“Mama, JK Rowling’s mom had MS.”
“That’s cool! You and JK Rowling have something in common.” I answered not knowing that when I purchased the biography of the Harry Potter author for my Hogwarts obsessed son.
“Her mom died.”
My heart literally was taken from my chest and thrown on the crumb-filled kitchen floor. As my mind quickly jumbled around figuring out what to say next, he continued.
“It said there is no cure for MS.”
A foot stepped on my heart there on the floor in front of me and smashed it into many little pieces.
“Well years ago things were different in science and medicine….” I trailed off as I tried to explain to a seven-year-old something I am not even convinced myself.
On two separate occasions my husband and I have told our seven and four year old children that I have Multiple Sclerosis. The conversation is pretty basic and we stress the fact that I am not going to die. Both kids remain pretty quiet and for one of the first times ever had no questions when asked. Yet, I know they know. They are grieving the old me, alongside my husband and I.
They can tell their mom has to be in bed a lot more now. Their mom can’t go on every field trip or carry them up the stairs. They notice their mom is sadly a little angrier now and they sense the frustration and fatigue.
They act out to get my attention as they are craving those uninterrupted simple days when we worried about baby food and safety gates. It is tough for all of us. I don’t feel bad for my kids, I think they are going to grow up with empathy, compassion and the understanding that life has ups and downs and surviving the bumps create strong, independent children; I hope.
I am not the only mom with MS. The Just a Mommy with MS Facebook group has over 800 members posting all day long their highs and lows. The moms from all over the world shared their experience with introducing their children to the disease that they ultimately live with. Some recommended books, others involve their children in safely helping with medication and injections and many families participate in the Walk MS (which my family and I will be walking this May).
I also had the coincidental opportunity to get the advice of therapists behind the Individual and Family Connection that I will share with you on Friday.
This is the life my little ones are growing up in. They didn’t sign up for it, but none of us did. They aren’t the first children ever to grow up with a sick parent and as long as we continue to laugh, hug, talk and listen to each other; we will be okay.
After all, look how well JK Rowling turned out.
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