Live Long and Prosper Grandpa Leonard

I have been following Leonard Nimoy on Twitter for quite some time since hearing that he was battling COPD, the same disease that my partner, Michael, is fighting. Although I was never a “Trekkie” I wanted to follow how he was dealing with this illness and hopefully gain some wisdom from his words. His posts on Twitter were always interesting…kind and gentle and they gave me comfort. A little over a year ago he invited his followers to become his honorary grandchildren. Leonard only requested that you send a message saying “YES” and you would be accepted into his honorary family. I sent a message immediately explaining that I had lost my own dear grandfather to COPD and that my partner had the same illness. I felt an uncanny comfort in knowing that I now had a new grandfather out in the world, even one that I had never met. I didn’t really understand the feelings I was experiencing, but I felt safer, protected somehow.

My own grandfather, Grandpa Jack, had died when I was in my early twenties leaving a gaping hole in my heart and my life. Losing my father as a young girl, my grandpa quickly became my hero, my role model. He became the man that I judged all other men by. His kindness, his generosity and wisdom became an almost impossible standard for any man to live up to.

And then fortune brought Michael back into my life, followed many years later by my new honorary grandfather. I couldn’t have been more delighted to have found there were actually two men that could compare to my grandfather. What was sad and ironic was that both were inflicted with the same terrible disease. What are the odds?

I delighted in “Grandpa Leonard’s” posts to his new family. The delight was no doubt shared by the hundreds, if not thousands of new grandchildren he had invited so graciously into his life.

Now he has left this world, as did my Grandfather Jack – both taken by this terrible, cruel disease. Only one of these three extraordinary men is left in my life and waiting, hopefully, for his second chance. We are praying that Michael beats the odds and has the opportunity to change lives and to mentor others as both of my grandfathers did before him.

I will miss Grandpa Leonard’s words of wisdom and his wit. It is a very special man that invites the entire world into his family. Live long and prosper, Grandfather. Your family will miss you terribly.

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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.