What My Kids Are Learning From Watching the Toughest Moments of My Illness

In Utah, July 24 is a state holiday: Pioneer Day. A day to remember and celebrate our ancestors and pioneers that crossed the plains to settle the Salt Lake Valley. In terms of celebration, it’s really just another Fourth of July — parades, BBQs fireworks — the whole shebang.

Prior to my illness (autoimmune disorder and postural orthostatic tachycardia syndrome [POTS]), my husband and I loved to entertain. Our house was often the central location for celebrations, parties, and last minute BBQ’s. But it’s hard to try and coordinate anything these days, since I never know if I’m going to feel good or not. And even if I do feel good, I can’t both prep for a party and attend the party. Even if I just attended, I would still have only have about a 30 to 60 minute limit, until my body tells me it’s done. This has obviously put a damper on our social life. And, while that is definitely something that I miss, it is certainly not my biggest problem.

This most recent Pioneer Day, I was faced again with the reality of the things I do miss the most. We opted not to host any parties, just our own small family. My husband pulled the propane fire pit into the driveway so we could roast marshmallows. We followed that up with some small fireworks, including sparklers.

My kids, especially my 5-year-old twins, were loving the sparklers. They were getting especially creative in their ninja fighting stances while wielding the flaming sticks. We had given them all the safety tips, and they were doing a great job. Unfortunately, they were in their jammies and bare feet because their parents (mom fail!) didn’t have the foresight to have them put on shoes.

I’m sure you can see where this is going… Long story short, part of a sparkler fell and my cute boy, Jack, ended up with a third-degree burn on the bottom of his foot. (I’m now wondering why I have not previously questioned the sanity of taking a short stick burning at 1,000 degrees with sparks flying everywhere and handing it to a young child…)

My poor boy started screaming and shrieking like I have never heard before. It was awful!

Now, one of characteristics of my condition is that I overproduce adrenaline. Noise, light, movement, and stress all contribute to my over-stimulation and adrenaline surges. Even without provocation sometimes, my adrenaline will shoot up. When it hits a certain level it actually puts me in a seizure-like state. I collapse to the ground and start shaking and jerking uncontrollably and become unable to talk or communicate — often for anywhere from 20 minutes to two hours. At one point these massive episodes were happening six to eight times a day.  Fortunately now, with medication and a lot of life modifications (i.e. I never go anywhere or do anything), it’s down to a few times a week.

Well, I was already hitting my limit for the evening when the accident happened. As you can imagine, I quickly hit overload. I’m usually the calm one in an emergency, but I turned into a mess. I couldn’t do anything. I couldn’t run to my son. I couldn’t help him. I had to rely on my husband to scoop him up and rush him inside, grab some ice, collect his wallet, help move everything out of the driveway so he could back the car out of the garage and take Jack to the hospital. The whole while Jack was screaming like a banshee. And, I was helpless.

Not only helpless, but a liability. My husband could see I was about to crash. He was worried for me, but had to leave. He yelled to our teenage son, Andrew, to help me into the house. I stumbled inside in a daze and somehow made it to my room before crashing. It was devastating. Not only could I not go to the hospital with my son, but I had just left the rest of my kids, who had also viewed this traumatic scene, to fend for themselves.

I could hear James (Jack’s twin) upset in the other room. I couldn’t help Jack, and now I also couldn’t comfort James or my other children either. The overflow of stress and emotions did not help my physical situation. I was so angry — angry at myself for not making my kids put shoes on, angry at my illness, and angry, once again, that I couldn’t be the mom that I wanted to be — that my kids needed me to be.

In the past year, I have grieved a lot over my situation. I will feel like I finally hit a point of acceptance of my circumstances, where I am able to appreciate all the many blessings I do have and feel happiness and joy again. But, then something comes along to regurgitate those feelings of sadness, anger and inadequacy and I have to fight my way back to peace.

It’s been a few days since this incident and I’ve fortunately been able to regain some perspective. (It helps that my son is doing well and healing nicely). I’ve had a lot of time this last year to reflect on my inadequacies as a mother and wife. This most recent incident has brought those thoughts to my mind again. Here are some of the questions I’ve asked myself and some of my conclusions:

1. Before I was sick, did I always feel like the best mom? Was I always the mom I wanted to be? 

When I look back through my rose colored glasses at my pre-sick self, of course I think I was a better mom then. But, if I’m totally honest with myself, the answer is no. I’m not sure there is any mom in this world, sick or not, who doesn’t feel some kind of inadequacy. For some reason being a mom comes with a load of love and a load of mom-guilt. I may not be the same mom I was before, but perhaps there are other ways I have improved. I know I certainly cherish the time I have with my kids more. I try to take time to listen to them, snuggle with them, sing them songs, and give them hugs, because those are the things I can do right now.

2. What will my kids learn to appreciate?

It’s so easy to take things for granted when everything remains the same. You often don’t appreciate something until it’s lost. I think I have an interesting perspective because I am a mom that became ill in my mid-30s, but I also grew up with a mom who became chronically ill in her mid-30s. So, I can see both sides. I know what it is like to have a chronically ill mom. I remember times when I resented my mom’s illness. I was upset when she didn’t come to my vocal competition or a dance performance. However, I also remember the things that she did attend, and I remember how much more it meant to me that she was there. I  knew it was hard on her and a sacrifice for her. While I am sure there will be things my kids resent because of my limitations, I hope that somehow this can also help my kids gain a better appreciation for life, for the things we can do, and for the sacrifice of others.

3. What are my kids learning from this?

As parents we don’t want our kids to ever have to face hardships or trials. And yet, it is those hardships and trials that mold us into the people we are. In addition to my current illness, I have experienced trials such as endometriosis, infertility, postpartum depression and the loss of my mother. While I wouldn’t choose to go through any of those experiences again if I had the choice, the lessons I have learned from each of them have been invaluable. I have learned compassion for others who may be struggling similarly. I have received service and kindness from others that has made me want to serve and show kindness in return. I have learned to rely on my Savior in times when there is no one else that can help.