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.
Isabelle
Thanks to the amazing TeresaLynnphoto.com
Hello sweetheart, You have no idea who I am… however, you and my daughter, Emily Jo Walter go to school together. I hope you know what a huge impact you are making on this community and beyond. You’re positive attitude and grace are, miraculous. I wish I had the right words, more words to truly describe what your doing by sharing your story, courage, and unconditional love with us… girl, you are touching perfect strangers in such an immense way. You are making a difference, a huge difference in the world. You my dear, are an angel on Earth. I hope you know what a gift your words of wisdom are. You may be a young seventeen year old women, but age is nothing but a number in my book. You are full of wisdom. I will always be praying for you, thinking of you, and we… your community will be here for you and your family through the good, the bad, amd the ugly. Please reach out if there’s anything, anything at all I can do for you or your family. Sending you cyber hugs, love, endless prayers.
Happy New Year Isabelle!??? I found your site via Instagram while I was waiting for a visit with my Gastro doctors…those appointments always run late so my iPad is my way of passing the time. What a year 2016 was for you…what is the most remarkable is NOT what has been lost in the year of profound changes, but what you have FOUND: family love and unity, tenacity, courage, adaptability, friendship, kindness, laughter, inner strength, your voice, and presence. You are unique Isabelle…I don’t know what your spiritual faith beliefs are but mine tell me that EACH of us have been uniquely CREATED by the Master Teacher, our Heavenly Father, never to be replicated again…our hairs have been numbered by God, CHOSEN, REDEEMED, SEALED and CHERISHED by Him for no other reason but His LOVE for us as we ARE…ENOUGH in His sight.
I hope this new year is filled with the discovery of ALL you are and all you have…I pray your health is restored so that you can breathe more deeply, your muscles can stretch, bend and relax in new ways. Keep sharing your VOICE and SPIRIT…you write so beautifully, Isabelle…and remember, your LIGHT comes from inside and can never be diminished by circumstances…keep SHINING!✨✨✨ Happy New Year, Susan Biddle
My IG account is sebiddle93 and my email is smellis@windstream.net. ???
Thank you, Isabelle, for helping me see much more purely and clearly. Many prayers being lifted up by so many for you and your family.
What a loving and remarkable young woman you are, Isabelle! I am very fortunate to know you, to love you, and to be one of your Uncles. We pray for you and your family every day and think about you constantly.
Happy New Year Isabelle. We love you to the moon and back. Thank you for giving Brie an amazing role model to look up to. “If Isabelle can do it, then so can I” We are so blessed to YOU in our lives. God is good. Xo
I love you, Isabelle Dunai…. More than you know. I am crying right now. They are tears of joy for the courageous young woman you are and sadness because I haven’t seen you for many many years. They are tears of hope for the precious moments you will have in 2017 and tears of love for your mommy and the rest of your family. I know that I am but a stranger to you, but in my heart you are one of my very own little girls. As always… We are sending you Texas size love and hugs.
Isabelle, I have had the privilege of seeing you grow into this amazing young woman. I am heartbroken that you are going through such pain, but I am in awe of your courage and your ability to see beauty and goodness. I am learning from you and I love you and your family so very much. Your words are a true inspiration to all.
KEEP FIGHTING!!!! God Bless you
Beautifully written. You are an inspiration to me Isabelle. I have meet many strong people in my life time but you are a precious gem. You have touched me in more ways than you know and through me you have touched my family. With faith hope and love you continue to shine.