Do you ever look at social media and realize that most people only post the good things in life? A while back while working at Ochsner with the Nurse Audit team I remember a conversation we had about this exact thing. The next morning I took a picture of myself sitting on my back porch with a cup of coffee and the pool sparkling in the background. I captioned it: “What you don’t see are 2 boys running around screaming in their underwear refusing to get dressed for school. Perception is everything!” This happened almost 5 years ago and it is still true to this day. I want to take this chance to explain how many times it may look wonderful on the outside or on paper but behind the scenes there is so much going on you don’t see.
I do and I know many others do it too, we post the good things in life so we can get the reminder of the “memory” from social media. Seriously, who wants to remember the time you were yelling at your kids for fighting at the aquarium or the time you cried because your best friend did something without you or the time your family didn’t understand the pain and exhaustion of raising a child with not only physical but behavior struggles, or the hours spent making calls for doctor visits, trial appointments, etc. Honestly I know we probably want to forget those times but those are the times that help us appreciate the true joy in life. Those behind the scene times are when we grow and learn more about ourselves.
As I have said many times and I’ll say it again, perception is everything! The next time you see someone just getting by, remember to give them a little grace as they may have had to work really hard behind the scenes to put themselves out there in the world that day. So as I put this out there I just wanted to say in the Rownd household these are just a few of the things that are happening behind the scenes in order to get to where we are.
Behind the scenes: Fighting and yelling, yelling and fighting...There are days the boys are fighting so much and I am yelling at them to stop, which in reality is me fighting with both of them, I’m exhausted. We all end up frustrated and angry but after all the years of doing this I have realized we usually need time away from one another, time away from the video game or just to east some food. But behind the scenes I don’t figure that out as quickly as I should so the tears and frustration fuel the exhaustion.
Behind the scenes I am worried if we are doing the right thing to put Wyatt in trials, and if we are doing everything we can to take care of him the way we need to.
Behind the scenes I am worried if we are doing enough to help find a cure.
Behind the scenes I am helping Wyatt get out of bed and get dressed, pour milk for his cereal, prepare medications for the week, make doctor appointments and plan how to fit all of these in without missing work or school.
Behind the scenes I am planning the travel to get to doctor visits and trial appointments that are so important.
Behind the scenes as soon as I sit down Wyatt calls or texts me to get him something he forgot to get before he sat down in his chair and he is now too tired to get up.
Behind the scenes I worry Wynston is feeling left out and if we are doing enough to help him thrive. Being a special needs sibling is HARD, and lonely at times.
Behind the scenes I see other families who are able to just pick up and go and am jealous that it's so easy for them because behind the scenes I am wondering if it is accessible, safe, or even practical for Wyatt.
Behind the scenes we decline invitations to events because Wyatt can’t do it, so none of us do it. Then behind the scenes I worry about losing friends, decreasing socialization for Wyatt, and Wynston feeling upset because of that decision.
Behind the scenes I worry about my marriage because marriage is hard without a terminal diagnosis, so to keep the love alive after 16 years married and 13 years with DMD is work but totally worth it.
Behind the scenes we all go to counseling to help us live the life of a special needs family.
I know that some of these things happen behind the scenes in "normal families" but the addition of Duchenne makes it overwhelming at times.
I tell you these things not for you to feel sorry for us but to realize that behind the scenes special needs families work very hard to put on a happy face because we know that when others ask 'how are you doing' you really don't want to hear the truth. I believe this is not only true for myself and my family but for many DMD and other special needs families. I don’t want to speak for everyone but what happens behind the scenes is exhausting, lonely, heartbreaking, scary but yet rewarding at the same time. We work so hard behind the scenes to make life as normal and enjoyable as possible because in our world the future comes quicker than what we want and we want to make sure we have more fun and happy memories than the memories of all the fighting and preparing for the next day.
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