Random Photos of Cute Kids!

Life has been insane the past couple of weeks.  In fact, I got on here to blog today and found this post that I started almost a month ago and never finished.  It is just a bunch of random photos of Annalise and Bryce that I have taken over the past few months.  Soon, I will get on and catch you up on all that is happening, but for now...enjoy some random pictures of two of the cutest kids around!

Bryce's smiles just beg for a picture to be taken. 

Before Annalise got her own little walker, we would help her use Bryce's gait trainer.  It is a little too heavy for her to use alone, so her new one is perfect for her now, but this was fun while she waited.

It is often very hard to get a good, smiling picture of Annalise so even though it is blurry, I love this picture.  This is when we were in the hospital waiting to get her lumbar puncture.  We were playing with bubbles.

I came home one day and found Annalise with these beautiful braids in her hair.  Her physical therapist, Tess, had braided her hair while she was stretching her.  It was so cute.  

Annalise decided that she wanted to go swimming and decided to put her own swimming suit on.  This is how William found her.

This was at the Ryan House.  I set this on her tray and she started to say a prayer.

Soon she opened her arms and said The End!

Another cute smile

Here are Bryce and Annalise wearing some Leukodystrophy Awareness shirts I had made for them.  Another LD mom that I have met on facebook designed these shirts.  You can find a link to her awareness store here  

She may not be able to get around too well, but that doesn't mean that Annalise won't find a way to get to what she wants.  Here she is enjoying a cup of peanut butter that was left open on the floor during conference weekend.

Morning hair!

More pictures of the kids sporting their LD shirts.

Annalise is a two year old through and through.  During her therapies we sometimes have to get creative.  Her PT, Tess, discovered that if she puts the socks on Anna's hands first, then Anna is much more willing to let her put them and her braces on her feet before working.  Tess is amazing with both of our little ones!

I think she is doing Patty Cake here.

Here is the one and only time (so far) that I have been able to braid Annalise's hair.  It is very rare that she sits still long enough to have much done with her hair.  I just love her hair though.  It has gotten so long and is so pretty.

These are a few shots that I got one day after picking Bryce up from the bus.  I was trying to get one  good shot of both of them looking at me, but as you will see, it never quite happened, although they are cute anyway!

This is Bryce's annoyed face.  He is happy most of the time, but he will definitely let you know when he is done!

From Van to Bus

The time has come to sell our beautiful, big red fire truck.  We have only owned it for about 1 and a half years, but a lot has happened in that time.  We bought it and then had the wheelchair lift installed so that we could get Bryce in and out easier and so that he could have the support of his wheelchair even as we drove.  It took a bit to get used to the bright red color, and the fact that everywhere I went someone recognized me or would stare and wondered about this huge, red van.  However, it didn't take long for me to really like this van.  It gets great gas mileage for the size that it is and it is amazingly easy to drive.  I love this van!

However, like I said, a lot has happened in the past year and a half.  Last summer we realized that the rear air was not strong enough to keep the back of the van cool in this summer Arizona heat.  Since Bryce's body has trouble regulating temprature, that is a real problem.  We planned to put in a stronger, roof top air conditioning unit before the following summer.  But, before that time came, Annalise began having trouble and we soon realized that before long, we would need a vehicle that would hold two wheelchairs instead of just one.  

So, we began to look at our options.  As we did, we found that our options were very limited!  We began to look into mini buses.  One guy that John talked with in April said that he knew just what our family needed and then came out to show us this lovely Turtle Top Bus.

I do love that this bus had two seats up front.  That would be nice.

The turtle top really was a nice bus and the boys instantly loved it and thought we should buy this one immediately.  There were just a couple of problems with that though.  First, this one was not wheelchair accessible and we really didn't want to have another lift installed...if possible.  And, a new bus like this would cost us around $75,000!  Just a bit out of our price range!  

So, although we had decided that we would need to go with a "mini bus" (a name I find quite misleading), we knew that we still had some searching to do.   I'll spare you all the details of  the following months of searching, but finally we found one that was within our price range.  It was a 2006 and looked really nice.  The only problem was that it was not running at the time.  Minor detail ;)  Anyway, since it cost less than we had budgeted for, we bought it for $3500 and had it towed to the shop.  Just $600 later, we brought the bus home.  We were so happy that we had gotten such a great deal.  However, one week later, it once again would not start and it was towed back to the shop.  A few weeks and $8000 later, the bus finally came home...hopefully to stay!

Jacob and Spencer checking out the lift

Annalise liked the lift as well

It seats 13 in the back or the seats fold up and there is room for 5 wheelchair!

Bryce's first impression was NOT a good one!  He was terrified of it.  He has gotten used to it now and seems to be fine when we travel in it.

The signs throughout the bus crack me up.

The wonderful air conditioner!  My favorite part of the whole bus.

It is large and will take some getting used to, but hopefully it will work for what we need.  I will continue to search for a bus that is a bit smaller and still meets our needs, but for now, this is our new family vehicle.

When I realized what we were going to have to drive, I knew that I needed something smaller to drive when I didn't have all the kids with me.  I just couldn't see driving the bus every time I ran out to get some milk!  We looked and found a nice 2000 Jetta that should do the trick.  What we went through to get that is a whole other story for another time, but it is a nice little car.  We named it the Green Smoothie!

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It does get dirty quickly, but the boys love washing a nice small car!

So, now that the bus is out of the shop, we cleaned up the van and have listed it on ebay motors.  As much as we will miss it, we hope it sells quickly and goes to a good family who will come to love it as much as we did.  And then we can move on to the next phase of our life.  

Good-bye to our Big Red Fire Truck! 

Holland is Beautiful...A Good Reminder

This morning while I was searching through old posts on our family blog, I came across this story.  I think of this story often, but it was really good to actually read it again today.  Some days I just need that extra reminder that Holland really is beautiful and exactly where I am supposed to be.


WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.