When I Realized I Could Still Be a Fun Grandma With Multiple Sclerosis
I’m a grandma. Better known as “Ny-Ny.” We’ll get into that later. What I want to tell you about now is a story you’ve heard at least a million times. You’ve heard all these platitudes and more from friends on social media. But I’m going to tell you a few new ones.
“I have the best grandchildren! My life is all about them now! You can spoil them rotten all day and then give them back to their parents!”
“My granddaughter has saved my life the moment she was born! My life is entwined with hers! I can spoil her all day, but I don’t want to give her back to her parents!”
Yes, it’s true. From the day Tina Hazel was born, my life has taken on a new meaning. It went from the brink of despair to utter joy in a second flat, and has only grown from there in the last six years. From the moment I busted in through the out door of the hospital, made my way to my daughter Colleen’s room, and was presented with the most precious of all miracles, joy returned to my heart. The floodgates of emotion while holding this warm, wiggly bundle of pure love had opened. My heart released all of its black, tarry misery and was refilled with light feathers of tickly undulation. My pink little friend, I am here, I thought. You are a part of me and you own the other parts. I could never imagine a day such as this. OK, you say. All grandmothers feel this way. Let me give you some background before I lose you for being just another bragging old lady.
I didn’t feel anything even close to joy when my firstborn told me she was pregnant nine months prior. Almost 20 years earlier to the day, Colleen received a kidney transplant. In the process, her own two damaged kidneys were removed. She had an extremely rare autoimmune disease called Goodpasture’s that almost took her life at 9 years old. The offending antibodies were attacking her lungs and kidneys the summer prior to her diagnosis in the fall. She had to go through chemotherapy for six months, then peritoneal dialysis for another six months. Strong pharmaceuticals and medical procedures took their toll on her young body. Then many years later, once in high school and once while away at college, she fought non-Hodgkin’s lymphoma and two more full rounds of chemo and radiation.
Life seemed to be getting back to “normal” (what’s normal?) when she had surgery to remove a tumor firmly attached to her fallopian tube and ovary. They were removed as well. A case of endometritis in its most damaging form. Doctors told her that she would not be able to bear children. In fact, they strongly suggested not getting pregnant. I was with them on that advice.
You see, her kidney transplant was not from a stranger. It was from me, her mother. Tina’s grandma. Ny-Ny. I had some stake in this pregnancy game. Not exaggerating, I was furious and wildly afraid for my daughter. How could she risk everything she had fought so hard to beat? How could she even get pregnant? How could she risk going into rejection because she’d have to stop taking her meds? What if her cancer came back? What if something happened to the baby because of all the chemo? How irresponsible, I thought. How selfish and unthinking. I thought she must be lost in love for her new husband and couldn’t think clearly. But she explained that she wasn’t going to stop living her life for “what ifs.” She’d given up too much already. That really resonated with me.
I should tell you now that I have two children. My son, Cale, is three years younger than his sister. He also has presented me with his own little pink bundle of gurgling preciousness, Lily Rose. She’ll be 1 year old in February. An Aquarius like me. I will tell you all about the special relationship I have in that little love story at another time. I want to point out that I have always wanted to be a mother. Growing up, I spent many hours babysitting in my neighborhood. I even came up with the idea for a “Tiny School” in the summer. I would charge $10 a week for entertaining little kids for a couple of hours each day with crafts and games. Later in life, while married to an Air Force medic, my children’s dad, rather than go back to work after having our first child, I got a home-based daycare license and did that for a number of years. My kids have always come first in my life and always will. I have been grateful that through two divorces they have remained a constant in my life.
I guess that’s why what Colleen said about not wanting “what ifs” to keep her from having a child made sense to me. That emotion has too great of a pull. So after 8 1/2 months of pregnancy with several complications, Tina Hazel was invited to come into the world a little early. Here’s where the story gets even better.
I have multiple sclerosis. I have been diagnosed since 1986. At the point in my MS life that Tina was born, I was in a power chair. In constant pain and unable to do all the things I used to do quite easily. The first 20 years after the dreadful day of realization my life would be different, I had become quite active outdoors. In Oregon, there is always an opportunity to bike, hike, or kayak. Skiing, fishing, and snowshoeing were also an option. I took advantage of all these things and even started my own massage/esthetician practice in the athletic club I worked out at every day. My MS was not an issue. Until it was.
I went from being extremely active to wearing a knee brace and lying about why I needed it. I cut back on my clientele due to fatigue and snuck naps in any way I could. Then a cane was part of my outfit. Next, I modeled two arm crutches as part of the ensemble. Finally, I had to give up my beloved career as an LMT, farm out my customers, and start my new life in a wheelchair. Divorce soon followed. I was feeling pretty depressed, as you can imagine. Never before in my life had I ever felt suicidal, until then.
How could a child ever love a grumpy lady in a wheelchair? Kids run away or point at people like me! And what could I possibly do with a grandchild? My dreams of hiking, biking, and just plain old running around were not to be. I couldn’t even take care of a baby now. I ground myself down like a stubby pencil on sandpaper. What worth do I possibly have now? I made lists in my head of all things I couldn’t do anymore, how my life had been stolen from me. I had only just turned 50 and I’m all washed up. Now add my inability to be a grandma too.
