Saturday, December 24, 2011

Evolution & Merry Christmas

The Evolution of the Christmas Card Photo*:

Merry Christmas from our family to yours!

*  I borrowed this idea from my creative friend Kati. We all know how much goes on behind the scenes of the holiday photo. Sometimes it's fun to see the discarded photos too.

Friday, December 23, 2011

Don't Wait to be a Hero

Scoop of Sunshine collects all types of quotes, articles and videos meant to make you smile, laugh, think and perhaps act. In the midst of harried shopping, crazy baking and family visiting, it is a good reminder to reflect on the bigger picture during this time of the year.

Tuesday, December 20, 2011

Clowning Around with the Shriners

Santa and Mrs. Claus are the big draw at Mecklenburg Shriners Club Holiday Party each year. There's no delayed gratification between telling Santa what you want and December 25. After you get your photo taken with Santa, you walk off the stage and choose your present right then and there. This year, Ben('s parents)chose a Harley Davidson jacket - photo soon to be released.

If you are impressed with Ben's patience sitting on Santa's lap...about three seconds after the photo was shot, Ben had Santa's belt undone and off. He's that good. But as you can see, this Santa and all those involved in this wonderful organization have a good sense of humor and take it all in stride.

Need more information about the organization:
Shining at Shriners
Shriners Hospital
Shriners International

Thursday, December 15, 2011

Wings of Hope

It is easy for us to get caught up in our own issues, problems and complaints - I am just as guilty as the next person. If we can step outside ourselves once in awhile, we can see everything in its true perspective. Sometimes it takes a small gesture and sometimes a whack on the head. Lucky for me, this time I was given a hand.

Ben received this ornament and letter this week. A lot of emotion washed over me as I read the beautiful letter. I know it is tiny print, but please read it. If you want more information, read their website: Wings of Hope, an orphanage for children with disabilities.


Tuesday, December 13, 2011

Make My Day

Ben spreads the holiday cheer with unexpected hugs.

Sunday, December 11, 2011

And it begins...

Our traditions are a big part of our family life, from apple picking in the mountains to choosing a Christmas Tree from the same corner lot every year. These traditions are what the kids talk about when they look forward to the next year. This is what they will remember thirty years from now when they think back to time with our family. The people who are a part of these traditions are just as important as the tradition itself - our neighbors, friends and family join in the fun each year too.

For countless years, we have invited neighbors over to build Graham Cracker Houses. We glue the crackers with edible Royal Icing (recipe below photos). We add an assortment of candy for decoration and voila, a beautiful table decoration and an on-going snack for the passerby is created.

As the kids get older their participation and imagination have grown. This year was the best yet, with many doing most of the work on their own, leaving the adults to mingle, eat and drink.

Our family typically designs one big house, but this year we tried something different, making a village of three houses, one for each boy to decorate. This turned out to be a better idea in concept - Sean's only interest was in eating the candy and Ben did not like the invasion of people in our home. I decorated Sean's house and Ben left the premises for his "secret" hideaway at the local coffee shop.

So perhaps my idyllic view of traditions and family memories is just that, but let it be my memory and I have the photos to prove it! See our beautiful creations below:





Royal Icing Recipe

·    3 egg whites - frothy
·    1 lb confectioner's sugar - about 4 cups
·    Sift with 1/2 teaspoon cream of tartar
·    Add together
·    Beat 5-10 minutes until right consistency

Cover with wet paper towel so not to dry out.

Friday, December 9, 2011

Seeing Through the Blur

I often find myself wondering about the motions of life - I mean the motions we go through every single day, week, month, year and decade. In a class I taught recently, one of the seasoned married couples talked about how decades have gone by that they do not even remember. Although it is good to know that others feel the same way as me, it makes me want to savor the mundane and notice the little moments. Inside that blur could be the spectacular.

Tonight, after Ben's physical therapy, I decided to treat the boys to pizza at Ben's favorite place. I left Ben sitting at the table while the other boys "played" Miss Pacman. (I do not give them money, they just watch the icons move around and either pretend they are playing or actually think they are playing - not sure which and I don't want to spoil the free thing I have going on.)

The pizza took about 20 minutes to get to our table. Ben waited patiently without complaint. When the pizza came, he remained calm. Ben ate easily and well, moving his hand to his drink when he was thirsty. I can only explain the experience by saying, he was present and in the moment, more so than I have ever seen. In fact, I had the thought that people may be surprised when we stood to leave and he needed my assistance to walk. His behavior was so different - mature, aware and calm.

