A little over 10 years ago BBC produced a television mini-series called “Planet Earth.” They spent five years filming unique exotic environments, plants, and animals all over the world. There was one episode where the film crew spent months in subzero Himalayan temperatures trying to film the endangered snow leopard. After many failed attempts they finally caught the snow leopard on camera for the first time. These leopards are so unique and not many exist, that we know of, in the world today.
An “SCI” (Spinal Cord Injury) Mom is an endangered species of human being, like that of the snow leopard, that are far and few between throughout the world. In general, the bond between a mother and child is so unique and unbreakable. When a child has a severe injury, such as breaking their neck, a mom goes into protection mode in order to provide the safest, best, and happiest environment for their child. However, not all moms are cut out to be SCI moms.
An SCI mom goes above and beyond, dedicates her life to her child, puts their needs above their own life, and puts up with more heartache than perhaps even the child going through the injury themselves. Generally a child starts fleeing the nest in their 20’s, starts their own life, and the parents move on to other adventures in their life because while their job is never done, the daily nitty-gritty caring aspect for their child is complete. With a spinal cord injury the reverse happens.
A dedicated and loving family member puts their life on hold once again to care for their injured child as if they were a baby, but it never ends. However, you must remember that if you do have a spinal cord injury, and while your life changes forever it can be easy to take your mother, father, brother, sister, etc. who takes care of you for granted. Sometimes we forget that those taking care of us have their own lives, but we expect them to give up theirs to take care of us anyway. Many of us are extremely grateful, but there are many, I believe, who forget what an unbelievably immense gift it is for a family member to practically give up the rest of their life for you, to make sure you are always well taken care of if a caregiver leaves, if you get injured, have an infection, go back to the hospital, etc.
A mom does not have to give up her life when their child is injured, but there are a select few that choose to and this is not to be taken lightly or for granted … EVER!
I am unbelievably honored and humbled to say I have a Super SCI Mom. She has always been a super mom to her four children, but when I was injured at 27 years old she once again put her life on hold to take care of me at 65 years old. I have a very special German mother in the sense that she may be 71 years old now, but she runs around and has the energy of a 40-year-old. She is truly the kindest, most loving (not to mention a gorgeous knockout:), and caring individual I know with respect to giving her time to me.
I am at a medically stable point where I do have a life, friends, a loving boyfriend, and constantly try to urge her to go do other things, but she still stays near me because she is always my right-hand woman in any situation. She has been there through the thick, the thin, the depressions, the surgeries, the nightmares, etc. There is no one else like her, nor will there ever be.
There is a flipside to this coin though … In general, I never went through great depression after my injury. I always remained quite positive because I have a great support system, internal drive to constantly try and succeed at whatever I do, push forward, and maintain a positive attitude doing so. I’m sure if I took my injury out on her, as so many of us unintentionally due to family members sometimes, she would still be here, but we would not have the incredibly close relationship we have now. When you are injured it is important to remember that you are not the only one suffering, but the people around you who love you can sometimes suffer even more than you from a mental perspective.
I take full responsibility for my health care and double check everything that is done to me with respect my caregiving. It has become an instinct because I’ve been injured by so many people over the years. However, I must say that when I am with my mom she is the only one I don’t have to think twice about double checking anything on. She’s always got my back and I know how rare this is.
I could go on and on about what this woman has done for me, but suffice to say she has literally saved my life countless times. There have been some pretty hilarious and horrifying stories along the way, which I would be remiss not to share a few.
The Major Pressure Sore
I’ve written about it before, but to make a long story short I developed a very large pressure sore over my tailbone because I was born with an extra vertebrae. It resulted in a hole approximately 4 cm deep in my behind. Oh my mother… She would not let the doctors, nurses, or caregivers touch me when it came to caring for this wound.
Like a surgeon, she would clean my wound out every day with sterile saline water, change the gauze, put a bandage on it, and neurotically direct exactly how I needed to be positioned in bed. It could’ve been an episode from Grey’s anatomy when we were in the ICU together as she shooed all medical professionals away from me insisting she could do it better, more safely, and prevent infection. Boy was she right!
While I may have been in bed for a year and had to undergo major surgeries, my wound never got infected, and, in fact, I was told by multiple doctors I had the most beautiful hole in my backside they had ever seen. Go figure!
