Hello! Thanks for joining me for the fourth week of my Thankful Thursdays series, running until Thanksgiving 2016. Chronic illness leaves little room for gratitude but focusing on the good in life helps to reframe this experience into a productive perspective. Without my gratitude, I would sink within all the negative experiences associated with my Chronic Illness Life with Ehlers-Danlos Syndrome.
Last week, Thankful Thursdays focused on the experience of growing up with a chronically ill mother in My Mother, The Chronic Illness MVP. This week’s installment springs forth from the same vein as I give thanks for the opportunity to raise my three beautiful children despite my chronic disease process making it challenging, to say the least.
Just as I once thought my pain was a normal part of life, so do my kids.
My progeny shares my creativity, passion, neurodivergence and more concerningly, my genetics and symptoms of EDS. While each one displays significant Medical Zebra signs and symptoms, my kids have avoided hospital admissions, so far. I’m super grateful for this but wait with bated breath as my own health crises didn’t land me in the hospital until my early twenties even though my symptoms were smoldered throughout childhood and adolescence. My hope is through my experience, my children won’t struggle for diagnosis, treatment, and validation.
To say I am grateful I am a chronically ill mother is a tongue in cheek statement.
It is exhausting to juggle motherhood and the setbacks of chronic disease, not to mention the guilt imposed by not meeting the societal expectation of Super-Motherhood. Try as I might, I never fit in with the overachieving mothers of my kid’s peers for a number of reasons but chronic illness takes center stage. Lucky for me, my adaptable kids understand chronic illness life and don’t hold me at fault for the things I cannot control.
With my recent major decline, I find gratitude in the fact my illness made life slow down to a pace where I can focus on cultivating more dynamic relationships with my children.
Before the injury ramped up my system to the point of disability, life was chaotic. I was constantly stuck in a rat race, overworking myself professionally and leaving little time to offer my family beyond the basics. Now I am no longer struggling to keep up at the race, there’s time to savor moments instead of rushing from one to the next, fearful for when it would all catch up and topple down upon me.
My kids weathered the storm of life with resilience and as they grow older I see the lessons I taught playing out in their actions. None of us are perfect. I’d be lying to you if I tried to misrepresent our trials. There were and are many. My little family went through the wringer more times than I’d publicly admit but in spite of these trials my kids provide a cohesion between my life and purpose. In other words. It’s always been for my children. Let me introduce my kiddos so you may understand why this chronically ill momma is grateful for the experience of motherhood.
My eldest daughter is Emarie.
I never knew love until I gave birth and held this sweet darling in my arms.
I remember marveling in the awe at her perfection. She made being 16 years old, a mother and married much more rewarding than the circumstance alludes. All the troubles of my adolescence melted away when I became Emarie’s mother. Through the trauma of my adolescent marriage, she and her sister were my motivation to push through to better times.
Emarie is a highly independent personality with the skill of adaptation from the start. She was a busy baby and toddler that lit up a room with her delightful smile and distinguished dimples. As she grew into an adult, my daughter cultivated a warrior’s strength. Her compassion for others and willingness to help those down on their luck is admirable, even as she learns to balance this grace while maintaining self-preservation. Emarie is one of those people who easily breezed through her classes at school, never struggling with concepts nor having to study for good grades. Even in her toughest times, Emarie powered through like it was just another day.
Emarie feels deeply about anything she puts her soul into. While this caused her some struggles I would have her no other way. Her tenacity and passionate nature made her a diamond in the rough. Such a beautiful process to behold as she molds the pieces of her experience to form self-acceptance propelling her towards her greatest achievements. She is finding a solid understanding of her self, our predisposition to disease and the importance of practicing kindness to her self.
During some of the most frightening times of my illness, I felt calmer knowing Emarie was at home with her brother and sister. Emarie innately took over the “mothering ” of her sister and brother when I was in the hospital. She put on a strong face and focused her watchful eye on attending to her siblings. She’s wildly protective of them, even today.
