eSpecially Ben

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.

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.

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

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.   

Ben spreads the holiday cheer with unexpected hugs.

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 ad...

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 c...

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...

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.

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, to...

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.

Ben saw some kids at the park playing in a big pile of leaves.  Ben wanted to be a part of it all. They let him join in and even brought over more leaves for him to enjoy.

I just bought a new pill box, the one with the days of the week written on each small compartment. It has a button on either end - red to unlock the compartments and green to lock the compartments. As I was filling it and thinking about what a clever gadget it is, I stopped in my tracks and realized the reason I bought a new one was because Ben ripped open the other with his teeth. I just don't think the little button system will stop him from getting into this one. That will be a job for some engineer, making something Ben-proof.

At my parent teacher conference, Ben's new teacher shared a story about him. There is a girl in the class who is in a wheelchair, has very little movement and is completely non-verbal. Since the first day in class, Ben has been interested in her. He reaches for her hand, holds it and makes her smile. From what the teacher said, they have a bond; a friendship has formed. I know how special Ben is, about his ability to bring people together, but I was still struck by this story.  The teacher spoke about Ben's compassion. Have I ever considered this emotion in Ben? Had I thought him capable? How sensitive and thoughtful is the teacher to see this unfolding in the class and describe it with such love and caring? Once again, Ben has taught me something new.

It has been a tough couple of weeks - Ben, for some unknown reason, has not been sleeping. One night, he actually never slept. I mean, he never ever slept a wink. Not once. Other nights, it was not until 3 or 4am that he fell asleep. Some nights he woke at 1:30am and was up for the rest of the evening. On some of these nights, when I was at my wits end, I gave Ben a sleeping pill or Benadryll, a dose that would normally knock out an adult, let alone a 50lb kid. Alas they did nothing for him. One night, he spent the entire eight or more hours laughing hysterically while watching Bob the Builder movies. Between his cackling and my husband's bronchial coughing, I thought I might lose all sanity. I tried soothing music, laying down with him in my bed, his bed and on the couch. I gave sleeping meds sometimes and others not. When those ideas did not work, I turned on the TV, then thought it was too much stimulation and turned it off. I locked h...

One of our Grin Kid companions, Hayden is in a Halloween Costume Contest. The prize is an Ipad 2, that may help Hayden with his communication. Please take a moment to vote for Hayden in his Spiderman costume - he is a few photos down on the list. Vote for Hayden - Wolf-Hirschhorn Halloween Contest And take a moment to read about Wolf-Hirschhorn Syndrome. Thanks.

In my other life, you know the one that does not involve making lunches, fighting with light sabers, watching Bob the Builder or anything else that defines my family life, I am trained in working with college students. As a result of working with this population, I became skilled as a leadership and teambuilding facilitator for groups, helping to build teams and increase communication. During this time, I met Tracy Moore, who did exactly what I did, but at a different university. We hit it off and started to plan teambuilding initiatives with a mission group going to Guatemala. This past January marked our 11th teambuilding retreat with this same organization. We decided to make our arrangement formal. After much banter back and forth, we came up with the name, AIM Charlotte. AIM represents our hope for the clients we work with and, more literally, A ctivities with I nfanzon and M oore. Our three main programs are: Mission Accomplished -...

I took Ben grocery shopping with me to WalMart . I had this brilliant idea to have Ben in his Convaid Stroller and attach bags to the back that I would fill with groceries. Then as the bags filled, I would bring them to customer service where my cart was waiting. By my third trip to customer service, I was tired of the process. It was a long walk pushing a wheelchair, carrying jugs of milk, only to return to the same section to get more heavy items. Just as I was ready to give up the fiasco, a WalMart staff person came over and offered to find another staff person to walk with us and push a cart to hold our groceries. Hallelujah!

We take Star Wars seriously around here - Ben is a Clone, Logan is Obi-Wan Kenobi and Sean (not pictured) is Anakin Skywalker. Have a great time trick or treating!

going to Hot Air Balloon Festivals, spending time with Grandma and Grandpa, sliding, picking pumpkins resting, and eating apples off the tree to write.

As if the Disney World vacation was not enough, the Kyle Busch Foundation gave Charlotte area Grin Kids' families tickets to the Dollar General 300 Race . Although Ryan had been twice to a race, the rest of our family were newbies. Ben loved the excitement and the noise, but eventually he was too excited to even sit. Ryan took him for a bite to eat and a stroll around the speedway while I stayed with the other boys who were mesmerized by the ecperience. When we caught up with eachother - I noticed Ryan taking money out of Ben's pockets. To my amazement, Ryan told me that two different and random people gave Ben money - totalling $25. Although we laughed, I am not sure how either one of us felt about it. A discussion for another day. We had a great time - it was truly an experience and I was glad to see what it was like. The noise was overwhelming, even with ear plugs. Unlike other sporting events, there's little cheering or yelling since noth...

I usually do not get sick or have any type of ailments, but these last few months have proven otherwise. This summer I developed a cyst in an uncomfortable location and it got infected. Many doctor visits later, shots, needles, medication and Sean (yes, my three year old) holding my hand, I got through it. Now I am wearing a boot on my right foot. I have had pain in the arch for over a month, mostly at night. During the day I was fine, I even ran two 10k races during this period of time. The night pain was increasing along with my pill popping (just ibuprofen), so I finally saw the orthopaedic doctor. Unable to pinpoint what exactly is ailing me, they gave me a big boot to wear for three weeks and anti-inflammatory pills. What a way to end my 40th year!

Luke and I are new to the public education system in Texas. Beginning soon after Luke’s birth, we had ECI come to our house several times a week for PT, OT, deaf education, and swallowing therapy. I was able to sit in on all Luke’s sessions and knew exactly what to work on with him. Since turning three, Luke’s case was handed over to the public school system which seemed to complicate things a bit. Since Luke’s birthday is 10 days before the end of the school year, we were able to enroll him in school and get our feet wet with the preschool program for children with disabilities (PPCD). Luke is deaf and wears a cochlear implant for hearing. Because he also has other delays, he doesn’t meet the qualifications for the deaf ed program and is in a class with kids who have all different types of disabilities. One of our biggest concerns with Luke’s development is his very limited communication. Unfortunately, none of the other children in Luke’s class are hearing impaired so it’s hard to ...

It would be unfair not to share the amazing things the Grin Kids staff had planned for us. If you plan to apply for this program and want to be surprised, do not read this post. It will be a spoiler. First, we pull into the airport departure section and a Grin Kid volunteer (just a good person who wants to help out) carries our bags. This means that neither Ryan nor I touched a bag once we got out of the minivan. We were able to focus on the 3 boys and getting checked in. Grin Kids supplied luggage tags for us, especially marked so they would make it directly to our hotel room. After security, which they did try to make it as easy as possible for everyone, we went to the concourse where we were welcomed by Police Officers, Santa Claus, Rufus from the Charlotte BobCats, Sir Purr from the Carolina Panthers and many other local and national mascots. Each one had goody bags to give out to every child. Dancers performed in the middle of the concourse, music played and time flew...