In 2013 I developed a massive cyst in my spinal cord and I moved to China for surgery because many of the surgeons in the United States would not touch me. We were preparing for our long journey across the globe over to southern China. It was quite an undertaking moving a quadriplegic across the world, but even more daunting thinking about how I would not get a pressure sore sitting in an airplane seat for 15 hours.
My brother loaded me on the plane with my wheelchair cushion to sit on. However, when you are paralyzed and flying there is a high likelihood of blood clots to form in your legs, and potentially travel up to your lung creating a pulmonary embolism, which are quite fatal. I’ve had one before and I can tell you from experience they just suck. I wish I had a more eloquent word to describe pulmonary embolisms, but I don’t 🙂
In order to avoid any kind of blood clots, pressure sores, and wrinkles in my cloths — my wonderfully crazy & quirky mother got up every 30 minutes, even when I was sleeping, to wiggle my toes, massage my legs, stretch my legs, etc. The funniest moment was when I woke up and I found her hands under my bum massaging my Buttock … I looked over at the passenger next to me who just couldn’t figure out why this lady was putting her hands under my bum. It was one of those priceless moments. I don’t know many moms who would do this for their child.
When you are first injured you are taught how to put a catheter in your urethra to pee. There are many other operations you can have where you don’t have to pee of your urethra, but in the beginning this is generally the starting point. Therefore every few hours you have to take your pants down, sterilize a field with gloves, catheter, beta-dine, etc., and carefully insert the catheter into the urethra. For women this is a little bit trickier because the Vagina and the urethra are right next to one another, and it can be easy to slip the catheter into the wrong hole. I know … probably more information than you were bargaining for, but these are just some of the realities we have to deal with with spinal cord injury.
If you insert the sterile catheter into the vagina, where there is a ton of bacteria, and then try to put the catheter back in the urethra right away chances are you are 99% likely to get a urinary tract infection, which if you are paralyzed, are way too common, potentially dangerous, and extremely painful. Think double dipping … maybe ok for veggies & dip – Not for catheters;)
Anyway, when I was in rehab it was the nurses job to cath me every few hours. The problem was that I was getting an infection every week and was completely miserable. One night my mom decided to take a flashlight and watch one of the nurse’s cath me only to realize she was missing the urethra hole, sticking it in the wrong hole, and then trying to put it back in the urethra. No bloodly wonder I kept getting urinary tract infections!
From that point forward my mother and other family members would hover over the nurses with a flashlight to double check that they were cathing me properly and not screwing up. I’m fairly certain the nurses were cursing my mom when they left the room, but that woman was completely and utterly relentless. I found it terribly amusing, well, as best I could at the time, because I essentially had a guard dog at my back at all times. My sister was just as voracious in the hospital as well with respect to making sure no one injured me after one nurse killed me one night and I coded.
My Dark Period
When I was living in China and underwent spinal surgery, which saved my life, it also resulted in severe permanent chronic neck pain with a neck brace for three months. To top it off the Chinese physical therapists proceeded to break my leg the next month. So, I was in bed for many months to follow with pain that I had never felt before in every cell of my body. I could not think, talk, or put together a coherent sentence. I did not want to go on, live, or think about creating any kind of life with the pain I had to endure at the time.
My mom was there every night and every day, wiping the sweat for my forehead, wiping the tears from my eyes, whispering “I love you’s” all day long, holding me when I was absolutely inconsolable, and constantly going above and beyond. I can’t even imagine the pain that she was feeling on a daily basis too.
Don’t get me wrong … My entire family supported me and continues to support me in all of the important ways, but my mom is the one who has been and continues to be in the trenches with me on a daily basis. This takes time, dedication, and, in my opinion, the ability to give up a part of her life for me, which not many folks are prepared to do. Oftentimes I have feelings of guilt with respect to how much she does for me, and I try to get her to go live her life, but she is still always there with me.
In an emergency the rest of my family, of course, would be there, but they have their own lives, and have to live theirs.
If you are lucky enough to have someone in your family like my SUPER SCI MOM, for God sake, stop or you are doing, go give them a hug, and tell them how unbelievably grateful you are for everything they do for you!
I cannot possibly imagine what I would do without her even though one day I know the time will come. For the moment, I treasure every moment I have with her even if we drive each other a little bit crazy sometimes 🙂