The Hardest Part

WindowThe hardest part about asking for help is,well, asking for help. We are raised to take care of ourselves, solve our own problems and NOT ask for help. We spend most of our lives learning how to be strong, successful and independent. In the midwest, in South Dakota, where I was born and raised, if you were called “stoic” or “stubborn” you were being given a compliment.

And then a life threatening illness whacks you in the side of the head and knocks you off your feet. And for a long time you fight back. You fight hard. You are able to solve the problems, to make things work, to somehow keep your lives stitched together and functioning.

But on the inside you watch your life slowly crumbling apart and soon even the most everyday tasks seem too difficult…bills don’t get paid on time, things on your to-do list start stacking up and you realize that you can no longer handle everything on your own…that this problem is BIGGER and STRONGER than you.

So you ask for help with mixed emotions. It took months before Michael and I made the decision to put his fundraising in the hands of HelpHopeLive. We felt so fortunate that we had already had so much support – both financial and emotional from good friends, family and in some cases people who we didn’t even know when Michael relocated to Arizona in hopes of getting his transplant.

The next couple of years were almost like a tragic comedy of errors…the transplant center in Tucson CLOSED it’s lung transplant program, another handful of centers turned us away due to Michael’s heart problems, we weathered two heart surgeries and listened to some sceptics that didn’t think that the cost and benefits of a transplant were “worth it”. Ha, say that when you are tethered to an oxygen tank 24/7 and struggling to breathe!

And then we found Cleveland Clinic and we felt like the doors opened and we found a home where we would be safe….a transplant center whose goal was to save lives. Cleveland approached Michael’s situation with incredible logic. First take care of the heart problems (two heart stents), get him back on his feet and then work towards the transplant.

They told us we would need to raise a minimum of $35,000 for uncovered medical expenses. This is where HelpHopeLive comes in. These folks care about helping others that are backed up against a wall due to medical issues. They work hard to make sure that everyday people don’t lose their jobs, their homes and in many cases their hope just because they have been unfortunate to land in a difficult place.

Asking for help is still tough. We feel so blessed to have gotten the help we have from everyone who supports us in this journey. But Michael will get his second chance. And when he does, well, then our goal is to find a way to help others in our situation, so that maybe their road will be just a little bit easier.

And our hope is renewed knowing we have the HelpHopeLive organization and our friends and family on our side.

If you would like to donate to Michael’s transplant fund, please click here.

 

Seize the Day

Sometimes the worry and the exhaustion of dealing with a life threatening medical issue on a daily basis can really wear you down. You just feel like escaping and have to deal with the fight or flight syndrome over and over and over again.

I have found that at those times you need to look for the good and the positive in the every day to pull you back up.

Today I was driving home, in my now normal state of anxiety, and a white convertible passed me with the top down. I could see two little girls huddled in the back seat giggling with joy at the wind in their hair. They couldn’t have been more than five or six years old. As they passed me, one of the little girls turned to me and threw me an enormous smile as she waved at me. The look on her face was one of sheer delight and happiness. It was almost as if she sensed that I needed something to turn my day around. I couldn’t help but smile and it was almost as if a weight was lifted from my shoulders.

It is that easy to change someone’s day for the better. Thank you beautiful little girl. You made my day.

If you would like to donate to Michael’s transplant fund, please click here.

 

Happy Ending

I am sending the love of my life off on a journey….but it is a journey that I wish wasn’t necessary. He will soon be traveling to Arizona to wait for his double lung transplant.

And although we have been pretty much inseparable for nearly 10 years, I can’t accompany him on his journey. I may not even be able to make it to his side when the call comes telling him that they have found a match, that he may be getting his 2nd chance at life through organ donation. But the hope of some good years together with  my partner and soul mate has kept me going.

Some rather grim statistics were released yesterday with Facebook Founder, Mark Zuckerberg’s announcement that Facebook would be adding an organ donation option to the site. According to the United Network for Organ Sharing (UNOS), more than 114,000 Americans are currently on waiting lists for transplants of kidneys, livers, hearts and other organs. More than 6,600 died last year waiting for an organ.

Friends, family and even many people that we barely know have been so supportive. Asking for help is never easy, but we have witnessed an extraordinary effort from so many to help us achieve what seemed like an impossible goal. All the help, compassion, encouragement and financial support has helped ease a difficult path. Thanks to all of you that were there for us when we needed you. I only hope that we can somehow repay your generosity and kindness.

I pray that you send positive thoughts our way and that we will have a long and happy ending to our fairytale love.

Cinderella wants to dance again with her handsome prince again.

If you would like to donate to Michael’s transplant fund, please click here.

Back to the Past

Three years after returning to South Dakota, my mother was again well and heading towards the 5 year milestone of being “cured” of cancer. She was becoming stronger, but had to give up driving and settle into a new lifestyle of dependence on family members. It was tough for her to adjust to not having the same freedoms she had enjoyed before her illness, but she was so grateful to be alive. One day she was sitting on her front porch and a truck slowed down and then stopped, a man jumped out and she saw a familiar smiling face coming towards her.

Michael had been a close friend of the family many years earlier. Michael and I, we had a history. Although he was three years older than me, we spent time hanging out one summer together with my older sister and her boyfriend. One hot afternoon found us at a local swimming hole. It was the perfect day. On the way home on the winding South Dakota highway, we hit gravel and Michael’s jeep rolled. Without doors or a seatbelt I flew through the air like a speeding cannonball hitting a tree headfirst. We both had serious injuries and were transferred by ambulance to the local hospital. We recovered and eventually Michael moved away.

He always held a special place in my heart and the scars on my head were a constant reminder of him throughout my life.

Now he was back and interested in seeing me. I looked forward to meeting him again after so many years, but didn’t expect the overwhelming attraction I felt for him the first time he walked in the door after nearly thirty years. This was the beginning of our wonderful romance and we are hoping that it lasts forever….

If you would like to donate to Michael’s transplant fund, please click here.

Living, Loving & Caregiving with Sanity Intact…Well, Kind of….

This is a blog about the ups and downs of trying to navigate successfully throrough the heartache and fear and intense emotions that accompany a major life-changing organ transplant.

I am going to start by sharing the major events that led to this journey and then eventually bring you up to the present and hopefully let you follow this path into my future. We have a long road ahead….I am glad I have you here with me. I feel stronger just knowing you are there.

If you would like to donate to Michael’s transplant fund, please click here.

How did I get Here?

Life was never supposed to bring me to this place. I had a pretty good start and a focused plan to become a successful photo-journalist after college. Then armed with a camera and a pretty good eye I headed out in the world. First stop, Norway. I followed the tall slim, handsome dark-haired Norwegian student that I had met in my home town across the ocean and back to the country he loved —  hopelessly starstruck and in love. The Nowegians have such appealing accents…enough so to lure a naive college girl from the safety of her bland midwestern existence to exotic and wild faraway places with the promise of sea and sand and beautiful scenery.  And what exactly did I know about Norway except that the men were attractive and fond of having fun and making partying a little bit too hard on the weekends? Absolutely nothing. Yet, I let my fear be overshadowed by my braveness, quite proud of myself for leaving my small, hick midwestern town to venture out in the world to a foreign country. Piece of cake I thought! Oh right, a different language, well a slight problem, but I can figure that out, right.

I remember that I thought shopping was tough…what the hell was in these cans in the grocery stuff with labels I could not read and no one who could tell me what suspicious food type was encased within. I bought several cans of varying sizes and semi-familiar pictures on the label hoping for beans…beans I could deal with. Little did I know that beans were not a normal staple in Norwegian households…so I ended up with several useful cans of food that I couldn’t identify.

It was a good start for this brave young South Dakota girl, as lost in the fjord country of Western Norway as the young wives who traveled to my South Dakota in the 1800’s and felt as lost and alone as I did in the cities they left behind. It was almost as if we had switched places and times. Each struggling to get past our own misery and hopeful to make a good life in our new country.