How a Wheelchair Offers Freedom to My Son Who Has Ehlers-Danlos Syndrome


My son, who has Ehlers-Danlos Syndrome (EDS), owns a wheelchair. He doesn’t always use it, and he doesn’t always need it. He can walk. Sometimes, on good days, he can run and play. He rides a bicycle on cool days when heat isn’t a factor, and when his body allows him to. He slides at the playground. He absolutely loves to swim, which is a great physical activity for him and water alleviates the pressure on his joints. He attends equine therapy. He laughs, jokes and can show quite a mischievous side. But, he does have a wheelchair.

His entire life is a delicate balance, always on the verge of tipping. We are constantly fighting to keep him active and to give him the quality of life he deserves. There are so many EDS symptoms that can exacerbate to the point of him needing to rest. He has musculoskeletal and joint pains that range from sharp to nagging, GI discomfort, weakness, chronic malaise and fatigue, dizziness and tachycardia. On any given day, his smile is hiding a combination of symptoms that affect his entire body. Every single day is a push.

On occasion, he pushes too hard, he becomes ill or his body just says, “Nope.” On those days, a wheelchair is much needed. It is needed to get through the day and to prevent further worsening.

 

The wheelchair can be a focal point for others’ attention and some unwarranted criticisms. Yet, it can also be the difference in one day of rest versus four. He can sit at home and be miserable, or we can pack a wheelchair for him to attend his brother’s baseball game, providing entertainment and social involvement. Or, he can attend a home-school tour of a dairy farm. It can mean getting to view an entire museum before closing time versus leaving early with days of recuperation afterwards. On harder days, it can mean going to the restroom independently versus being carried around the house.

The wheelchair is not only for his benefit. If we go shopping, and his body starts to flare at the back of the store, I cannot physically carry him the remainder of the way. As his full-time caregiver, it also means I get to attend the older sibling’s baseball game (instead of staying at home tending to him), and it means my older child gets to see me in the stands. It even alleviates the worry of finding a courtesy wheelchair to make it around a ginormous hospital for time-sensitive tests or appointments.

We do not need to “throw the wheelchair away” to understand he needs physical activity and to build muscle and stamina. He is active by nature, and he plays whenever he can. It is not a sign of giving in or giving up. It is quite the opposite. Having a wheelchair means he keeps going when otherwise it wouldn’t be possible. Using another method is OK. It means he is listening to his body and doing things he wants to do within the limitations he has. For my son and our family, his use of a mobility aid means having freedom.

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