The Draz Fam

I’m going to begin this post about Ryan with a statement about Drew. Despite Drew’s considerable physical disabilities, his quality of life is amazing; no one who knows Drew would dispute that fact. What may be surprising to some readers is the identity of the person I feel is most responsible. While Drew’s parents, aunts and uncles, grandparents, cousins, sister, doctors, teachers, and therapists all contribute; there is absolutely no question in my mind that Ryan is, hands down, number ONE!

Yesterday as I sorted the laundry I noted that Ryan’s jeans had a hole in one knee.

Believe it or not, this is a first for Ry. Why? Because, unlike most children, he did not spend time playing on the floor during his toddler years. Rather, day after day, he sat in a chair across from Drew so that they could play on Drew’s tray.

Ry is having a great year in first grade. He is a good reader and catches on to math. Ry has always struggled with small motor skills. Although he is improving, his printing is very difficult to read. Interestingly, at home he loves to write, color cut and paste. This is an attribute I especially admire in Ry: while most of us avoid things that are hard for us, Ryan embraces them.

Ryan is the middle child; he has a physically disabled, smart, savvy older brother and an adorable, sassy younger sister. Yet Ryan is most definitely his own person. Although, like any child, he has his off days he describes most of his days as “fabulous.”

Ryan has decided he is going to buy a home being built down the street from us.

Ry chose the enormous house because he has invited everyone (including me) to move in with him after he buys the house. He and Drew have big plans.

Ryan’s position in the family gives him an advantage in developing people skills. Those skills, along with his enthusiasm about working on things that are difficult for him lead me to predict future success in whatever path he chooses. I can’t wait to see how he chooses to use these skills in the years and decades ahead.

Go, Ry!
Nana Barb
Don’t be afraid to fail. Be afraid not to try. ~ Michael Jordan

Three quick stories:
1. Karli’s big-girl bed.
When Jen was about six she decided that she HAD to have a canopy bed. After an extensive search we found the perfect one. She loved it so much that I was determined so save it in case she had a little girl of her own. Every time we moved over the years Jim patiently moved the frame and canopy. Finally it was time to pass the bed on to Karli. We retrieved it from the basement, made a few repairs and set it up. Karli was thrilled–until it was actually time to go to sleep in it, that is. It has now been set up in her room for several weeks. Each night we ask her whether she wants to sleep in her big-girl bed and each night the answer is, “Maybe tomorrow!”

2. Picture time.
Karli is certainly accustomed to having her picture taken; after all we’ve taken at least one picture every single day since her birth. Usually she is cooperative, knowing that the sooner she gives us her “pretty smile,” the sooner we’ll be done. Lately she has become more resistant; guess it was inevitable. Here’s what happened when I saw her playing in the shower the other day.
Me: Karli, you look so cute. Let me take your picture.
Karli’s response:

Me: Karli, I’ll give you a treat if you let me take your picture.
Karli: What kind of treat?

Me: Some ice cream.
Karli’s response:

3. Fun with Auntie Dana.
Dana visited on Saturday. She cooked a wonderful dinner for us and built a paper towel tower with the children.




Nana Barb
“A life-long blessing for children is to fill them with warm memories of times together. Happy memories become treasures in the heart to pull out on the tough days of adulthood.” Charlotte Davis Kasl

On Wednesday Drew had several appointments at Gillette Children’s Specialty Center. Drew, Karli and I dropped Ry off at the bus stop and then headed for Gillette. We saw three doctors and two technicians; every single one of these professionals were amazing. They are competent, compassionate, creative and open-minded. They listen, ask questions and confer with caregivers when making decisions. When we first visited Gillette about six years ago, the center occupied a small space next to Regions Hospital. Since then Gillette has expanded many times over and has become the go-to center for children with neuro-muscular diseases. I am virtually certain that there is no place on this planet that Drew could receive better care. In addition to the three physicians he saw last Wednesday, he sees an additional four docs on a regular basis. I am so very thankful for the care that Drew receives; I only wish that every child with SMA could receive similar care from this amazing team of doctors!

