This is Part Two of an Interview Series called “Moms Living with Disabilities.” If you missed Part One , please check it out when you get a chance.
This is Dee’s Story
Please briefly describe the disability or challenge that you have (what’s your official diagnosis)? Did you have it before you became a mom?
I was 28 and pregnant with my first son when I was diagnosed with a form of Macular Degeneration called “Starguards.” It is a deterioration of the retina resulting in the loss of my central vision, meaning I can see everything in a whole but can’t make out details or see very far away. I am legally blind.
At the time, I worked as a bagger at the grocery store and drove, wearing glasses/contacts. I got in a minor car accident and lost my license. When I tried to renew it I could not read the eye chart which urged me to see a specialist. I continued to work nights while taking care of my son in the day and my husband now drove me.
Two years later I became pregnant with my second son and during so I became unable to see close up. To read I had to use a magnifier. At this time I discovered I was eligible for social security, so after my son was born I quit my job, which was nice considering I now had a toddler and a baby.
How do you portray your particular disability to your kids? In what ways do you think it makes you a stronger mother?
Being able to stay at home with your little ones is a true blessing. As time went on, my first started school, luckily we live in walking distance to the school. I did what I could to volunteer and the teachers were very nice working with my restrictions of vision.
Then my second started school. I love being a stay at home mom, walking my kids to and from school, being able to volunteer, having this time to watch them grow.
What sort of help (if any) have you needed with raising your kids? Have you found people to be willing to help or do you sometimes struggle to find the help you may need (if you need help)?
I do have a great support group of friends that will pick me and my kids up to do things. I have my dad who will drive me to the store, doctor appointments and whatever, and my husband of course.
What kind of challenges as a mom do you face on a day to day basis because of having a disability?
My disability does not really affect my parenting capabilities. One thing that is discouraging and disappointing is that I can’t drive. I can’t just take my kids anywhere and do anything. We do things locally where we can ride a bus, walk, or ride bikes, which is not terrible and can be fun, but gets kind of old. But we are lucky to live where there are fun things to do, and we are near all the schools clear through high school.
What bothers me the most is having to read with a magnifier. When my kids were little it was, and still is, challenging to just sit and read a book to them or to help them with their homework.
It’s also hard to see things like my kids’ ball games and plays. And it’s hard to recognize people I’ve known for years, especially my kids’ friends.
What positive things has your family experienced because of having a disability?
They have always been very sweet and understanding of my limitations. In this they have learned to be caring and compassionate and not to judge others or make fun.
I am now 43. My boys are in 6th and 9th grade. They no longer need me to walk them to school and back, and I no longer volunteer. Although they still need me in some ways, they are very self sufficient.
What do you want to teach people about having a disability like yours (if anything)?
I’m starting to feel I no longer have a purpose (raising small children). I do get down about my situation.
Would I like to have a career? YES.
Am I sick of walking or having to rely on other people? YES.
Is it embarrassing to use a magnifier to read in public? YES.
Do strangers tell me on a daily basis I need to get glasses because I look close at things and by looking at me you wouldn’t know I have a disability? YES.
But then I think of other people and children with disabilities, some far worse than mine, and I realize how thankful I am to have the vision I do have, as imperfect as it is, to see the world, and watch my children grow and to be as independent as I am.
There is no cure or medication. It is a genetic disorder, although I’m the only one in my family that has it. So far the kids are fine, and there is no way of telling if they will acquire it.
What’s one piece of advice you’d give other moms who have a disability?
Be thankful for what you have and Love who you are.
Please feel free to leave any encouraging comments for Dee.