Deaf Blind Mother
Updated: Mar 5, 2019
I never felt guilty about my disability until I was diagnosed with Usher Syndrome and considered having kids.
Shortly after my diagnosis, my family and I struggled with questions of if I should have children. Any child of mine will be a carrier of the Usher Syndrome 2a gene, the most common cause of deaf-blindness. Depending on my husband’s genetics, my child could also be affected by the syndrome like me.
At the time, my mother couldn’t bear the idea of Usher Syndrome striking in the family again, robbing another child of hearing and sight. The shock of the diagnosis made marriage seem improbable to me, much less having a child with someone.
Thankfully, feelings have changed. I learned to live with less fear of vision and hearing loss. We connected with other people with Usher Syndrome and learned about inspirational success stories like Rebecca Alexander. Becoming a mother no longer seemed impossible after I met two friends with Usher Syndrome that are also wonderful parents. Marrying no longer seemed improbable after I met the love of my life.
My husband, Willie, and I are expecting our first baby in May!
While we’re so excited to meet this little person next year, I can’t help but feel this familiar anxiety come back. Are people judging us for having a baby without knowing if Willie is a carrier for Usher Syndrome? Am I capable of being a good mother if I can’t drive my child to the doctor or hear a cry from another room? How will it feel if our baby is born with Usher Syndrome?
Willie and I came to the decision not to do any further genetic screening for Usher Syndrome after answering the simple question “If your baby had Usher Syndrome, would you still keep it?” Of course the answer is yes. There are so many other scary unpredictable genetic disorders out there, why would we be afraid of a condition we know so much about? Plus, there are many studies and trials underway to cure or treat Retinitis Pigmentosa and Usher Syndrome. There is no better time in history to be born with progressive deaf blindness than now.
But, even though I know my child can live a great life with Usher Syndrome, will his or her life be that great with me as a mother? That’s where my guilt lies now.
In school or work, I compensated for my disabilities by putting 150% of my effort into everything I did. I’d wake up early and work long nights for projects. I’d sacrifice my weekends and vacations to review materials and learn new skills to make up for anything I could not do because of my hearing loss or vision loss. In college, I even tried to edit my voice in sound clips to make up for a slow speech pattern caused by my hearing loss and years of over enunciation.
As a parent, there are some things that I just will not be able to change with hard work. I cannot put in a few extra hours work to regain my ability to drive. I can’t change my visual field to make it easier to see a little toddler under my feet. I also won’t be able to change my hearing to make it easier to hear a baby’s cries at night.
A lot of these things we’re compensating for with technology and extra help. But, that comes at a cost.
The baby monitor system we’re planning to purchase is designed for alerting deaf parents will be three times the cost of a regular monitor system. It’s great, It has a pager/watch that lights up and vibrates in response to baby cries. It also comes with a touch sensitive mat that will let parents know when their child has gotten out of bed. It can also be programed to alert for smoke detectors and door bells.
We’re planning to install extra motion lights around the house to make getting up at night safer for me and the baby. Night blindness shouldn’t be a big concern in the house when the baby is here.
The biggest expense will be hiring an assistant or nanny to help me during the week. We live in an inaccessible area with no sidewalks, no transit, and no family nearby. Uber can be unreliable and unsafe for a baby, so we’re planning to hire someone to drive me and the baby places like the grocery store and the library a couple days a week. We're fortunate to be able to afford to hire extra help, but I can't help but feel guilty about not being able to take the baby to a park or doctor's appointment on my own.
I hate to think about if our child will miss out on experiences because of my hearing or vision loss. I also feel a lot of guilt about how much we might spend over time just to compensate for my disabilities.
I have a lot of anxiety and conflicting emotions about the future right now, which has made it difficult to update this blog for the last few months. I’m hoping these feelings of guilt start to go away soon, as they did after my diagnosis.
Thankfully, in the meantime, I have a great support system. Willie has been the best listener and is ready to do everything he can to help me and the baby … including converting his office into a nursery. I talk and troubleshoot with my mom everyday over the phone. She’s been an endless source of pregnancy knowledge and support. This is the first grandchild on both sides and the first great-grandchild for my grandparents. There’s a lot of excitement in both families for this baby’s arrival and we can’t wait to meet him or her.
If you’re in a similar situation and are feeling depressed or anxious, here are some positive thoughts that have helped me:
Someone on one of my online support groups told me “Try not to feel guilty for things that are beyond your control. The most important thing you need to do for your baby is being a good mother. The important issue is that you have a good support system behind you to help you when you need it. And if you can do that, then you have nothing to be guilty about”
One child of blind parents wrote in the Guardian that she may be unusually observant because of the experience of providing a running commentary on the world for her parents.
Children of parents with hearing loss can learn to be patient with questions and repetition.
Kids are resilient and smart. Children of blind parents can offer to help their parents with navigation at an early age!
Technology is evolving. Hearing aids, cochlear implants, autonomous vehicles and medical research will be more advanced five years from now than they are today,
You are not alone. Reach out to your disability community online or in person. Some support groups I recommend are : Beyond My Battle, Cochlear Implant Experiences and the Usher Syndrome (of America) Support Group on Facebook.