LOVE FOR LEWISTON
The story of how I met Lewiston and the Olstads.
I had the chance when I moved out to decide the path I wanted my life to take. I could be bitter and angry with how much more work it is for me to go to school and move away from home or I could embrace the life I was living.
From the moment I wake up until the moment I fall back asleep, I am forced to make the conscious choice of independence through the aid of strangers that I privately hire and manage to keep myself alive. The severity of my pain and of my continued disease progression requires me to rely on others to do everything from opening a water bottle to carrying me in their arms and laying me in my bed each night. At the end of a long day of work or school, I am faced with the task of taking another person through my basic human needs. And this is just a side effect of the actual monster that is SMA.
Choosing to embrace life, to involve myself in the lives of others with SMA.. isn’t always easy, but it is what gives my life purpose. If I could be a voice for children with SMA, support parents new to the diagnosis, and be an advocate for the SMA community, I could continue to fight my own SMA.
This was how I became a part of the Olstad’s life, by stopping by Lewiston’s room at Children’s to introduce myself and offer my support. I wasn’t aware that my life was about to be changed. That for the next month I would get to know the most beautiful boy with the support of an incredible family. I watched him fight, and his family fight, but I also watched them, love, celebrate the little things and soak in every second of eye contact and snuggles.
The first day I met Lewiston, Jessica placed him in my arms, he looked up at me and I started to cry. Jessica asked me what was wrong and I said, “he’s too perfect.” I couldn’t believe this perfect blue-eyed boy was fighting a disease I knew all too well. A disease that would force him to fight every day and ultimately a disease that none of us will defeat. It broke my heart.
In the one month I knew Lewiston, I attended his five-month birthday celebration complete with cupcakes and music, watched him learn to use BiPAP, watched Jess stretch him, saw him get his tiny footprints taken, and soaked in his love of Disney and blondes. That month with Lewiston was not enough. Of course, it wasn’t enough. But it was enough for him to change me. The joy that boy brought me, the fight he re-ignited in me, the community – this community here tonight that stood behind Lewiston now also stands behind me and for all of that, I am so grateful. In that month I also gained the most incredible friend and support, Lewiston’s Mom Jessica. No, a month wasn’t long enough, and neither was the five months his family had with him but this party is an example of the choice we made.
I could lie and say that the bitterness left when I met Lewiston, but I still battle my pride day in and day out. The truth is that Lewiston made everything sweeter. Lewiston gave me the courage to run towards the roar, dance in a wheelchair (lol) and choose joy on my most hopeless days.
That sweet baby boy gave us all the courage to choose to carry his legacy forward and to fund research so that one day, SMA will no longer mean you’re planning your child’s funeral. The choice to approach life with joy, appreciate the movement we have, no matter how big or small and we dance in celebration, through grief, and when we need to feel a little closer to the little boy we all miss so deeply.
For more information visit: http://www.loveforlewiston.ca
