Children and the People Who Love Them
When my daughter told us another grandchild was on the way, I was filled with mixed emotions. Yes, another baby would be sweet to hold. But with my multiple sclerosis and limited mobility, I recognized I would also be faced with limitations that I didn’t experience with the other grandchildren.
I have four wonderful granddaughters, ages 18, 15, 12, and one now not quite two. It seems almost a lifetime ago when the three oldest girls were born and I was also still working full time.
Doing more than I thought I could
Now I’m retired and along comes this sweet baby who has turned into a toddler and is as active as they come. While I was concerned at first that I wouldn’t be enough of a grandma to her, that has quickly changed. I am probably her best friend, after her mom of course. Thanks to the couple years of lockdown for COVID, she hasn’t had many opportunities to interact with other young children. We get to spend lots of time together thanks to a number of factors, including her mother’s employment.
True, I get to send her home with her mom to do the hard parts, but I’ve also changed my share of diapers and helped with lots of meals. On occasion, I do watch her solo with no one else at home. At first it was with trepidation, because I am also using a walker all the time, and my ability to pick up anything from the floor is quite limited. That includes hoisting a wiggly toddler.
My granddaughter has adapted to my limitations
I thought I would be making adaptations to be able to help with her, but it seems to be the other way, and my granddaughter has found ways to adapt to my physical limitations. She wiggles and squirms for her mom and grandpa, but is the most still child when sitting on my lap. We pass many hours singing songs, watching silly children’s videos on YouTube on my tablet, and just playing.
She is also my helper – when I drop something, which is quite often, she is willing to retrieve it and hand it back to me. She is mastering the English language and will actually get items for me as well if I ask nicely and she isn’t too preoccupied with toddler stuff. It has been fun to watch her skills grow as her brain develops at a lightning fast pace.
We’ve also spent a lot of time drawing and coloring with markers. I have almost mastered her favorite Sesame Street character Elmo, but I still need practice for the rest of her requests, especially her dogs. But it doesn’t matter to her as long as I get some eyes on a face, as she tells me who or what to draw. Story time is especially nice when she wants to settle in and read a book or two with me. I let her take the lead, and I fall in line with what activities we will do at any given time.
Showing her people with differing abilities
My daughter has gone out of her way to be sure my granddaughter is exposed to people with differing abilities, and has included the Fisher Price character in a wheelchair with her other little people. The wheelchair person gets to hang out with an interesting group that includes the ladies from Golden Girls and Ru Paul. We are definitely a diverse, welcoming, and accepting group.
For us, my canes and walker are just part of the package of being with grandma for some fun. But for others who have their own children and face the challenges of parenting while living with multiple sclerosis, there may not be much room for fun in their days. Being a mom or dad is hard enough work without the complications of chronic disease, especially with young children.
Resources for parents
There are great resources out there for people who face the questions of children, how to explain MS, and ways to adapt. First up I would love to introduce you to "Some Days: A Tale of Love, Ice Cream, and My Mom’s Chronic Illness," authored by Julie Stamm. This book follows the day of a mother and child, modeled after Julie’s own experiences of living with MS and telling tales illustrating how even on bad days you can have fun together. You can find her book online, and I highly recommend it for reading with children at the preschool level.
The National MS Society has a downloadable publication for children titled Someone You Know Has MS: A Book for Families. This booklet is free and is also available in Spanish. This is a story of Michael and his mom, who has MS. It explains the disease in clear terms for children age 5 to young teens, while providing a positive look at sharing the fun of spending time together.
MS Focus, formerly known as the MS Foundation, has print booklets available for free on their website. Among their many titles they have a few that are geared toward children. In particular, don’t overlook "A Conversation about MS," written to help adults communicate with children about multiple sclerosis. MSF also offers two other publications specifically for children: "Along Came Jae: A Conversation About Service Dogs for People with MS," and, "A Conversation about Disability." You can request all of these through their online order form.
Children are adaptable
Children are some of the most adaptable and wonderfully curious people in this world, and I think knowing someone with MS can make them even more empathetic and kind. If you are fortunate to have children in your life, cherish them and make the most of your time together as they grow and learn. No matter how your MS is affecting you, the most important gift you can give to a child is yourself.
Wishing you well,
Would it have been helpful to hear from others and their experiences when you were beginning your MS journey?
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