Marrying my husband was the best decision I ever made
How a couple works together to care for their son with Sanfilippo syndrome
Dear Husband,
I love you. I appreciate you. You don’t have to go out of town the week before Father’s Day to prove how essential you are.
With love (and sarcasm),
Your wife
You often hear about the bravery and courage of special needs moms, but there are a lot of special needs dads out there who deserve recognition, too. My husband, Tim, is one of them.
Tim and our daughter went out of town last week for a quick trip to visit family. Due to our son Will’s therapy schedule and his general need for routine (which we’ve finally started to settle into with summer break), we elected for him and me to stay home. I was excited for some one-on-one time with my favorite newly minted teenager, but I have to admit I was also feeling a bit apprehensive.
For most of Will’s young life, I was primarily responsible for the intensive daily care he required because of his Sanfilippo syndrome. I became a full-time, stay-at-home parent to facilitate his medical appointments and clinical trial travel and participation.
Every other week for two years, I flew from Texas to Minnesota with a hyperactive, impulsive child who had no sense of safety or danger. If you’ve never traveled with a Sanfilippo child in their hyperactive stage, it’s hard to explain what those trips were like. Besides the obvious difficulties of him being poked and prodded at the hospital, I could never let Will out of my sight. Ever. There was no break on those trips. They were exhausting and a complete circus, but I was a pro by the end. I was confident in my ability to take care of my son. It was my job.
As Will has aged, however, his care has shifted. His continued growth has also necessitated more help from Tim. I’m in decent physical shape, but Tim is taller and stronger than me. Gradually, I had to turn more and more care over to him, in addition to our usual breakdown of chores.
Tim makes the coffee. He takes out the trash and walks the dog. He empties the dishwasher in the morning, makes the menu for the week, and orders and picks up groceries. He also does a fair amount of the cooking while I contend with the kids’ pickup and drop-off schedules for their various therapies and activities. He irons and makes school lunches. He wrangles 115 pounds of Will into the shower. He shaves Will and holds him still during haircuts. He’s normally the one who gets up with Will in the middle of the night because he can physically get Will out of bed and change him the quickest, which raises the chances of our son going back to sleep.
He’s also the one who listens to me, helps me talk through things, comforts me, and keeps me on track. He’s the one who makes sure I go to bed at a decent hour each night.
In short, I knew I’d be lost without him for three days.
Thankfully, Will and I ended up having a great three days together. I decided to focus on the activities I could safely do with him on my own. I was also able to schedule some help to come by so that I’d have some support.
We spent our days taking walks, singing songs, and reading books. We managed a Target trip (thanks to our local Target for always having Caroline’s Carts at the ready!) and even went to the neighborhood pool. It’s a far cry from the level of activity I used to be able to do with him, but we still had fun.
However, it also reaffirmed to me how fortunate I am to have an equal partner in this parenting gig and how essential he is to my life.
I hope I show Tim each day how much I appreciate him, but how do you show someone that they’re the reason your world even works? Marrying him, without a doubt, was the best decision I ever made. With some survey results reporting that the divorce rate in families with children with disabilities is as high as 87%, I hope Tim realizes I’m never letting him go. He’s everything I hoped for as a partner and everything I dreamed as a father to our children.
And I mean, who else would put up with this circus but the other ringmaster?
Will and his father, Tim, share a moment and a smile. (Courtesy of Valerie Tharp Byers)
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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