If you are a regular visitor to the Draz Fam blog you probably noticed that Karli is wearing clothes rather than pajamas in the video. I began the day before the visit to Gillette telling her that all the other children would most likely be wearing clothes rather than PJs. On Tuesday evening she was till adamant that she preferred to wear her pajamas. On Wednesday I asked her to reconsider; she ran to her dresser and put on a pair of shorts. I told her that it was cold and we were expecting snow that day. At that point she ran to the dining room window and spent the next 15 minutes watching for snow. Eventually she tried on a couple pairs of tights. They were “too tight.” This was not surprising since we have not updated her clothes for several weeks due to the fact she will only wear pajamas. Finally I suggested she try a pair of jeans. She added a Christmas shirt, I breathed a sigh of relief, and off we went!
Nana Barb
All I really need is love, but a little chocolate now and then doesn’t hurt. ~ Charles Schultz

With the holidays over and lock-down in full force I thought it might be fun to blog a typical January weekend. I began taking pictures early Saturday morning. As it turned out, the weekend wasn’t exactly typical as we had more visitors than usual.

The children started the day with a pancake breakfast. Soon Auntie and Tommy arrived with some new games. The games were carefully selected by Auntie to be games that use the brain so Drew was able to participate fully. We also began a 50 state quarter collection. We’ll be studying the states one by one. Each time the children will add that particular coin to their collection. Years ago I began collecting the quarters, so I plenty of the first 25 that were issued. Then I got busy and stopped collecting. Once we get past the first 25 states Jen will probably be bringing rolls of quarters home from the bank as we search for the rest of the states.

During the afternoon the children played with colored play putty while Uncle Matt put up new book shelves and a huge world map in our room.

In the evening Kelly, “Big” Ry and Elliott arrived for a visit. Everyone shared pizza, time in the hot tub and had a wonderful time!

On Sunday the children were thrilled with a visit from Lindsay. Due to our unseasonably warm weather the boys went outside for some football with Papa.

We are blessed with so many caring friends and family that help make lock-down not only tolerable, but actually great fun!

Nana Barb
Act as if what you do makes a difference. It does. ~ William James

After considerable discussion, the Draz Fam has arrived at the top 11 events of the past year. So, in no particular order, imagine a drum roll…
1. The Draz Fam visited the San Diego Zoo.

2. Drew and Ry went to Zoo Camp.

3. Jen got promoted to Senior Human Resources Manager, Assistant Vice President of US Bank.

4. The Draz and Juhl families celebrated Great Gramma’s 95th Birthday.


5. Ryan started first grade.


6. Ry moved in with Drew and me to be our nighttime buddy.

7. Jen won the waterslide contest, adult division, and Ryan won the children’s division at the Westin Resort in Scottsdale.

8. Drew and Ry went fishing on a pontoon boat.

9. Karli learned to swim.

10. Muumuu and grandpa celebrated their 50th wedding anniversary.


11. The Vikings beat the Cardinals. (This was Drew’s choice. Unfortunately I don’t have a picture as I didn’t realize it would be so noteworthy at the time of the game.)

Now it’s time to start collecting memories so that we can list the top 12 events of 2012.
Nana Barb
Carpé diem quam minimum credula postero. ~ Horace (Roman poet)
Translation: Seize the Day, put no trust in tomorrow.

New Year’s Eve: Last year we were able to fool the children. We set the clocks ahead a few hours. When they read 12:00 we watched the ball fall (a previous year’s celebration on YouTube) and headed for bed. Drew was confused when he noticed the clock on my nightstand read 9:30; I pleaded ignorance.

We knew that we wouldn’t be able to get away with setting the clocks ahead again. Jay had to work and neither Jen nor I wanted to stay up until midnight with two tired boys, so we just told them that we were all going to bed at 9:00 this year. We did some celebrating during the early evening. First the boys headed outside with Papa for some football. Then we all headed for the hot tub; it was strange to have no snow as we celebrated the last day of December.

On New Year’s Day cousin Tommy came for a visit. Everyone headed back to the hot tub; it finally snowed so the ground was white as we welcomed January, 2012.

In the evening Jen and I enjoyed some wine. For whatever reason we decided that it would be fun to go to the new Woodbury Super Target???? We enlisted Papa as our sober driver, told Karli she was going on an adventure (trust me, Target is exciting when you’re in lock-down), and off we went. Drew put in a request for Quakes and Ry wanted dry erase markers. Jen and Karli spent a LONG time looking at clothes. However, since Karli wears pajamas 24/7, and there were no PJs that caught her eye, much to Jen’s dismay we left with no new clothes for Karli.

