Spring Has Sprung!

Chatham Easter Egg Hunt

Party at Mema's

We have been trying to make the most of our chilly spring on Cape Cod- including getting off Cape a bit!

Easter
We got this amazing machine to decorate our Easter Eggs this year. It's called Egg-mazing! It spins the egg really fast and we use special markers to draw designs as it goes around and around. You can see a video of it here and here. The eggs turned out great!

On Easter we went to my Mema's and spent time with my Aunty's, Uncles and cousins. As you know this year Easter was on April Fool's Day. My Mom LOVES April Fool's Day so we had fun playing tricks on people. We even made brownies out of sponges for Easter dinner! It was so funny! We even had an Easter Egg hunt with no eggs. Then, when we finally did get the eggs out- some of them had spinach and carrots in them! 
 



















































Spring Break
Over spring break we tried to find some warm weather and drove to North Carolina. We just got a new camper and brought it with us. We stopped in Baltimore for a couple of days to visit our cousins on the way. We did lots of fun things around Kure Beach and Wilmington, NC.

Getting ready to hit the road!

The USS North Carolina Battleship

Me and Mom with the Battleship bell

Guns and Flags

Making a copper ring

NC Aquarium- that's a big lobster!

Cute frogs

Dive show

Jellies are so peaceful

Touching a horseshoe crab

New York City
We went to NYC the week after spring break to meet up with some of my Auntys and cousins. It was my Aunt Erin's birthday and she was going to see Harry Potter and the Cursed Child, and my mom got to go with. We went on a boat cruise on the Hudson River, and went to the Central Park Zoo. We went to Times Square to see all of the lights and screens and we got some personalized MnM's with our names on them!

Central Park with Cousins

Boat Cruise on the Hudson

The whole crew

Hey look the Statue of Liberty!

Riding the Subway

Making our own MnM's

Red Panda at the Central Park Zoo

Tulips!

He was so cute!

Mom Hijack: Bedside Table

I was contemplating the overflowing stack of books on my bedside table the other day and looked over at my husband's table- quite a difference. I started to wonder what the bedside tables of my friends might look like- and how truly, we can tell a lot about a person by what might be there, or not there. If I think back to the bedside tables of my former lives, they would each tell a story about priorities, interests, worries, fears, pleasures.

I use this space as a holding place for my interests and curiosities, some of which barely get my attention, but they sit just the same. If intention could manifest anything tangible it would be a great comfort, but alas, my good intentions simply keep the pile of books and journals growing. Sometimes I forget what is at the bottom of the pile, and for how long it's been sitting there, unread. Of course, things do come and go, as the library is a place I frequent. I contemplated this growing stack for long enough, that I figured it deserved some attention- in the form of this blog post- perhaps more for me, then anyone reading it, but maybe putting it out there will encourage me to start shrinking the pile or at least weeding it out. So here's what it looks like:

I know, right?! It's a bit overwhelming, and there's not space for much else, but let's break it down...

- Video monitor for Kai
- White noise machine (I'm a super light sleeper and this is life saving!)
- Ear plugs (yes, I use those too!)
- Stack of journals (I'm not a "journaler"- but the idea sort of intrigues me. I started a gratitude journal, but it's not a habit yet)
- Random junk (troll figurines, a heart-shaped paper punch?)
- And BOOKS- a stack of them! Here are some of the titles:

The Top Tier

Hellz Yeah It's Possible (about hiking the Appalachian Trail)

I used to love backpacking- and have re-energized an interest in possibly doing part of this iconic trail. Maybe someday...

Little Fires Everywhere

Novel chosen for this month's book club.

 

The Brain's Way of Healing (non-fiction)

I read Norman Doidge's first book while I was getting my certification as an Anat Baniel Method practitioner- it gave a ray of hope about the brain and neuroplasticity. I bought this one on a whim while on a once in a lifetime trip to London.

 

Caring for Children who Have Severe Neurological Impairment (resource book lent to me by a friend)

I think the title speaks for itself;-).

Fire Child Water Child (about the 5 types of ADHD recommended to me by a friend)

Kai's younger brother is newly diagnosed with ADHD, and I'm just starting to delve into the topic and understand how to best support him.

 

Cerebral Palsy: A complete guide to caregiving (checked out from the library by a friend)

I have always steered away from these types of resource books, but after two different people shared them with me I took it as a sign.

 

Can you guess which book gets the most attention?

 I wish I could say it was the books that will help me to support my children and be the best caregiver I can to them, but they are not. The novel will be off the table in a couple of weeks, replaced my a new one, that will be read equally as fast. The others linger and I may read a chapter or a few pages periodically- but they sit and wait mostly. I have good intentions, and true interest in these books, but I'll be honest they are not page turners. 

