Hard Days

I have found myself thinking lately about a really difficult experience I had several years ago when I was trying to get insurance to pay for some equipment that the Girl in Charge needed. I had arranged a meeting with a representative from a medical supply company so he could determine whether or not she qualified for the very expensive adaptive stroller I was hoping to get for her. She had to be evaluated by a physical therapist of their choosing, so we were meeting in the offices of a medical therapy clinic that was housed in a building on the campus of our local hospital. But because my daughter was unfamiliar with the physical therapist they had chosen, and likely wouldn’t feel comfortable around her, I had arranged for her regular physical therapist from school to meet me there so she could give her input while offering my daughter some familiarity, and also so the two professionals could coordinate with each other. 

The meeting felt like life or death to me. We couldn’t afford the stroller on our own and I really needed the Girl in Charge to qualify, so I wanted everything to go perfectly. Normally I would bring my respite worker with me to appointments like this, but she wasn’t available that morning, and my husband was traveling for work, so he, too, was unavailable. But I had successfully tackled countless other appointments on my own so I just made sure that everything was planned out with precision. I made arrangements for my older two children to be at a friend’s house all day. I double checked the time of the appointment in my calendar (the appointment was set for 10:30am and I planned to leave by 9:30am because it would take 30 minutes to get there and I wanted to give myself an extra 30 minutes in case I needed it). I made sure there was plenty of gas in the van. I touched base with her physical therapist to make sure she would be there. I pre packed her bags the night before, and I made sure to go to bed early so I would be alert and well rested the next day. I had done everything I could think of to be prepared.

But as these things go, the Girl in Charge ended up having a really rough morning. Among her many other challenges, she suffers from sensory processing issues, and for whatever reason, that morning, she had a complete meltdown. When that happens, I have no choice but to wait for her to calm herself down and because of this, everything took longer than I had hoped it would. In fact, she never actually calmed down, but I had to make this appointment, so I put her in the van still upset and hoped for the best. As I pulled out, the clock said 10am exactly, which gave me no extra time to get there. On top of that, it was a horrifically hot day- one of those days when you start sweating buckets the moment you walk outside. The van was super hot because, along with everything else, I hadn’t had time to start it early and cool it off before we got inside, and so the heat of the van didn’t help with my daughter’s sensory overload. 

About 5 minutes down the road, I remembered that my husband had taken the stroller we were currently using out of the back of the van because he’d needed the trunk space for something recently. I knew that beforehand and had planned on grabbing it from the garage on my way out, but because I was so distracted by my daughter’s emotional state, I had forgotten, and had pulled out without it. I was kicking myself, but I didn’t feel like I had time to turn around and get it. I just thought, “Oh, well. I have my handicap tag and can just park up close and carry her inside.” I knew I would have to carry her in my arms with her backpack of heavy supplies on my back, but I thought, “I’ll just get through it, it’ll be fine.” 

But then another 10 minutes down the road as I kept looking at the clock, hoping we didn’t run into traffic, the thought occurred to me that we had gone somewhere recently in my husband’s truck with the whole family and so we had taken the handicap tag out of the van and put it in the truck. In a panic, I reached over to check the glove compartment and sure enough, there was no tag. So now I not only had to carry the Girl in Charge and all her heavy supplies, but I had no idea how far away I would have to park or how long it would take to get there. But I was still trying to be optimistic. The Girl in Charge used to receive her medical therapies in that building so I was very familiar with their parking lot and so I reassured myself that I would just park in that little section off to the side where I always used to be able to find parking 2 years earlier, and I kept convincing myself it would be fine. 

I would be fine. 

Everything was going to be fine. 

Even though my stress level was increasing with every mile. 

So, I finally pulled off the highway and as I came around the bend and was about to pull into the parking lot, I had to slam on my breaks because the entrance was blocked off. Then I started to look around and realized that a huge half-built parking structure was to my right (I had been so focused on getting there that I didn’t notice it from the road.) So I drove further down the street and pulled into another entrance and attempted to backtrack to the building I needed, only to discover that the entire parking lot in front of my building was completely torn up. 

I sat there feeling completely defeated. I looked down just in time to see the clock turn over. It was 10:30am on the dot. I was already late. So I frantically started looking for parking. I drove down every row praying for a spare spot. But at every turn, no luck. A few minutes later, I finally found one in front of a building that was 3 buildings away from the one I needed. Because of the construction, every parking lot in front of each of the medical buildings was packed. So, I had no choice. I pulled into the first available spot, hurried and put the heavy backpack on my back, and then lifted the Girl in Charge out of the van (she was probably 5 years old at the time) and into my arms, and then began to run as fast as I could across three parking lots toward our building. It took me forever. We were probably parked at least ½ mile away, if not more.  By the time I got into the building and up to the 5th floor, we were a solid 15 minutes late. I was absolutely dripping with sweat, the Girl in Charge, who had never quite calmed down from her earlier meltdown, was screaming, and everyone was looking at us like we were crazy. I could barely catch my breath, but I checked in with the lady behind the desk, and sat down out in the hallway because the waiting room was full.

And we waited.

And waited.

And waited. 

I knew we were 15 minutes late, but I prayed that the appointment could still continue. And I hoped that they wouldn’t be too annoyed with me. But my anxiety grew each minute I continued to wait, wondering what was taking so long. Finally, someone came out and informed me that unfortunately there must have been a misunderstanding. According to their records, the appointment had been at 10am, so I had missed my appointment completely and would have to reschedule for another time.

I was stunned. 

Absolutely stunned.

This could not be happening.

