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!

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
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REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH A SPECIAL NEEDS MOM
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!

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!

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 be...as 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!

All About Annalise

Since Bryce has been stealing the show here a little bit lately, I decided to let you in on what is going on with Annalise.  I'll tell you what, this little girl has more personality in that little 2 yr old body than most people I know.  She keeps us laughing with all she says and does.  I absolutely love to just sit and play with her.  She has a fantastic imagination.

I guess she decided that my drink looked better than hers. 

This is right after she cut her bangs.  Luckily you couldn't really see where she did it.  

She and Bryce in one of their favorite places.  The pod of our "relatively" new Zigo bike.  They love going for bike rides where they can sit on the front of the bike and see everything that is happening in front of them!  This picture was taken a few months ago when it was a bit warmer! 

Annalise also loves painting her nails.  She has to do it herself and although her fingers get a bit pink in the process, her nails always look beautiful!

Even with 4 brothers, she is such a girly girl!

One morning I had to run to the grocery store and I decided to let her play in Basha's play area.  She loved it!  Didn't want to leave, so the lady there picked her up and carried her over to the bakery and got her a cookie.  Then she was perfectly happy to get into the cart and eat her cookie as we left the store.  

Mmmm!

Another new found love of hers is "cream" as she calls it.  She first had some on her pie at Thanksgiving and she has been hooked ever since.  Shortly thereafter, her dad introduced her to the "straight from the can to the mouth" approach and she has taken to it quite nicely.  In October, she had lost weight, so we have been doing  various things to help get the calories into her.  She had a follow up appointment with the nutritionist last week and she is up 1.6 lbs!  She has come from below the charts up to the 10th percentile!  Hooray for Cream!  

She often tells us that we are being too loud and then covers her ears or

tells us to Shhhh!

Here we are in our latest vehicle...a minivan!  Who would have thought that our search for the right vehicle over the last couple of years would lead us right back to the same type of car we were driving before...only a bit modified.  I'll update you on our latest vehicle happenings soon, but this post isn't about cars, it's about an adorable girl and her brothers!

This picture just melts my heart!  Bryce and Annalise both love books.  Here I was reading this book to Bryce and I had to leave for a minute.  When I came back I saw that Annalise had gotten herself over to Bryce and was turning the pages for him and "reading" the story.  Too sweet!

She can be sweet and girly, but this girl never turns down a chance to play in the dirt!

Here she is sitting on her new froggy potty.  I have no idea if she will be able to be potty trained or not, but she has been telling me when she has a dirty diaper and has shown interest in sitting on the potty, so I decided that we might as well give it a try.  I will be thrilled if she is able to potty train!  

I have to share a funny story about this potty.  When we bought it, there was this one and one other just like it and she wanted them both.  I tried to convince her that she only needed one potty, but she insisted that I get both of them.  So, I finally put both, exactly the same, froggy potties into the cart.  As we began moving on to something else, she completely forgot about the potty and I carefully returned the extra one to the shelf.  She had no idea and was totally fine...until we got to the check out line.  She saw me put the one potty up and asked, "where other froggy potty?"  Oh no!  So I told her that we were only going to get one because that was all we needed.  She then began crying, "I need 2 froggy potties" over and over the whole time we were checking out.  Finally the lady there gave her a sticker and everything was okay.

That is until we got home and she realized again that only one potty had come home with us.  Then she said, "where baby froggy?  Baby froggy at store"  She then pointed to her potty and said, "mommy froggy, baby froggy not here,"  in a very sad voice.  I then realized that I had brought the mommy home and left the baby in the store.  No wonder she was so upset!  Luckily she is happy now to sit on the mommy froggy potty, even though the baby is not here.  Hopefully I haven't scarred her for life! :{

This particular day, she and I were the only ones home at the time and I was having fun talking and playing with her.  She was in such a silly mood.  It was so fun!  Here she is showing me her mouth.  She wanted me to take a picture so that she could see her own mouth.

This is what happens when you have 4 older brothers and you think you need to be wrestling right along with them.  She got this rug burn one night while playing with her brothers.  A day or so later, while she and I were in the car, she picked the scab off, held it out to me, and said, "here Mommy!"  It was then covered with a bandaid so that she couldn't get to it and it could heal.

Being silly!

She often pretends she is a dog.  Here she is licking her walker.  She thought that was funny too!

Here she is being brave and letting go of her walker.  We count while she stands.  We can usually get up to about 10 now.

After playing with me for a while, she then said, "I go sleep now."  and leaned back on her walker with her eyes closed.

A few seconds later she opened her eyes and said, "I awake!"  She is seriously a crack up.  

She is huge into pretend play.  Everything is mommy/baby or daddy/baby.  One morning I went in to get her out of bed and she looked up at me and said, "Hi Mommy doggie!"  Another morning I went in and said good morning and she looked up at me and said, "two eyeballs!"  Yeah, you never know what is going to come out of that little girl's mouth, but it usually makes me smile!

If you haven't ever gotten a chance to hang out with this girl, you really should!  It will make your day!

Amazing Jake's

It's late, so this post will be quick, but I just had to share what Bryce and his dad did tonight.  A couple of years ago, John decided that he wanted to take each of the kids out to dinner for their birthday...just the two of them.  Well, this year he wanted to take Bryce out as well.  Since Bryce is completely tube fed now, the whole "take him out to dinner" thing just wasn't going to work.  So, John has been thinking about it for a few weeks and decided that he would take him somewhere fun, even if they didn't eat.  So tonight he and Bryce headed out to Amazing Jake's and spent a couple of hours going on rides and playing games together...just the two of them!  They let Bryce in for 1/2 price since he wouldn't be eating.  I don't have any pictures of the actual event, but the smile that Bryce had on his face when they returned home told me that he had a great time.  His eyes lit up as John told me about riding the carousel (always a favorite of Bryce's), the train, and the roller coaster.  John doesn't always get a lot of time with the little ones, so I'm glad that he and Bryce were able to spend some quality time together tonight.

Looks who's 5!

Happy Birthday to my big boy!