As the winter drags on, we have settled into a lock-down routine. During the week the boys play together, listen to audio books, work/play on the computer, watch a little TV and take care of routine things like treatments and baths. On weekends we try to add a few special events. Last weekend the cousins came over for a sleep-over. The boys LOVE their cousins. Drew and Tommy have been together since they were infants when they shared a nanny. As usual we took pictures and video. The next day Drew asked me to make a “music video,” otherwise known as an Animoto video. He loves these videos; we often snuggle together in bed and watch the older ones over and over. Drew chose the name–Cousins Forever–and also chose the music. Enjoy:
When Saturday rolled around again, Drew would have loved a repeat of the sleep over. However, he had to settle for a morning visit from Auntie Kirstin and Tommy. The rest of the day was filled with family fun. Dad was busy installing a new hot water heater–YEA! So, the boys played together most of the day. A favorite pastime is “swinging” in the sling that we use for Drew’s lift system. My personal favorite clip in the following video is when Drew uses the vibrations of his vest to play the harmonica.
Only a few more weeks–or is it months–until summer!
Nana Barb
If you smile when no one else is around, you really mean it. Andy Rooney
PS If you are having trouble viewing the videos you might try using Firefox or Safari. Internet Explorer doesn’t seem to play them.
Think about the best gift you ever received. It was probably unexpected–that is, something you hadn’t even thought of getting for yourself–and meaningful in a personal way. Today I received just such a gift. The UPS man dropped off a package shortly before Jen arrived home. She opened it and presented me with a lovely cross engraved with the phrase “on my side.”
You see, “on my side” has a very special double meaning for Jen and me. First, it is, perhaps, Drew’s most common utterance. Because he is unable to reposition himself, he frequently requests to be turned to his other side. But, more significant to Jen and to me it represents the numerous people who are on Drew’s side. Friends, family, teachers, doctors, the list goes on and on. Drew is a very happy little boy who loves his life, thanks to everyone who is on his side.
Thanks, Jen! I will cherish your gift.
Nana Barb
PS Thanks to everyone who voted for the Gwendolyn Strong Foundation in the Chase Facebook vote. I know I bugged you with requests and numerous emails. However, it was well worth it. We took sixth place and received $100,000 for research. If you ever find yourself with a few extra dollars, please consider sending them to the GSF. They will be used to find a treatment/cure for SMA and every dollar counts.
We’re about midway through the cold/flu season. Ever since we instituted lock-down all of the Draz kids have been healthy! No days in the hospital, no trips to the ER or even any scary nights full of extra treatments for Drew. When we explain lock-down, the response is often that it must get very tedious for the children. However, that is really not the case. They know nothing else during the winter and perfectly happy most of the time.
This afternoon the guys–Ry, Drew and Jay–prepared to watch the Vikings in the playoffs by setting up a tent in front of the TV.
Even though the Vikes won, the boys lost eventually lost interest and took an unscheduled nap.
You saw it last week on American Idol: a 62 year-old general singing his original song called “Pants on the Ground.” Now watch Drew sing his version.
On New Year’s Day the Draz Fam was honored to be visited by another SMA family. Sophia’s family is very similar to the Draz family. Like Drew, Sophia is six. She has a younger sister, close in age to Ryan and a baby sister just a few months younger than Karli. Drew adored Sophia, the middle children played together, the babies were happy and the adults thoroughly enjoyed each other. Drew had such a good time that he is begging his mom to arrange a joint vacation with Sophia’s family.
Jay learned that Sophia loves to dance in her chair, so he turned on some dance music. Sophia began to twirl in her chair. Before long, Drew joined her. In a matter of seconds the children were in synch with their chairs spinning exactly together.
Drew loves the Animoto videos that are created with music. He specifically asked me to create one with images and video from the evening. He even chose the song. He has watched it over and over, reliving the evening.
What a wonderful way to begin a new year; this was an evening never to be forgotten.
