It’s the world of ever present change. Nothing ever seems to stay the same in any aspect of life anymore. We live in a fast paced world with social media dictating our thoughts and emotions. Most of us want more and more, and can’t stop ourselves from comparing ourselves to whatever is going on around us. Oddly, this part of life has been easier for me to manage than the constant change I deal with at home managing my son’s multitude of diagnosis and disease. Nothing ever seems to stay the same with his needs, and I am sure this is not uncommon in parenting, but this is different. This is medical equipment that changes, medications that change, therapy that changes, health conditions that deteriorate, and my inability to properly manage that change.
This isn’t like normal parenting. Most parents don’t have to worry about their children missing a dose of medication. Most parents don’t have to navigate a health care system that isn’t set up for children with medical needs. Most parents don’t have to fight for every little thing because the world isn’t built for children with special needs. I left a full time job to manage his care, and I have taken on a full time job that is never ending. The mountains of paperwork to manage his care is daunting. Insurance forms, school forms, therapy forms, forms for payroll companies, appeal forms for services needed but denied by insurance, medical forms for doctors, and county forms that are never ending and still haven’t entered the year 2016. Some how in the world of the digital age – none of the forms that are needed seem to be available electronically. I’m pretty convinced that parents of children with special needs are single handedly keeping the post office open.
Every time I seem to get comfortable in the situation we are facing, something within his health changes. Most recently it was the need to intervene and place a feeding tube. We had gotten use to our routine of feeding him, and then we had to learn a new system to get him nutrition. We added more equipment to our home. IV poles, pumps, formula, gravity bags, pump bags, syringes, tubing, and farrell bags. I knew nothing about any of these before this change, and was given little direction about what to do with these items. I’ve had to learn most of it on my own or through online support groups. Doctors and hospitals do the procedures, send us home and most often we are thrown in to a pack of wolves. Then the next few months of that change I am holed up at home navigating it and making sure that my son isn’t in pain or that whatever we are facing we can get through the day.
The hardest part of all of it is that every time something changes all of the relationships I have start to suffer. There have been a few times in this journey I was able to stop long enough and enjoy adulthood. I was able to have friends again. As soon as I get comfortable in a new normal – it changes – and all of my relationships suffer. I am no longer fun loving. I can’t commit to doing anything for more than a few hours, and we often have to cancel plans due to his health being very unpredictable. We spend a lot of time indoors, and not socializing because he does best in his own environment where all of his needs are met. Going out is so hard when you have a small cargo of medical equipment and medication to just leave the house. It’s hard to get people to come to us all the time. We constantly feel like we are one sided in our friendships with people. We can’t give as much as we want, and it makes things really hard. Often it makes us just push people away. It makes no sense. But you can’t disappoint people when there is no one to let down.
The isolation of change is the hardest and most debilitating part of this entire process. There is no one else in our world going through what we are going through. We don’t know anyone else with my son’s diagnosis because it’s so rare. It’s difficult for us to relate to parents with healthy children because we aren’t living that life. When life is constantly throwing us curve balls, it’s hard for us to be upbeat and easy going. Our tempers are short and sometimes our PTSD and anger get the best of us. I don’t know a single parent in this community that doesn’t suffer from PTSD and anxiety. Both of these make relationships with others outside the community really difficult. I know it’s made people shy from me. I know my words and temper have hurt friendships. I know I have pushed people away. I know the constant change and uncertainty has created a world of isolation.
My only hope is that over time the constant change slows down. Or that my ability to manage it will improve. I hope that I find resources to help me deal with the isolation and frustration I feel on a daily basis. It’s a sad reality for many of us in this community that in a room of a dozen people, we could still feel so alone. I keep on pushing, and I don’t fight the change anymore. We don’t have any other choice but to put one foot in front of another. Even though it’s a difficult road, we have to keep moving. Despite our loneliness there is no other place we would rather be. We are parents of children with special needs, and it’s the most important job we have.