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by Scott T.
My body started giving up on me around 5 years ago and I was officially diagnosed with classical EDS towards the end of 2015. My biggest challenge—and biggest source of strength—throughout my time with EDS has been being a Dad. I was diagnosed with EDS after becoming a parent and since the diagnosis, we have had another child. Parenting is hard enough without throwing a chronic illness into the mix.
I was fortunate to live a relatively normal life until I was in my thirties. I played competitive sports all through my childhood. I went to University and experienced all the excesses that involved. I traveled the world and I had a fulfilling career. I met my wonderful wife, got married, and we had our first kid before everything started going sideways. Before the chronic pain, chronic fatigue, anxiety, depression, and everything else that comes along with EDS. Since then I have really struggled with being a parent. It’s a struggle every day.
I struggled to lift my daughter for the first three months of her life. I would lift her and my shoulders, arms, wrists, and hands would give out. I continued to run myself into the ground when my wife had to return to work sooner than we would have liked and I was left at home with a 4-month-old as she was too young to go into crèche.
The hardest thing about being a parent with EDS is that there is no hiding. When all you want to do is curl up in a dark corner and be alone with your problems, you have little people depending on you.
You can neglect yourself, but you can’t neglect your child. No matter how much pain you’re in, there are still bottles to be prepared and sterilised, and nappies to be changed. My own wellbeing was pushed further down the priority list as my whole day was focused on this beautiful little girl.
I pushed myself harder. It was all I knew. Fortunately, this was only for a couple of months, but that was enough. Towards the end, it was becoming unsafe. My knee gave way as I was coming back down the stairs after putting her down for a nap and I came crashing down the stairs. If this had happened when I was carrying her it could’ve been a lot worse. I still carry the injuries and pain from this period.
Every week I have to peel myself off the floor to take my son to his swimming lessons. I strap myself up with braces and tape and take medications so that I can take him to his physio appointments and overnight trips to Dublin to see specialists because he has also been diagnosed with EDS. I do this all in the hope that he will be better prepared than I was for what may lie ahead of him. I spend countless hours and days exercising, meditating and relaxing to get my body ready to go out for a family outing—only for all the good work I’ve done to be unraveled before my eyes in less than an hour.
As they get older, it’s easier to explain to them that Daddy is sore and can’t lift them up, but when they are small and they come running to you for a big hug with a beaming smile, you can’t say no—nor would I want to. I am very aware that their childhood is fleeting and if I’m not careful it will pass me by in the blink of an eye. As such, I am embracing the fact that my son still thinks I’m cool because I can kick the ball high in the sky because it won’t be long until he can kick it higher than me!
As hard as these past four years have been, they have also been a tremendous learning experience for me. I have learned to soften. To be kinder and more compassionate to myself. While there is still a lot more work to be done and I can still be very stubborn, I am learning to ask for help, and learning my limitations. When your energy is limited, it really forces you to make decisions about where you’re going to expend that energy.
Every day I wake up and I try my best. It never ever feels enough. It always falls short of the ideal I had in my head of the type of Dad I would be and the things we would do—many of which are now highly unlikely.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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