They are a reminder of the obstacles we face as a family and the resources we need to move forward. The novel, forever enticing, beckons to be read because it is so far removed from my life. I get to read about the drama surrounding fictitious lives, and it's Just. So. Easy.

Second Tier

These poor books have been stuck at the bottom of the pile: Kings and Queens of England, The 5 Second Rule (given to me by my mother-in-law) and The Marriage of Opposites (a novel given to me by a friend). They all interest me and one of these days I will get to them!

And of course, the foundation of the pile, are these sweet pictures of my family- old and new. 

I'm not sure I want to make any changes to this ever growing pile. After looking through everything, I simply stacked the books, re-placed the trolls, and even the heart-shaped paper punch.  One of these days I will either read everything, or will decide that my interest in the topic is no longer there. I like that I have a holding place for my intentions- even if they may not always be fulfilled.

What's on your bedside table?

Communication Update

For the past two years I have been working on getting a communication device so I can tell everyone what I think! We have tried out two different systems and I have been working really hard to do my best. Now my teachers have to do lots of paperwork and send it off so it can be improved by insurance. Hopefully they will make a decision soon. They already said no twice, so we had to do more work to make them say yes. I really hope we worked hard enough this time! 

So this is what it looks like...

This is the PRC Communicator

 It has eight core words that I am working on: More, Stop, Go, Hello, Mine, Play, On, and Turn. I use a switch to start the scan of these words- that means the computer says each word out loud and then waits 10 seconds before going onto the next word. When it gets to the word I want to choose, I hit my switch and a different voice says the word out loud.

Here is me with the switch above my head

Right now I access the switch with my head. You can see the yellow switch attached to the back of my chair. I can use my feet to push up and hit the switch with my head.

Yellow Switch

 Here is another view of the switch I hit with my head. When I make a choice of one of the words we get to do fun things. Here are some of the activities we might do.

Minion with a swtich

 I might choose "Play" and we will use my switch toys to play with. Once I get used to my system I will be able to make more specific choices, and have more words to choose from.

Books

 Sometimes we read books, and I can choose them by picking More or Mine. We also play with stuffed animals sometimes, or "Go" for walks. We play music too sometimes, or play with the iPad.

I am really looking forward to working on this device so I can "talk" to my friends, family and teachers. One day everyone will hear all that I know and think!

Winter Adventures

We've had a busy few months this winter- lots of playing in the sun and the snow. Here are some highlights of our adventures...

November 

Over Thanksgiving we have lots of traditions. The first is doing the Turkey Trot on Thanksgiving morning. It's a 5k race. This year we had fun turkey headbands and hats. My Aunty, Uncle, and little cousins came to run with us. We had a quiet turkey dinner at home and then we got our Christmas tree.

 

 

 

We got to visit Heritage Gardens for the Gardens A Glow event. It was so fun- we made smores, saw the lights and visited Santa. 

December

In December we go to take a whole week off of school to go to Florida. We met up with my grandparents and Aunt Krissy in Key West for the first part of our trip. We laid by the pool and saw a GIANT iguana sunning himself. We also went on the Conch Train Tour to learn about Key West.

There is a really fun place in KW called Mallory Square. It has fun music and street performers doing all kinds of fun things. Then we got to see the amazing Key Wet sunset.

After KW we drove in my grandparents huge RV to Sanibel Island, where my Great-Grandma lives. She lives very close to the beach and there are lots of shells. We had Christmas there and saw some cool things.

My stocking

Meeting a Bird

My Great Gram

Mom and I on a boat near Capitva Island, FL

 January

We came back from Florida in time to celebrate New Year's Eve at First Night in Chatham. In January we also went skiing at Mt. Sunapee. I ride a bi-ski, which allows me to fly down the mountain! You can see videos of my skiing here.

Here is our family getting ready to hit the slopes

Dad and I having a tickle fight

Sometimes he gets me really excited!

February

During February vacation we had a great time in Lincoln, NH. We skiied at Loon Mountain and we were lucky because it was SO warm! We also went to ice castles, which is an amazing structure that is built every year completely out of ice! There were slides and waterfalls and so many icicles! I also went sledding and got to try something I've never done before!

This is the outside of Ice Castles

 I got to try out my new sled- FINALLY! We haven't had enough snow on Cape Cod since I got it for Christmas so we brought it to NH. It is so fun! It works great. My dad and mom can ride on the back as we go down the hill.

 Then we got to do something AMAZING that I never have done before- SNOWMOBILING! It was so cool. They had a special harness that I could be hooked on to my dad. I really loved when it went fast!

Here we are in our gear on the snowmobile

Dad and I taking a break

It's been a great winter so far! There's more to come!