First of all I want to thank you all from the bottom of my heart for all the love and support you have showered on my little family the past few days. They have been hard, they have been sad, but the love you have given us has filled our hearts and voids with so much joy. I appreciate that people even take the time to read what I write from my heart - I know that sometimes it is open, raw, filled with emotions, but the reality is that that is life for us, and everyone. Life is filled with raw emotions that sometimes are good and sometimes are not good, and I hope that instead of hiding them away for no one to see that I can change the perspective of even one soul on the reality of life. We all have pain, we all have sadness, we all have joys - they just look different for each person. Writing about it also helps me get it all untangled from my heart, and gets my thoughts refocused on the meaning of life - still haven't figured that full answer out yet, but it at least points me in the right direction to keep heading.
Today marks the anniversary of my new life. A life where I wake up without my rock by my side. A year ago I woke up and wanted to run away from the world, my friends hand feed me in bed while I hid under covers. A year ago it felt like life had come to a screeching halt, and in some sense that is true. Life stopped the second my dad died and I knew about it. The world kept spinning, but my life was placed on a very prolonged pause where I couldn't find the play button, and all I wanted to do was hit rewind. I have slowly worked to find the play button, and life has started moving again - partly by choice, but I will admit that a lot of it is because I have children and a family that I have to get up for. Life is not on pause for them, and so I found my play for them.
I find it monumental that I survived something I at the time knew I couldn't. I stumbled, I have fallen, I have had set backs, I miss him more than words, but I am up, I am moving, I laugh, I have fun, I am only late on my bills sometimes, my laundry gets folded some of the time, I can appreciate the good in life in addition to feel the pain of my loss. And so, today marks the first day of my new life. A life where I am in control some of the time, where I choose joy, and I choose happiness despite heartache, where I miss my dad, but I live life and don't let mine go to waste. I do this for Sophie, I do it for Charlotte, I do it for Junji, but mostly I do it for myself.
Last night to remember my dad we served dinner at a homeless shelter. It was the only thing that I could think of that would bring us all together and do something that was so him. My dad's life was dedicated to serving, to helping others, to giving up everything for the sake of another and serving to those less fortunate was truly my dad. As I watched the people walk through to get their dinners, I was filled with a remarkable feeling of how blessed I was to have him in my life. I obviously wished that he could be there - he would have loved it, but seriously I am so lucky to have had him, had all that he gave me, to set me up in such a way that I have a really good life, and that it is me who is able to serve and help others. With a toss of a coin my fate could have been very different and I could have been on the other side receiving instead of giving. I am beyond lucky, I am beyond blessed, and a that is because of my dad (and you too mom). So today I start the day with an open heart, and a fresh set of eyes towards the life I have been given and I strive to take that life and make it mean something. I am sad that my dad didn't get more years on this Earth - but he was here for 65 glorious years, and that is a lifetime more than some people are given, and that is a blessing.
My dad's matter of fact answer to me about my sadness would be "TRACY everyone dies", that fact couldn't be more true. It is the universal truth of all living things - everything that has life eventually dies, humans have the unique situation in which it is unpredictable and not always foreseen- some die old, some die young, some from illness, some from accidents, and some naturally. We all die at some point, it is how we choose to spend the moments in between. I for one will be choosing to see blessings, see joy, and most importantly create joy the world. Life is good - I promise, even on our darkest days - life is good, life is precious, and life is a blessing. If everyone on this Earth could see this, we would have a much more peaceful world.
We are one week and two days (but who is counting) away from creating one of Charlotte's big Joys and the timing is so perfect in our life. I cannot wait for her to feel the air race across her face, for her to feel the sensation of running, and to hear people cheering for her as she crosses the finish line. It is going to be a life changing experience for our family. I will attach a link to our fundraising page - we have already raised more than $5000 for the FamilieSCN2a Foundation with donations and shirt sales - so if you are needing somewhere to donate as the end of the year approaches keep us in mind! I am also working to set up another shirt booster - there have been many requests for shirts since the previous one closed so I will get it set up for you guys - we will have t-shirts and long sleeve shirts this time. So cool to see people wearing their shirts! Keep posting your pictures if you have one and make sure to tag #seizeyourjoy! Finally there has been some media interest in Charlotte and her story - she was featured as you know on the University of Minnesota Masonic Children's Hospital blog, she is being featured in the Pediatric Home Service Newsletter, and we did an interview with a reporter on the Pioneer Press - which will be featured in next Sunday's Paper October 9th (I had previously told some of you it would be this weekend, but they moved it to next Sunday) and will be in the Turning Point section. Before I am done with this world - people are going to know what SCN2A is and I will not stop talking about it until there is a treatment and cure! Thank you again for all your love and support - we are beyond blessed and thankful for all you have done to spread the word, share Charlotte's story, and help us spread Joy.
Life is good, even when it isn't fair. Life is good.
Here is the link to my fundraiser page, but you can donate to any of the runners listed. I will post the link for the shirt booster as soon as I get it set up!