Scott and Maddie Face the ALS Challenge

1st Day of School and Maddie is over the moon as she meets her new bus staff.

1st Day of School and Maddie is over the moon as she meets her new bus staff.

Maddie starts school an hour earlier now, so there isn’t much Happy in her game on Monday morning. Might need to start doing them on Sunday. In lieu of this week, here is the ALS challenge that I did–with Maddie dumping the big bucket of ice cold water on me.  Maddie and I had been challenged by my buddy, WIBC’s Ray Steele. (He also challenged Governor’s Mike Pence and Mitch Daniels. So far only the former governor has stepped up.)

Happy Monday with Maddie: Dog Day Afternoon

Sam, Maddie, Mallory and their neighbor friend Nate.

Sam, Maddie, Mallory and their neighbor friend Nate.

Before Maddie was born we went out to get a dog for our family. Our number 1 priority was to get a dog that was great with kids. We went to an animal shelter to look at another dog, but while we were there we met Licorice. We were told he had been there quite awhile, so time was not on his side. To be truthful he wasn’t our first choice, but while we were about to take another dog on a walk, he looked at us with his sad brown eyes and we were melted on the spot. After the shelter workers told us he was always great with kids, we knew our doggy search was over. Licorice became Angus and we could never have asked for a better dog.

Over the past 6 months Angus has started to slow down. His arthritis was causing him major problems. He began to try to make leaps from our staircase, instead of taking each step.  A couple of these times we thought he had broken his leg, but after a couple of days he stopped limping and seemed to back to his normal self. After this came the appetite issues…with him not touching his dog bowl on some days and throwing up his food on others. The final decision for us to put him to sleep was caused by his aggressive barking at some kids in the neighborhood. This behavior seemed to stem from dementia that seemed to be setting in. We just couldn’t risk him hurting anyone, so the incredibly hard decision to end his life was made. The video is the story of that afternoon.

NOTE: I’m agnostic, but I have no interest in making my children’s lives any harder than it already is for them at this young age. Time for me to share my own confused beliefs about the afterlife when I think they can handle it better. For now, I’m taking the easy way out:)

Happy Monday with Maddie: 2014 Art Show

Maddie at 4.

Maddie at 4.

Today we meet some great camp counselors at Noble Art Camp and at the end we see a present one of the Happy Monday video watchers gave Maddie after seeing the tough times of losing your front teeth on a bicycle accident.

Happy Monday with Maddie: Kicked in the Teeth Again

Maddie and her new headphones.

Maddie and her new headphones.

BE AWARE THAT THIS VIDEO HAS A CAVALCADE OF EMOTIONS FEATURED.

Maddie had gone 4 years without getting on a bike because the last one we got her she constantly struggled with and she ended up falling and hurting herself pretty badly the last time. (This included bumping her front baby teeth and making them wobbly.) She spent the past 4 years feeling jealous of typically developing kids like her brother and sister who rode their bikes with no problems. Maddie wanted to ride something so much that for xmas we got her a rip rider. (a big wheel type trike which can spin in the back) Even though she was a good foot too big for this, she still has enjoyed it for the past few months, but it was time to have her try something her own size.

So I researched all around to find a recumbent bike (adult trike type) that was sturdy, but somewhat affordable. (Around 400 bucks instead of the 1k-2k offerings that were the price tag for most of them.) We got the delivery from Amazon and Maddie was over the moon. It was the 1st thing she has ever gotten that she thought was cool. You read that right, THE 1ST PRESENT IN HER WHOLE LIFE THAT SHE WAS PROUD OF. Like her the 3 wheeler was different than anything else on the block, but was gorgeous and hard to take your eyes off of.

You will see the thrill of victory and the agony of defeat that happened over a few days period. She ends up having an accident that causes her to violently bang her mouth on the concrete, popping out her big, beautiful 2 front teeth. After reinserting them a couple hours later, the best case scenario is that she would keep for a couple of years. The pain was immense. The cost will be just as shocking to the system, as I suspect we are looking at around 10 grand when the whole process is over. Oh and who knows how she will manage false teeth when it comes time to have to put them in.

Sorry to use this post as a bitch-fest, but it’s the world our family lives in. I’m tired of how my girl never seems to catch a break. I really appreciate the kind things people have offered up after seeing the video. That does make it a little better:) Ultimately, like so many families of kids with disabilities, we will push on through the emotional and financial costs that life seems to constantly push our way. We have no choice because my girl Maddie deserves the best we can manage.

Happy Monday with Maddie: July 7th edition

2012

2012

Today’s Happy Monday discusses how Maddie getting up really early because she’s excited for her new camp:( We also meet an important teacher who has meant a lot to Maddie. Bonus music clips from Chemical Bros and the Cult.

Happy Monday with Maddie: June 30th edition

1 year ago.

1 year ago.

Maddie is starting to get used to her different schedule of school being out.  One MAJOR help is that after 8 years of waiting, we finally have been approved for the medicaid waiver which among other things, allows us a few hours on the weekend to have a respite provider to keep Maddie busy. Rachael is her name and she’s really bonded with our girl.

Happy Monday with Maddie: Marcos Pizza!

Maddie at 4.

Maddie at 4.

 

The summer has been tough for Maddie as she misses school, but she is starting to get back to her normal self. She had a great Monday and to celebrate we go to her favorite pizza place, Marcos!

(Not So) Happy Monday with Maddie: Father’s Day 2014

 

The Walls have been closing in on us this past couple of weeks.

The Walls have been closing in on us this past couple of weeks.

Summer continues to be difficult for Maddie, just like it is every year. We have plenty of strategies to try to keep her from meltdown, but they are often as impenetrable as the 1985 Bears defense. Her big thing now is to focus on thing that she stresses out about and then when that is solved she is off to the next stress.

NOTE: Most of our newer happy Monday videos will happen on Sunday night, as it’s become too difficult to get them done on Monday morning. This one shows how she was most of the afternoon on Sunday. The last part of video before she sings Happy (you might have heard this song–we have at least 3000 times) shows her this Monday morning before camp still struggling.

Here’s a positive to go off on.  She had a great day at camp on Monday. Let’s hope the rest of the week goes better.