I would like to say that having a disability and being a mother, are two unrelated characteristics about me. Unfortunately, just like all other facets of my life, my role as a mother is directly affected by FA (my disease). Some aspects of my parenting style are the same as they would be, but even those, practices and beliefs, are held differently then I would carry them if it were not for my disability.
The hardest part for me in being a disabled mother is commanding respect from the world around my family. Lack of eye contact whether it be a doctor, a waiter, or a sales clerk, is a problem I face, every time either of my sons and I leave the safety of our home. Yes, I get it at bare minimum there are three people in every exam or fitting room, and that in itself is hard for people to process. But making eye contact with everyone and anyone else, even after the roles have been made clear is not empowering. Neither is it appropriate to ask a child, I am with, what I want for dinner or how long I have had that cold.
Let me make this crystal clear, I am a very active parent. I understand how people question that statement when it’s not like I am running after three-year-old up a grassy hill. However, I do everything I can with and for my children, and when it comes to an activity that I can not carry-out or safely teach my children to do I will call for reinforcements. For example, I find it a must for both my children to swim, not only because I no longer can and it a safety issue that my kids can, but also as a parent I think that swimming is an amazing and fun part of life. So I recently researched and signed-up my younger son for his first swim class. Meaning, I had the idea, found the number, and with that number and my debit card, my sister spoke for me and registered him for class. (I have a very difficult time getting people to understand me over the phone, because of my quiet and unsteady voice.) Step one completed only 100 more to go!
When it actually comes to us attending said class. There are more planning and accommodations needed. I have to secure us a ride to and from the lesson, every Tuesday afternoon for the next 10 weeks. Then I have to have someone stand (no pun intended), in for me in his Mommy and Me class. Referring back to my previous post, I have a strong support system. I am of course very lucky to have excellent friends and family. I have developed skills having to do with planning, timing and being able to draw from people within my support system in order to get the job done and done as close to the way I would do it.
Not only does being a disabled mother require dubious amounts of leg work, but the ability to watch your child do an activity with some else. Over the past 16+ years, I have learned to squash the selfish feelings I once had that my son is having fun without me. Instead, I am able to watch my sons and whomever (more often than not my sister) do an activity and remind myself that they are able to enjoy this because I made it happen. I will not allow my sons to lose out because of my disability, but instead, they thrive because of my abilities as a mother.