The Hands that Kept Us Safe…An Open Letter to My Unsung Hero
Updated: Apr 9, 2019
By Jennie Erdle
The Hands that Kept Us Safe…An Open Letter to My Unsung Hero, Who Raised & Lost A Child with Illnesses - My Mother.
To my Mother Jeanne (A.K.A Mama),
You have shared with me over the years the stories of when I born and how I was stayed at the hospital for 6 plus weeks due to poor lung development and other health issues. When you were able to finally bring me home, I would have horrible instances when my tiny body would convulse, spasm, and shake causing me to get sick in my crib. The only reprieve we found together was when, night after night, you would fall asleep with one hand on my chest, the rest of your body leaning on the crib’s wooden frame, sitting in a nearby rocking chair in case of an emergency. Sadly, this was not the only health issues we faced together. I have a vivid memory of being 6 or 7 moving from our old farm house to a newly built house and the dust particles that were stirred up from packing caused me to go into a breathing attack. The ambulance had to be called in to get me to the hospital for the oxygen I desperately needed. You held my tiny hand so tight the whole ambulance ride. These moments all occurred while you were also raising Christopher and Sarah.
At 8, after years of testing seeking a diagnosis for the spasms, it was proclaimed that I was experiencing “cluster headaches” - series of relatively short yet extremely painful headaches that can occur every day for weeks or months at a time. I tended to get them at the same time each year, in the spring or fall. Because of their seasonal nature, people often mistake cluster headaches for symptoms of allergies or stress. Doctors today still don't know what causes them, but we do know that a nerve in my face is involved, creating intense pain around my eyes. Most people who suffer cluster headaches can't sit still, vision is blurred and will often pace during an attack. Cluster headaches can be more severe than a migraine, but usually don't last as long. There were times when the pain would be so intense it resulted in me passing out or even speaking gibberish. During one attack, I asked for your social security number and, in a very kind voice, asked you to please escort the little green men out of the room as they seemed to have lost their way. Never once do I recall experiencing these painful moments of my life, when you and your reassuring hands were not right there keeping me safe and loved.
Since the diagnosis, we journeyed together to doctors’ appointments, to blood tests, to MRI’s, to allergy shots, to testing inhalers, to vaporizers, to boiling water and putting a towel over my head so I could breathe in the steam. All the while, you and your supportive hands were there. As much pain as I was in, this did give us some precious time together that I feel, in some ways, I stole from Christopher and Sarah. Christopher was 8 and Sarah was a year and a half when I was born. Thank goodness for our family, specifically Grandpa and Grandma Vastbinder, and for Dad. In some ways it was as if you two were both single parents. Dad and grandparents handling most of Chris and Sarah’s care and you having to drive me to the specialists all over the region.
Today, as an adult, I am stunned by your grace and perseverance. Mama. I have some serious questions…how did you keep your hands steady during these tumultuous times? How did you keep your priorities in check when life demanded things beyond your control? How did you keep your Director of Nursing position at Ontario County Health Facility, a job that demanded you oversee the care and needs of over 180 elderly residents as well as a nursing staff of three shifts of 65 nurses? How did you find the inner strength to keep going? You did all of these things with a smile and a kind word to every person you met.
How do I know this? I am now back in Canandaigua working as the Director of Student Life, after leaving New York at age 18 to go college. I run into past employees, past co-workers, and other people in Ontario County who ask if I am the daughter of you, Jeanne Erdle. They always have a kind word or fun story about your supervisory and leadership style - a funny memory about your outfit-matching shoes, the role modeling to onboard a terrified new nurse, or the passion you evoked to ensure everyone was safe and following regulations. Above all, the moments that are shared with me are about the way you made people feel. There is a distinct story of a time you sat in the main lobby at the health facility with a family who just lost a loved one, no words were exchanged, no forms were being asked of them to sign, it was just you and them, in a circle holding hands, you never leaving their side. You sat there with them for what seemed like hours, well after it was time for you to head home for the day.
Now I more fully understand the struggles you and I went through, from the impact on my learning due to this illness, to my, hmm, let’s call it the “spunk” I gave you through my young adult years - you have led me to be an unstoppable force. They told you I might not learn and grow like other children do. They told you I might have to live everyday pumped full of medications to have a seemingly “normal” life. They told you not to encourage me to overexert myself for fear of igniting a breathing attack or a cluster headache. Each time they told you, you held my hand. You never concealed my struggles, you spoke to me with full disclosure of what I might be facing, and for that I am eternally grateful.
For as you know, I did go on to graduate high school, which was not easy. I did graduate with an undergraduate degree from a college in Ohio. I even got my Master’s degree in Higher Education Administration from Boston College. My seemingly “normal” life led me into the world of higher education where I have worked with college students at some of the most pivotal moments of their lives for the past 15 plus years. I cannot count the impact this work has had on so many, but above all, the impact it has made on me knowing each day I am living my very best life.
Together we faced another unthinkable family illness, this time with Christopher. Again, no doctor knew what was suddenly going on with his 35-year-old body. You kept pushing, you kept asking, you kept up with your instinct to assertively reach out to specialists until you found answers. It took four years. He had one of the rarest forms of MS diagnosed to date. He fought his battle with MS with you right by his side holding his hand every step of the way. He lost his battle in August 2011; we were so blessed to have traversed it as a family, side by side, hand in hand.
This is you, my unsung hero. You don’t wear a cape or hide your identity, or (as far as I know) leap from tall buildings in a single bound. You never gave up, you never gave in, and you never let people off the hook. I was born with a serious unknown illness that must have felt so scary. I can imagine you having more questions than answers. I am aware you received advice that you and Dad make different choices about my care, but you didn’t. You went with your instincts, leaning on your education as a nurse, believing with faith and following your gut. You did the same when it came to Christopher. You didn’t let it go, you did not brush it off, you listened to him and served as his voice when he was not able to articulate what he was going through. You didn’t follow some of the suggestions of care because it was what Chris requested, and for that, you gave him the ability to live his best life.
Because of you and your loving hands…I am. Thank you from the bottom of my heart Mama Erdle. The intuitive choices you made have forged for me a truly beautiful, complex life…so far.
I love you- from your youngest,
Jennie Erdle (or as you call me- Jennie Penny)
You might read this letter to my mother knowing that what I shared is “all in the day’s work of what it means to be a mother. Who wouldn’t have sacrificed and stood by their ill children no matter what?" For some of you, you are this very mother right now. For me and my brother, the advice given by professionals was not accurate (we found out later) for my brother, his condition was truly unknown. If she had let things go, or let things run their course, I honestly don’t know if I would be here today. I know my brother’s final years would have been riddled with pain and immeasurable suffering had she and my father made different choices in some of the most difficult decisions of their life. My life is not perfect, I still have to be aware of my environmental surroundings, I carry inhalers and epi-pens wherever I go; to me, this is my “normal”. Mama's hands are what gave me this chance to be.
Jennie Erdle is currently the Director of Student Life at Finger Lakes Community College in Canandaigua NY.