Saturday, November 24, 2012

Brayden and ICE

A little adventure to start off the Christmas season.
The Gaylord National's Shrek the Halls ICE.
Brayden was given a pair of Shrek ears (as a little token of apology for no handicap parking...).

You can tell Brayden was thrilled with the ears.  However they did help keep his hat on for the ICE.  And he and his Papa hung out while the rest of us were enjoying the ice slides.
Brayden did amazingly well.  By lunch time he was tuckered out and fell asleep (like his Great-Grandpa Johnson who can fall asleep any where).  But was back awake and ready to enjoy the Christmas village at the Gaylord National.
Days like this are big steps for Brayden.  He handled an entire day away from home.  Surviving the ICE temperatures of 10-12 degrees, wrapped up in blankets and a giant coat, the chaos and noise all around him...and he seemed to enjoy it all.

Friday, November 23, 2012

Brayden's Thanksgiving

Brayden loves the holidays...sort of.  But he does love to be with his family.
This year, for the first time, he sat at the kids table.  He was a very big boy.
After a long day, he cuddled up with daddy for a few hours (and did not want to be moved per the temper tantrum when I picked him up for bedtime).

Thursday, November 22, 2012

Happy Thanksgiving from Brayden

Made at school, with a little help.
Oh how I love to think of his chubby little hands covered in paint to make the turkey and the leaf.

Tuesday, November 20, 2012

New car seat

Brayden has been using the same car seat for several years.  A regular car seat that we bought years ago at a typical store.  Brayden has grown a lot this year and we are trying to catch up to his big boy size.

First new gear to arrive...the car seat.

We did a trial run in the house.  Fit all the buckles/straps and let him hang out in the house to try it out...he did not seem impressed.

Then we were out for the maiden voyage, just down the road in Waterford.  And he handled it fine.

The delivery of the car seat opened up the conversation in our house (and with my friends) about a wheelchair accessible car.  Why and when is the right time to make that happen.  I have many strong ideas on this but that will be a blog for another day (I will sort out my thoughts and try to not sound to vain and superficial).

Wednesday, November 14, 2012

Burst my bubble

I find myself watching my boys grow up and thinking that I want them to stay in that sweet innocent bubble.  A bubble that protects their innocence and protects them from the things that can go oh-so wrong in the world.  But I realized that I too had my own bubble.  A bubble that burst when Brayden was born.

My bubble - Bad things don't happen to me.  Sure life is not perfect and I will have hard times but really bad things do not happen to me.  This does not happen to me, let alone happen to my baby.

Yes, I do know that bad things happen and could happen to me.  I just did not think that it would actually happen (I know naive).  It was almost like you could hear the bubble burst as the doctor delivered the first news about Brayden's brain.
Your son is missing part of his brain.  POP.           How could this happen to my baby? POP.

That pop and burst got to the core of me.  My core was shaken.  I did not know heartache like this, fear like this, motherly love and hurt like this...I did not know this could happen to me, to my baby.  This happened to other people, not me.

I can see it now in retrospect.  At the time, I felt like I was dealing with it (and we were) but my bubble was burst.  The burst came hard, fast and leaving a mess.  My view of the world changed.  My picture perfect family changed.  My goals for my family changed.  My priorities changed.  What I thought happiness and joy should be, changed.  My life was forever changed.

It clearly was for the better.  The process has been ugly but our Heavenly Father knows what He is doing.  He gave us the strength in the midst of the mess.  In it I found joy, a deep joy.

So my bubble was burst and I am still wading through it.  As I have said before this is not some period of time or trial to get through, this is what our life is now...burst bubble and all.

Tuesday, November 13, 2012


Brayden loves his brothers.  He loves to be around his brothers.

He only allows his brothers in his bed (I try all the time and Brayden makes it clear that he does not want me in his bed).  Both Carter and Luke curl in bed with Brayden and read books.
Many times I find Luke pulled a chair right next to Brayden to share a book or pictures.

Brayden nestles right up on them.  He listens, then gets excited, will kick his legs and start his "happy talking".  Luke had to get the hang of reading while Brayden was being loud.  We had to explain that Brayden did not want him to stop, he was happy to have him there and read.  Carter is patient and continues reading.  Both Carter and Luke will try to show him pictures and explain the story.

This might be Brayden's favorite thing to do...ever.

Sunday, November 11, 2012

Have my grove back?

I feel normal.  Like, actual normal.  Brayden's life is so manageable right now.  Dare I say we have hit a plateau...a break from the roller coaster ride of emergencies and hospitals.

I have been busy with normal activities for once.  I can actually volunteer at school, go to Carter and Luke's sports (they both had a great football season), see friends...we get to have people over to the house.  I love the noise of boys playing and friends hanging out.  As such simple things but things many of take for granted. I feel so normal.

I feel like myself, rather than a fractured, tired, frazzled version of myself.  I have not felt like this since before being pregnant with Brayden (I do not have great pregnancies and since the moment Brayden was born, his life brought those roller coaster rides).

Brayden is at school Mon-Fri from 10:30-2:30.  He has been doing really well at school.  We have a nurse about 40 hours a week.  Brayden is able to get out and handle being out a lot better.  The majority of Brayden's medical needs are manageable and we do not have to see the doctors nearly as much.  Yes, we still deal with seizures, GI problems and hip issues but we can handle them.  This has been a long stretch without hospital stays or ER visits...ahhh the calm.

Have we found our grove?

And there is time for silliness.  Carter holding Brayden's self portrait that Brayden made (with help) at school.

Sunday, November 4, 2012

No hope for the hat

Cold weather does not agree with Brayden for many reasons...
Long shirt and pants are hard to get on, shorts and t-shirts are so much easier.
Jackets, he does not like putting on jackets and we have a hard time bending his arms to get into the coat.
Shoes, he actually has to wear shoes and shoving his incredibly chubby feet into shoes is a challenge.
Football season, his brother still have football games and that means a lot of layers for Brayden, he has enough trouble moving let alone with lots of layers on.
Hats, Brayden does not like to wear a hat.  Sensory issues, wiggling his head issues and when he gets really determined to prove his point about a hat, he will start banging his head to get the hat off.

This weekend was football and a hat.  We finally surrendered to the idea that it was going to be like this, no matter how many times we tried to fix it.  So it became funny and we had to take pictures (with my dad too!).