Today is a very special blog post for our St. Louis Program Coordinator, Meridith O'Connor. Her mother, Jeanine Krieg is this week's Feature Friday in honor of Mother's Day this Sunday. Read about Jeanine and Meridith's journey with MG and her perspective as a mother watching her daughter live with a neuromuscular disease.
Meet Jeanine
What is your name? Where are you from?
My name is Jeanine Krieg and my daughter, Meridith, has battled myasthenia gravis for two decades. I am from St. Louis, MO.
Tell us a little bit about your daughter’s journey with MG and what that has been like for you as a mother. Or, what has your journey, as a mother, been like with MG?
Diagnosed at such an early age we would never have predicted the profound impact that MG would have on her daily life, or ours as a family. Living with MG while navigating adolescence and one’s teenage years was challenging on many levels. There were compromises and sacrifices continually made regarding school, sports, social events, friends and family time. Her world and ours became focused on just getting her better. Meridith’s myasthenia was severe and what began with one little drooping of her eye, and, after a series of misdiagnoses for more than two years, her illness eventually manifested into a full-blown MG crisis, hospitalization, IVIG, plasmapheresis, and thymectomy surgery. While knowing there was no cure for MG we hoped for remission but, sorrowfully, that never occurred.
Thus, the very real struggle began. Managing medications, including frighteningly high doses of prednisone, countless clinical appointments, schoolwork and school absences, and advocating to get help in school became our way of life. While educators were well versed and helpful in making accommodations for many kids with disabilities, no one understood or could grasp the severity of MG and how it affected her, especially because her MG symptoms were sometimes invisible. Perhaps one of the most difficult things for me as a mom was watching my child now forced to give up so many things…dance, singing, and sports, so many childhood activities, events and gatherings missed as well as the heartbreaking reality that life was never going to be the same. This is Meridith’s reality to this day, but what she has done with this knowledge and acceptance is amazing.
How do you perceive your daughter’s MG experience today versus her MG experience as a child?
Today, the new reality is Meridith is a Graceful Warrior. She is a champion for all those who suffer with invisible illness, physical and mental disabilities, people with autoimmune disorders, rare diseases and chronic illness, and works to help them have a voice in today’s world where so many such people are often overlooked. While MG took so much from her, it could not steal her spirit and faith. While MG may be a challenge to each of these, her profound faith in God and her steadfast spirit has prevailed and has propelled her into work that is making a difference in other people’s lives in a very purposeful and important way. Meridith’s experience with MG as a child was formidable but, it was the MG experience that has fortified her as an adult with greater empathy and strength and wisdom and character with a vocation focused on making a difference in this world while helping others.
MG is a multifaceted snowflake disease, and it is critically important that family and friends and classmates and coworkers help and support one who is fighting this illness. Support can be and should be evidenced by physical, emotional, psychological and spiritual help, across the board, from numerous sources, and on every level for both children and adults with MG. Giving MG a face and a voice, Meridith continues to create awareness and understanding for this disease as well as shares her story to encourage and empower others.
What is one thing you wish people understood about your daughter’s diagnosis?
I wish that people would have a better understanding of how devastating and serious MG can be and how symptoms may change from hour to hour, compromising one’s life or choices, minute to minute and/or for a lifetime. I want people to know that it takes tremendous courage to continue to fight an illness when you are sick and tired of being simply…sick and tired.
Do you have any advice for parents that have a child with MG?
To MG warriors and their caregivers, I don’t have much advice, but I do applaud all those who are in this battle. I have seen first-hand how someone with a muscle weakness disease proves over and over that strength from within can prevail, even when it comes shining through a petite and beautiful 10-year old brown-eyed little girl.
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