Holding Hands with Motherhood and MS

This Mother’s Day, we want to recognize the resilience and strength of all mothers affected by MS, like Elizabeth. Whether you are a mother living with MS or a mother of a child with MS, we truly appreciate the special difference you make in the MS community and in all of our hearts. 

Guest post by: Elizabeth Agnew

Before I was a mom, I would dream about holding my child’s hand. It seems small but thinking about it makes me sad sometimes because I don’t often get to do it.   

When I taught kindergarten, little kids would always want to hold my hand. It was something that made me so happy. The cutest thing was going on a trip with a kindergarten class, asking the kids to hold each other’s hands, and them grabbing mine too. I assumed that when I had my own child, I would be doing the same with them.

When my son Oliver does hold my hand, inside I’m glowing, but the times are few and far between. I need my good hand for my walking stick to keep me up, and my other hand is not nice to hold because it doesn’t really grasp when it needs to. It’s less of a hand to hold and more like one that’s slowly slipping out of a mitten –  limp, lifeless, and cold. It’s not a hand that he can trust to catch him if he slips or to pull him to safety. The hand is attached to an arm that is too weak to lift him up. I can’t trust my body to keep him safe, so I’m not surprised if he doesn’t want to hold my hand sometimes. His other options are more appealing. My husband, Neil, can carry him, throw him, and lift him up, and grandma is always warm (and it’s grandma, so there isn’t a need for a reason). But it still makes me sad. 

For preschool drop-off and pick-up, he holds his dad’s hand and I’m lagging behind because I walk slower. My emotional self makes Neil and my child seem mean. I think they are leaving me behind, but they’re just walking back to the car. 

My idea of what a mother is has really changed due to my MS. I’ve only had to adjust MY expectations though, because my son didn’t have preconceived ideas. Things I previously coveted like carrying my son, running and being ‘active’ with him, and scooping him up when he’s upset only look different than what I had imagined. I can snuggle, ride my Alinker mobility bike, and get down to console him. I can’t crawl around in soft play and inflatable parks, walk him up big staircases, or jump on trampolines, but I can witness the joy in his eyes when he does. 

The inevitable shift from being a vessel, to sustaining the life of a newborn, and then a bystander watching my son grow has been the most surreal, fulfilling, and agonizing experience. Being his mother has been the greatest experience of my life. I’ve loved watching him grow, learn, express all his emotions, and freely be himself. All the while feeling the emotional mess of joy and heartbreak as he grows towards independence. 

Being a mom is hard and adding MS to the mix feels like a cruel joke. But despite the lengthy list of negatives, MS has forced me to slow down and notice all  the good things in my life. It’s hard, and  I try to focus on things I can do instead of being sad about my cold hands and shaky legs. My son will grow up to be compassionate, sensitive, and patient. He already is–as much as a 4-year-old can be. 

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