I tried to protest and ask if there was any way we could still meet, but she said that everyone had been there waiting for me but by 10:25am when I had not shown up, everyone had left and the physical therapist that worked there was already in another appointment. 

I literally couldn’t believe my ears. How had this happened? I had planned so carefully. I had checked and double checked the time. But somehow, months earlier when I had made the appointment, I must have written the time down wrong. That was the only explanation that made sense. If, by chance, I had been successful that morning at leaving at 9:30am like I had planned, maybe I still could have squeezed into the meeting in time to make it successful. But I hadn’t. And here I was, after all that exhausting work, being told to go home empty handed. 

In the meantime, I was so exhausted that I no longer had the strength to hold the Girl in Charge in my arms. I had tried to get her to sit next to me, but balance is an issue for her, and if she’s having sensory problems, she needs to lay down. But there was nowhere for her to do that. And she was still so uncomfortable from her earlier sensory issues, and now so hot and sweaty from our run, that she was lying on the dirty floor at my feet screaming. Not just a sweet baby cry, but screaming with such intensity that her cries reverberated down the hallway and into each of the medical offices on either side. People up and down the corridor were sticking their heads out their doors to find out what was going on and everyone who happened to walk by looked down uncomfortably as they passed. It was so loud, I could barely hear the person talking to me and she was less than 2 feet away. But no matter how much I pleaded and told her I didn’t want to put my daughter through the stress of an appointment again, the answer was still the same. The meeting would have to be rescheduled.

So, feeling completely defeated, I picked the Girl in Charge back up, put her heavy bag back on my shoulders, and got back on the elevator where everyone continued to avert their eyes awkwardly, and I carried my flailing 5-year-old back out into the heat where the sun beat down on us relentless, and we proceeded to walk the 1/2 mile back across all three parking lots to the van. The wind was blowing so hard that my long hair, which was soaked with sweat, would whip around my already sweaty face and stick across my cheeks and my forehead. I could barely see, but with a heavy, screaming child in my arms, I couldn’t quite reach around to pull my sticky hair off my face, and so I just walked that way all the way back to my van. Everybody who passed looked at me uncomfortably. My back felt like it was breaking. The strain on my arms was so painful. But I just kept trudging one foot in front of the other. Waiting at crosswalks was agony. But finally my van was in sight. It was at this point that a nice lady in a mini-van circled around and pulled up next to me and offered me a ride to my car. I was so touched by her kindness. But there was little use because my van, at this point, was only 10 steps away. So I said no thank you.

When I finally got the Girl in Charge back into the van and buckled her in, I got into the driver’s seat, shut my door, and burst into tears. I sat there and cried for a long time. At this point we were crying together. I had planned so carefully (or so I thought), but all the things that were normally in place (the stroller in the van, the handicap tag in the glove box, the usable parking lot, writing down appointment times correctly) things that I usually didn’t have to worry about, had not been in place, and so despite my best efforts, everything had gone wrong. When I finally got home, I left the Girl in Charge in her nice, cool, quiet, calm, air-conditioned bedroom to self-sooth, and I went into my room, crawled into bed and slept for the next 2 hours.

Even retelling that story makes me emotional, and exhausted. It was such a difficult day- one of those days that wipes you out and leaves you feeling completely alone. I wanted to pretend it had never happened. It was hard to understand why things had gone so wrong when I had tried so hard to plan everything out perfectly, especially when so many things in my life were already so hard. It felt so unfair. It WAS so unfair.

So, I’m not entirely sure why I have been thinking so much about that day lately. I think partly because this past year, 2020, has been so hard that I have found myself reflecting back on other hard experiences I’ve been through. And perhaps for some of us, that’s part of the answer to what we’re going through right now. 

It’s so easy to get discouraged when we look at our lives and when we look at the world around us. There’s so much uncertainty. Will the economy rebound? Will our kids ever have a normal school experience again? Will we get to be with our friends and loved ones in large groups again? Will our favorite cultural events like concerts and plays and sporting events ever resume? Will racism and bigotry end? Will our country ever be unified?

I don’t know the answer. I truly don’t. But I choose to hope. As a country we’ve been through hard things before. We’ve been through economic depressions, and pandemics, and world wars, and civil unrest. Our parents and grandparents and great-grandparents lived through a lot of personal and cultural turmoil. But they never gave up, and we won’t either. I truly believe in the resiliency of the human spirit. I truly believe our kids are going to be okay, and if anything, they will be better for what they’ve been through. More grateful. More hopeful. And I truly believe there are good years yet to come for all of us. Today is not the end of our story. It is just a chapter. We have reason to hope.

By the way, I did end up rescheduling that appointment. And it went perfectly. I got there on time. I had what I needed. Our physical therapist met us there a second time with a smile on her face and forgiveness in her heart. The Girl in Charge did qualify and she got the stroller she needed, and now we use it on a daily basis without a second thought. 

But on occasion, when I pull it out of the back of the van and buckle her into it before school, I think about what it took to get it. It was hard. So so very hard. I would never want to go through that experience again. But I can’t begrudge it. It makes me appreciate the stroller so much more. And if that’s the experience I needed to help me learn a few things about myself and to be better prepared in the future so that I could help my Girl in Charge live her best life, well, then, it was worth it.

2 thoughts on “Hard Days

  1. Rosie

    Oh Susannah, My heart breaks as I read this. And it gives me hope too. And I marvel at your strength. Thank you for sharing this. I had a hard day with one of my children just last night (adult children are harder to parent! I don’t care what anyone says). I know the Lord prompted you to write this now, because I needed to read it. Thank you for opening your experiences with those of us who need to learn from you. God bless you and your family.



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