us. We are in debt because it's really hard to keep your shit together when your whole life becomes about this illness. I keep gaining and losing the same 20 pounds of the 50 I gained when he was diagnosed. I try so hard to be healthy but I keep going back to food. Food is a comfort and there is so very little to take comfort in anymore.
I told my husband last night that I sometimes feel like I'm not allowed to say this is freaking expensive. Like because we have pretty decent insurance I can't say we are struggling financially. I can't say I don't know how we will get into this house we need 4000.00 for, or that once that happens i don't know how we will get a ramp. I can say we should have got our shit together a while ago but our life became about trying to emotionally survive. I can't justify every penny we spent on vacations and eating out, and movies. I mean I can say we have to get in as much as possible because we have limited time but that is hard for people to understand, i think.
December is not a great month for me. I feel like every December picks the scab and makes it hurt all over again. I have nightmares where I relive those weeks over and over again. I can hear the doctor, my mom's sob when I called her after the first visit, when my aunt called me and I just couldn't speak, and the silence when I told my brother. Shelby and I collapsing into each together when the doctors left the room. Taking the kids to see Santa. That last one I still do not understand what I was thinking. Like I would want a picture to commemorate that day.
Anyways, those weeks play like a loop in my head. November 8th, when we realized what the doctors were testing for. Honestly, that was a dick move not telling us. Thanksgiving terrified but trying to hide it from everyone. The Christmas parade in Winder what we deemed to be possibly our last weekend as a normal family. December 8th, going to the neurologist and realizing he thought Robbie had Duchenne but he didn't have the lab results. December 13th when they requested we come to the neurologist and bring another adult to sit with our kids. December 14th, my mom got there and the 3 of us stayed up talking trying to pretend we weren't going to hear Duchenne the next day. December 15th, the words, the feelings, all of it, I can still word for word describe most of the day. I'll never be able to forget that pain. It will always be a part of me.
So I don't even know where I was going with this. If I have seemed cold or distant to everyone lately I'm sorry, this time of year is really hard for me. I often wish i could hibernate after Robbie's birthday until January.
