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Tell your story...

There are times in my life when I really don’t know who to turn to…for guidance, for advice. It’s not that I don’t have insightful, intelligent, empathetic people in my life; it's just that I’m not really great at listening to them. And I’m not great at asking for help. I’m not sure why this is but according to my family I’ve always been one of those “all by myself” kind of people.

I know some people rely on God, some on family, some on friends, and some on therapists but I’ve never been very good at unburdening. Recently, when life showed me once again that I am not in charge and I need to stop trying to control everything, I reached out for some help but it didn’t turn out like I was hoping.

As my son gracefully said, “Mom, you make everyone the main character in your story, but you need to realize that you are a secondary character in theirs”. Now I know this isn’t true for all people in my life, but it hit me…hard. Was I giving too much of myself to others? Giving them too much power over the happiness in my life? Do I ask for too much?


In truth, I write because my therapist thought it would be a good way for me to express all of my emotions, to unburden myself. It has definitely helped me, and I love hearing from those who read my words and shared that my writing has helped them through a hard time. But even now, after writing for nearly three years, I find that I question myself. Am I doing the right thing? Am I sharing too much? Am I bringing other people down by honestly sharing my life?


But then I started thinking…when did I start to doubt myself? Where did all of this negativity come from? What happened to the arrogant twenty year old who knew who she was and how she was going to impact the world? When did I lose sight of her? Or is she still here, in my gut, trying to drown the voices of self-doubt?


When my son was diagnosed, so many things in my life had to change. I had to learn medical terms, anatomy, insurance policies, and drug interactions. I would read an article and spend the majority of time looking up definitions of the medical terms. Then once in the never-ending pit of the internet, terms like “cause of death” and “life expectancy” would rise to the surface. I’d continually take deep breaths and power through. Never again would I forget to charge my phone; it will be never be off. At a time when most parents, are letting their kids test the waters of independence, I was constantly in the life boat, waiting, hoping, praying that he makes it through the day.

Now nearly five years after his diagnosis, I’ve learned to trust myself when it comes to what he needs and how I can help him. I listen to my gut - when it comes to him…but what about me? Where is my confidence?

When you are in a position that so few have had to experience for themselves, you end up writing your own rules and carving your own path. Those that know me best, know that I’ve always done things “my way” but I’ve also craved the approval of others. Maybe that’s why I starting doubting myself? I’m no longer getting paid for a job; there are no benchmarks to hit. No gold star for a job well done. A successful week is one when nothing significant happens. So many people question my decision to write about my life, and they have a hard time seeing and accepting my new reality. Instead of producing my own light, I’ve allowed their shadow of doubt to wash over me. I’ve put myself, my real self, in a little bubble deep down, so that when they ask about my life I can smile, and say everything is fine, and not let them in because it is exhausting to carry the weight of their judgement.

So now, here I am. Reflecting on this lack of confidence, struggling with some anxiety, about to turn fifty and wondering how in the hell I got here?

There’s a song in the musical, Hamilton, “Who lives, Who dies, Who tells your story?”, that has always stuck with me. Who tells your story? Who do you allow to tell your story? Do I want someone else’s narrative of my life, to be my story?


It’s time for a reset…it’s time for me to be the main character of my story. My story where my favorite five humans take precedence over everyone and everything else. Yes, I am too much for some people, and my life and my choices are too hard for some people to understand. Yes, I am a goofball; I like to make up words, make funny faces, sing country music songs, and wear pretty clothes. Yes, I am smart and funny; I cook, I garden, and I love being a home-maker. Yes, I am a “mama bear” - do not mess with my family or those I love like family, or you will feel my wrath. I feel deeply. I care constantly. I am me.

And, yes, our life has changed, and yes, we still struggle. But for me and for my son, I know this to be true:

  1. Stopping my full time job to help him manage his diseases has been a blessing to both of us

  2. Doctors don’t know him like I do and if I have to yell at them to save his life, I will … and I have

  3. He wouldn’t be alive today without my strength, my knowledge, my devotion, and my perseverance

I am me… and on the days when the self-doubt creeps in, thankfully I have a partner who has known me for 32 years - through my arrogance, my weirdness, and my doubt - and he sees the real me. When I’m going into a situation that gives me anxiety, I say to myself, “See yourself the way he sees you and you will be fine”. He knows my story. This calms me to my core, and gives me the confidence that I need. My beautiful cousin reminded me that God sees the real me, too, and this gives me strength. He knows my pain.

Now, with a stomach full of doubt-butterflies, because of posting this amount of truthfulness, all I know for sure is…

some people will like what I write

some people will not like what I write

some people will applaud what I write

some people will question what I write

some people will internalize what I write

some people will gossip about what I write

… but somewhere out there… some parent… some caregiver…someone going through a hard time, questioning and doubting themselves, will understand every single word on this page.

To that person, remember this: I am me and you are you. Be your story's main character.

Tell your story.


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