At the end of the day the children enjoyed snacks, iPad time and some bedtime stories.

It’s been a wonderful year for the Draz Fam. Watch for our top ten events of the year.
Nana Barb
Yes, I know I’ve used the following quote before. There are more profound quotes about welcoming the new year, but this is my favorite:
Cheers to a new year and another chance for us to get it right. ~Oprah Winfrey

On December 29 Drew and Ry’s baby sister turned three. We have all enjoyed every single minute with Karli (well, I guess we could have done without the terrible-two tantrums:) Because Karli’s birthday comes right after Christmas we celebrated it last summer, so we didn’t have a party. However, we did have a photo shoot. We have taken a picture of Karli every single day since she was born. During the last few weeks Karli has decided to spend all of her time in her PJs. Thus, we had to bribe her to put on a dress for her birthday pictures. The minute we were done, she put her pajamas back on.
Enjoy:

Nana Barb
“A daughter is one of the most beautiful gifts this world has to give.” Laurel Athedon

Drew was healthy, Ry was recovered from his procedure, our friends and relatives were here; Christmas 2011 couldn’t have been better.

We began Christmas Eve with the Second Annual Draz Fam program. The children read the story of Jesus’ birth, Mark read “The Night before Christmas”, Jay and John told Christmas jokes and Papa passed out the treat stockings. The program also included a slideshow of family gatherings during the past year and some JibJab videos.

After the program the adults enjoyed dinner while the children participated in holiday activities. They searched for hidden candy canes and tried to guess what holiday objects were sewn in Christmas stockings.

On Christmas Day Jen and I flew to Phoenix to spend some time with Great Gramma and Debbie and Dave. Meanwhile, back in Woodbury Jay fixed an amazing meal and the children enjoyed time with Muumuu and Grandpa.

I’m not sure how we’ll be able to top Christmas in 2012, but we’ll look forward to giving it a try!

Nana Barb
My idea of Christmas is very simple: loving others. Come to think of it, why do we have to wait for Christmas to do that? ~ Bob Hope

The Draz children are like many other yuppie children; if there is something that they REALLY, REALLY want, they most likely have it. In years past, Christmas gifts were often used and admired for a few hours and then essentially ignored. Thus, a few years ago we began to emphasize the true meaning of Christmas as giving rather than receiving. Each year we choose a specific way to give back. This year the Draz Fam is donating $50 in the name of 20 professionals who are a part of Drew’s team to Sophia’s Cure. The children understand that this Christmas the Draz family is giving the gift of money to help children with SMA.

Several weeks ago Jen asked Drew and Ry how they wanted to celebrate Christmas. They agreed that they wanted treats to eat. They wanted a night of junk food and candy; they didn’t even mention gifts. For the last few days I’ve been reading Christmas books to the children. Every time I read a book that speaks to the true meaning of Christmas Drew proudly reflects, “We don’t get presents for Christmas.”

If you wish to see the list of Drew’s team please visit:

http://www.the200forsma.com/

If you wish to send a donation to Sophia’s Cure they welcome every gift, large and small.

Drew and the entire Draz family are all so blessed. We wish a safe, healthy and happy Christmas to all!
Nana Barb
“Christmas gift suggestions: To your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To all, charity.” Oren Arnold

Nothing new to report; both boys continue to recover–Ry from his procedure and Drew from an illness. We pass the days doing school work, treatments, reading Christmas books, playing computer games and watching a little TV.

Since there’s not much going on at the Draz home, I’m taking this opportunity to post a couple of older videos. In the first, shot last summer, Ry is such a good big brother as he fixes Karli’s hair.

In the second video, shot a month ago, Karli is giving Barbie a haircut. Although Karli talks as though she was only THINKING about cutting her own hair, actually I did catch her doing it. And, yes, she knew that she shouldn’t have. She was just unhappy she got caught.

Nana Barb
The quotes today are courtesy of Karli.
“Daddy, don’t do that when I’m in charge.”
Yes, Karli does think there are times when she’s in charge. However, the second quote from just last night is my favorite.
“Mom, everyone is bossy to me. But I just want to be bossy to them.”
I told Jen it’s becoming apparent that Karli will NOT need assertiveness training.