Posted tagged ‘Family’

Happy Birthday, Dad

July 9, 2012

Hi, Dad. Today is your 77th birthday.

And after that, I have no idea what to say, and for that I feel guilt. Our family is in the process of adjusting to the addition of a new, uninvited and, so far, unappreciated member of the family, named “dementia.” Months ago I took solace in labeling it “early onset,” unconsciously feeling that I could keep it at bay and somehow control its pace of intrusion into our everyday lives. (Note to self: “You’re just not that powerful. Get over it.”)

I am thankful that we have another day together. You remembered our names today, and the names of your grandchildren, and I know that makes you feel good. But no, just like yesterday, and the day before that, you still cannot drive your car, and you need to have one of us go with you if you go for a walk. It is a safety issue both for you and for the other unsuspecting residents of our quiet little town. And yes, I know we will have this conversation again this afternoon, this evening, and tomorrow morning – although it may need to be with my wife, or with mom, because none of us can consistently withstand your anger and frustration yet remain compassionate. We promise to keep trying. You don’t need to take your car in to the shop for work, and, more importantly, you don’t need to pick it up. It is parked in the carport outside the back door, just as it has always been. I did not have it impounded, and you don’t need to speak with anyone at “that outfit” to restore your driving privileges.

Just as we’ve discussed every morning for the last month, we need you to un-pack your clothes and put them back in the dressers and closets, because this is your house. This is where you and mom have lived for 43 years. There is no other “home” to go back to, and, as you blow out the candles on your cake, I silently wish for the words to help you comprehend that this is your home – to somehow cut through the fog and anxiety that are clouding your acceptance and understanding. This is where you raised your children – your daughter and me. The neighborhood barbecues, the base to which we returned from all the school functions, the ballet recitals, the Little League games you coached, the high school games of football and baseball. This is the home you came back to after we all gathered for an incredible week of fun at Disneyland last year to celebrate you and mom being married for 50 years.

I know your world is getting smaller. But we’re trying to help. We’re all on your side, committed to supporting you (and each other) through this.

Then again, this afternoon, after discussing that we would walk to REI together, you snuck out the back door, to prove to us that you don’t agree with the new life rules and have no intention of respecting them. That was an hour ago, and I don’t have the grace to drive around looking for you. I hope you’re not trying to buy Red Bull (that your doctors and family have expressly prohibited), which you have typically done when unsupervised. Or that you are not roaming parking lots, as you’ve done before, trying car doors, looking for one that’s unlocked so that you can drive it (nevermind that the padlock key you carry will neither fit nor activate the ignition).

Yes, I’m angry, and I tell myself that I’m angry at the dementia. But it’s my father that is telling us over and over again that his family does not matter, is less important than his “right” to drive and does not deserve to know where you go when you disappear. And I’m having a very hard time separating the symptoms of dementia from the behavior of my father right now. And it sucks.

Happy Birthday. I wish.


Our Twelve Days of Christmas

December 20, 2011

Growing up, I always wondered about “The Twelve Days of Christmas.” Other than a raucous carol to be sung enthusiastically along with Mitch Miller, the point was lost on me. When I was young, our family routine was for me to wake up at 5am, bolt (very, very quietly) to the living room, scope the mass of boxes wrapped around the tree, sneak back to bed, twitch for 5 minutes, then go wake up my sister and parents to start the mayhem. By 9am, all the packages were opened, partially played with, and the round of phone calls to distant relatives begun. By 7pm, dinner and dishes were done, the house cleaned and we were exhausted. And that was the end of Christmas. On to the next. That is not an indictment of my parents, it is what we did. All of us in my neighborhood, all my friends and their families.

This routine (without the trip into my parents’ room) continued through my early adulthood, and I carried it with me into married life. My wife and I actually slowed it down a bit, as we were always geographically separated from family, so we would start later, but inevitably, by 7 or 8pm, we were finished.

Then we had children. I was anticipating going back to the old routine. Relishing it, in fact. It didn’t quite work that way.

As they both became mobile in the toddler years, things were different.

Our son, who has Down syndrome, does NOT like change. So much so, in fact, that he refused to go into the living room because we had placed a TREE in it! Over the years, he has worked his way up to accepting the decor. I wouldn’t say embracing it, but accepting it. Also, he has never, to this day, been a big fan of wrapped presents. Developmentally, it just isn’t a big deal. It is a colored box. Big deal. And usually, there is one gift that he loves most. And he is content to play with it for several minutes, then retire to a quiet place and chill out. There is no reason to mess with any other colored boxes. So there has never been a high level of Christmas excitement for him.

Our daughter was the polar opposite. She would be up at the crack of dawn (her usual rising time), and tear down to the tree. She would unwrap as much as we would allow, as fast as she could, and about half way through, would completely melt down. We’d take a break of a few hours, and resume. As she got older, the break needed to last longer. At first, we struggled to understand what was happening. We knew some of it was wrapped up in sensory processing disorder, and eventually would embrace it through a diagnosis of Autism (Aspergers syndrome) and several accompanying diagnoses.

Around the time the kids were 6 and 5, respectively, it dawned on us. There was no set rule that said everything needed to be done by a certain time, or even a certain date, for that matter. We had always taught the importance of Advent, and we built on that. And we also came to grips with our own version of The Twelve Days of Christmas. Our kids would open a couple of items whenever we were all gathered in the living room, then save the rest for later. The days stretched, and so did our celebration of the season. It took the pressure off the kids, and allowed us to help them fully enjoy the season.

It did make for some awkward phone calls in the early years from relatives wanting to know the kids’ reactions to their cool gifts. But after explaining what we were doing, most understood, and waited for the day theirs was opened. And the puzzled look on my daughter’s friends’ faces is priceless when they see wrapped presents still under the tree several days after Christmas.

Recently, I felt validated when a theological scholar (and amazing songwriter), Glenn Packiam, wrote that, “Part of reclaiming a calendar centered on Christ means learning to let Advent be Advent – to prayerfully long for Christ’s coming and be attentive to the ways He is coming to us even now by the Spirit…and then let Christmas be Christmas – a burst of joyful celebration that goes on for 12 days!”

I’m not sure we’ve pulled off the entire 12 days, but we’ve pushed it through the beginning of the new year. And it’s a great reminder for us to start the year with a spirit of joy and gratitude. As I’ve told friends over the years, our Christmas celebrations look nothing like a Norman Rockwell painting. Some days it more resembles a Picasso, and others, a Monet. But they are beautiful, they are unique, and they are treasured. Just like my family.

Merry Christmas!