Blew the dust off of this one, written five or six years ago. Still surprisingly relevant (or maybe not so surprisingly.)
This is what Kathryn looked like around the time this was written. Just too cute for words, if I do say so myself.
JUST A PAIR OF SHOES
“But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” 2 Corinthians 12:9
It was just one of those days, and the shoes were the final straw for me. It was Sunday. We were moving through the typical Sunday rush of trying to get eighteen people out the door to church with clothes that matched and also fit the bodies wearing them, no signs of breakfast on faces, and diaper and catheter bags all properly packed. I was, as usual for Sunday mornings, closed up in my room doing hair on each girl, one at a time. While moving through the routine of plugging in curling irons, digging through the hairbow box, and blow-drying my own hair, I had been pondering some topics from a recent discussion with Scott involving some language issues with Madlin that we felt might be related to her learning disabilities. Mainly these topics centered around whether or not more testing would help us know how to better help her. Sigh…. More testing? We’ve been down this road enough times to know that often this is just a waste of time and money. But not always, and therein lay the dilemma.
While I was thinking through these things again, our twenty-five-year-old developmentally disabled daughter, Erin, came in so that I could help her fix her hair. While I was working on that, she started to talk through tears about her time at the theater the night before. Our older sons occasionally take her out to a movie and sometimes dinner since she doesn’t get to do these kinds of things very often. They had all gone to see the Indiana Jones movie the night before, and while she had been waiting for the boys to buy tickets, she had noticed an older girl with two younger ones, also waiting to buy tickets. She overheard this girl tell someone that she was twenty-five and that she was taking her younger sisters to see a movie that night. Erin said to me, “I kept thinking that if I didn’t have this disability, would I maybe be taking my sisters to movies, too? I wish I could do that.” Oh, man. There it was. That old familiar knife-in-the-stomach pain that I have mostly learned to live with. I was running late and felt completely unable to come up with the words of comfort and wisdom that I knew I needed to come up with. I muttered something about knowing that God didn’t make mistakes and that, as bad as it hurts sometimes, we have to trust Him to decide the paths of our lives. Although I believe the truth of these words with all my heart, on this particular morning they mostly sounded to me like, “Blah blah blah. Blah blah blah blah.” I wondered if they also sounded like that to Erin. I shoved away the feelings of sadness and guilt and moved onto the next girl in the rapidly growing line outside my bedroom door.
One by one I managed to complete a fairly decent “do” for each girl. Four-year-old Kathryn, who was born with a severe form of a rare brain disorder called schizencephaly, was very “on” that day and so excited because she was planning to walk into church again with the aid of her new Crocodile walker that her PT had been training her to use. The previous Sunday had been the first time she had ever done this all the way from the front door to the two “Rosenow rows” in the sanctuary, and then all the way back to the van after church. She was especially excited because I had just gotten her a new pair of Sunday shoes to wear instead of her tennis shoes. Finding shoes that will fit over AFO braces is no easy challenge. We’ve gotten pretty good at locating tennis shoes that will work, and a company called Hatchbacks makes a black dress shoe for girls. But Kathryn loves her sisters’ white church shoes. Well, I found a darling little shoe made by Robeez in their new line called Tredz that fit over her braces. They weren’t cheap, but we ordered her a pair, and they had arrived just that week. Beautiful white slippers with little pink flowers on them – very “Kathryn.” She was so thrilled that she went into her little CP grin and got stuck there for quite a while when she saw them for the first time. I thought her face would freeze like that. She isn’t very verbal yet, but she had made it clear that she couldn’t wait for Sunday.
After all of the girls were adequately coiffed, I made my way downstairs where I started helping get braces on and complete the final round of tooth-brushing, potty runs, and catheterizations while Scott got both vehicles ready to be loaded. As I was working on Kathryn’s braces, Caelyn, who has spina bifida, headed to the bathroom to catheterize herself, but her crutch hit the lid to a plastic toy bin that someone had left out. She went sprawling onto the floor, face hitting first. I was sure that she must’ve bloodied her nose or mouth, but she got up and stoically brushed aside a tear or two and assured me that she was fine as she continued to make her way to the bathroom. Aw, the knife again.
Colin, who is blind, walked into the basement door that someone had left open and hit his head as he was trying to find an empty bathroom. Ouch, I felt it again.
Once Caelyn got into the bathroom, she couldn’t get her Mitrofanoff to drain with a catheter. Okay – uncork your SP drain and empty your bladder that way until your surgery (AGAIN!) next week to see what’s going on. More knife in the stomach, and this time it felt like someone was twisting it.
I told myself, “Shake it off. We’re late and we have to get the vans loaded.” Braces were in place on Kathryn’s legs, and it was time for the big moment. It was time to put those new shoes on my little princess. She trembled and giggled with excitement as she studied my face and waited.
…But, no… They wouldn’t go on. They fit on the braces without her sweet, fat little feet in them, but they didn’t work with brace, shoe, and foot. My mind began to race, and the adrenaline began pumping – this is NOT happening. This stupid shoe IS going on that precious foot. I don’t care what I have to do to make it happen. I WILL get these on her. I was determined as I saw the understanding begin to dawn in those big brown eyes of Kathryn’s. I didn’t want to see the disappointment that I knew would peep through eventually. Then suddenly, there it was. She wasn’t able to express it, but she knew that Mommy couldn’t make her new shoes go on.
I’m ashamed to admit it, but this was just too much for me. I slumped to the family room floor and just let the knife go in as far as it would go. I just stared at the floor and wallowed in the pain and let the tears start to fall while Kathryn stared at me. Why did this seem so impossibly hard to accept? Why did I feel like I would never get up from that floor again – like all I wanted to do was draw all of my “broken” little ones to my heart and rock them and sing to them and put Band-Aids on all of their hurts and tell them that in a few days the hurts would all be gone. I don’t know why, but that is what I wanted. Suddenly, it was all just too big and too hard.
I did manage, with Scott’s help, to get Kathryn’s old tennis shoes on her, and with her hair in a little bun and ringlets at her neck and temples, and with her lacy pink dress, she still looked beautiful - like the miracle child she is. We went to church, and she walked in wearing her tennis shoes. But it hurt. It hurt a lot, and the pain stayed close to me all day.
I believe that other parents of special needs children must also have days like this. This is quite a journey we have embarked on, and not one to take lightly. And some days we just have to cry and remind ourselves that we aren’t strong enough to see this through. That we aren’t wise enough to guide our children through the tumultuous and painful paths that their lives will follow. On those days, we have to let God lift our chins so that we can look into His eyes and confess that we don’t understand. And we have to rest on His chest, knowing that He cries with us and has promised never to leave us to do this without Him.
It was just one of those days, and at the end of it, I had to go to sleep and pray for a brighter day tomorrow. I had to choose to focus on that incredibly deep dimple in Kathryn’s left cheek, and Colin’s amazing memory and beautiful singing voice, Caelyn’s twinkle that survives surgery after surgery, Madlin’s desire to overcome her challenges, Erin’s gentle servant’s heart – and Scott, the soul mate that God has chosen for me to travel alongside on this road of life. When I awake each morning, my children’s (and my own) brokenness will still be there, staring me in the face. But God will also be there, faithfully guiding me – and when I can’t stand on my feet, carrying me. This is a blessed life, and we will all arrive Home someday with the scars to prove it.