One of the most challenging realities of caring for my daughter with disabilities is thinking about the future. To look too far down the path becomes overwhelming. Daily demands keep me from spending too much time pondering it, but all the uncertainties immobilize me.
Who will take care of her when I’m gone? How could I ask my other children to suspend their lives to care for their fully dependent sister?
To answer these questions with, “I’ll trust God has it figured out,” quiets my anxiety, but it doesn’t keep them from slipping into my thoughts. I’ve always relied on my fierce advocacy skills to get for my daughter what she needs. But as I age, my body reminds me that I cannot wait to plan until the day where I no longer can plan.
For many years, I depended only on myself and would not allow anyone else to take care of my daughter, Alisha. Denying the fact that I actually have human limits helped me stay on a road that was always taking new turns.
About seven years ago, my daughter had a student teacher who needed to interview a parent. In our conversation I learned she had returned to college to get her degree in special education after her son with disabilities died several years earlier. She also shared about a charity she had been working on to provide respite to families who have children with disabilities.
I briefly imagined a week without tag teaming with my husband for our other kids—a week of enjoying beaches, hiking, and roller coasters together. I banished the vision quickly, because dividing my family would mean allowing another broken piece of my dreams to fall out of my grip. I told myself, “I’ve got this thing.” But I did think how wonderful it would be to provide respite care for those who really need it.
A few years passed and Alisha was assigned a new teacher named Jackie. I wondered if this was the same Jackie who had done student teaching in Alisha’s room. Sure enough, it was. Jackie told me how her charity came to fruition. She gave me the website to apply. Thoughts of taking a break from middle of the night vomiting, seizures, and the rigors of physically caring for a hundred pound pretzel sounded inviting. I let it go because, “I’ve got this thing.”
Jackie transferred to another school district a year later. The flaring tendonitis in my elbow, too many sleepless nights, and a hundred other reasons caving down on me prompted me to pick up the phone to call her. The seed of respite slowly broke down the weed of pride. I needed help. She directed me to apply and we were quickly accepted. The next step was to find caregivers from the agencies the charity worked with.
The prospect of taking a trip with the other kids seemed both enticing and sad. I told my other daughter about leaving Alisha home for our family vacation. Her downcast face almost made me rip up the paperwork. She couldn’t imagine a trip without her sister. I told her Alisha would be cared for at home, and we would be able to experience some things we never had before. I realized the world of disabilities had made all of us hyper-focused, unable to imagine anything different.
Finding caregivers proved to be a daunting task. Every avenue turned into a dead end. After nine months of hard work trying to lock in caregivers, I only had one. I needed at least one more for us to get away for a week. I began doubting whether we should be doing this. Our trip was only a month away. I awoke to a sunny July morning resolved, “Well, God, I’m not worrying about this anymore. We either take Alisha with us or we don’t go.”
Later that morning, during my son’s swim lesson, I sat on a lounge chair listening to the chatter of women around me, and perked up when I heard one talking about being a nurse. We were specifically looking for nurses due to the type of care our daughter required. I said to God, “OK, I’ll go. I’m not above this.” I approached the two women explaining my plight. The nurse I heard talking apologized to say she could not help me because she worked full time. The other woman jumped off the lounge chair and said she, too, was a nurse and would be interested. She said her neighbor was also a nurse and she might be interested too.
What a transformation God began in me. I went from not allowing anyone to care for my daughter to total strangers coming aboard. Sinking the ship of pride paid off.
The first family vacation without all our family provided rest my tired body needed, both mentally and physically. We went to the beach together. We climbed dunes and hiked. We took a tour through a museum and rode roller coasters together.
This tiny step of separation gave me something I needed more than rest. It gave me a long view of our daughter’s future in a bite size rather than an enormous chunk. I didn’t have to put her in a group home—I only needed to dare to trust others with her care and relieve myself of thinking I needed to be everything to my daughter the rest of her life. It was an opening big enough to see that God’s got this.