Sunday, March 31, 2013

Easter Photos

For folks who want to see how BIG the kids are getting - please enjoy these from Easter weekend.  
Saturday we participated in the Perkins/MAPVI Beeping Easter Egg Hunt at Perkins on Saturday.  Here's Alexis enjoying finding her golden egg, then got her a special prize!

Here are photos of Alexis at Easter Egg Hunt #2 - at Brady's house.  She enjoyed the sunny front porch.  She did enjoy putting found eggs into her basket.  Lucky for Dad that she doesn't really like (aka, can't eat) candy.  Lucky for him! 
I would show more photos of Jessica, but she was moving too fast collecting eggs.  Here is proof.  

And then today, we had early rise Easter Service (7:30).  We barely got there in time for a seat, and forgot their nice sweaters and forgot the donation (whoops), I guess we should have gotten up earlier.  :(  But here are some photos of the kids before Easter.  Jessica had already eaten 4 pieces of chocolate when she woke up and found Easter eggs in the house, so church was pretty "interesting" (aka, we were ideal parents trying to persuade Jessica not to hop around everywhere).  

 Here are various pictures from the Church.  Jessica is a rascal, but thankfully not annoying Alexis at the moment the photos were taken!
Alexis wasn't thrilled about sitting around after church, but she did so much better at church than Jessica.  As I often say, Alexis keeps a lot of secrets!  I think she's coming up with a plan to escape based on these photos!
 Here's a reminder of how TALL Matt is compared to me and Alexis.  Jessica seems to be super-tall at least compared to me.  I'll be taking bets on whether she gets out of elementary school before she's taller than me.

Sunday, March 24, 2013

Alexis and Friend Dancing At School!

Here's Alexis at a Birthday Celebration at school!


Monday, March 18, 2013

Best Gift Ever!

So today was our annual Perkins Staff Appreciation Day for the Deafblind Program Staff.  I have previously helped but this year I helped even more.  I solicited donations from 400+ companies and got $7,000 worth of gifts donated.  The teams of parents selflessly donated their time on Friday to organize the room and then today to keep all of us organized - we have food for 150 people.  Each staff member ends up with a gift (150 people).  We had lots of baked goods donated from dedicated parents - it's truly a miraculous event each year.

But I got the best gift ever - tonight.  I was feeling a little under the weather and exhausted from the day, so Matt took Alexis to 'outside' PT tonight.

Here is the report,
"You missed a great PT session tonight, the one you have been waiting for a while.  She stood at a table, turned herself around to face the other direction and took 10 un-aided independent steps to another table with toys." 

How fantastic and how ironic that 7 years of PT at Northeast Rehab (weekly) and the one week that I 'skip' - she shows off for Heather (PT) and Dad!  

This is the best Staff Appreciation Gift I could have received -- the gift for Alexis' independent walking.  Now we'll see if we can motivate her to do that in other settings!  We just love a challenge!  Watch out world!


Tuesday, March 12, 2013

Tangential but Powerful

I don't often write about truly personal things on the blog - usually this is focused on my kids and the family activities.

But I found a quote today that I really think summarizes a lot of my experiences and view on the world.  I first have to tell a little bit of a story.

In undergrad, I was a geek.  Well, I probably shouldn't limit the time that I was a geek to just undergrad - but those who read this know I was a very big geek in undergrad.  But I was fortunate to have a great roommate, be active in NCState Marching band and active in Dorm life.  These facts will make some sense in a little bit. 

So my roommate pledged Mu Beta Psi, national honorary musical society - her big brother in the fraternity was Hugh.  Most people called this dear man "Huggie Bear" or some other great term of affection.  He was larger than life, he had a huge heart and he shared with everyone his happiness.  One hug from Hugh and we all knew it was going to be a great day.  He was that powerful.  Since I was in the Marching Band, I got to see him at practices, at events and he was always the "one" that we all had to say hello to.  He had graduated from NCState when my older brother had - even knew my sister-in-law before she was my sister-in-law.  We would poke fun at Hugh's age, he was ancient in our eyes as little college kids.

Then, my roommate and I were active in Dorm life - I'm telling you I was a geek.  I don't want to implicate Ali (my roommate). But we were on Sullivan Dorm Council or whatever it was named.  We even held elected positions, how much fun is that.  Well, we both met Sigrid - who was Residence Director.  She was a paid staff there to make sure the dorm residents behaved well and in general kept the RAs and the Dorm Council together.  To be completely honest, I don't quite recall what else she did but she was a fantastic person.  

At one point, I finally said to Ali - I think Hugh and Sigrid would really make a great match.  I basically just told them each great things about each other - and they both believed me!  They were willing to at least meet and see what a crazy idea I had planned.  Long story short - they were married a year or two later.  It was even the first wedding that I was asked to be a bridesmaid, I was so touched!  

Fast forward, I became friends with Hugh on Facebook a couple of years ago after finding some mutual friends.  He and Sigrid were doing awesome things and it was great to have him back 'virtually'.  

Sadly, he passed away on Sunday.  He was only 46.  He leaves behind my friend Sigrid and their son.  My heart aches for them.

Coming full circle, here is a portion of his obituary:
 Through his numerous presentations and ongoing commitment to serving others, Hugh stressed that each of us to has the power within to get the most out of life's opportunities and that no matter how we stumble, we can always land right side up. He lived by the belief that as we travel life's journey, it is the way we handle the challenges that makes all the difference. 

This is completely Hugh.  This is completely why each one of us would seek out a hug or a smile from Hugh when we saw him.  He believed in the fullness and richness of life.  He believed we were all precious and even if he called me "Short Stuff" or "Half Pint" - he gave out his love in piles!  

I can hope to honor his memory by "getting the most out of life's opportunities" and "landing right side up"!  I know we can all learn from Hugh.  

Tuesday, March 5, 2013

Days go by....

Days go by - but still our friends in Alexis' / Jessica's journey keep us grounded.
One of our 'penpals' is Moriah and her parents Victoria and Justin and little brother Jadon.  They are an absolutely awesome family.  Before Victoria and Justin looked old enough to graduate from high school, they were college graduates, married and fighting for their daughter's lives.  These are some of the most inspiration people I know - truly they have been through it all.  Last week they posted a video of Moriah walking - it was awe-some!  

They are looking for some help - they have created a survey.  Help us spread the word: