Annually, we have a day to reminisce on what has happened in the past year. We countdown the minutes until the clock ticks and we unleash confetti and shouts of anticipation. It’s a joyous moment that everyone celebrates. It brings a rush of chills down your spine and makes the hairs of your arms raise. It’s the moment we cheer for making it through another year, an charging into the next one with a list of goals. These goals are things that some of us have spent weeks thinking about, or simple light thoughts in the moment. Celebrations and goals…this year I am thankful to be here and to be able to celebrate this time. Feel the rush. Share the excitement. My primary goal is to be grateful, cherish things, and live in the ‘now’. I don’t want to live in the past, worry about the future, but live now. Presence.
As the clock drops, you have a rush of memories. Every pivotal moment that has occurred in the past year overwhelms your senses. Whether it is a good rush or not, that is up to you. I know that I will feel the rush of starting the last New Year of 2016 with my first Botox injections in my stomach at AFCH with my miraculous team there. Sadly, the next month, my gastrointestinal motility worsened and I got my first PICC line and started TPN for the first time. The months that followed let to full intestinal failure after exhausting every treatment option, even with transfer of care to CHW. My diagnosis of Intestinal Pseudo-Obstruction was one of the worst the motility team had seen, they told us. An ileostomy, a G tube, a GJ tube all became parts of my body this summer. My family and I began the search for intestinal transplant options, desperate for a life not dependent on TPN. But in November, our lives changed forever. A rare Neuromuscular Dystrophy/ Mitochondrial Disease, that they can’t name yet, ravaged my body. It left me with atrophied muscles, wheelchair dependent, on scheduled morphine. I am going through the stages of respiratory failure. I am home under hospice care. My ability to write with my hands, drive, bathe myself… all gone within days.
This year has been full of so many painful and raw moments. Some days I see photos from time periods and have to look away, as the pain from those memories is too much. However, the pure goodness of this year shines through. This year has been full of infinite beauty. It was the year my Aunt and her co-worker created my official domain, isabellesfight.com, my own title for my blog. It was the year my community of supporters surrounded us and lifted us up. While I essentially lived at CHW for about four months, I met the kindest nurses there that I’ll never forget. I met doctors who worked so hard to help heal my ailing body. I met fellow warriors who will always be a part of my life. I created bonds with so many beautiful humans. My family at AFCH was by my side each day. I would not have made it where I am today without my AFCH nurses. I love you RNs and NAs. You heal. I was able to see that people are GOOD. No matter what people say, humans are good. I learned even more how much I believe in LOVE. FAITH. ACCEPTANCE. UNITY. Love, love, love, love.
In this year of 2016 at the age of 17 I was labeled as terminal. It sent a pulse of shock through me and everyone I know. Timelines, disease progression, and options have filled the last weeks of this year. Who could’ve guessed that I, Isabelle, a thoughtful and youthful soul with great plans, would’ve been told I have a short time here on earth. No one really could’ve thought that. When I was given that name of “terminal” I realized that it meant me believing in living in the moment more. I could die soon, or later. I choose to not spend my time worrying about. Just doing everything I can do each day to the fullest and enjoy living in the moment. It is my new beautiful opportunity to do everything to the best of my ability. To be present. To give more love to everyone I meet.
Tonight I am fortunate to spend it with those I love. The beautiful Leuches and my family and I are able to spend these last moments, and first moments, together. Watching everyone play together makes me feel confident in my choice to leave the hospital before Christmas. This is what life is about. Being present and being able to enjoy and love on others. I am able to see my sisters and their friends grow and develop each day. I get to see the most beautiful parts of life with this new perspective. Yes, I feel my lungs beginning to shut down, but I feel so much love growing in the crevices.
Thank you 2016. Thank you for everything. Thank you for making me fight like I’ve never fought before, enjoy laughter like I’ve never before, and appreciate everything. You have brought me to my sickest moments, you even gave me a terminal illness. You also gave me so many gifts… growth of friendships, light, joy. You have torn my family apart by making some of us stay at CHW in Milwaukee and the others back at home having to see the empty rooms and chairs. However, this gave us the ability to be so joyous when we are all together. And I am glad that with my Hospice, Palliative Care, and Complex Care teams we will strive to provide more joyous moments. Thank you for gifting me another 365 days here with those I love.
2016 was when my fight launched to the stars and beyond… thank you 2016 for everything you have brought. 2017, I am ready to deal with what you have in plan. Because I know I have the capability to make it beautiful with my people behind me.
Goodbye 2016, Hello 2017. Happy New Years everyone.
Thanks to the amazing TeresaLynnphoto.com