When I Ran a 5K Race With My Daughter With Special Needs


Parents of children with special needs, indeed anyone caring for people with chronic illness and disabilities, know that our life journey can be much less like a race to the finish and more like a marathon. That said, I couldn’t help my brain from seeing parallels as I jogged along the 5K race route through our hometown of Jamesport, New York, last week.

Eileen Benthal, pushing her daughter Johanna in a wheelchair crosses the finish line in the Jamesport Fire Department Sound-to-Bay footrace on August 23. (Photo credit: Denise Civiletti/RiverheadLOCAL.com)
Eileen Benthal, pushing her daughter Johanna in a wheelchair crosses the finish line in the Jamesport Fire Department Sound-to-Bay footrace on August 23. (Photo credit: Denise Civiletti/RiverheadLOCAL.com)

I was more prepared for my first 5K last year, having run three or four times a week for eight weeks before the race. This year, my own struggles with multiple sclerosis fatigue and the untimely death of my sister made training more difficult. However, those same factors and my daughter Johanna’s ongoing issues with cavernous angiomas and hydrocephalus compelled me to run the race to the finish.

While I had planned to run the 5K pushing my daughter in an adult running stroller, that just didn’t happen (we used her wheelchair instead). The night before the race, I asked her if she still wanted to be in the race with me. Johanna gave me her proverbial thumbs-up. Our only practice was me jogging up the street as I pushed her in the wheelchair. It wasn’t easy, but that’s when I decided we would get through it together.

I learned a few things about life as a parent to a child with special needs — from our first push to the finish — and I’d like to share them with you.

Eileen and Johanna at the start of the 5K race in Jamesport on August 23. (Photo credit: Denise Civiletti/RiverheadLOCAL.com)
Eileen and Johanna at the start of the 5K race in Jamesport on August 23. (Photo credit: Denise Civiletti/RiverheadLOCAL.com)

1. Fear nothing.

As I lined up with the other runners at the start of the race, I purposely positioned myself off to the side so as to not run into someone with the wheelchair. I’ve been known to be an absent-minded driver on two wheels as well as four.

With those first strides and pushes, I was immediately struck with fear. My heart was racing, and I felt like I was going to faint. Negative thoughts raced through my mind faster than my feet could carry me. I was afraid that my legs would give out and I would overheat quickly. I was kicking myself for not preparing better by training with Johanna.

Then I glanced down at Johanna laughing and waving to people on the sidelines. I thought of how much courage is bound up in this 19-year-old young lady, who has had more brain surgeries than most people have years in their life. In that moment, as we rounded the first bend in the road, I made a decision to dismiss all fear and press on to the finish.

Dismissing fear is essential to pressing on to the finish.

2. Do what you can, not what you can’t.

This is my go-to decision and one of my secret formulas for any problem in life.

After dismissing fear, I assessed our abilities as a team. Johanna was fine and, in fact, she was truly enjoying this race. I drew my inspiration from her as I told her that we would do a light jog and a fast walk the whole way. And I told her that if at any time she was uncomfortable, I needed her to tell me.

Living with chronic disease has taught us that any plans can always be altered; we just need to lead with our strengths and find the best ways to do what we can do to complete the tasks ahead.

3. Believe.

Those who have read my book or attended my workshops know that the first step to breathing while you feel like you’re drowning is to believe.

To accomplish anything, I think we need to believe in ourselves and that every struggle has a greater purpose beyond this life. I believe Johanna and I find our greater purpose in a living relationship with God.

Dismissing fear, deciding on a strategy that we could do and finding purpose in any difficulty has become a way of life for us. Since before Johanna was born, she has inspired me to believe. This day was no different.

I believe prayer is the key to our dialogue with God, and it inspires us to believe life holds a greater purpose.

As I jogged and pushed, Johanna remembered people by name as we prayed our rosary. I struggled to talk as we prayed, but the prayers and Johanna’s belief that we were running for a purpose kept me going.

4. Accept help and soak up the encouragement along the way.

Being a caregiver/parent to a someone with special needs can be exhausting. Anyone who has ever dealt with challenges beyond a day knows we all need help. I was reminded of this simple fact as people along the route were cheering us on. Volunteers and families were all so encouraging.

As we kept moving, there were water stations along the way. Rather than taking time to drink it, I poured it over my head, much to the giggles and laughter that consumed the princess in her chariot. We all need to accept help and encouragement along the way.

Eileen catches her breath and composure after crossing the finish line. (Photo credit: Denise Civiletti/RiverheadLOCAL.com)
Eileen catches her breath and composure after crossing the finish line. (Photo credit: Denise Civiletti/RiverheadLOCAL.com)

5. Persevere until the end and anticipate the bumps in the road.

This wheelchair wasn’t meant for running. I took one corner too quick and Jo almost went flying! So I refocused my pace and looked slightly ahead to avoid literal pitfalls in our journey. None of us can predict the future, but the more we persevere, the greater ability we have to plan for the obstacles ahead.

At the end of our jog, I asked Johanna if she wanted me to run the rest of the way towards the finish. She answered, “Yes!” with great excitement in her voice. As I ran and pushed her to the finish line, my little inspiration put both her thumbs up in the air.

My perseverance was rewarded, not so much in the sight of the finish line, but in the smiles on my daughter’s face.

Press on to the finish. It’s worth it.

A version of this post originally appeared on RiverheadLOCAL.com.

Lead photo credit: Denise Civiletti/RiverheadLOCAL.com


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