Monday, October 12, 2015

Catalyst for Change ~ Stanford Medicine X and My Unraveling

I woke up this morning and reached for my cell phone like we all do, and clicked on my Twitter app. The usual morning routine. First thing I see is this....a post from my dear Momma Warrior friend Erin Moore.....



It struck me like a hammer. I was speechless and tears welled up in my eyes. I couldn't help but think this was for me. The universe, God, whoever had Erin post this because it was what I needed to see.

I immediately began searching my brain for why this particular quote just resonated so deeply for me. And then it came to me. The past year, what has occurred in the past year. What things have happened to bring me to this point of complete and utter destruction?

For the past year, I have felt like I was coming apart at the seams. Everything inside me, the dread, the worry, the fear, the joy, the agony, was pouring out of me on a daily basis.  It was like a purging. My person was crumbling. Something else was emerging, but the pain of the past terrified me. My marriage was falling apart, my daughters behaviors were out of control. The manager who I worked with for almost 8 years was suddenly fired and I was worried our next manager would not be very understanding of the situation we have with my daughter. and I was worried I would lose the job we so desperately needed to survive.

My entire existence has precariously hung on Alexandra's continued survival. This last year gave us two more denials for transplant for her. One from Boston and one from Stanford.This was the why. this was the reason I was coming apart. It was over. And so I began the cracking, the tearing, because somewhere I had to find meaning in it all. It wasn't even something I consciously did.

I went around destroying others because I was being destroyed. I lashed out time and time again. All because I was so angry. Because here I was, not listening to so many of my friends who begged me in past years to take my daughter to a better qualified facility and now we were stuck. New families wouldn't listen to my advice to leave this facility and I was just so angry. I didn't want another Mother or Father to have to hear the words, "this is it, there is no more". They had missed a gigantic diagnosis in Alexandra, and now she can no longer be saved. All we could do was just keep the full on heart/liver failure at bay for as long as possible. It was over.

A little over two weeks ago, I went to Stanford Medicine X. Immediately I felt deflated, exhausted. Just left with the core essential things I need to survive, nothing else. Why? Because it was the finality of the breaking apart. Med X was where I began to sprout my tendrils of life again. It was when the last bits of the old shell of who I was fell apart. Its why even now two weeks later I am still struggling with this. Med X was my catalyst for change.

It was there that I began the final unraveling of my life. I was with people who got it. People who have stared adversity in the face and said "Boo" right back at it. I have been a part of many groups of people who have children with medical conditions but never have I been privy to such an amazing group of warriors. I think because as parents of children with medical conditions, we feel a certain duty to "keep it all together". But here I was with people suffering from debilitating diseases and they allowed themselves to fall apart. They understood the masks we all wear and said "come anyways, we love you as you". They didn't think my tears of frustration and anger were making me a bad Mother. They felt those emotions were exactly what made me a wonderful Mother.

Stanford Medicine X is a place for acceptance. A place for growth, change and the possibility of a better life. A place where the perpetual grief I have felt for eight years now is cherished and seen as a gift and not a burden. A place that one day I hope to see my daughter attending. I wanna see that daughter of mine give an Ignite! speech. She's got a fantastic story to tell. And its our stories that make us human. Its the culmination of our experiences that make us who we are. Med X is about the story of technology and medicine. Med X is the human condition. Med X is where we go to become who we were meant to be.

Thank you, thank you to the executive board for allowing me to be a part of this community. Thank you to Dr. Larry Chu for creating this amazing experience.  Thank you to Ally, and Kirsten, and Britta, and Kristen, and Cyrena for just being there. Thank you to Marvin for always saying he is going to send me videos of him singing NSYNC but he never does. Thank you to Charlie who is like the cat's meow, and I wanna be like you when I grow up Charlie. Thank you to Abby, for just being the best person at the internet I know ~ and the person who always has the correct GIF to mark the moment. Thank you to Alan, who told me on the first night to "just be you". To my fellow Mommy Warriors Erin and Breck, we got em ~ we can change this world for our kids.

Thank you. Thank you. Thank you Med X for being my catalyst for change. Thank you for being the catalyst for change in the medical community. Thank you for allowing me to bring my crazy world to you and accepting me with open arms. See you next year.....because....

"The Best is Yet to Come"......

Xoxo ~ Danielle


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