Emarie and I hold a very special mother-daughter relationship. I was but a child when I became her mother and in many ways, we grew up together. That’s the way it goes when you’re a teen mom. I always made sure Emarie knew the larger processes at work when life was hard. Whether it be discussing the finances, extraneous factors or even the drama, I always tried to make sure Emarie understood the grown-up side of things. I felt if she could understand my perspective in the decisions I was making for our family maybe life would also be easier to understand. Often times it was too much for her but she smiled and soldiered on anyways.
Being a chronically ill mother from the age of sixteen isn’t anything I would recommend, for sure! Regardless, being a chronically ill mother to Emarie gives me a place to draw from when trying to help her understand how crucial it is to for her to practice health seeking behaviors in light our genetic plight. I’m able to talk to Emarie about her own symptoms of these potentially debilitating diseases and give her appropriate advice based on my own trial and error. I am grateful my daughter is listening to my lessons and taking life a little less drastically than before when no one knew why I was so sick all the time. We all thought it was normal to dislocate, snap, crackle, and pop.
The other day Emarie brought a friend over to the house. She brought her into my room and says, “Mom, I think my friend has EDS!” This seems to be a thing with my kids as this is the third friend I’ve met with all the EDS signs, symptoms, and cohort diagnoses. This is striking considering the popular myth Ehlers-Danlos Syndrome is a rare disease.
Using my Chronic Nurse experience, I quickly assessed the friend’s medical history, Beighton Scale, and family history all of which screamed Ehlers-Danlos. The friend’s mother is having the same difficulties maintaining weight and with POTS problems to a debilitating point just like me, yet without proper diagnosis.
Of course, I referred them to the Ehlers-Danlos Society, as any good Zebra would. I also told her if she or her mother had any questions to get ahold of Emarie to ask me and I’d be happy to help them out. Emarie spoke up and said, “Or you could just ask me. Mom loves to talk about EDS and she doesn’t think I’m listening… but I am. I’m learning a lot about it!”
This might sound ghastly but I couldn’t be prouder of my daughter more than I was at this moment.
Anyone who knows me knows my tendency to soak up all the information about what I am interested in. Over the years my interests have shifted and expanded but one that never abates is my interest in understanding the workings of the body. This made me a great nurse but an even better chronically ill mother.
Over the past 9 months since my diagnosis I’ve explained EDS, POTS, and all the other comorbid diagnoses to quite the extent to anyone who will listen. I weave EDS quality of life recommendations into whatever conversation I can because raising awareness is quickly becoming my life’s purpose. In my daughter’s statement on the subject, I felt fulfilled in my greatest hope, for my daughter to understand there is a process, that is no fault of her own behind the many difficulties she’s faced all her life.
I know even as the unfortunate circumstance of the many years of undiagnosed Ehlers-Danlos plays out in my own life perhaps my children will be better prepared to weather the storm. Emarie, if you’re reading this now you must know you made your mother eternally happy on that day
<3 Here is just a short video example of my eldest daughter’s spirit.<3
<3 She’ll probably be embarrassed by this but I think it depicts her personality perfectly <3
But wait! There’s more! I have two more kids to express my gratitude for!
Jordan, JoJo or Theo as she sometimes likes to call herself is my middle child. She recently spread her wings and flew the coup to live with friends because she is eighteen and over zealous for adulting. I can’t complain. She is hard working, incredibly intelligent and a creative human being with a keen sense and sensibility for understanding more abstract concepts in life.
Jo was more than busy as a baby and toddler. Rather she was in constant motion and conversation. Her little voice was high pitched and her speech was fast, just like mine and my brother was when we were kids. She was such a character and a very particular child.
As a little one, Jo embraced the more intellectual and abstract concepts with ease. While she lacked patience for menial subjects like math and grammar, she scored genius levels on reading comprehension and abstract thought processes. Of course, her elementary school found her hyperactivity and resistance to redirection difficult.
The recommendation for intelligence testing and treatment for ADHD came from her school teachers who were frustrated with Jordan’s inability to mold herself into a square peg to fit into the round hole of primary, public education.
Jordan was a loner for the most part of her early school years. She was often bullied for her unique personality but rarely discussed it. Still, Jordan possessed a realistic perspective coming from a place of self-love on the matter. Jo was never bothered by much of anything unless it involved me being sick.
