By Kathleen Walters
I was so excited to be pregnant. My husband and I had been married four years, just enough time to be “prepared” for a first child. With a degree in Child Development and years of teaching preschoolers, I had every confidence that raising a child would be amazing and nothing I couldn’t handle. The first trimester was pretty typical – I swapped stories with other moms about smells that made me nauseous and having to give up drinking milk entirely.
But around that three-month mark, I started bleeding. I was assured by my gynecologist that it was not uncommon, and I had nothing to worry about. I would stay home from work a few days, return to work for a day or two, only to have the bleeding start again. By 20 weeks, I was in the hospital on bed rest. One week later, contractions started. I was given Demerol to calm my shaking and sobbing, and then there was the talk.
I had a choice.
The Demerol had caused the baby’s heart rate to slow. I could have an emergency C-section four months early, or I could let her go. Just let her die without giving her a chance to live. This was my choice. It was between me and God. To be honest, I don’t know that I even consulted Him. I wasn’t going to let my daughter die. It was that simple. I would bring her into the world and let God decide if she should stay.
We named her Lauren Carole.
I loved her in a way that only a mom can know. She was born one-and-a-half pounds with dark brown hair. When I came out of surgery, I had a fever and wasn’t allowed to see her for a couple of days. It was torture. When I was finally able to see her, her skin was red and her eyes, I was told, had not yet opened. But when I spoke to her, she opened her eyes and looked straight into mine. I knew she would be okay.
The nurses in the RNICU were amazing. Her continuous care nurse cared for her with the fierceness of a mom and made sure Lauren had the best care and the best doctors.
The overwhelming joy I felt when I first saw her was quickly replaced with an equally overwhelming sense of guilt. Had I made the right decision? She had IV’s in her tiny body, she was hooked up to a ventilator, and every day they had to cut her heal to do a blood test. She screamed and cried but didn’t make a sound because of the tube down her throat.
Had I been selfish? Had I only thought of what I wanted and not about what was best for her? Was I the cause of her pain and suffering? It was the longest and most difficult four-and-a-half months of my life. Having to leave the hospital without her was just the beginning. I spent the first two months, each day, at her bedside. I only left her to eat in the hospital cafeteria and to go home to sleep. After that, I went back to work; we needed the income. When I wasn’t at work I was at her bedside.
In her first four months of life she would barely survive pneumonia and heart surgery. By four-and-a-half months, and by God’s grace, she reached 5 pounds and able to come home. June 20th, sunny and warm; the single best day of my life.
Lauren was diagnosed with cerebral palsy at 18 months, and by age 4 was having her first of many surgeries to release the tension in her legs. Because I worked in childcare, Lauren came to work with me. I worked full-time, at work, and at home. Still, we were struggling financially, and my marriage was deteriorating
Everything fell on me.
We divorced when Lauren was five, and then I was truly on my own. With family an hour away, and my sisters all having kids of their own, I had little support.
For the first few years, Lauren would stay with her dad every other weekend, and I worried the entire time. Eventually he would remarry and have more children, his “new family”, and Lauren’s care was no longer his concern.
I tried to create normalcy.
When you have a child with disabilities, you feel every milestone that should have been. That could have been. There would never be first steps, or sleepovers with friends, or prom, or getting a driver’s license.
Don’t get me wrong, I’m grateful for her abilities. I cried tears of joy when she said her first word, mom. And since then, she hasn’t stopped talking, except when in school. I tried to give her as much normalcy as possible. I threw birthday parties and had her cousin’s sleepover on occasion. School was a Godsend, consistent, and a source of socialization. It also allowed me to continue working.
I generally felt good about her schooling – with a handful of exceptions. There were times I was just exhausted and too overwhelmed to really advocate for her. But there were times when she was treated unfairly, and I stood strong. I remember calling a teacher and saying,“Wait a minute. Are you going to tell her she can’t go because she’s in a wheelchair? Because I’m not!”
I wouldn’t allow her to miss school outings and camping trips because of her disability.
But there were things I wasn’t able to give her. I didn’t have a network of moms that I had things in common with. There would be no playdates or sleepovers. Instead, there were trips to physical therapy, occupational therapy, pool therapy, hippo-therapy (horseback riding), doctor’s appointments, neurologists, endocrinologists, surgeries, and hospital stays.
Our life was full and busy.
I worked full-time, taking off when I needed to be with her. Her dad was minimally involved after our divorce. He would take a week off for her surgery and visit her once. I knew early on that I was on my own in this. You just get up and do what needs to be done and make the best of things. Lauren was happy, and talkative and loved all those things that children enjoy – books, music, riding the school bus and field trips. We carved pumpkins in the fall and I would put up a real tree every Christmas. In the Spring, I would hold her and help her take a few barefoot steps in a puddle after a warm rain. I miss that skinny little girl with thick brown hair who loved to “westle” with her mom.
Now, at 29, Lauren lives at home with me and my husband of eight years. We live in the country where access to respite care is almost non-existent.
The older I get the more I worry about what will happen to her when I can no longer care for her. On particularly hard days, when I’m changing her or getting her showered, my internal voice says,“Who will do this?”
Who would want to do this?
I can’t ever leave her.
I’ll be doing this when I’m 80 and then what?
It’s exhausting and not just the physical work, but the emotional and mental fatigue of these thoughts swirling. In the past few years, I’ve learned of two families, similar to mine, that ended tragically. A single mom, caring for her daughter with disabilities, learned she had terminal cancer. With no one to care for her daughter, she took her daughter’s life and then her own. Years later, a father took his son’s life and then his own. His son had severe disabilities.
I was reminded last night, of another painful part of parenting an adult with disabilities: the dreams. I often have dreams where Lauren is away from me and I can’t get to her. Last week my dream was that we were at a pool and somehow, she was lodged at the top of the pool slide. If I couldn’t reach her, she would slide into the pool and drown. I made it up the ladder and was able to reach her, but she was too heavy to pull up and there was no one around to help me. Last night’s dream was that we were at some strange resort and the “kids” were separated from the parents to do activities. A fancy dinner was prepared for the parents, but I was searching for Lauren and the young adults in charge of the kid’s activities couldn’t tell me where she was or when she’d return.
These dreams are always horrifying, and I wake feeling exhausted and terrified, reminded that I won’t always be there to protect her. What will happen to her when I’m gone?
Everyone who has been was close to her, who cared for her when she was a teen, has moved on. They graduated and moved away, or got married and have children of their own. Lauren stays the same and misses them. I have a large extended family, sisters, nieces, and nephews, cousins, but Lauren has no true siblings that might one day oversee her care. And no one in my family has communicated interest or concern for her care down the road. I’m not angry or hurt, they have lives, kids of their own, and I get it.
So, I continue to do what needs to be done every day and now and then tell myself to develop a plan. As far as I’ve gotten with that “plan,” is a folder on my laptop labeled Lauren’s Care. There are doctor’s numbers and phone numbers of friends and descriptions of some of her needs. And so, I do what I can for now and try to think positively.
I still own the condo that she and I lived in together before I married the third time. She loves it and could live there someday, with a roommate. She would be far from family (about an hour drive), but in the city there are more care providers and there are many people there that know her, like past care providers that could check in on her, that sort of thing. And, she does have some connection with others her age with disabilities. She participates in Music Therapy with a group at Michigan State University and is part of a sports team in our home county through National Disabilities Sports Alliance. I have been able to give her a rich life, and will continue to, as long as I am able.
The pandemic has changed some of what she can do for now – normalcy is out of reach for most of us. I do know how fortunate we are and that sustains me, I’m luckier than some. We still have each other.