Kristen Sachs became a caregiver to her husband, a ventilator-dependent quadriplegic in 2013 and the couple are raising their daughter, Evie. In addition to adjusting to life with paralysis, Kristen has also been observing the relationship between her husband and her daughter.
“…there’s one experience in growing up that I just can’t share with Evie. Something I didn’t have, and so I oftentimes don’t know how to guide her or advise her or the subject: A dad in a wheelchair. A dad who has no movement or sensation below the tops of his shoulders.”
Kristen has watched their relationship grow, but it’s not without anxiety. It can be stressful and frustrating for her and her husband to understand the impact of his paralysis on their daughter and on his ability to be a father.
New ways to have fun
Have you wondered what games you or your spouse could play with young children when facing paralysis? Jeff and Evie devised a game where Jeff zigzags around the floor while Evie tries to successfully hit his wheels with a ball. “They both roar with laughter at this silly little game,” Kristen shares. Jeff also plays dolls and plays board games with his daughter, even if she’s the one moving all the necessary pieces.
“[Evie] remembers times before – when Jeff was able bodied. But as she gets older, those memories will likely fade (they already have begun doing so).”
A special father-daughter bond
Although Evie might not have the same memories Kristen shared with her father, she is constantly comforted as she watches Evie and Jeff’s own special relationship. Evie has already figured out how she’ll have her father wheel her down the aisle one day, and came up with the ideas with such ease and without sadness, that Kristen writes, “Sometimes I have to remember to see Jeff’s disability through her eyes.” She realized, “To her, it’s not about finding a solution. It’s not about settling for an alternative. Because there’s nothing to solve. There’s no sub-par scenario to settle for. To her, it’s simply a matter of voicing and recognizing the way it will be.”
Kristen and Jeff still have tough days managing paralysis in their lives, but they ultimately accept what they can’t change while embracing beautiful interactions everyday and enjoying every moment with their beautiful daughter.
“Jeff and Evie share a certain kind of confidence where they can just let things roll off their backs. I think that kind of confidence will serve them both well in the coming years.”
Being a parent is tough, whether you’re a ventilator-dependent quadriplegic or a walking, but as you can see from Jeff and Evie, nothing has to stop you from embracing your role. Read her original blog for more details and insights on their family’s situation.