Facing Truth

I try to model positivity and a “can-do” attitude regarding Helena’s condition. However- there are times when reality seems to be more painful and moments when the emotions that I can typically keep under control seem to unravel.

Today was one of those days.

I went out to watch Helena run with her classmates at a school fun run today. She had a fundraiser like this a couple of years ago, just before the pandemic hit. It was a lot of fun to watch.

It was chilly outside, and yet Helena was overjoyed to be out there running, playing, being with her friends, anld experiencing the foam party. She was so determined to be at that foam party I spotted her a second donation to achieve it for her. She was giggling, socializing, and having a wonderful time. She was making the most of her experience.

As I watched her, however, I became increasingly sad and angry at her disability. I felt a sense of loss for Helena. I felt powerless.

She ran toward her first obstacle, an inflatable mountain that she was supposed to climb over. She started, and couldn’t get over it. Other kids came , climbed over, and she was still there trying to get up. It seemed impossible for her – and yet Helena, as usual, was determined to do the obstacle. After two or three rounds of kids overcame her, I encouraged her to skip the obstacle until fewer kids were there – but she wouldn’t be able to get over it without help. It took two adults to accomplish her getting over.

It was very discouraging to me.

It was a normal day for her.

She was having the time of her life. Unbeknownst to her- I was grieving the increasing disparity between her abilities and those of her classmates.

Helena couldn’t do several of the activities on the course. She couldn’t climb the inflatable mountain. She couldn’t jump the hurdles. She fell a lot. She was passed up constantly. She was left behind. This was more apparent this year than at the last fun run. Yet she was just so happy to be out there. She was giving it her all.

Helena had no idea I how sad this made me feel. I am the one who should set the tone for her. Sorrow for her circumstances is not an acceptable display for a parent raising a disabled child. Yes- it is okay to feel sad, and it is okay to be upset – but it is exceedingly unhelpful to her mindset to see me showing these feelings. Without her knowing – I was falling apart on the inside and it was visibly spilling forth in front of others.

I kept thinking – I won’t always be there to help her. I can barely help her now.

Helena has always been accustomed to finding workarounds to physical challenges. She knew she would eventually be able to get over the inflatable mountain- and without the large number of kids going at the same time- she knew she might even be able to make it without help. Helena exhibited the positivity we have encouraged her to have and will continue to cultivate.

I am always aware of her challenges and the difficulty she has with physical tasks – but do not always see these challenges in the obvious way this event displayed them. She does what she can while everyone around her passes her up. She does this with a smile on her face- just happy to be out there. I am grateful for her joyful attitude.

However, I do frequently grieve the struggles she has with simple childhood experiences. As I watched her, I felt the questions once again overflowing from my pent up emotions.

God- why? Why does Helena have to work twice as hard as everyone else? Why does she have to suffer while trying so hard to catch up, when there are others who won’t even take the steps to begin a challenge? Why does she have to deal with mean kids?

Why does she have to deal with the stares and whispers, the pitying. Why does she have to deal with insensitive comments? Why is this something that has a purpose in your plan? It doesn’t seem like it is useful to me at all. Why does she have to carry the burden of a disability? Why does any kid have to bear this burden of disability? Isn’t life hard enough?

How do I keep the joyful spirit I saw out there today joyful, and not turn bitter? How do I smile and not be upset when I have told her to smile and keep on moving? How do I set the tone of positivity if I don’t feel positive? Please- can You strengthen me in this?

There are many passages about tribulation and suffering in the Bible, and here is one:

“And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope;”
‭‭Romans‬ ‭5‬:‭3‬-‭4‬ ‭NASB1995‬‬

I have this passage highlighted in my Bible, and I love it. But somehow, the tribulation Helena has seems to be a little over the top. Why does a child have to be born with any form of disability or illness? It’s unfair and I’m angry!

As she grows and her peers pass her up- my anger grows with her.

I think it is really uncomfortable for other people to see her falling behind as well, and then when they look at me and see the flood of emotions it makes them even more uncomfortable. I try to stay positive, but sometimes the reality is that this is our situation and it is difficult.

I don’t like other people seeing this side of me and it is difficult to find people who can relate to this situation. It is a lonely place to be – I can’t adequately verbalize the pain.

I suppose the best imagery is the fun run itself. Helena has always been behind her peers physically. Her peers will likely meet setbacks or injuries along the way – and she may somehow gain a bit of ground in the race. But ultimately, they will heal, grow stronger, and move further past her physically. She will fall farther behind.

I am sure there are times when people wonder- why bother with physical activities? She shouldn’t have to keep pace. And this is true- but I will never tell her she is not allowed to run the race. She truly wants to run the race and has as much or a right to run as anyone else. I watch this happening – and it is hard.

During these times when the disparities are hard to look past, a shadow looms over me and I can’t seem to shake it off.

That is when for me, it helps to retreat and pray. As much as I know it can help to have others to pray with – solitude many times feels the most comfortable. Helena stayed with grandparents this evening, so I was able to just sit, pray, and dwell on my sorrow. I have found that I can’t bury sorrow – it is better to just experience what I’m feeling and pray my way through it.

I try to be positive, and mostly- try to live joyfully. Helena is such a blessing to our family.

But sometimes- I’m just not feeling it. And that is okay.