My husband, Kasper, was off from work on Monday. As usual, I made him use this day to take me grocery shopping. He gets two – three days/week off so I don’t think it’s too selfish of me to use one day off for errands. I try to be as quick as I can so I do my best to be as prepared as I can. Having a super tight budget like ours means short grocery lists regardless how hungry or low on general supplies and necessities we are. It also means I have less inventory to consider so I have to use brain power to predict and map how our next week should go. It’s tiresome for me. I put it off as long as possible then rush through it so I can be prepared in stores.
Kasper is a great guy. He has a lot of patience during a lot of situations I know would have made me lose it but when it comes to grocery shopping he is frustratingly impatient. It drives me bonkers. He doesn’t say anything, it’s 100% body language. Sometimes it’s the facial expression; like he wants to tell me to stop staring at the shelves but doesn’t want to say the words (because I now get confused when labels change or they rearrange brands and I need a couple extra minutes).
After rushing through making a weekly meal plan followed by making the shopping list and trying to ignore the immense space behind each food cabinet I opened; I rushed apologetically through the grocery store then unloaded the groceries and put them away. I was tired from the top of my [swollen-feeling] brain to the tip of my disgustingly purple (but uninfected) toe. My eyelids ached but I had little to no time to make a nap worth it.
4 o’clock comes around and Kasper exclaims he’s going to the gym, taking JJ with him. That’s fine; we’re having what I call app night. It’s one night every couple months where I make mozzarella sticks, jalapeno poppers, french fries, chicken tenders, pizza bites, pickle chips and roasted carrot sticks with garlic. It sounds like a lot but it’s all frozen except the carrots and pickles. Half is easily baked at once while I fry up the other half. It’s horribly unhealthy but terribly delicious and reasonably quick and easy to make [even one handed]. I decided, because dinner would be easy to make, to take off my AFO, unwrap my toe and close my eyes. The gym’s childcare center will watch your kid for 2 hours and Kasper takes full advantage of that. I could easily get an hour plus a few minutes without wrecking dinner hour worse than him (heh-heh).
I didn’t get the invite
Ten minutes later Kasper calls and asks if Skas wants to go to a carnival. There’s a small one set up in the parking lot of the mall next door to the gym. JJ saw the lights and ferris wheel and Kasper couldn’t say no but couldn’t say yes without asking Skas first. Up until this point we have been too poor, too unavailable or too consumed with my having a stroke and dealing with that, to take Skas anywhere he has or hasn’t been since before the age of 3. I had to explain the carnival to him. When I was done, I kind of wanted to go too.
I was excited but also anxious. That tickle of fear began in the high center of my diaphragm and I felt I could hear my heart literally beating against my chest. My armpits suddenly felt cold but when Skas said he wanted to go Kasper only asked me to make sure he was ready to be picked up.
When I invited myself along, Kasper sounded just as shocked to hear me say it as I was. I was really tired and he knew that; I was already having hip pain from the weather being wacky and he knew that. He knew that my tiredness combined with my sore hip would make walking outside difficult. He knew the chill in the air, the crowd and the increase of sound and light would overwhelm me but he didn’t know I would still want to go.
All of these things happened but to a far lesser degree than expected. Kasper was there for me to assist whenever I needed him. It was indeed a small carnival and the lights were very overwhelming but the crowd didn’t grow very big while we were there. Our kids are still small so going earlier than most isn’t a bad thing to them (yet). My hip caused me great discomfort the entire time but being unable to get on these particular rides meant I was the holder of things with a great opportunity to rest in various ways and not “look disabled.” I experienced vertigo watching them a couple times– there’s something about the moving lights and watching people moving beyond them that is somehow similar to vertigo. I was also unnecessarily afraid of seizure. I have no trigger; there is no need for this fear around flashing lights, plus they were moving colored lights, not bright strobe lights. As more time went on without anything abnormal happening, I became more confident with my rare outing to a community social event.
There came a time where JJ wanted to go on a ride that wouldn’t have fit an uninterested Skas. Kasper and I exchanged glances and I felt shame wash over me as my confidence was slowly being replaced by anxiety. We had to split up or make one wait for the other. Only Kasper could ride with Skas on the one he really wanted to go on (similar to gif above but called something else) and I was obviously best suited to wait while JJ rode the little car in a circle for 10 minutes.
I grabbed JJ’s little hand and for the first time in 4 years of his life, I walked in public holding his hand. I’ve held his hand in the house, the sidewalk up to our house and inside a place or two but not like this. I was freaking out inside! I kept thinking of the same things I feared with Skas when I was able bodied and knew I could hold or chase him. I cannot chase JJ if he gets free and there was a lot of people around. There was a lot of ideas, thoughts and emotions going through me. Then I realized Kasper went off with the tokens so I had to walk with JJ relying completely on me for safety and competence to the machine. We made it there and back though I struggled. After the ride, he grabbed my hand and we met Kasper and Skas at the ride they were finishing up. I felt like I finally did something a normal mother would have done. I am only experiencing this pride now, two days later as I reflect on my experience that evening.
It’s not often we get to do things as a family. I have a lot of anxiety and it often affects me physically as well as mentally. I prevent our family from having fun because I cave in to the fear and rush of the unknown, letting them pull me in and away rather than out to be with others. I’m working hard at correcting this reaction so I can re enter society as a functioning and capable person. With a disability I can still be capable it will just take time. I’ve worked hard to get where I am just in the comfort of my home and it’s been almost five years.
I had to “recover” yesterday from my full day Monday but today, with my mind a bit refreshed and able to think without zoning out mid thought, I see how powerful my decision to go to the carnival was. I was exhausted mentally and physically from grocery shopping but despite that and more, I participated in a family event without provocation from anyone. In direct result of my decision I made progress in all of the same areas wore out from earlier plus some. I discovered that I can withstand overwhelming noises and lights in the name of experiencing my kids add irresponsibly to our debt for an evening of memories. It is well worth the anxiety to feel my son’s hand grip mine knowing I will do everything I can to get him where he wants to go safely. It is well worth the ache in my hip to walk tightly around uncaring folks, smelling greasy food I can’t afford while holding on to my husband’s arm as he holds the hand of our youngest and our oldest skips ahead of us excitedly. The following day of thoughtless rest was well worth the impromptu memories our kids will share always with us.