My story, is probably similar to so many other people’s stories. I know my struggles are my own, but also I know others have been through worse than I have. My story has made me into the woman I am. As messy and scary and beautiful as it has been.
I grew up in Spokane, Washington, between my moms house and my dads house. My parents split when I was young and I saw a lot of fighting between them beforehand. My little brother was born when I was 5, my mom worked nights and I helped the babysitters care for him. I knew from a very young age that I had a very caring and nurturing side to me.
I had to grow up pretty quickly, going between homes and being the older of two, daycare being expensive and my parents relying on me to help with my brother, going through a pretty significant trauma at 16 and having to switch high schools my senior year, moving out at 18 and having a baby, a disabled baby, as a single parent at 22.
I’ve spent the majority of my young adult life living paycheck to paycheck making ends meet, working multiple jobs. And when I was 21 years old, I lost a cousin to suicide. That day, everything I thought I knew about life suddenly didn’t make sense anymore. And shortly after that my son was born and my world flipped upside down.
I had prepared myself to be a single mom… I had it. I raised my brother when my parents weren’t around, and I was strong and independent… but I wasn’t ready for everything that was about to come my way as far as learning, grieving, being emotional, developing depression and anxiety, and constantly living in fear.
My son was born in 2009. He looked as healthy as could be. The newborn hearing screening was the very first time I’ve ever felt a fear like I experienced that day. To hear “something isn’t right, maybe it’s just fluid but we need to do a cat scan,” about my newborn. Two weeks later we did that test and I found out my son had hearing loss and needed hearing aids. We got those and got him setup with an ent and an audiologist. At 3 months, my son had seen more specialists than I ever had.
Close to a year went by, and I had noticed he wasn’t reacting to sounds anymore. I would bang pans next to him and he wouldn’t flinch. We went back and did another cat scan, and found out he had lost all of his hearing and needed cochlear implants… and his brain has developed abnormally and he would have epilepsy. My heart broke. Worse than it did the day I learned about his hearing. And we couldn’t see a neurologist for 6 months. Right after that, I was lying awake one night with a terrible feeling, and heard a sound no parent wants to fear, my son was gurgling and when I ran in he was convulsing. Barely a year old and he was seizing.
We Spent many nights in the hospital and finally saw a neurologist and learned my son has “polymicrogyria,” or in layman’s terms, “too many small folds of his brain on one side.” So for the rest of his life, he will be deaf and possibly non verbal, have tonic clonic grand Mal seizures, have right sided weakness and developmental delay.
This shattered me. I was 23 going on 24. Had this idea of a perfect healthy baby boy, that I had to grieve the loss of and instead accept the child I had. I know that sounds harsh, but I’m still grieving the child I didn’t have. And embracing my son for all he is.
It’s the scariest feeling thinking about what your child will have to face. Watching your tiny baby have a 6 minute seizure and know it won’t be the only one, and it wasn’t. He is on 2 medications a day, to control them. Sees a neurologist, an audiologist, an ear nose throat doc, an orthopedic doc and has regular speech, physical and occupational therapy as well as needing some behavioral therapy due to the brain issues and lack of communication.
He has come a long ways since then. He’s 10 now, he knows sign language. He’s happy all the time and extremely smart. He’s a computer whiz. He is in special needs classes in school because he can’t learn in a big class. It’s been a very long road.
He started PT, OT, and speech at a year. He didn’t crawl until a year and a half and didn’t learn to walk until he was 4. Now he can run (looks much like a drunk pirate or Jack Sparrow) can do stairs and uneven grounds but he still struggles with any distance… however those were things he couldn’t do just barely 6 years ago.
His determination is incredibly inspiring and he has taught me so much about love and life. I strive to be the best mom I can for him, and before my wife, I did it alone for 4 years. She came into my life when he was 4 and she took on a lot. Not only a child, but a child with multiple disabilities and I still can’t imagine how hard that would be.
Jumping forward a few years, I remember back to that first seizure, calling 9-1-1 and watching these firemen come in and ease my panic, take control of the situation and keep me calm. It took me a while to appreciate that because after that first seizure it was doctor appointment after doctor appointment, bad news after bad news for several years of his life. But that moment has always stood out to me.
I never knew what I wanted to do with my life. I set every goal and aspiration aside for my son. His life was more important, his health was more important, and him being at a point I know he’s ok before I pursue any dreams was important. I struggled with daycares neglecting him and having to trust people when he can’t speak for himself.
Within the last year I had a epiphany. That night I called 9-1-1 was weighing on me heavy and it came to me, that’s what I want to do. I’ve been given this life for a reason and I’ve always been a caring person that loves helping others and I’ve seen a lot more than most have to and live it daily. So I signed up for school and did some ride alongs with the fire department and my very first call was a single parent with his baby having his first seizure and I knew then and there, it came around full circle. I’m now a certified EMT going to work for the ambulance company and be a volunteer firefighter. As well as, we moved to Colorado 4 years ago, and it’s the only state that lets parents become a CNA for their child and get paid for it.
My life hasn’t been easy, by any means and I know there are families that have it much worse as far as kiddos with health issues or disabilities.. or families who can’t get pregnant. But it’s my story and I was given this life for a reason. My son has taught me unconditional love above all, patience, not taking simple things like the sound of the wind for granted, and to not judge anyone because on the outside he looks normal, but battles every single day to do the things most of us don’t even think about.
I found this company and the message you represent had me in tears. Most of the causes I’ve been able to relate to personally, and I needed to become an advocate. I’m a lesbian woman, a military spouse, a first responder and raising a disabled child. Life is hard, marriage can be especially hard, and marriage with a disabled child sometimes feels impossible… But I am thankful for every thing life has thrown me and to be apart of this company! And I cannot wait till I can get the “I love you” shirt 🤟🏻. I always dreamt of the day my son would look at me and say “mom… I love you” That day will never come for me, vocally. He mouthed the word mom once and my friends heard it but the day he looked at me and signed mom… my heart nearly exploded.
Then when he signed mom, I love you and hugged me I lost it and cried.
We have had our own language since the beginning ,but seeing him blossom and learn new things is amazing. Every hug or kiss from him says more than just that. If he sees us sad he runs over and hugs us and wipes our tears. Love is not the words spoken, it’s the love we share through body language and acts of kindness and how we display our hearts by saying nothing at all.
Story submitted by Ashley W.