Additional Needs

It Must Be Nice

Posted by Jodi Shenal on 19th March 2024 Additional Needs

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One task that comes with being the parent of a child with complex medical needs and disabilities is making countless, redundant phone calls. We spend A LOT of time scheduling appointments over the phone, being placed on hold for ludicrous amounts of time, disputing insurance claims, and tirelessly advocating for services and supports that our children need. On one of these recent, never-ending phone calls, the representative made small talk with me while she waited for her computer screen to load. To fill the awkward silence, she asked “What do you do for a living?” When I answered, “I’m a stay-at-home mom”, her short response caught me off guard.

“Hmph, it must be nice.”

I couldn’t see the representative’s expression, but I could clearly imagine it as a smirk. Maybe it was even accompanied by a sarcastic eye roll. In response, after I paused briefly to process her comment, I replied, “Yeah, it’s really hard work, but it IS nice.”

After we wrapped up the conversation and my claim had finally been resolved, I still found myself stuck on the remark about my occupation. Thinking of how she probably viewed my day-to-day life, (likely picturing me eating bon-bons in my pajamas), it made me realize that despite all the “hard”, it truly is the very best job I could ever ask for.

My back aches from lifting and transferring, but I get the sweetest kisses from my precious 13-year-old daughter.

My world is filled with loving cuddles, bedtime stories and holding hands as I sing her favorite song, “Row, Row, Row your Boat.”

My weeks are packed with therapies, medical appointments, medication management and many miles traveled. They are also overflowing with magic, and the privilege of having a front row seat to all the progress that she’s making.

I am on standby every day in case she’s sick or doesn’t get adequate sleep. On school days, I stick close to home in case I need to get to her school quickly in the event of a medical emergency. It gives me peace of mind that I never have to stress over missing excessive time from work. No boss would tolerate the absences I’d quickly rack up.

My clothes and shoes are worn, less than brand new. Ever since I stopped working, I always feel a little twinge of guilt when I spend money on myself. My husband is completely supportive, hard-working, and always points out that my needs matter too. He sacrifices and gives his all to his family. We’re a team and we remind each other that neither of us can pour from an empty cup.

I’m perpetually tired and usually rely on ridiculous amounts of coffee.

But with cup in hand, I’m lucky to have the ability to see my 19-year-old son gaining independence. I’ve had the gift of proudly sitting ringside as he finished high school virtually, now successfully taking online college courses.

ALL parents, no matter their career or occupational status, have an extremely tough job. As I reflect on what my work entails, I am so very thankful. The long days and sleepless nights are worth it all. Despite the many struggles we’ve faced, the time I’m afforded to be with my children is priceless. This life may not be understood by those outside of it, but it really IS nice.