Looking back I see how she used her special interests not only to stimulated her mind in ways not provided in the public education system but also to deal with the many struggles we’ve faced over the last 20 years as a family unit. She’s a resilient soul, verbalizing an understanding of the cause and effects of our struggle. I can always rely on Jo to give me an unadulterated opinion when asked. She understands the meta-meaning behind many of my eccentricities.
Jordan’s a beautiful person, inside and out. She is wonderful with children and adapts easily as needed. She takes my words of advice to heart, even though it may take 6 months for her to understand the lesson of my words, she eventually gets it.
Her passion for her special interests mirrors my own. I recall a handwritten botanical journal she wrote at 12 years old after spending several days out in the woods behind my mother’s home. She tapped into the most sacred aspects of botany whilst intertwining her interest in the more whimsical fairy tales in and around nature. Her creative talent is a marvel. I encourage her to go with her love for creativity as she determines where she will go next in life.
Like her sister, Jordan is a strong personality with strong convictions about what is right and what is wrong. Jojo introduces me to humanitarian concepts I would never stumble upon on my own due to our age gap. Jordan told me after graduation she was so proud to be my daughter and she loved she has the best mother of all her friends. Jo thanks me routinely for being supportive of her non-binary processes. I’m proud my daughter is culturally aware with an open and creative mind. I can’t wait to see where her endeavors lead her!
I am grateful for Jo’s personality and candid truth telling. There were several times over the years Jordan reframed tough situations with a small but positive statement of observations I had yet discovered. In this way, Jordan is wise beyond her years, understanding life is not always candy and unicorns.
Her outlook on life is sometimes bad stuff happens but that doesn’t mean there is not good to behold. So in the rough year of transition from chronically ill to chronically ill and disabled, I am grateful for Jordan reminding me of the greater meaning in this experience. My daughter is a powerhouse for turning life’s lemons into lemonade inspires me every day.
For example, Jo participated in a Slam Poetry club during high school. She and friends presented some difficult topics in regards to facing societal harms regarding sexuality. Jordan took the negative experience of being subjected to hate crimes because of sexuality and gender identity and twisted it into a powerful presentation on the experience with haunting questions left for the listener to postulate. Below is the video performance of the poem. Trigger Warnings: Hate crimes, Violence, Homophobia, Bigotry, Bullying, and Psychological Trauma.
One more awesome kid to go! Please read on!
My 3rd and final child came in the form of the handsome fella pictured above.
Gavin was born when I was twenty-three years, remarried and attempting nursing school. As a baby, Gavin was just as delightful as his sisters. During the first year of his life, he rarely left my arms. He was interested in electronics from the start thus explaining his passion for making Youtube videos in his teen years.
Seems like he grew up even faster than his sisters!
He should still be my little baby boy instead of this young man, taller than his mother!
We bond over technology and media. Over the last two years, Gavin built up his Youtube while studying to improve upon his craft and save money for better recording equipment. He creates skits, Q&As, Vlogs and he is even working on a drama series! I am overjoyed to see his passion for entertaining as our linage posed a knack for it as well.
Gavin loves to make others laugh. He loves to act out his comedy routines when around a crowd of family members. He reminds me of some of the happiest moments in my childhood where my whole family would gather together for a night of impromptu skits and silly songs so long ago.
My heart soars when he expresses an esteemed respect for woman, resisting the local culture’s tendency to regard women with negative connotations. As he grows so do the seeds of knowledge regarding better self-awareness. Universal consciousness sprouts up in our conversations to eventually vine out the illustration of the hardiness within. Gavin is a sensitive, creative kid with a drive to bring a smile to the face of everyone he meets.
Gavin is the silver lining of a very traumatic decade in my life even beyond the chronic illness experience. We all went through a lot when his dad and I divorced. Gavin struggled to adapt with his father’s foul regard for me. He started showing serious signs of concern. Fortunately, when Seth and I got together, Seth helped me redirect Gavin’s maladaptive behaviors into more constructive forms. Soon Gavin settled down to the loving, tender soul he is today. He loves his family with strong loyalty remarkable for his youth.
As he grows older, our conversation topics mature. He asks for my perspective on many aspects of life. My son and I have a unique relationship in which he trusts me enough to tell me his deepest thoughts and greatest fears while asking my opinions on his situation, life and everything in between.
