The doctor told me it was ultra rare and that there were less than 200 people globally who had this diagnosis. She so delicately delivered the news, gave me a packet of information she found on the web, told me about a Facebook group that would help guide me, grabbed my hand, and said there is so much hope for the future.
When my daughter was diagnosed with Jordan’s Syndrome, an ultra-rare neurological disorder, I felt isolated and alone. I felt like I did not belong anywhere. Who would understand what I was going through? The questions whirled around my brain and I tried to process this new information.
On the other hand, I felt, in a way, relieved. After months of searching the web and providing my own (non-medical) diagnoses based on my findings, I finally had an answer. There were so many questions that came with this answer, but at least, now, there was a direction to head towards.
I had support from my husband, family and friends…but I was her mother. I was the one who needed to deal with these complex emotions even though I was flooded with support- poems, therapists’ names, kind words and gestures. I was blessed to have support. But those who did not understand, simply, did not understand.
That is when I found something I did not know I desperately needed.
I started typing. I wrote down my raw, honest, emotions. I wrote about how I felt. How I started to question my belief in religion. I wrote about how I compared my daughter to my son, my friends’ children, my nieces and nephews…I just wrote the truth.
I let it out. And then, a blog formed. And then…a social media account bloomed. I became MamaBearforRare. I became a different version of the woman I used to be.
I knew that this awakened in me when my son, Noah was born. I held his little body in my arms for the first time, and knew right then and there, I would always do whatever I had to make sure he was happy, loved, and thriving.
When my daughter, Hailey, was born, I had to show up for her in a different way. I knew that she would not be following such an easy, straight forward path. I knew I would have to be her voice.
I had to advocate from the minute she entered this world. I advocated for more genetic testing as she stayed in the NICU. I advocated for those around me, family, friends, doctors, to listen to me, to hear me. I knew that I needed to pursue my guttural instincts and find out what was happening with my baby girl.
It took convincing, and my own observations, to finally be heard. I watched her miss milestones, I watched her experience Myoclonic seizures, and I saw her struggle to do the simplest things that peers were surpassing her daily.
I realized, it had been my duty, my calling, my obligation, to use my voice and make it louder than I had ever before. I was now “Mama Bear,” and it was imperative that I roared louder to be heard. I needed to protect my cubs.
As I navigated the intricate world of Jordan’s Syndrome, I found an unexpected ally in social media. The blogand social media accounts I created under “Mama Bear for Rare” became more than just an outlet for my emotions; they evolved into powerful tools for connection with others who were experiencing a similar path as us.
Through my social media platform, I reached out to others in similar situations, building a supportive community. I connected with families, medical professionals, and advocates from around the globe, all of whom shared in the collective experience of raising children with rare conditions. The community I found was both a source of strength and shared knowledge.
I began to use my platform not only to share my own journey but to amplify the voices of others facing similar challenges. I posted about the day-to-day realities of being a medical mom—the small victories and the tough moments. By sharing both the good and the hard parts, I provided a balanced view of what it means to advocate for a child with complex needs. This transparency helped others feel less alone and offered advice and emotional support.
Advocacy became a cornerstone of my social media presence. I used my platform to raise awareness about Jordan’s Syndrome, to fight for necessary medical equipment, and to highlight the gaps within the healthcare system.
Sharing the highs and lows of our journey also allowed me to celebrate the progress and breakthroughs, no matter how small. From successful doctor appointments to the joy of seeing Hailey achieve a new milestone, I made sure to highlight these moments, showing that hope and progress are possible even in the face of adversity.
In this digital space, I found a platform to advocate for change, offer guidance, and build a network of support. The connections I forged and the stories I shared have created a ripple effect, fostering a sense of community and empowering others to find their own voices in the fight for rare conditions.
My social media presence became more than just a blog—it became a daily outlet for me to feel seen and heard.
So, I urge you all, those who have faced similar challenges, shared experiences, or just want community and connection-reach out. We are all here, waiting, to lend an ear, and extend our hearts to one another.
If you feel alone or isolated, just remember, you are seen, you are heard, and we are here, waiting for you.
MICHELLE