Joy in the Journey

Joy in the journey
One of our greatest challenges of having a child in heart failure is that it’s extremely difficult to distinguish between typical illnesses and decreased heart function simply based off the visible symptoms. Saturday morning, we had quite the scare – Asher woke up with a stomachache and was looking very pale. He had no energy and looked miserable! This was completely unlike Asher (who is usually up by 6:00 am with an insane amount of energy that comes from who knows where). Now, if his older brother were to experience these same symptoms, we’d probably not consider it to be any big deal. We’d give him some water and possibly some Tylenol, have him lay down for a bit, and keep a close eye on him. However, with Asher, paleness, lack of energy, and stomach pains are all symptoms we’re supposed to be keeping our eye out for because they could indicate issues with his heart.
After talking on the phone with a cardiologist, we determined it would be best to rush up there to the Emergency Room and get him seen.  I volunteered to take him, so Barbara could stay home with our other two kiddos, and we were soon in the car making the 45-minute trip up north to Primary Children’s Hospital. As crazy as the morning had been up to that point, it was about to get a little bit more exciting.
About 15 minutes from the hospital, I noticed a large amount of debris in the road ahead on the interstate. It looked as though some sort of wooden furniture had fallen from a trailer and shattered into big pieces all over the road. My Han Solo skills quickly kicked in as I did my best to dodge the debris. I thought I had succeeded in dodging most of it, but about 5 minutes later I heard an odd sound coming from the front driver’s side tire. Suddenly, I heard the tire blow, and I quickly made for the shoulder of the road.
A huge gash had been made I the side of one of the front tires. “Great!” I thought to myself. Here I am trying to get my kid to the emergency room, and now I’ve got to deal with this? Thankfully, I was able to switch out the damaged tire and use the spare, and we were soon back on the road. By this time, I noticed Asher had begun to act totally like himself again – his color had returned, his energy was normal, and he was just talking my ear off from the back seat.
By the time we got to the emergency room, I debated whether it was really worth bringing him now, seeing as he was acting like his normal self. But at the same time, I needed to know whether the symptoms he had experienced just an hour before were connected with his heart function or not. I’d never be able to live with myself if I had turned around right then only to find him experiencing the same or worse symptoms the very next day. I ended up checking him in, and I am sure that all the doctors and nurses thought I was one of “those” parents – the ones who bring their child in to the ER for apparently no reason at all. But Asher had been quite sick earlier that morning – with a loss of appetite, paleness, low energy, and so on. At the very least, I wanted to rule out that these symptoms were a result of decreased heart function.
It was quite a long visit, and in the end, we were able to determine that what he had was probably just some ordinary illness common to most kids, and was probably not a result of any decrease in heart function. After a quick bite in the cafeteria, we were able to head home (making a brief detour to Discount Tire of course). On the drive home, I thought to myself about all that had happened that morning. I couldn’t help but wonder, were we going to have to walk on this bed of pins and needles for Asher’s whole life? When our son gets sick, will we always be stuck debating on whether it would be best to rush him in to the hospital or just give him a bit of Tylenol and some chicken noodle soup?
Of course, we don’t know exactly what lies ahead for Asher. As fall and winter draw nearer, we are already building our defenses with new air filters, hand sanitizer, and healthy diets. We may be only a few years into this CHD journey so far, but I feel like we’re learning to accept the fact that these journeys are to be taken with patience, one day at a time. “Joy in the journey” has become our motto, and we’re determined to live each day with faith, not fear.

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