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.
This struck a cord with me and I just wanted to add my thoughts too. Lately there feels like there is a loud clicking clock in the background of everything we do. Before that day 5 years ago we used to say things like someday we will go here or someday we will do this. Now it sometimes feels like if we don't now then we never will. I had dreamed of someday taking the kids to see Old Faithful, Mount Rushmore, the Grand Canyon, Hawaii, Alaska, the giant red woods, someday we would do those things spread out across the 18 years we have as the parents of our kids. Now we realize those things may never happen. When we bought the van we had to ask ourselves is a 5 year loan too long, the people that modify vans for handicap needs won't touch it once it has a certain number of miles, will we need a new van before this one is paid for? How about a house, a 30 year mortgage is a long time and can we sell the house in 2 years if the doorways and hallways too tight for a wheelchair, what if the housing market takes a little dip? Someone said that when your kid is diagnosed with Duchenne you can't think past 5 years in the future, but in reality it is even smaller than that. Most kids are diagnosed around 5 just like Robbie, and most kids are wheelchair confined by 10-13. We have just finished the first 5 years, in the next 5 years almost guaranteed that before they are done Robbie will with almost certainty be in a wheelchair full time. Every decision we make going forward has to include the idea that in any year from 2017-2021 our life and experience can and will change. 2017 is the beginning, Robbie gets his Make-a-Wish and we can cross going to Hawaii off the list. But it is bitter sweet, no one wants to take a Make-a-Wish trip and it, means we are getting to the point where we have to realize all of those other someday experiences are never going to happen. In 2017 we plan to move to a new house that is designed without hallways and with every door that is large enough to accommodate a wheelchair, it is a far cry from the 2 story craftsman we always dreamed of but it is what will accommodate us. In 2017 we will be halfway done paying off our van so if we need to get rid of it and by a wheelchair van we probably can (why are used late model wheelchair vans $45k *sigh*). In 2017 we will start the process of getting Robbie fitted for a scooter, because he is reaching the point where walking from one end of the school to the other is exhausting him. The end of 2016 Robbie fell and hurt his leg, and we freaked out because the number of 10 year+ boys with Duchenne that fell broke a leg and then never walked again because the legs never recover from the muscle atrophy of being in the cast is jaw dropping. Starting in 2017 we have to be prepared that tripping over an uneven sidewalk could be the last steps he ever takes. I am not ready for 2017 because there was so much more I wanted to do as a family, memories I wanted to build for Robbie, his sisters, and us. We make certain that we take a vacation EVERY year because we don't have the luxury of time, because eventually the logistics of moving long distances and medicals needs once we get there, will mean we just can't, I am sad that time may be coming to n end in the next 5 years because there was so many more sights to see, laughs to have, and memories to make.
ReplyDeleteIt's so ridicously unfair that I don't have words to make you feel better. To make anything easier for us. I love you so much and I am so eternally grateful that you are holding my hand. That you understand everything I'm feeling and continue to encourage me to share my feelings. 5 years went so fast its startling and terrifying. I don't know if it's the 5 year mark, or his fall, or the general lack of anything working how we want it to, but this has been particulary rough couple of months. I love you.
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