Something else happened when Tina arrived. I realized that my daughter’s blood was filtered in her body by her kidney. The one that I gave her 20 years ago. That blood went from one mother, through another, and finally ended up in baby Tina. And that is a special bond. Something that really meant something to me. My new reason for being here. I had purpose again. I was someone special to this little new life. Some might say her being here is a miracle. I’ve even said it myself. All I know is that my life was changed the day all this took place and has only gotten better.
My being in a wheelchair did not work with a new baby. Nor did it work very well against the corners of all the doorways! I soon found that a power chair gave me one arm free at all times. So as soon as I got that figured out, Tina and I were off! She has been riding on my power chair with me every Wednesday since she was a few months old. On our normal dog walking route in the neighborhood, people have watched her grow from riding in my arms to sitting in my lap. Then a few years later she started standing on my footplate. She must feel like she’s flying at the helm of the Titanic as we speed along, her long air blowing in my face. I’m not gonna lie, the bigger her feet have grown, the less room there is on that footplate. I don’t wear shoes so some days they get stepped on quite a bit. We’ve put many miles on all my chairs over the years. She and I are the only ones who have shared all the minor mishaps of our situation. Getting stuck in the mud. Being trapped under a gigantic pine tree’s branches. And the one time her Daddy had to rescue us after a picnic went awry when my motor stopped working in 90-degree weather. We were even on the news once when I complained about my wheelchair getting stuck in the wood chips around the play equipment at the park, and the fact that there were no wheelchair entrances to those very playgrounds.
My favorite time right now is picking her up from school on early release Wednesdays. I wheel onto the blacktop after her class has lined up. When she gets the nod and wave from her teacher, she runs at full speed towards me, her backpack bouncing and her arms going wild waving, all the while yelling “Ny-Ny! Ny-Ny!”. She naturally leaps onto my footplate, piles her stuff in my lap, and starts talking. That’s what she does. Tina talks. All. The. Time. Her mouth just cannot keep up with her brain. She has too much to say. Too many opinions. Too many ideas. Too many kids to say “Bye! See you tomorrow!” to. Too many compliments to give. Too many plans for us to complete during the few hours we have together. Too many times to say in exasperation, “Silly Ny-Ny!” Then we sing most of the way home.
I drive a converted van with an automatic ramp and hand controls. Tina’s car seat is in the way back. She prides herself in helping me locate “Ny-Ny” parking spots in light blue. And she helps me moan and groan about people being inconsiderate with their parking skills. She always polices my power chair driving does and don’ts; not too close to an edge, stay away from mud and gravel, use ramps to cross the streets at the curb. You get the idea. This 6-year-old has witnessed life as a disabled member of society, with all its ups and downs. She is proud of me when introducing me. She is not embarrassed by me. She was so excited for the day that she and baby Lily could both ride with me in my chair! Recently, that very thing happened, and it was one of the best days of my life. Could I possibly really have the two best granddaughters in the world? I think I do.
I look forward to Wednesdays. I plan what we will do that day. I make sure I’m rested up for all the activity. I shop for the craft supplies we will need. I make sure I have all her favorite foods. We share a love of baking and party planning. Every family get-together has a theme. And goody bags and decorations. We play Barbies, we plant flowers, we share secrets. Those feet parked next to mine all the time. We have sleepovers, play tricks on my husband “Jahgee,” and dress up the dogs for tea parties. We are kids together. One of us is in a wheelchair and it makes no difference whatsoever. I can’t claim to have any influence over Tina’s incredible sense of empathy; I think she gets that from her mom. She has only compliments for those folks she first meets. She is kind towards others to a fault. She feels sad for others. She feels joy for others too. She’s my sidekick.
Now don’t assume I’m like all those other Grandmas who think their grandchildren can do no wrong. Tina is the world’s pickiest eater. She interrupts. Somedays she will not let me sing. Not a note. She has an unhealthy aversion to ants. She doesn’t like to clean up. Heck, sounds like me in kindergarten! I’m not like those other grandmas because… I’m not. I’m not a grandma. I’m better than that. More special. And I have my own parking spaces all over town. I am Ny-Ny. The only one. I was crowned Ny-Ny while playing a peek-a-boo game with a months-old little princess. “Whose going nigh-nigh? Baby Tina’s going nigh-nigh! She’s up! Peek-a-boo!” I giggle as the blanket goes up and down. Thank goodness I didn’t become Grandma Peek or Old Lady Boo. I love being Ny-Ny.
That’s how a little girl saved my life. That’s why we have a special connection. That’s why I wake up hopeful for each new day again. I only have more good days planned for the future. I hope Lily and I will share a day each week too. Then she and I will have all-new adventures in which I see her daddy in her, as a little boy. I wasn’t in a power chair back then. I got to run along the beach with him growing up. But Lily already rides in my lap like Tina did. She’s growing up being accustomed to the feeling of moving with her Ny-Ny in a unique way. And that, my friend, is worth all the tears I shed wondering what kind of grandma I could possibly be.
Getty image by Sturti.