A Darkly Humorous Christmas Letter
I thought I would share the honest Christmas letter one might send out as an HD family. We do laugh at some of the things that happen, and even the most terrible incidents are darkly humorous. As you know, I am not normally a "Debbie Downer," and I would never send this to someone in real life. Hopefully you'll laugh a little with us, and pray for a cure!
Dear Family and Friends,
This Christmas season finds us all licking our wounds from a particularly brutal year. We’ve survived and we are sending you this letter to prove it!
As most of you know, we usually take a week long vacation sometime during the year, but we elected instead to take several short but meaningful trips to an Emergency Room. We’ve seen two different ER waiting rooms, so message us if you want the low down on the most commodious. Suffice it to say that you get in quickly if you A: come by ambulance (our preferred mode of transport this year!), B: Have an obviously malformed bone somewhere on your body, or C: have a bleeding head wound. Surprisingly, several of the doctors were only slightly familiar with Huntington’s, and one actually questioned the diagnosis. Ahhh…live and learn. We made most of our trips early in the morning, but ER waiting rooms are busy all day.
We’ve moved Lacy into a nursing home this year. Trying to find a nursing home that takes HD patients can be difficult. I suppose it’s the yelling, anger, and memory problems that cause the most disruption. We were fortunate to find a facility near our home. We are vigilant in visiting, so we know what is going on day by day. The home has been very good about cutting up our son’s food, as choking is an issue now. Since Lacy one can no longer walk, a wheelchair is used daily. We’re certainly glad that they provide adult diapers as incontinence plagues our boy at this stage of the disease.
As I said, we visit regularly, but we never know what awaits us. HD sure keeps you on your toes! We are often accused of multiple crimes when we visit, the two most egregious being "Jaywalking" and "Rambunctioning." Rambunctioning often carries a sentence of death, so we try to avoid that one. Fortunately, Lacy has pardoned us before sentences were imposed, but we have to be sincerely sorry. We tag team it with the nursing staff if they are on the skids with our son and can’t get him to take his nighttime meds. We know to bring a book to read while Lacy rants and raves at us. Eventually the anger fades and we can gently suggest that he take his medication. Lots of late nights, but that provides time for reflection. When life give you lemons....
Family traditions die hard, but when HD invades your family life, those traditions take a death spiral. After the Thanksgiving Day Debacle, we’ve decided home visits are out. I won’t go into detail, but I will say that Lacy informed me I should look for a new husband. The screaming and finger pointing only ceased when Kenny and I ate in the living room. Good times. Consequently, we don’t have to make a big Christmas breakfast this year. You know what they say…every cloud…
Yes, we are still standing and even laughing occasionally at the awkward moments we face courtesy of Huntington’s Disease. We trust your year has not been as eventful as ours. Here’s to a peaceful Christmas and hopeful New Year. Here’s to a cure.
Love, A Huntington’s Family