Two months ago I finished my first ever half marathon. That would be 21km of feet hitting the pavement at a slow jog. Though my times were nothing to brag about, I finished and I have a medal to prove it. The medal is hung from a wide silk ribbon and it is in the shape of a hot air balloon. It is pretty, but let me tell you the race was anything but pretty.

Okay, parts were pretty. The location was in Taitung, Taiwan. Known for beautiful mountains and blue/green ocean. We started out in Forest Park, which is just that a park forested by trees. We ran towards the mountains. That means that I ran uphill for at least 3km of the race (I calculated), but it also means that I ran downhill 3km. The rest of the layout was flat along the river basin with the view of the mountains the first half. The last half I noticed rice fields flooded, rows of green tomatoes hanging from their tepee-like frames all while dreaming of the finish line and a cold green tea.

Because…

It was HARD! I mean I had trained for this day. It wasn’t like I just showed up and put on a number hoping that I’d finish. No, I’d spent the last six months building up my stamina for this day – and it was still hard.

It’s funny how your mind sees things differently when your body is in pain. Like those slight inclines turned into steep cliffs and the curves in the road became tormenting hairpin turns hiding the turnaround. Then the last 3km of the race perseverance was a must. No joke. I was back in the park when I saw the 3km marker. Seriously? I still have three more to go? But I’m in the park! My legs were feeling the burn, I had slight abdominal pain, and the sun choose to come out and shoot rays of hot fire at me. I got to the 500m marker and rounded the turn with a sharp inhale. Where is the balloon filled archway announcing the end?!?! I wanted to lay down right there. Another “more mature” runner was in front of me. He and I had been encouraging each other with the Mandarin phrase “Jia you”. With his encouragement we finished together.

It was during the last stretch that I remembered I had written an article comparing  parenting a child with special needs to a marathon with hurdles placed throughout the race. At the time of writing that piece, I had only run a 10k. I used testimonies of other long distant runners to write that piece, but I can now testify that I was pretty accurate.

A few weeks ago a friend reposted a quote on Facebook. She, too, is parenting a child with special needs. It said..

“Every parent plans to raise their child for about 18 years, set them free for 30 years and then hope they come back to help them face the final years of their own life. A SPECIAL NEEDS parent plans to raise their child for 65 years and while doing so also has to prepare for the other 20 or so after they themselves are long gone…. Let that sink in for just a moment and you will begin to understand the drive and determination that many of us have while we are here on earth.”

I don’t know who wrote that. It wasn’t me, but it was definitely the feelings I was having during that hot Sunday morning. Let me explain.

I sometimes feel I’m running uphill. Life is hard and sometimes a struggle. Let me give you a glimpse from our meal times: Jie Jie, who is now 13, but mentally about 4, has to have her food cut up into tiny bites so she doesn’t choke. We have to watch her closely when she feeds herself as she tends to take 3-4 huge bites at a time and proceeds to choke anyway. Then she gets upset with our oldest because he has his elbows on the table, and then she thinks her chair needs a cushion (although before the meal she said she didn’t) or we need a completely different chair altogether. By the time she finishes her meal, everyone else is done and the table is cleared.

I feel my body giving out. It has been reported in health studies that parents of children with special needs age quicker. This is due to the stress. Stress of child choking to death. Stress of child getting hit by a car. Stress of trying to plan for the future. Stress from the IEP meeting or trying to figure out how best to homeschool your child. These are just a few that I know parents deal with on a regular basis. For me my body gave out in the form of a sprained shoulder. I was in physical therapy for about three months repairing the damage, which we believe may have been caused from years of me daily tightening my neck muscles every time Jie Jie would grab me in a super bear hug squeeze. Some days this happens 10-20 times. I have a very tight neck.

I am tired and weary at times.  Many kids with special needs may not sleep all night long. Many parents go about their day on about 3-4 hours of sleep. Plus all the trips to the hospital for therapy, check-ups, and surgeries. Fixing supper? Laundry? Who has the energy?

I can’t see the finish line and afraid I never will. Just like those deceiving turns from the half marathon that blocked the finish line, I can’t see the finish line of parenting. And this is where that quote hit home for me – it can be overwhelming. This is when perseverance has to kick in. There are days I want to give up, but I can’t. I want to finish this life well.

But…(here’s the encouraging part)

We don’t run alone. Just like the other runners in my half, there are other parents who are running this race with me. They may not live in the same town, and maybe not even the same country, but, they are on social media. We are there to support and encourage each other in our knowledge, our joys, and even in our frustrations. We understand the pain and the fear. I am part of a Facebook private group for those dealing with the same syndrome that Jie Jie has. If you are not part of a group, I highly suggest either searching on Facebook or on a search engine.

Spectators.  Running through a small village near the mountain’s edge a few elderly people sat in white plastic chairs cheering us on. In life, I have people who come alongside me and help me. That morning of the race, a dear friend came to our home at 5:50am to be there when Jie Jie woke up so the rest of the family could complete their own race (yep, I signed everyone else up for the 10/5km).

Qualified Help. During the run qualified EMTs on scooters rode up and down the road ready to attend to those in physical need. As a parent of special needs, there may come a time when qualified help such a therapist, counselor, or psychologist is needed. Don’t shy away from mental health help. I just read in a local English newspaper here of a elderly Taiwanese man killing his sister who had special needs because of the stress from the past 30 years of taking care of her. None of us want that. We need to take action before it gets bad.

So, who are you?

1. A runner? Parenting a child with special needs?
2. Active spectator? Maybe you’re the spouse, the grandparent, the aunt/uncles, or maybe a friend who helps out. Thank you. Thank you for your help, your encouragement, your presence in our life.
3. Sideline spectator? You see families, but not sure how to help. You may not even know anybody with a special needs – they are not in your line of vision. I have a challenge for you: First, look – you always see what you are looking for. Second, just smile and say “Hi”. Seriously, just that small act of kindness speaks volumes to us. It’s a reminder that we are human and that you acknowledge that we and our children are humans

Just as the scenery during my half marathon was beautiful, a small act of kindness brings beauty to a harsh world – no matter if that person has special needs or not. I challenge you to do one small act of kindness this week to anyone, but you’ll get extra points and a virtual medal if you do it for a family touched by disability.