A Parent’s Perspective

Being A Cushie Warrior Momma-A Parent’s Perspective

By Nancy Montgomery

I have been called a lot of things in my life but one of the best things and most bitter sweet things that I’ve ever been called is a “Momma Warrior”.  A “warrior” is defined by Merriam-Webster as, “a man engaged or experienced in warfare; a person engaged in some struggle or conflict”. Never did I believe that my life would be defined as being a “warrior”….much less a Momma Warrior.

Momma Warrior says a lot, mostly the MOMMA part……Momma the word so many dream of hearing for their entire life. The role of a life time, being a Momma, loving, caring for and raising a beautiful little human. I was blessed to give birth to 2 beautiful baby girls, one in 1992 and one in 1997. Life was wonderful as a mom and I was again blessed to become the step-mom to 3 lovely children in 2003. My “Mom life” was going well and everyone was happy and healthy. That is until my youngest daughter, Brandi, began to have odd, vague “medical issues”.

Well, not so much MEDICAL issues as there were just odd things that didn’t follow the normal pattern of a child’s growth and development; we started to notice things were just not normal around 4-5, but not so abnormal that anyone really noticed…By the time Brandi was 8-9 no one could deny there were odd issues….a short stature, she would become weak, pale, shaky, she had a complete avoidance of candy and sweets, there were wild night time energy benders waking her from a sound sleep, with times of almost coma like sleep, cranky, moody, no real pattern just would happen, then a sudden loss of her ability to smell things, a rapid weight gain right around her belly, her feet didn’t grow, her hands and feet would swell, her head would hurt, she would have rapid, dry flushing of her cheeks for no real reason, then the racing heart started and the frequent runs to the bathroom all day and night. It was time to find out what was happening. I took Brandi in to the pediatrician and new one since I had remarried and moved, one who did not know me nor MY history. This new doctor didn’t know that I had a respiratory arrest and had to be brought back to life when I had delivered Brandi. She had no idea that I was a strong person, not one to freak out over little things, one that was an experienced mom and a Registered Nurse. When I brought my list of concerns to this pediatrician I was met with the behind your back eye rolls and the undertone of being a crazy mom, patronizing reassurances. After a few visits and my shooting holes in all of her medical advice and explanations of my daughter’s vague symptoms the pediatrician made a neurology appointment because my daughter likely now had “ADHD”…Of course that’s it!

The newest thing on the “medical market” NOTHING else was coming back abnormal according to the pediatrician. I had requested that my daughter’s thyroid function be checked during our first appointment and I was repeatedly reassured that it was “perfectly normal” but due to the rapid timing of this neurology appointment I was handed the paper work to take to the neurology appointment. BOY was a SHOCKED that the lab work was FAR from “perfectly NORMAL”! Fortunately the neurologist was not convinced that everything was”perfectly normal” Nor did my daughter have ADHD! At the time medical records weren’t easily obtained from our physicians and I had to trust that what I was being told was true. THIS was the birth of a “MOMMA WARRIOR”!! One who trusted her inner Warrior Momma’s GUT…the one screaming things are not perfectly normal!

To sum things up I had just discovered that I had been LIED TO! Not only did someone lie to me, they lied to me about MY CHILD! That was the start of my life as a Momma Warrior! I had to become not only a mother but an advocate! I had to fight for the life of MY BABY! I found in the months and years that followed that this was no easy task! That I would be talked about behind my back, that I would be “That Mom”, that I would watch the tail of many a lab coat nearly run from the exam room as they answered my repeated pleas for help with the trite answer of “Well….It’s COMPLICATED Mom”. I found that honestly no one cared! I learned that I was going to have to educate myself and become the advocate my child deserved. I was going to have to learn to be a warrior. I was going to have to learn to wage war, war on the very folks who had “dedicated’ their lives to helping others, the medical community, of which I was a part. My being a Registered Nurse was really a hard one, a physician who listened to ever word I reported to him on a patient that I had only spent a few hours with would take what I said as the Gospel truth and order tests, even make diagnoses based on what I reported about a complete stranger.

Shockingly, I was NOT afforded that professionalism, and blind faith in what I reported BECAUSE I was NOW talking about MY DAUGHTER! There is NO WAY I could be objective or honest! Sadly, I found that far too many in the medical field were unwilling to honestly really dig deep into the reasons WHY things were happening to a small helpless child. I was shocked to learn that it was MUCH easier to ignore things and discount “facts” placed in their hands as coming from a crazy, attention seeking parent or child. The medical field found it easier to “explain” away things such as a complete lack of growth in height, low bone density in a 12 yr old child, multiple broken bones, weight gain and abnormal lab work with “facts” such a “oh well, THAT is just not possible, It’s too rare in children” or “Maybe the lab work was wrong, lets repeat it….she seems to be under a lot of stress…and that can cause abnormal labs”.  I had the fight of a real war in my hands. The WAR where my child’s life was at stake…I took bullets for her…I stood in front of her and wage war….real war…were I was THAT CRAZY PARENT!! I really didn’t care what THEY thought as long as I could just find ONE REAL PHYSICIAN to REALLY CARE!  The war was on!

Fortunately for me and not so much the medical community I was blessed enough to have inherited my family’s well known “stubborn streak”…and I used that stubborn will to turn one person’s lack of education and unwillingness to learn into the facts that the next physician would need to peak his interest into my daughter’s case. Little by little I waged war!! I was lucky enough to have met some senior “Warrior Mom’s” who helped encourage me and give me the words of long fought wisdom to use with these physicians and to never give up. Because of that help, guidance and encouragement I was able to seek out the REAL champions, the physicians who specialize in the disease process my daughter has, “Pediatric Cyclical Cushing’s Disease” causes by multiple, small ACTH producing pituitary tumors. After 3 pituitary resections and now with only one third of her pituitary remaining, I am happy to report that my daughter Brandi, now 19 is in remission.

We “Warrior Parents” need to bind together. WE are the ones that will cause effective change in the medical community!!

We must lift our voices and fight for the ones who can not fight, the ones who lack the voice, lack the ability to find the words or the strength to stand up to these heartbreaking situations we have all faced! We who have already blazed the trail need to keep the trail stomped down, and make an even wider and more smooth path for the millions who have sick children and seemingly no one to help them. Just because our initial fight is somewhat over doesn’t mean we should step back and allow the dust to settle. We have to continue to fight and never give up on those whispered promises that we ALL have made, those cries of anguish when we were deep in the trenches of our own personal war zone, “No child needs to suffer like this at the hands of the people who are dedicated to helping them! I swear I won’t let it continue to happen…..when I find the right help I will never let this continue…”

Being a Warrior is not an easy thing. It is a heartfelt commitment that each of us took on, often with little to no choice….but that battle cry continues….and we must answer….and end this war …..I will fight for the day that NO MORE WARRIOR MOMS ARE NEEDED!

Nancy Montgomery RN

“Warrior Momma”