Wow!! What a wonderful summer this has been! I can not believe it is winding down and the leaves will be changing soon. As I reflect on this summer it has been filled with fun times with family and friends, a lot of time contemplating and adjusting to what life is now, there have been ups and downs but mostly I see several accomplishments big and small. I have so many reasons to celebrate every single day.
First of all we came to the right decision. Leaving Cleveland, putting my transplant on hold is absolutely the BEST thing I could have done this summer. My team, my family, my friends have all told me how proud they are of my courage to make such a decision. Ha! I wish it was courage that moved me home, but to me it was obvious. It was about my quality of life, my desire to enjoy the city I missed so much, the risks and rewards of transplant that no longer added up.
My biggest accomplishment of the summer was turning the big 40. This one was extra special to me. When I was 15 and was diagnosed with a severe motility disorder of my GI tract my family and I were given a bleak prognosis. The disease would progress, pretty burtally. My digestive system one day would no longer be able to process food. I would go to tube feeds and eventually those wouldn’t work. Then onto IV nutrition and eventually that would loss efficacy and I would die from the complications of the central IV or from malnutrition. I would be incredibly lucky to make it to 30 years of age, so prepare for Bethany to have a short and abnormal life….. And as a 15 year old I thought,”…. this guy, this specialist that is one of the top in the nation, he doesn’t know me and sure as hell as no idea what is talking about. I am going to life to the ripe old age of 40. I’ll show him!” So to me turning 40 is achieving the impossible. I have had a wonderful and pretty normal life until a few years ago. I am now doing great and plan on continuing my life, it is a little different but here I go keeping on.
It is funny how when you are 15 you think turning 40 is the end of it all, life is all down hill from there. But it really isn’t. I feel better today than I did when I was 35, maybe even 30. Although I was much better at hiding it then. I look back and maybe I was a little harsh on the doctor. I mean, all of those things have happened except for the last one as I sit here today very much alive.
So celebrating 40 was big deal to me, but I didn’t want a big huge party. I just wanted a beautiful day at home with family and friends. My best friend, Linda, made the trip from Philly to surprise me. She was the cherry on top of my birthday sundae. Chris took us to an amazing dinner on Friday. The next day close friends joined us for a day out on Lake Michigan and the Chicago River surrounded by blue skies, sunshine and the skyline I call home. It was perfect. Thank you Clint and Andrew for hosting us!! To top it all off there was a beautiful sunset and fireworks over the pier.
A couple of weeks later we got to celebrate my Mother In Laws birthday there in Chicago. Her visit was fun! And then it was Chris and my anniversary, which we celebrated with our favorite Chinese food and an afternoon in the park during which a bird pooped on me 3 times!! All in good luck I am sure. Ha!
In early July I was able to cross off one of my childhood dreams, going to the Home Run Derby and All Star Game celebrations. My mom, Chris and I made a trip to Cleveland for the event (and a couple clinic appointments too). It was an amazing trip that I will never forget.
We have also been getting our fill of street festivals. They are one of the key elements to enjoying a Chicago summer. This last weekend was the Chicago Hot Dog festival, benefitting the Chicago history museum. It was also Market Days the celebration of Boys Town that we call home. We enjoyed great food, music and great people. We got to celebrate PRIDE this year too!
And then the smaller things in life and health. This is the first summer of my entire life that I haven’t thrown up. Sound ridiculous but it is true. It was one of my main issues with my intestines.
I also took my first real shower since Oct of 2015 when I got a central line placed in my chest. With the help of a facebook group of us that rely on tpn for our nutrition, they taught me how to actually keep my line dry in its precarious location.
This list continues on and on big and small. I traveled by myself to Cleveland, and will leave for Rochester soon too. My closet is organized and beautiful! I am finally settled back in at home.
These things have given me such joy that I just had to share. And I also want to say thank you to all of you who carry my soul through all of this. To those that give me reasons to keep going to keep achieving to keep living with a smile on face. It would be easy to let all of this make me eternally upset, grumpy and mad at the world. But instead all of you help me see given the chance I would not change a single day in my 40 years on Earth to date.
It is now my time to move forward with my life and pay it forward to others.
Onward and Upward!
Dance like no one is watching!
I am obsessed with this current remix of Whitney Houston by Kygo.
Thank you all for helping me find A Higher Love!! XoXo
Think about it, there must be higher love
Down in the heart or hidden in the stars above
Without it, life is a wasted time
Look inside your heart, I’ll look inside mine