Sunday, February 26, 2012

Sometimes I Hate

I know many people do not like to use the word hate.  In the past I have even been known to tell my children, "we don't hate".  But today there is something I hate.  It is this horrible disease we call Leukodystrophy!  Although there is so much good in our children, there is NOTHING good about Leukodystrophy!

Leukodystrophy has taken the lives of two more children!  A sweet baby girl just 6 months old, and a beautiful 6 year old boy.  The 6 year old had AGS and passed away after a three week battle in the hospital due to a respiratory infection.  My heart goes out to their families.

Once again, these children are children that I only got to know through the internet and yet my heart hurts for their families and for the short lives they had here on this earth.  I dread the day that one of my close friends loses a child to this horrid disease, or the day that one of my own children no longer has the strength to overcome something like a common cold and I have to tell them good-bye.  How do you ever prepare for that!  Oh how I hate, loathe, despise this disease!

Friday, February 24, 2012

Reasons You Should Think Twice Before Messing with a Special Needs Mom

A fellow special needs Mom shared this on Facebook so I thought I would share it here
1. Some of us have given up on social skills and don't care what we say or do.
2. We're not afraid to have A serious "meltdown" of our own.
3. We are tired and all the patience we have is for our kids

4. We have A far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.
5. We can get you in a hold/lockdown position in less than 3.5 secs.
6.We can shoot you a look that would make a linebacker tremble in his boots.
7.Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.
8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
9. We're probably already on edge and it would be stupid to push us over.
10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
11. We've had to fight from the moment of our child's birth so by the time you make us mad we're seasoned battlers and could win a war.
12.We devote our lives to our children and don't need more stress and people who don't understand our life.
13. Wherever there is a cub, there is a mama bear...We're always watching!

Thursday, February 23, 2012

Bryce has his (loaner) power wheelchair back!  It took a while to get the back fixed on it so that he would fit in it and it would give him better support, but it is here and he is loving it!  We are still working to get the switches just right, but overall, he is doing great.

Annalise loves this playground equipment at Ryan House

Bryce and Mom after a long night!

Bryce, Annalise, Jacob, William, Spencer, and John in front of Organ Stop Pizza.  We took the kids and the Carter family to Organ Stop Pizza last night for dinner.  What a fun place!

Mom left the cookie dough a little too close.  "Hmmm, what to do?" 

Grab the spoon and dig in! 

The following video clips are from our Family Home Evening when John's Mom was here visiting.  For those of you who don't know what Family Home Evening is, it is a time each Monday when our family gets together  and spends time singing, playing, learning about Jesus, talking about the upcoming week, and enjoying a treat. They get kind of crazy sometimes, but that just adds to the fun!

The first one is Annalise "flying" with her brother Jacob

This night, it was Bryce's turn to lead the music.  We are singing one of his favorite songs, "I am a child of God"

This was after our treat.  We had homemade peanut butter cups.  I think most of it ended up on Annalise.  Here she is singing a song that she learned from the signing time videos.  She is doing the sign for dirty. 

After we washed her up I tried to get her to sing the "clean" song...however as you can tell, she had other plans!

Tuesday, February 21, 2012

How It All Began

Isn't this banner just plain AWESOME?!  I saw it on my way to the doctor's office this morning.  I can not believe how big this benefit has become and it is all thanks to the many people, most of whom I don't even know, who are working together to make this the most amazing benefit run EVER!

Some people have asked how this all got started, so I thought I would share how it all came to far as I know anyway.  In January, Bryce turned 5 years old.  Considering at one point, the doctors and therapist didn't think he was going to make it to his 2nd birthday, each one since that day is extra special!  A few months before his birthday, family and friends began asking me what they could get Bryce as a birthday present.  That is always a hard question to answer, I mean really, what do you get a boy who is mentally 5 years old and yet can physically do less than a 6 month old?  There just aren't that many options!

So, one day while we were outside watching the other kids ride their bikes, the answer came to me.  You see, Bryce used to be content to sit in his wheelchair and watch the other kids play.  However, that time has past!  This particular day, he wanted to ride a bike just like everyone else.  He was no longer okay with just sitting and watching.  So, I finally got him out of his chair and held him on a small bike and moved him across the driveway.  He loved it. He grinned and giggled the whole time.  It was a very short ride however since it is a bit tricky to hold him up while moving the bike.  I knew that I had heard about adaptive bikes for kids with special needs, so that evening I set to work to find the perfect gift for Bryce.

Before long I found this.  It looked like the perfect bike for Bryce.  I was so excited,  I knew he would love it.   But, as I began adding up what it would cost to get all the attachments that he would need in order for the bike to support him, I realized that it would cost us over $1800!  Just a bit out of our price range for a bike.

I wasn't quite ready to give up the hope of getting a bike for Bryce though and as I was discussing some options with my sister one day, she suggested that we have a 5K run to raise money for his birthday bike.  She said that way, everyone who was asking what to get him, could actually help him get his bike.

Well, I know nothing about setting up a 5K run, but I do know someone who does!  My good friend and ward member, Ellie Hardt has told me many times that she would like to help us raise money through a run for our kids.  So, at church one day, I asked her and her daughter, Whitney (also a good friend of ours) what it would take to set up a 5K.  They said, "let us think about it and we will get back to you."   I said okay and then I didn't hear from them for a week or two.  The next thing I heard is that they have this whole huge thing started with a committee and tons of ideas for this huge event to raise money for Bryce and Annalise.  I was...and still am...shocked and touched by what this has become.  Every time I talk to Ellie she tells me of someone, again usually someone who doesn't even know us, who is donating their time, supplies, and all kinds of other things to make this event happen...and happen big!

My heart is so full of thanks and amazement to all of our friends and unknown friends who are helping us out in this way.  Our family has been very blessed throughout this whole ordeal with a good job and good insurance that thankfully covers many of the children's medical treatments.  We thank our Heavenly Father every day for blessing us with this.  We also thank him for all of you who help us with the many items that are not covered.  Who knows...maybe even a bike for our 5 year old boy!