An Open Letter to Mothers with a Disability

On this day of celebrating the triumphs and joy of motherhood, we want to wish all parents and mothers a wonderful day, and thank them for all of the work that they do. This blog was written by Terri-Lynn who is the mother of an 18-month old daughter, and uses a wheelchair. In this open letter, Terri-Lynn shares her experience, including the challenges and guilt that can arise as a result of societal pressures and opinions toward parents with disabilities. 

To all of the disabled mothers and parents on this day, I want to let you all know that in my mind and in my heart you are loved, you are loved, you are loved.

In a world where disabled parents are constantly questioned by ignorant others who ask, “is that child yours?” I feel the heartache of that….

In a world where disabled people are told that their genes are dangerous or unwanted, I am sending love.

In a world where you are told that your role as parents is unwanted, undesirable, unlivable, inconceivable, irresponsible, and selfish, I am sending love….

In a world where you may be told that you are a burden to society and to your own children, I am sending love….

In a world where disabled parents are often subjected to violence in the form of cutting words and myths, I am sending love.

In a world where your parenting role is validated, praised, and valued I am sending love and hope that others in the world can get to that place as well.

To all parents with a disability: I hear you, I see you, and I am holding a space of love and hope for a world that honors disabled parents and disabled women on Mother’s Day. 

I am a single-choice mom and a wheelchair-user of a 19 month old little girl. I love my daughter deeply, and we have conquered many challenges together. On February 1st of this year I sent out an SOS on Facebook for help. In hindsight, I’m unsure why I sent this particular SOS because I was offered help but ironically, I did not have time to respond. However, I do know it made me feel as if I was doing something to maybe change the course of a very bad day. 

My day went as follows: our nurturing assistant did show up but she had to leave early. All was well but Jaycie didn’t nap at all that day and by 2:30pm all of the contents of my daughters’ lunch of chicken pasta in tomato sauce and rice pudding were on the floor. I left her momentarily with some crayons and a coloring book to go pee and in that minutes long period of time the tomato sauce and rice pudding were all over the floor and the wall mixed in with toilet paper in a fantastic piece of 15 month old paper mache art. My efforts to clean this all up were met with more mess in the kitchen by my 15-month-old artist. I was about to lose my mommy-mind so, after I cleaned up my little girl, I told Jaycie we would put on her shoes and go for a walk in the halls and in the lobby. She agreed, as she is a talented runner. All was well. The day was getting better I thought, but then….

My little girl got stuck in an elevator by herself because it got jammed and refused to open. I could hear her in the elevator, but the door would not open. I yelled out to my neighbours when it appeared that the elevator went to the parking garage. The security guard was nowhere in sight. One neighbour went downstairs to the parking garage by foot; the other one called 911 to say my kiddo was stuck, alone, in the elevator. A third neighbour who was just coming in from the parking garage picked up Jaycie and brought her to the lobby. When she saw me she was laughing and was all smiles. My heart had to be revived.

In this story, on this day, all was well. But there are deep moments of guilt within that story as a wheelchair-using momma. Starting with… well if my legs worked I could have run down to the parking garage myself. If my legs worked, and if only I had enough depth-perception to drive, I might know where the parking garage is (I’ve actually never been there!). If I had more balance I could and should mop up the tomato-sauce rice pudding toilet paper-mache mess off of the floor. But, in the absence of that, most of that mess will be there in some form until tomorrow when an able-bodied person using able-bodied tools will, and can do it. None of this would have happened if we could just take the stairs!

And the very worse thought of all….yes the elevator obviously malfunctioned, that could have happened to any parent regardless of ability, but what if Jaycie went into the parking garage and because she is so small and so unexpected in that in that environment…what if she had been hit by a car!?

This is my experience of deep guilt as a disabled mother. It’s actually hard to write about.

Since the state of emergency in Toronto my extremely happy, and engaged child has become distressed some of the time because the loss of daycare and going out to play spaces and seeing friends is not possible. For the first time, I am seeing my child struggle with boredom.

And I…. love the privilege of being her mom and at the same time I’m an exhausted woman. Due to a spinal condition I am not supposed to lift anything over 20 lbs. Jaycie is well over 20 lbs and I lift her all of the time, and now many more times a day, due to a lack of her wonderful daycare. As a wheelchair- user you can’t lift anything with your legs to offset the weight as is the ‘safe-lifting procedure’ for folks with more mobility. 

And without writing a very long essay. I need to say to disabled parents and to anyone who might listen and might care that the disability community and disabled parents have been largely overlooked and forgotten in this pandemic and that is a weighty truth.

A few days ago, Jaycie was very direct in reporting “I not bebe.” She also absolutely burst into tears in the lobby a few days ago when no one would hug her or pick her up. This was a regular highlight for her and for me before the pandemic hit.

In an effort to be ‘a good mother’ I am not imposing any kind of additional changes in my young child’s life at the moment. For example, a pediatrician recommended that we give up bottles just before  the pandemic and I’ve chosen not to do that because it might represent  another loss for my child. Additionally, My child has some toys that she has grown out of including a push-cart that she doesn’t need because she runs and has great balance all on her own. But because she loves her push-cart, I’ve not rehomed it yet.

What I have learned in this time is that I am incredibly strong. My child just had her 18 month doctors appointment and from the point of view of that visit, Jaycie is doing great. My child is strong and resilient, and wildly intelligent and funny. I am always-already reminded of how deeply human we all are from the late night feedings, and deep mother-guilt. Occasionally my child wakes up at 3:00am just to attempt to tell me a story or sing Old Macdonald and that is to be cherished. There are also my own wild nightmares, body pain, the limits of my body faced with the limits of the pandemic and the limits of a toddler’s body-mind. There is my own mind and my own wild nightmares. And in being human- at the end of the day- there is hope.  

I have also learned that I should never have quit drinking coffee.