Elizabeth Traub shares how her son Ethan’s special needs helped her re-frame her thinking and change her life.
To learn that you have a special needs, handicap, deaf child is the most powerful journey I have ever been on. Ethan, who is almost 11 years old is an amazing young man. Life is very normal and easy with him. It was not always that way. He was born with a condition called “Enlarged Vestibular Aqueduct”. I could see early on that “something” was not quite right. Only I was unsure of that “something”. He never startled as an infant, slept 20 hours a day, and fixed his eyes on me. I used to say, “I have birthed an Einstein.”
When Ethan was 5 months old, his condition was confirmed. This news came to me, while we were shopping in a fabric store. He was in an infant front pack and there I was standing at the check-out counter crying my eyes out. My husband called me with this news. Ethan has these stunning blue big eyes and that sweet baby just looked into my crying face with a drooling smile. His world was perfect and mine had just been shattered. I immediately began asking myself questions. No family history, what happens next? He was already learning how to do baby signing so I thought this was going to be easy. The moment I realized that my baby could never hear me singing to him is when hard really started. It was that moment when I cried almost every day for many years.
I was angry. I was mad at God. I questioned my healthy lifestyle. Was I too lean, should I have forced myself to swallow prenatal vitamins? Did I do this to my baby? My thoughts were all consumed daily of his care, his appointments, and his therapy. I was depressed and ate myself into 85 extra pounds. I cried every day and I was distracted away from the care of my husband and family. I tried to work through the loss of that hope I had for this beautiful boy. I was desperate to find a reason that did not reflect on my mothering. I was lost and alone.
I was angry that my husband went off to work each day leaving me to endure the challenges. That little baby boy grew into a toddler that was angry and frustrated. He could not hear my voice around a corner. When he could not see me, his volume was loud. When he wanted something he was even louder. Car rides were intolerable. I was angry and felt I was doing all the work with therapy. I thought my husband should be more involved. He worked 10 hours days at a demanding job. His energy was gone before he pulled into the driveway at night. Even though my husband was grieving, at that time I was only thinking of myself.
One afternoon I called his office and said, “I need some drugs, depression drugs, coping drugs.” I had never been on any kind of medication, so I did not know what I needed. He kindly spoke into me, “This is situational and you are going to be fine.” That evening he showed up with my favorite wine to have when I couldn’t cope. This was his way of saying, “I know it’s hard & we are going to get through this.” Just having permission to sip a glass of wine at 10am was enough of a drug. Funny thing is over a years’ time I might have done that once.
I didn’t know how to communicate my needs, which made it hard on friendships. We had a fourth child, I was tired, and it was too hard to even think of my own needs. Ethan was loud; people could not be around him. Friends were uncomfortable. and play dates that were scheduled over a few hours were cut very short. Slowly friends dropped off and I was very much alone. I felt isolated and accepted this as my journey and cross to bear. I was tired of having to explain over and over that he is deaf. It was exhausting. No one understood him. I felt I had to educate each person. I had few friends who could tolerate Ethan. Not even my closet of friends would come hang out in my home. I had to learn to have grace and understanding for them. It was not easy.
What I had to do was re-frame my thinking and my process. One day I realized that my identity and my structure of life must change. Ethan is a hard child. Hard is what grows us into something. I grew into a deeper, caring and understanding of the human soul. I took that time, leaving my job, work I loved, to understand and grow this boy into a functioning and healthy life. I embraced Ethan, right where he was. The therapist told me that deaf children have problems with balance, especially climbing and parks. I took that boy to the park almost daily. I was told swimming is hard and scary for toddlers who are deaf. He had swimming lessons.
Nothing about being deaf would hold Ethan captive in what he enjoyed. Having people express their discomfort & recognize the challenge in this journey. Doing this by asking questions to draw others out in their process. I began to trust others, and venture out with girlfriends. My husband encouraged many evenings out with friends, so I could have a break. I had to acknowledge my own needs. Most important was realizing that my life could not be dictated or defined by a special needs child.
Insights I learned with a special needs son:
- Ethan’s normal is not my normal. It’s okay to cry and it’s going to be hard to figure all this out.
- People that have not had a special needs child will not understand you. Take no offenses.
- You must take time away for you with alone time or girlfriends.
- Don’t allow the circumstance of a special needs child dictate how you run the household. The entire family is important.
- Have one on one mom dates w/each child away from the challenges. Today, almost eleven years later those one on one mom dates continue. Imagine with five kids how many dates I go on. Even my 23 and 25 year old look forward to those dates. You must stay connected with all your children no matter how much extra time or work.
- Your husband will handle this very different than you. Embrace his journey. Regardless of how tired, mad, disconnected you are with your man, treat him well. I am reaping the rewards and honoring and respecting my husband in those hardest and darkest of days.
No one signs up for the journey of a special needs child. Each has a story that is very different. My hard may look different than your hard. I would walk through this journey again to have that boy named Ethan in my life. He is that boy who sings, and can’t carry a tune. Who loves airplanes and history. His had Cochlear Implants that allow him to function beautifully in a hearing world. His story is still being written and he has much favor in his life. I am blessed to be his mother. That little baby an infant in my arms now as a boy hears me sing. We sing together.
Originally appeared at Raising Great Men