Ashlyn has been an adult for a year now. I am not sure how I feel about it. When she was little enough to be carried, her intellectual and physical disabilities were not a big deal. I hoped that each year would bring new accomplishments and new abilities. I believed that someday her body would straighten and strengthen, that her brain would catch up, and that she could attend a normal class at school.
I did everything I could to help these dreams come to pass with research, healthy living, and therapies. We had some breakthroughs, but as she got older, the gap between Ashlyn and her “normal” peers widened. You can read about our journey in, “An Answer for the Guilt of Motherhood.”
She developed a progressive club foot deformity and needed surgery to walk. To read the entire story click here and to see the one-year update after surgery, click here.
A brachiation ladder in the form of a walking track was a beacon of hope to me. Ashlyn used it to walk upright on her own for most of her childhood.
I thought it would help her feet flatten and her back straighten, but they continued to get worse. In 2018, Ashlyn had a spinal fusion surgery because her scoliosis had progressed. She did wonderfully with the surgery and the results were amazing!
Again, I thought that the walking track would help straighten and strengthen her muscles. In 2021 we had to move the walking track out of our living room for a remodel. I wasn’t ready to give up the hope that walking track had given me; that Ashlyn would walk on her own someday, that she would even run!
We moved the walking track outside so Ashlyn could still use it. She rarely did. She never wanted to. I felt guilty for not forcing her to do it as part of our daily routine, but the truth was, walking was becoming less and less beneficial to her. Her feet had continued to turn after her surgery, and her braces hurt them if she walked too much. Her toes pointed inward, and her knees rubbed together unnaturally. Her back was not as straight as initially after the spinal fusion, and she would habitually hunch over and lean to the left.
I gave up hope that the walking track would help her walk. Each passing year brought a slight increase in her disabilities. She was gaining weight but not gaining muscle. Her gait and her posture could no longer be corrected by outside forces. Her mobility was so dysfunctional. It gave her a measure of independence: walking with a walker for short distances or crawling around the house.
She now reminds me of my mom who lives in assisted living and who won’t move an inch without her walker; except that Mom is in her golden years and Ashlyn is just starting her adult life! If Ashlyn has such problems now, what will her body be like in 10 years, in 30 years?
I finally told Chris that he could take down the walking track and use the wood for other purposes.
I grieved that day. I grieved the loss of my dream. I grieved for my daughter who has not been healed. I grieved for her twisted, painful body. I grieved for her mind that understands some but not all. I grieved for her past, all that could have been done differently that may have made a difference. I grieved for her present. I grieved for her future.
In this season of mourning, there was a new beginning!
It happened that the children’s playset broke at that same time. Chris had an idea to fulfill another long-time dream of mine. He and our sons took the wood and created a garden!
A garden! I felt so loved. New life! Growing and thriving things! I was amazed by how quickly everything grew in the untested soil of my backyard.
Problem after problem began to pop up, and each one sent me into a downward spiral of dismal imaginations. First the delicate, pink climbing roses developed powdery mildew. (I had discovered the roses on the side of the road, and I dug them up and replanted them in my garden. I smiled to myself while I was doing it, because my Grammy had loved plants so much, she would dig them up all over the US and take them back to her home in Wisconsin. She did have one of the prettiest yards in the city of Wausau!) I didn’t know what powdery mildew was at first, not until I had to cut the roses to the ground. I worried that my inexperience would lead to the demise of the beautiful clematis plant given to me by a friend. I was imagining a garden that was white, powdery, and dead.
Thankfully no other plant was affected by the blight, and I learned how to deal with it. Next came that snap peas that took turns becoming brown and shriveled. I imagined it was bacterial wilt, and I because I didn’t pull them out immediately, my beautiful but somewhat wilted tomato plants had become infected and would be a complete loss. Then I learned from my more experienced neighbor that the time for snap peas had passed.
The garden kept growing and the lettuce was wonderful! Fresh salad from the garden felt like the most luxurious of pleasures.
