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.