A New Year's Update from Miranda

This year we learned to count time in seasons, not years.  We wanted to pass time with more awareness of what was happening around us: the changes in the trees, the weather, and knowing when and how to grow food.  So much happens in a season anyway.

In the first months of 2014, as winter yielded to spring, we had so many hopes for the year.  In the middle of March we confirmed what we’d suspected for the past few years: Greg has Huntington’s disease.  Two days after receiving the diagnosis we ran a 5k (for those who aren’t aware, we’re not exactly regular runners).  Watching him dart through the crowd as we ran, I felt very alive: it seemed like Huntington’s disease wouldn’t touch us for a long time.  It’s easy to be hopeful in the spring and summer: the sky is blue, the trees fill with buds, and the air starts to warm.  The diagnosis seemed like a gift in some ways.  There is some resolution in having fears confirmed, rather than living in uncertainty.  Even more powerful was the gift hidden in the diagnosis: how often are we reminded, after all, that the people we live with and love are finite?  It seems that life often lulls me into complacency, under the illusion that we will all be here forever.  It’s easier to love better and more deeply when we remember this isn’t the case.  

This fall, after a summer that was as lovely as it was unsettling in unexpected heartache, it was harder to keep that optimism.  The hope I feel without trying when spring blooms appear takes a lot of work to maintain in the grey drizzle of fall.  We noticed some physical changes beginning with Greg’s body, and have tried to make light of them.  Our son has begun to talk about the things that he wants to do with his dad now, while he can.  Looking forward at seasons to come is even more difficult.  We are at the beginning of many goodbyes.

When I used to think about facing Huntington’s disease, I thought about it as something I’d do alone.  In the summer, soon after the diagnosis, a friend sent us to a podcast from On Being that reminded her of us.  I discovered this Story Corps video of “Danny and Annie” there, a treasure tucked into one of the sidebars:
(https://www.youtube.com/watch?feature=player_embedded&v=WNfvuJr9164

I think I’ve always imagined our story, if it had to include Huntington’s, would be kind of like Danny and Annie’s story: I would walk in with Greg, and walk out alone.  And in some ways, I will be alone.

But I don’t think of our future that way anymore.  If 2014 taught me anything, it was that we don’t have to be alone.  In 2014 we experienced big losses.  Some of them we saw coming, and some of them came out of nowhere and broke our hearts.  But we’ve met those losses in the middle of love from friends and family who love us so deeply and remind us who we are.

So in 2015, I hope we remember to live in each season as they pass.  I hope we remember that the people we love won’t be here forever, and act accordingly.  And for those who have asked for an update: yes, we will be going to Italy!   

WHAT IS THIS BLOG?

This blog was set up with one specific goal: to help a very, very deserving couple fulfill a life-long dream to live in Italy. We are hoping that you will donate to a very worthy cause.  

We want to help send our dear friends Greg and Miranda Cunningham on a much deserved trip to Italy, and we need your help to do so.

Greg has been diagnosed with Huntington’s disease.  There is no cure for Huntington’s disease, and we are not sure how many healthy years Greg has left ahead of him. 

You can read about Huntington’s here:
http://en.wikipedia.org/wiki/Huntington%27s_disease
or here:
http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/basics/definition/con-20030685

Greg and Miranda are wonderful people who deserve a vacation together while Greg is still able to appreciate it.  Greg has always dreamed of living in Italy, but because they spend all their money care-giving others, they have never been able to afford to leave the country.  Greg and Miranda are kind, smart, generous, strong, gentle people who have spent their entire adult lives caring for others.  We think that as Greg faces this terminal disease, its their turn to be taken care of, and have this dream come true.

Please read the posts below to learn more.

GREG AND MIRANDA'S STORY

In Miranda's own words:

our story

"When Greg and I first got together, I thought about Huntington’s disease all the time.  His mother had it, and I tried to imagine what it would be like if Greg developed the disease.  I remember reading the words of a woman whose partner had been diagnosed with the gene: “Sometimes we see an older couple together in the park and we feel sad, thinking ‘that’s probably not going to be us.’”  Over the years we became so busy caring for kids and teens and providing end-of-life care for both of Greg’s parents that I haven’t really had time to dwell on those words.  But Greg’s positive diagnosis means that we probably won’t be that couple either."

