I wish had the skill to put to words what diagnosis does to a family's life. I have tried many times but it is so hard to explain. I guess it's like the bottom drops out. Nothing is ever the same. I changed, we all did. You know in like war movies or I guess in a war when you see a bomb drop. It's always just the bomb drops then it cuts away after a few minutes. We never see what happens afterward. The devastation, the fear, the grief, the hard work of getting through day after day, when one moment has changed everything. We never want to see the rebuild. We don't always like the way things are rebuilt.
There were parts of Shelby, the kids, and I that were destroyed by the diagnosis and there were and are parts of us rebuilt or being rebuilt that are more strong and more beautiful because we have survived. Survival has come at a price though. It's really hard to communicate those things. Like how much I love seeing Robbie zipping around in his chair but that the existence of the chair in our life breaks my heart. That I once said to Shelby " We should bury him with that." and then hated myself for weeks after. That my 15-year-old is really concerned she may be a carrier and has to consider things 15-year-olds shouldn't have to consider. That my 9-year-old is constantly checking surfaces to make sure they are safe for her brother so he doesn't fall again. That Shelby had to decide to stop trying to further his career because we are in a good situation right now, insurance wise, and we can't risk rocking the boat.
I always fear sounding too positive or too negative. Sometimes I think that is the hardest part for me. We have to advocate for him. That means saying things that aren't always positive. That means standing up for what protects him even if we have to stand alone. I, no, we were so angry after the 2016 election. It's hard to put into words what it was like for us. Honestly, I don't really want to upset anyone but everything that happened. It hurt. It was like a sucker punch to the gut. Here was this party that wanted to take things from my child that he needed to survive and this country I'm supposed to love gave them the power to do that. It wasn't just an election to us, it was a battle for our child's survival.
I am not being dramatic just honest. We all like the world to be simple. We like to draw lines in the sand and label this thing bad and that thing good. We don't like to be challenged. We want the people around us to see what we see. To hear what we are hearing. We want the people that we love to be who they have always been. Life just never works that way.
I always fear sounding too positive or too negative. Sometimes I think that is the hardest part for me. We have to advocate for him. That means saying things that aren't always positive. That means standing up for what protects him even if we have to stand alone. I, no, we were so angry after the 2016 election. It's hard to put into words what it was like for us. Honestly, I don't really want to upset anyone but everything that happened. It hurt. It was like a sucker punch to the gut. Here was this party that wanted to take things from my child that he needed to survive and this country I'm supposed to love gave them the power to do that. It wasn't just an election to us, it was a battle for our child's survival.
I am not being dramatic just honest. We all like the world to be simple. We like to draw lines in the sand and label this thing bad and that thing good. We don't like to be challenged. We want the people around us to see what we see. To hear what we are hearing. We want the people that we love to be who they have always been. Life just never works that way.
Shelby, Robbie, Kelsey, Madi, and I do not have a normal life. We are different. Sometimes it makes us feel very square peg round hole. Often it just makes us feel like we don't belong. We aren't exceptionally happy but we aren't in mourning either. We do live with this constant fear and it's not the same for each of us either. We all go through different waves of emotions at different times but we get through it every day somehow and do it again the next day. Often silently struggling.
You're whining when you share your feelings. You're irresponsible if you ever share the times your mind wanders to the what ifs. You're jealous when you cry because things like dream houses, dream cars, dream everything are out of your reach and you miss dreaming about them. Okay, that is jealousy but it's not greed. You are dramatic. You could do more. Your tired and lazy when you can't sleep because the enormity and weight of the future hit you like a ton of bricks when the lights went out. You need therapy if you let the sunny facade slip. You have to be okay because this was just the card you were dealt make some damn lemonade or some BS from people that have no clue because they don't have to and they don't want to hear about it.
All I really wanted to say is that we are imperfectly going through one of the most devastatingly brutal and fatal genetic illnesses with all the grace and humility we can muster. We might seem fine or we might seem angry and awkward but at the end of the day, the five us are doing the best that we can.
You're whining when you share your feelings. You're irresponsible if you ever share the times your mind wanders to the what ifs. You're jealous when you cry because things like dream houses, dream cars, dream everything are out of your reach and you miss dreaming about them. Okay, that is jealousy but it's not greed. You are dramatic. You could do more. Your tired and lazy when you can't sleep because the enormity and weight of the future hit you like a ton of bricks when the lights went out. You need therapy if you let the sunny facade slip. You have to be okay because this was just the card you were dealt make some damn lemonade or some BS from people that have no clue because they don't have to and they don't want to hear about it.
All I really wanted to say is that we are imperfectly going through one of the most devastatingly brutal and fatal genetic illnesses with all the grace and humility we can muster. We might seem fine or we might seem angry and awkward but at the end of the day, the five us are doing the best that we can.
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