What a tragedy that lettuce won’t grow all through the summer, but ready to take over in dominance were the tomatoes and cucumbers. Nothing can compare to a homegrown tomato, and I ate some every day.
Only the cherry tomato plant produced well. The other two plants grew lots of tomatoes but few that were good to eat. I let them grow too wild and had a jungle by the end of summer.
We are a family of cucumber lovers, and the garden couldn’t produce them fast enough despite the abundance of seeds I had sown. Perhaps I had too many plants too close together, or perhaps the soil wasn’t right. They sure looked lovely though!
Soon, the leaves began to turn yellow and wilt. I found the dreaded garden pest, the cucumber beetle, every time I inspected the leaves and flowers. My neighbor had told me that I should kill them because they could carry bacterial wilt to the rest of the plants. I imagined my garden languishing under their reign of terror. Worse yet, I imagined my neighbor’s thriving garden being attacked by beetles that my plants had harbored. I felt responsible for the carnage that was about to be unleashed…but never actually came.
Again, I was overreacting. Someone else told me that the yellow color was caused by the lantern flies, and if I sprayed the plants day and night with soap water, they would leave. This did seem to help, but soon the cucumber plants were past their prime and I had to pull them out. That left more sunshine for the cone flowers and evening primrose. They stopped producing blooms early in the season and never came back. Perhaps next year I will not plant cucumber in front of them and they will be happier.
My pepper plants also had more sun, even though summer was fleeting, and they didn’t grow as large or colorful as they should have. Still, I enjoyed every, last one of them.
It was a successful first season, and I learned so many things that will make my garden better next year. Now it is frozen and barren, but hope is burning under the ground.
Hope of spring, hope of new seeds, hope of new life in the next season.
What does all of this have to do with Ashlyn? I will not entertain my exaggerated, miserable thoughts of the future! I will believe in God’s goodness! Hope is burning in my heart, under the surface. Hope to sustain me through this day, this season. My hope is Jesus.
Ashlyn is a senior this year. I don’t know how to graduate her from home school, but it is going to happen! She has been learning more each year, although she cannot read or do simple math. She remembers so many facts that we have studied, yet she often refuses to give answers. She enjoys time with friends and family yet gets nervous in social situations.
She needed to get an ID when she turned 18. She behaved very well at the DMV and could sign her own name! I felt so proud!
Ashlyn’s braces that help her to stand and walk began rubbing on one of her ankle bones. Finally, it was so painful that she couldn’t wear the braces anymore. She had to crawl everywhere she wanted to go, which is what she prefers to do anyway. I took her to a new foot doctor who was highly recommended. I was very underwhelmed with the experience. After a brief look at the x-ray and a glance at her foot, he was ready to sign her up for another surgery (which is probably the only long-term option).
I am not ready to take her through another surgery! We simply had new braces made and are hoping this will allow her to walk without pain. She must always build up her endurance to new braces, but she can almost wear them fulltime now.
The doctor did give her a referral to Physical Medicine and Rehabilitation. The doctor there was wonderful, and I left the appointment with the stirrings of hope growing in my heart. She did what every parent of a special needs child NEEDS a doctor to do.
- Listen with interest and compassion while we tell our child’s medical history and story.
- Approach our child with kindness and respect.
- Look at our child’s body as a whole unit, observing how each part effects every other part.
- Give us small, defined measures that we can take to improve the situation.
We left with some targeted exercises and some encouragement!
Someday Ashlyn’s body will be healed. Someday she will be free. Now she only sees in part, but someday she will perceive it all. I don’t know when or how, but Ashlyn will have wholeness in her body, soul, and spirit. Although her quirky habits and ways of speaking can be wearing on our nerves, and her disabilities can be shackles on our freedoms, I seek to value her as God does. She is perceptive, caring, peaceful, and content (most of the time). She is a JOY!
I can hear Jesus saying in Luke 14:12-14, “When you put on a dinner, don’t invite friends, brothers, relatives, and rich neighbors! For they will return the invitation. Instead, invite the poor, the crippled, the lame, and the blind. Then at the resurrection of the godly, God will reward you for inviting those who can’t repay you.”