Nana Barb
Happiness is not achieved by the conscious pursuit of happiness; it is generally the by-product of other activities.
Aldous Huxley
It was billed as the second annual Draz guys New Year’s Eve celebration. Dad took food orders from Drew and Ry and made a special trip to the store. Food was prepared and then the guys settled in for an evening of talk and TV. There was great anticipation of watching the ball drop in Times Square. Although I was not officially invited to the event, I wandered out a few minutes before the ball dropped.
Yup, Ryan was sound asleep. Drew, however, was wide awake and was convinced that Ry needed to be awake to see the ball drop. He insisted that his dad wake Ry for the big event. Dad did his best:
Finally the moment arrived:
Drew made it two years in a row. He was officially awake to ring in the New Year. (Thank goodness for the time zone difference!) The image below was taken at exactly 12:00–New York time, that is.
I had selected a quote to use at the end of this post. However, the one I selected can’t even begin to compare with Drew’s words: “Nana, it was a great 2009.”
Yes, Drew, it was. Here’s hoping and praying that 2010 will be an even better year for you.
Nana Barb
Karli owned several American Girl dolls before she was even born. You see, Jen and I are both fascinated with history and each American Girl doll comes with a story reflecting life during some historical period. As we sheepishly bought a couple of the dolls over a year ago, we were informed that it happens all the time. We weren’t sure whether Karli would even be interested in dolls. After all, she is being raised with two brothers and her two cousins are boys. However, it was love at first sight. A few days before Karli’s birthday we joined Anna and Claire for lunch at the official American Girl doll store at MOA. Because it is a busy time of year, service was a bit slow. We were worried that Karli would get tired of sitting. No problem! She loved every single minute of the outing. She sat in her high chair, right next to the special chair provided for her doll, and beamed and “talked” for the entire two hours we were there. I think we may have to make this outing an annual event!
This special afternoon was the first of two special celebrations for Karli. Watch for details of the family birthday party.
Nana Barb
“Today is your day! Your mountain is waiting. So… get on your way.”
- Dr. Seuss
The day after Christmas was, perhaps, even more fun than Christmas Eve or Christmas Day. Aunt Dana arrived and Anna and Claire returned. I have already used the theme and music in the following video. However, Drew loves that particular theme and he asked me to create another video using it. He says “it shows a book that holds our memories.” He has watched both of the videos so many times that he knows the words to the song by heart.
Nana Barb
Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.
~Norman Vincent Peale
Plans for the Draz family holiday changed due to the blizzard. Unfortunately Aunt Dana and Uncle Dave were not able to join the family due to poor driving conditions. Thus the traditional Christmas Day pancake breakfast prepared by Grandpa John was moved to Christmas Eve Day since the boys were so excited to help him prepare it. For the children receiving gifts was, of course, one of the most exciting parts of the day. Drew loved his gifts so much that he hugged each one.
In the evening cousin Tommy and Auntie Kirstin arrived. Michael had a cold, so he and Uncle Mark couldn’t join us. It was not the same without them. First the boys played and everyone enjoyed the traditional hors d’oeuvres feast. Then Anna and Claire arrived and it was time for the adults to enjoy the white elephant gift exchange. Meanwhile Anna was helping Drew create a very special gift for his mom.
Toward the end of the evening Anna brought her dog in for a visit. She then ended the evening with the children by reading “The Grinch who Stole Christmas.”
It’s an annual tradition: the cousins come over to decorate a gingerbread house. They had a great time and occasionally sneaked a few of the candy decorations into their mouths. When the house was complete the boys retired to the couch for a holiday video. Luckily no on noticed that the roof of the house collapsed due to decorations shoved into the seam. Enjoy the video:
One of my former students, Zach, remembers his old first grade teacher each year. I always look forward to seeing Zach and to the card which includes a hand-written quote. The quote on this year’s card was beautiful: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment or the smallest act of caring, all of which have the power to turn a life around. Leo Buscaglia
Happy holidays to all,
Nana Barb
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