My mom almost died. She went from perfectly fine to slowly dying overnight. When a woman who never complained regardless of a history of chronic migraines and pain said she felt like something was very wrong, we knew that it was.
I’ve never seen that fear in someone’s eyes before. Unbeknownst to any of us, limb by limb my mom’s immune system was attacking her peripheral nervous system. She was slowly becoming paralyzed. Though we have an incredible health care system in Canada it almost failed her. It almost cost my mom her life. See, she was sent home 3 times from emergency. Told to see a chiropractor, told to take deep breaths, treated as if she was looking for pain meds. A woman with no history of drug use and in obvious pain was dismissed, 3 times. Thanks to a friend of mine from school who worked at the hospital we finally got her admitted. This friend undoubtedly saved my mom’s life. Cue an onslaught of invasive tests. MRI showed nothing. A spinal tap showed nothing. Every test under the sun, nothing.
But I want to rewind before we get to what it was. Though this mystery illness almost robbed me of my mom, it doesn’t define her. There’s more to who she is and where she’s been.
Growing up I always wanted to be a mommy. That desire didn’t just come to me but undoubtedly developed from observing this amazing woman who was raising me. If we bring this to current day terminology, she #nailedit. There was no one that wore as many hats as my mom did. Chef, chauffeur, nurse, cheerleader, teacher, etc. etc. The list goes on and on. And although I’ve always loved and appreciated her beyond words, I really couldn’t even begin to understand or respect her the way I have since becoming a mother myself.
My mom made hundreds of sacrifices for us over the years. She even sacrificed her career for us and made what I’m sure she would describe as an easy decision (because she’s the most selfless human alive) to stay at home with my sister and me. I honestly don’t know how she did it. After a weekend with O and H who are both my absolute world, I am running to drop them off at school and daycare, only to have a moment’s reprieve of the never-ending bickering and noise. And I’m sure once we went to school or over to a friend’s house, she had that same moment. But the rest of the time, she was “on.”
There’s this joke that moms don’t get sick days. As mentioned above my mom suffers from chronic migraines, like the kind that makes you barely functional. She developed whiplash and other various chronic pain issues after we were rear-ended at a red light and she turned so quickly to make sure my sister and I in the backseat were ok. But she never complained. She would be wincing in pain but would still take my sister and me to the mall to check out that sale at the Gap. She would be exhausted and sore but still setting up a craft she had sourced all the perfect materials for. She didn’t complain. Ever. My mom didn’t take sick days.
In addition to those classic “mom hats” she wore that I listed above, she wore so many more.
My mom is a photographer. We have SO many pictures of us as kids growing up. And not just the posed, school-picture, family portrait kind. But the kind that captured our personalities, our day-to-day life. Shot on her Nikon 35mm film camera and archived into albums upon albums of photographs. Ironically enough my sister, who embraced art from a young age and then fell in love with photography, is a documentary photographer. She captures the everyday lives of families in the most beautiful way. Much like my mom, she has an eye for the moments that truly depict people in their current state.
My mom is an entrepreneur. My whole life I watched my mom come up with different ways to make her mark and keep busy outside of raising us. From her holiday gift-basket business that she ran out of our basement with her best friend; to selling Tupperware and lingerie; to opening her very own Italian fine foods delicatessen called Delicacies. Regardless of the size of her business at the time she sank her heart into it. And though I know she looks back at some of those endeavors as failures, she’ll never truly understand how proud I am of her for trying them.
She’s a seamstress, interior designer and artist. There’s not much she cannot do. Don’t even get me started on her most recently appointed role as my boys’ Nonna. I truly believe this was her calling.
think know my mom struggles most days, trying to find her purpose post-diagnosis. Trying to find her value. But to my family and my children, she’s invaluable.
When it comes to them, her age and her pain take a backseat. She’s on the floor being a construction worker or a ninja turtle. She’s visiting O’s “restaurant” and supplying perfectly sized snack foods for him to serve to his imaginary customers. She’s the smiling face on the other end of FaceTime even if it’s 7 o’clock in the morning or 11 o’clock at night and one of them insists they need to talk to her. She’s the doctor, chauffeur, and chef all over again.
Okay, the diagnosis. December 31, 2015. Guillain-Barré Syndrome. Don’t worry if you’re having trouble pronouncing it, almost two years later I still struggle with it. A disorder so rare that none of her treating nurses or doctors had ever actually seen and/or treated it before. Though no one can be 100% certain, it’s likely she contracted it from the flu vaccine. We went for the vaccine together that year, she drew the unlucky straw.
Guillain–Barré syndrome [gee-yan-buh–rey] also referred to as GBS is a rare but serious autoimmune disorder in which the body’s immune system attacks part of the peripheral nervous system. The first symptoms of this disorder includes varying degrees of weakness or tingling sensations in the legs. If caught early, most patients recover fully in 12 months.
I know that last bit stings for my mom. She has not fully recovered yet. Her most recent prognosis is that she likely never will. And though she’s lucky and grateful to be alive, GBS has robbed her of her prior quality of life. She spent nearly 3 months in the hospital and rehab gaining enough strength back to sit up and to walk. She went from bedridden to a wheelchair to a walker and now needs a cane in order to have stability on her feet. She lives with constant pain in her legs, arms, and hands. A pain indescribable to anyone who’s never suffered nerve damage.
It f*cking sucks. There’s no denying it. So yeah, my mom almost died. But she didn’t. And despite her life being turned upside down; despite her plans changing at the drop of a hat; despite living in constant pain and struggling to find her new purpose, she never complains. She always puts everyone else first. I remember this distinct moment when I went to see her in the hospital, before the diagnosis and treatment. She couldn’t walk and I just broke down hysterically. You know what she did? She comforted me. She was slipping away and comforting me. That’s what moms do.
My mom is my hero, my role model, my strength. She’s the one I can call day or night asking about a rash one of the boys has developed or what ingredient I’m missing in my Nonna’s meatball recipe. She’s the one who will drop whatever she’s doing for anyone who needs her. She’s kind. She’s loving. She’s sensitive. She’s strong. She’s beautiful. She’s my everything. And for that, I could never thank her enough. She taught me how to be a mom. She taught me much of what I know.
Like most of us women, and especially now, my mom struggles to find her purpose. But I hope she knows she doesn’t have to. I hope she reads this and knows she’s enough just as she is. She always has been and she always will be.
Ti amo mama, alla luna e ritorno.
Title Lyrics – “Good Mother” by Jann Arden
5 thoughts on “I’ve got a good mother and her voice is what keeps me here.”
Danielle this is beautifully written and melts my heart and makes me teary eyed. As you know I am also a GBS survivor and would love to get together with your mom one day to talk. Jenn will have to book a mom and daughter date when I am down that way next time.
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What a amazing tribute to your wonderful mom. I don’t even know your mom, but I was teary eyed after reading her story–I think because she reminds me of my mom, who I lost far too soon. It sounds like your mom is a strong woman. I wish all the best.
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Thank you so much and I’m so sorry to hear you lost your mom. And yes she is the strongest person I know! Thanks for reading 🙂
Beautiful. I’m so sorry for the struggles your momma has encountered. It sounds like she is one heck of a strong woman! Sending all the love your way.
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Thanks Kristine ❤️