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  • Jillian Heilman

The Other Side of Disability


Some people call me a "Pollyanna," I always try to find the good in any situation. If you don't know the reference - you have to go on Disney+ and watch the movie by the same name :) I am one those people that always tries to put a smile on my face, even on the toughest of days. We even have a saying in our house, "if you don't laugh, you will cry." This is the epitome of living life with chronic illness, or in my house raising children living with chronic medical issues. You see, there are many days that are difficulty, overwhelming, challenging, and at times, down right depressing... but for me, I try not to dwell on those areas of our family's lives. Instead, when the kids are feeling healthy or strong or silly or compassionate, I choose to celebrate and share those days. But as with anything, there is always a flipside, in this case, "the other side of disability." A side, I don't always talk about.

It is not that I don't want the world to know the bad that comes with the good, in fact, I think it is important to offer the whole story, when possible, but the truth is, this story is not just my own to share. As my children get older, and their diagnoses are more impactful, they have to learn to navigate this world on their own...without their momma. I respect them. In fact, I am overwhelmed with pride as they take on the responsibilities of medication management, scheduling appointments, communicating with doctors on their own, and advocating for their own rights but I am also there to pick them up when the days are long and the journey is painful and uncertain.

In the past, I would create a post to share these highs and lows, but now, I softly tread that line of sharing my story, as a mom to these wonderful children and how it impacts me, without divulging any information about my kids that they don't want the world to know. Again...that is their story to tell, if they ever want to tell it.

So today, I share an encrypted message, with the permission of my daughter, on "the other side of disability." Last weekend, Neeley had an amazing and strong day in which she was able to run 8 miles at a decent clip, as I biked along side her. As she finished that run I was in awe as I realized that less than two years ago, she had been hospitalized twice in the Intensive Care Unit at Tampa General Hospital with undiagnosed cardiac issues and had been to the ER more than 6 times during that same timeframe and I proudly shared how far Neeley has come with my friends last weekend. It is what happened after that run that we don't always share. We don't share the fact that Neeley's body fought her desire to challenge itself as her disease reared its ugly head right as we went out to lunch that same day. She had to leave early and was in turn sick for the next 48 hours. She felt more than ill, she felt broken. She felt that same thing, many of us in the world of disabilities experiences, taking one leap forward and three steps back. It is a constant balancing act between one's body and one's heart and mind.

This balance continued on into Monday for Neeley...it was another "other side of disability" day for her. She had an experience that I can't share as her mom...but let's just say we both shed a few tears. A day where she advocated for herself and learned to continue to accept her "lot in life." I was honored she reached out and invited me to lunch on the difficult and broken day she had. I know she wants to become more independent and do more of these tasks on her own, but I am here now and gladly will carry a little of that weight for her, when she lets me. I also understand that in just a few months she will be moving out of state and starting her next chapter in life as she enters her Freshman year of college and I won't always be there to see her "other side of disability." As a mom that brings about a whirlwind of fears, but as with any mom out there, disabilities or not, we raise our children for this day. The day they spread their wings and create their own path to independence, which brings me to the purpose of this post...

Be kind. Smile. Give someone a hug. Offer to help. Be patient. Carry tissues just in case someone needs one. Say a prayer. Look beyond someone's smile and try to understand what their eyes are saying. Don't judge. Love. Offer up a big dose of 'Momma Love' to someone who is having an "other side of disability/life" day.

Many of us share our good days, but with those good ones, come some not so good days, and a few down right bad ones. I know I can't always be there for my children when they experience the "other side of disability" days but maybe someone else can. If you happen to see someone, anyone, who might be having "one of those days" offer up a smile or a shoulder to cry own. Be there for them if they ask you to walk along side them. This momma will be thankful for your kindness and I will return the favor with all those who cross my path.



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