The Neverending Marathon: A DHH Plus Mom’s Need for Community

by Kristen Stratton

Have you ever found yourself sitting in your car, in the parking lot of your child’s school, anxiously awaiting the start of yet another IEP meeting, and trying to convince yourself that it will get easier someday? There may have been some ugly crying and some adult words thrown in here and there. That was me about 6 months ago. I was about to walk into my 8th IEP meeting in 4 months and I was DONE!

I generally consider myself a very resilient woman. I have survived a lot of trauma in my life, including the traumatic birth which led to my Deaf child having multiple disabilities. I am married to a U.S. Marine and have stood on the tarmac of the military base several times and sent my husband off to a combat zone, while pregnant and/or taking care of a new baby. I have advocated on behalf of other families for their rights and yet, when I needed to persevere through another confrontational meeting with a team who did not understand my child’s needs; I cried. I sobbed. Sounds roared from the depths of my soul and I just looked up to the sky in anger. I really could not understand how I could maintain this stamina which life demanded of me. An average day consisted of waking up long before the sun, having spent most of the night with a restless DHH Plus kiddo’s feet in my face. I brew some coffee, sleepily kiss my husband goodbye, administer medications to my son and prepare to send my kids off to school. Come home, then it’s grad school, house work, advocacy work, military wife duties, volunteer work, then pick up the kids, drive to speech therapy, OT, hippotherapy, ABA, Deaf Mentor sessions, dinner, dishes, laundry, baths, bedtimes stories, tucking in kids, kisses and lights out…for everyone else but me. Then grad school homework, IEP exceptions letter writing time, or legal research into IDEA and Ed Code standards…all to the sweet hum of a snoring husband and intermittent kicking of a sleeping child.

Don’t get me wrong; I love my family and I am so grateful to be their mom and wife. What I am saying is, I am human, I am not a machine, and I am tired. I feel like those of us who are the primary care takers for our DHH Plus kids rarely catch our breath. I imagine running a never ending marathon, only there are no water stations and no one cheering me on. The only motivation I have to keep going is the oppositional defiance which won’t let me give up so the “system” succeeds in continuing with their “business as usual” of stomping on DHH Plus rights. The other motivation is LOVE. Those nights when I am up when most of the able-bodied world sleeps, I sit awake and look my beautiful boy. “Isn’t he perfect?” I will often think. How can something so beautiful be from someone who feels so broken. The fighting all the time for everything makes me feel broken. Which is why I sat in that parking lot; defeated, and I cried. I didn’t just cry from the exhaustion of all the advocacy up to that point. I cried because I knew it would never end, and if I don’t change the world in my lifetime, who will carry the banner for my son and those like him? Who will ensure he is loved and safe and respected and communicated with and given dignity? Who?

If you are reading this and you’re an educator or medical professional…remember these burdens we parents carry. If you are a parent of a neurotypical child who only has hearing loss…remember those of us whose greatest fear is outliving our kids and remember those of us whose greatest fear is “who will care for them when I am gone?” Your DHH plus families need you to remember them. We are joyful in every milestone; we are overwhelmed by joy with each smile or sign approximation. We make up almost half of your entire DHH community. Yet we very often feel like we are running a marathon alone. Show up for us too, won’t you? Cheer for us. Advocate alongside us. Please remember each time it was you who was sitting in that car, alone, defeated, and trying to find the motivation to put one foot in front of the other to go to yet another meeting where no one understood. For too long, our community has fought for our children to succeed within a system that doesn’t value them; they still don’t. Yet, the DHH Plus families still fight to be seen by our own DHH community. Please run the race alongside us, value our stories, value our battles, value our insight and wisdom. Maybe then someday, the next generation of DHH Plus parents won’t feel like they only have love to run on. Let them have community too.