#TheyTaughtMe: Wendy Johnson’s Story

What has having a child with a disability taught me? When I was pregnant, we learned our son had a condition that included multiple defects and a profound neurological impairment that would ultimately shorten his lifespan. Becoming Miles’ mother taught me more about love and trust than I could have learned in all my years alive. Having Miles was a journey of faith in many ways — faith that we could get through this as a family, faith that we would find purpose in his life and faith that God was with me on this journey. One of the more tangible impacts Miles had on my life is my ability to walk in others’ shoes more readily. His disability and what it took to have him, love him and then let him go left a mark on my heart and soul.

In addition to Miles, I have 5-year-old identical twins. They participate in many activities and are healthy, vibrant and loquacious little girls. Recently, when my girls were at a Pioneer Girls meeting, they witnessed an incident with another girl, Anna (not her real name). From the beginning, it was clear to me that Anna has sensory issues or Autism Spectrum Disorder. Her needs are many, and one of them is to avoid certain food triggers. One night, Anna ate the wrong thing at Pioneer Girls and went into a fit of rage. Out of the corner of my eye, I watched the mother calmly try to hold her while she was thrashing. I could just imagine myself as Anna’s mom. Later that night, I talked to my twins.

“Did you see Anna?”

“Yes,” they said.

I mentioned that Anna was different, like Sidney (not her real name) from our church. When Anna acts like that, she is not in control. We all talked about how hard it is when they have tantrums themselves, and that they did not like feeling that way. Then, we brought the discussion back to Anna and how she could not always help what she did. I said if they saw Anna acting out, they needed to remember that Anna needs someone to be her friend and not have people talking about her. I did not want to have the girls point to Anna and ask why she did something or have them do something that would make Anna or her mom feel bad. Five-year-olds do not have the concept of discretion down, so I said to my twins, “If you see Anna acting out, please do not point or talk about it; rather, say a silent prayer. Pray that Anna will regain the composure she needs; it must be so hard for her at that moment. Also, pray for Anna’s mom and caregivers — that they will have the strength to meet Anna’s needs and to stay calm.”

A few weeks later, we went on an overnight camping trip, and Anna was in another wing of our cabin. I was so proud as a mom to see my twins actively seeking Anna out and including her in all the activities. They invited her to join the group but allowed her the space she needed to participate in a way that worked for her. I heard my girls say many times, “We love Anna. She is really nice.” In talking with Anna’s family, it was apparent that they appreciated how my girls were interacting with Anna and inviting her into their activities.

I now see in many specific ways how having my son, even though he was only on earth for a short time, has made me a better person, and, in turn, is helping my daughters to be better people. For that, I am proud and honored to be Miles’ mom.

Had I not had my son Miles, I might not have become so introspective. I also might not have realized how much courage it takes for a parent or caregiver of a person with a disability to be in public. I remember how judgmental people were during my pregnancy and even how some people were mad at me for going through with my pregnancy after knowing Miles’ diagnosis. People can be very mean and judgmental when you are the parent of a child with disabilities.