I stop tonight to relish in this moment, to remember and cherish it. It will eventually be consumed by the blur of holiday festivities.

Wednesday, December 7, 2011

Toilet Saga Continues

Remember when I last wrote about the Rifton Blue Wave Toilet, we were waiting for a donated one from another family? Well it did arrive - almost new, really. And within a few weeks, it mysteriously broke. And Ben landed on the floor of our bathroom. I was sure he hurt something with the way he landed. Ben was clearly puzzled by the look on his face.

After the dust settled and I was sure no bones were protruding from Ben's legs, I started to panic. I rely on this toileting system and without one, life becomes more difficult. A plan of action formed in my head and the next day, I contacted Rifton and told them the story - the whole story - including that this toilet was a donation. I explained that a small piece had cracked. I was hoping to purchase the small piece that broke. Well, of course, they cannot sell me just the little piece, I have to buy the whole thing. The customer service person asked me if I wanted her to work up a price. Yes, I did want her to work up a price, a small one, if possible.

When the customer service representative at Rifton called back, it was to tell me that they were sending  a new toilet system and would pay to have the old one shipped. I was elated.

We are back in the saddle again, so to speak. And I firmly believe that when a company offers good service, we should pass it please spread the word.

Thanks Rifton!

Tuesday, December 6, 2011

Need more sheep to count...

This is an addendum to last night's post. In my enthusiasm to solve Ben's sleeping problem, I gave him all his medication at 4pm, including the sleep aid. And like I said in my last post, he was sound asleep by 8pm. At 1:30am, he was bright eyed and bushy tailed and remained so until I sent him to school on the bus.

We try again today. I still have high hopes...just need to administer the medication according to schedule. A lesson learned every day.

Monday, December 5, 2011

Counting Sheep

Today was the sleep consultation for Ben. I asked Ryan to go because he had information to add, but really I did not want to seem like a raving lunatic when I described Ben's sleep situation.

I had nothing to worry about with this doctor -  he made no assumptions, asked many questions and walked us through options for Ben. The doctor admitted that Ben's sleep pattern was unusual and offered many explanations and possibilities. He spent 45 minutes with us and probably would have spent more if the kids (and me) had not gotten antsy.

These are a few of the things I learned:

1. Sleeping pills have not been tested on children. It just has not been done. And they definitely have not been tested with children with special needs. I see a future in this area because so many parents deal with their child's insomnia on a regular basis and do not know what to do.

2. It is possible that when Ben was weaned off a seizure medicine called Clonazepam in May, we inadvertently, took him off the sleep aid he needed.  Although Ben was using the medication to curtail break through seizures, Clonazepam is also a sleep aid and it may have been helping Ben get to sleep at night.

3. The doctor offered to do a sleep study with Ben, and he explained in detail what the procedure entails. Let's just say it involves a lot of electrodes on his face, near his mouth, legs and then 20 more on his head. Then an oxygen line is needed in his nose. I kept myself from laughing at the thought of Ben being contained with all those things attached to him. It would be more a study in the adult's reflexes than a study of Ben's sleep.

4. Melatonin, in a small dose, given early in the day, everyday, can be used to help set a sleep rhythm.

We concluded the visit with the decision to give Ben the smallest dosage of Melatonin at 4pm, and then start him on his old dosage of Clonazepam. We will keep in touch with this doctor as well as Ben's regular neurologist. We may have to do a sleep study in the future, but we are going to see how this works first. I am glad to have a plan. I am even happier to find a doctor who seemed truly understanding of the situation and willing to try different methods to come up with a solution.

I started this routine today and as I write this at 8pm, Ben is in his bed, asleep.

Thursday, December 1, 2011


Sean has been testing my patience recently. The final straw was when he yelled that Daddy was in charge, not Mommy. Unfortunately or fortunately, Daddy was not around to eat this declaration up.

As I was getting the boys ready for bed, I pulled Sean aside and explained that his Daddy and I were sad about his behavior lately. I asked him what he thought we could do to change it. His instant response, "You can use a wand." I was pretty sure what he meant, but asked anyway. He said I could use a wand to change things, and as he glanced around the room, he said that he was certain that we had one around here somewhere.

Sean's in bed now, and I am looking everywhere for that darn wand.