"People often joke that we began parenting right in the middle: Greg’s siblings were young teens when we married.  His mother was in the advanced stages of Huntington’s disease, and we became caregivers for his siblings, as she could no longer parent them alone.  As one of his mother’s primary caregivers, I helped her cope with the slow loss of her ability to walk, talk, and think, and I knew that I was only strong enough to bear witness to the disease one more time.  Because of the hereditary nature of the disease, we decided to adopt.  We adopted two older children, ages 10 and 11, because I knew that no matter what happened to Greg, our children would have a chance to know him."

"Over the last few years, Greg has lost the ability to do the work that he used to do, slowly stepping down his responsibilities until he could not work at all.  I am working two part-time jobs while completing a PhD in Social Work.  Since Greg has been out of work for over two years, and I am a graduate student working part time, we live on a tight budget.  And it probably comes as no shock to anyone that two people who have helped in caring for so many teens (and other relatives affected by Huntington’s) over the last fourteen years have no real savings to speak of." 

"When Joseph first approached me about this idea, I felt awkward.  It’s difficult to ask for money, especially knowing how many of our friends and family haven’t had the chance to take a trip like this.  I think we just always thought we’d have the chance to do it someday, like most of us tend to do.  Greg’s diagnosis means that we might not be able to wait too long for that chance.  We’re so grateful for the prompting by our friends to do this."

IN ADDITION:

Miranda is being modest above. Below is a more comprehensive list of the people that she and Greg have cared for over the years:

• Greg's mother Linda:  for whom they provided much caregiving, including end-of-life care.
• Tim and Kim:  Greg's siblings. When they were teens, Miranda and Greg raised them as parents. 
• Jessica, Will and Roy:  to whom Greg and Miranda were foster parents.
• Josh and Merrit:  whom Greg and Miranda adopted.
• Sean:  a family friend, who lived with Greg and Miranda when he was moving home from college. 
• Chris:  Greg's cousin, who lived with Greg and Miranda first as a teenager, and then again with his sister Nichole and their mother, his wife and baby.
• Sarah:  their friend, who Greg and Miranda took in to their 2-bedroom apartment shortly after they married when Sarah found herself in need of a place to stay with 2 toddlers and an infant.
• Tim and Leina'ala:  Greg's brother and wife, who moved in with Greg and Miranda when Tim was transitioning out of the Marines and looking for employment.
• Daniel:  Greg's dad, for whom they also did a lot of caregiving and end-of-life care.

WHAT WE, THEIR FRIENDS, ARE DOING

Greg has always dreamed of living in Italy.  Particularly, he wants to stay in the beautiful Cinque Terre region of Northern Italy, relaxing and taking in the local food, sights and culture. 

Our plan is to pay for Greg and Miranda to spend June, July, and August of 2015 in Manarola, a small town in Cinque Terre. 

We want to pay for their airfare, their car rental and gasoline, apartment rental, food and meals, entertainment, and other expenses.  

To send the two of them there for three months will cost a total of $17,000.

 

HOW YOU CAN HELP

We are asking you to donate.  We do not expect random strangers to contribute, and so we are focused on raising this money from our own social and professional circles. We have sent this to our friends and colleagues, and are asking you to forward it to your networks.

You can donate at whatever level you can.  If you can contribute $1,000 to make this dream happen, we would obviously be very grateful.  But if you can only donate $5, that too is equally appreciated.  With enough people donating, even a little bit, this is a very manageable amount to raise.  You can donate in one lump sum, or you can arrange to donate a fixed amount over many months.  You can donate anonymously if you prefer, or openly if you want to write an encouraging message.

Based on the research we have done about the costs of this trip, here is what your money will make possible:

o  $30 will pay for a day of going to museums

o  $50 pays for the two of them to eat a delicious dinner in an Italian restaurant

o  $75 pays for one night in their rental apartment
o  $200 pays for gasoline for their car rental for a month

o  $300 pays for their car rental for a week
o  $350 pays for their food for a week

o  $500 will pay for their apartment rental for a week

o  $1,100 will pay for one airline ticket
o  $2,000 will pay for their apartment rental for a month

In addition to your donation, you can help in other ways. If you can donate frequent flier miles, please contact Joseph at JNDeFilippis@gmail.com and let him know.  And please forward this to your own friends and colleagues, and ask them to give what they can.

Please help this amazing couple enjoy the time they have left together fulfilling one of their lifelong dreams.  Every dollar will help.

HOW TO DONATE

To make a donation, simply click the giant "Donate" button below to pay by credit card or with a paypal account. 
You will have the choice to make a one-time donation, or set it up to make an automatic monthly donation.
Thank you.