I am grateful for the gift of being here to teach him “the other side of things” as his father and my opinions are often polar opposites. As I encourage him to use his mind and ability for understanding all perspectives before making assumptions, I also feel more compelled to ensure I am modeling this for him in my life in every way.
As we journey, I drop little snippets to spark his thought processes into action, just as I do with my daughters. I encourage him to love himself to the highest degree while encouraging him not take stock in anyone who would put him down or treat him poorly. I educate him on exactly what emotional and mental abuse entails so he will know the difference between healthy and pathological relationships. The time we spend talking fills me with joy to hear his message and guide him towards healthy behaviors.
Gavin humored me the a few months ago with a Q&A for my chronic illness vlog I’m slowly but surely working to create. I wanted to get his perspective on what it is like growing up with a chronically ill mother. It was nice to work on something together again because this is the first video we’ve done together since I was discharged from my latest extended stay. I am thankful we have these similar interests as we can bond and have fun with it.
The best example I could give of our relationship is captured in his Youtube Video below. I was honored to accept the invite for the QnA! How many 12-year-olds would want to interview their mother for their Youtube channel? His kind heart and creative is soul make him unique. He is steadfast in his beliefs but always open to interesting discussion. I will never stop encouraging him to achieve his goals. Seeing his appreciation of my efforts to support his dreams fills my heart with gratitude for the gift he is to my heart.
I was a kid when I gave birth to my daughters and then my development was arrested when I gave birth to my son.
There are many things I learned through trial and error.
Like most, if only I knew then what I know now.
Still, my children grew into a compassionate, strong-willed, persevering individuals, standing strong for what they believe and taking pride their work.
As they meander the beginnings of adulthood I see their understanding of life growing to new heights of awareness, reflecting the lessons I impressed upon them for day one. I breathe a sigh of relief, even though they likely have Ehlers-Danlos Syndrome because if they understand they can do things to work around it!
What’s tough about all this gratitude is forgetting the losses my kids endured as a result of having a chronically ill mother. There were times before my diagnosis I’m sure my children worried why their mother was not like other mothers.
I recall the fear in their eyes each time I got sick and ended up in the hospital multiple times over the years.
I remember all the times they told me “It’s okay Momma, I know you would be there if you weren’t sick.
There is an incredible amount of guilt I could sink into when it comes to the second hand suffering my illnesses imposed upon my progeny. Even more, guilt surfaces when I think how I passed on my cruddy genetics to my children before I possessed any awareness of EDS.
Its enough to spark a lifelong depressive reaction but instead, I try to put the emotions to good use by making the most of all the moments this Universe provides, good and bad. Above all, my wish is my children will learn to live life to the fullest in every effectual trial. I’m grateful to be here to guide them towards that goal.
I am thankful to have the experience of being my children’s mother because it is the purest form of love I’ve ever known. As my kids grow older with EDS symptoms much like my own, I’m grateful I still have the ability to share my experiences so they may not struggle for recognition as I once did.
While chronic illness life has terribly awful moments, I take solace in knowing my suffering is not in vain. My pain creates a position for my kids to self-advocate from because if it weren’t for my years of health issues, undiagnosed and the grand finale of the last year with my final global diagnosis and disability, my kids might go through their entire lives wondering why the felt so different from everyone else… Why things hurt so much more and why it took so much more energy to “be normal.”
Being a chronic mom means accepting limitations as guideposts in life. Learning to live happily, despite chronic disease, transcends the misery of the experience into some malleable and beautiful to behold. My gratitude as a chronic mom is rooted in the special lessons we’re afforded because of the process. My kids know the limits imposed by my disease and are taking lessons to cultivate a life with lowered risks for debility. If I couldn’t save myself from this level of debility, at least I can pass on this experience to guide my kids towards a better future with Ehlers-Danlos Syndrome!
Thanks for reading Thankful Thursdays Volume IV: Chronic Motherhood! Please join me next week for Thankful Thursdays Volume V: Health Insurance and Health Care in which I force myself to look at the good things I am afforded because I am lucky enough to have insurance and healthcare in a country who would tar, feather and stone their weakest populations.