The Last week.

Last friday I finally had it.

I called the company we are working with for Mason and told them I was hiring someone.

Mason has this money that is just sitting there...waiting for everyone to get the game together.

I have and feel completely out of control of our lives right now.

I have no idea what is going to happen in the next few months.

I have no idea where we are going to live...

if we are going to get the funding that Mason really needs...

And what therapy is going to look like. 

Everything is out of control.

So I took control of one thing.

I hired this lovely girl.

She actually took charge a couple of times and dealt with Mason's meltdowns great.

It's only the second day,

I am just hoping that she is okay with our crazy family...lol

Hopefully this works out for as long as it needs to work out.

Today I feel a little lighter.

And you know what, it feels really good.

I actually have been able to cook the boys dinner two nights in a row, NOT in the microwave. 

It maybe silly, but I cried tonight.

Just thinking about how great it was to be able to cook something on the stove.

I miss the "normal" that used to be our life.

I am just so looking forward to being able to do somethings that a Mom should be able to do.

I don't think I will take for granted actually being able to cook wholesome food for my family again.

I also got to go to the bathroom by myself TWICE today...lol

It's going to be weird always having people in my house, but I guess it's the new "us" for this season of our lives.

So we were on the news today. 

Kinda loving the editing they did...

They edited it to look like I said that Mason's feeding pump cost $7000, I actually said that Variety gave us $7000 worth of supplies. They are really good at editing...go figure.

Anyways...just thought you other tubie Mom's would want to know we didn't get ripped off for the price of our pump.

Variety-The Children's Charity has there annual "Show of Hearts" Telethon on this weekend.

For those who don't know without Variety I don't even know what would have happened.

They have been there when NO ONE else was or could be.

They bought Mason his feeding pump and the cute (but not so cute) little backpack Mason carries around.

Mason will also be on the Telethon this Sunday from 1-2 and 2-3pm on Global BC TV.

Here is the link to watch the story from today...

They say the Camera adds ten pounds...

I am so going to go running as soon as I own a pair of running shoes.

Anyone got a pair of size seven Nikes... lol!

My Blog Design business is starting to pickup and it is really exciting.

I currently have two giveaways for Blog Designs so go over to DBD to enter!

Hope you all have a great week!

The Sears Fam

Church.

So I lost it on Saturday.

I had have had enough and I needed to get it all out.

I have found myself lost lately.

I lost my will drive to continue fighting, I am tired.

I feel like I won a HUGE fight and I should be SO happy.

And please don't get me wrong I am happy, but tired happy.

We won the fight and I just need some time to build up for the next.

I know that it is just really starting and I just can't wait any longer...

I need it to start now.

I just want to be all set up and for life to get easier.

I am at peace. 

Church, I went to church on Sunday.

It had been awhile and it was SO good.

I just felt the spirit flow over me with peace.

And I have felt quite relieved.

I am thinking about finally getting baptized this february.

I think it's time, this is about me and it can finally be about me.

There are no babies in my belly...

The stress hasn't been so bad this week.

I am so truly grateful for everyone's support and everyone's hugs, whether IRL or not!

Carter had his appointment at Children's Hospital today.

It was nothing but good news, which was a breath of fresh air!

We left being told that we had a "really great healthy boy".

His Sandifer's Syndrome is no more as long as he stays on his GERD meds.

He has a good amount of fat on his body and he CAN swallow thin liquids.

So in the weeks to come we will be working hard to get Carter off thickened liquids.

I am screaming joy inside today, we all are.

Just a little note about Carter and his helmet.

Most people know that Carter got a very serious concussion at the beginning of the month, and well he is still not healed.

One of the side effects of his concussion is just being uncoordinated, because of this he is falling ALOT.

Needless to say he has hit his head several more times, and passed out on Saturday again. 

On Sunday he fell several times, a couple were really bad.

He bit through his tongue in one hit and chipped two teeth in another.

So to the Dr. we went.

It seems his poor brain hasn't had the time to heal properly because of all the repeated hits.

So it was decided that he will be wearing a helmet for 1-3 weeks to allow his brain to heal.

He looks pretty cute with his bike helmet on.

We opted not to payed the $75 for a one time use helmet and just used the bike helmet instead.

The only problem with the helmet so far? 

Carter believes he should be riding his bike all day.

I kinda find it cute hearing him yell at high pitches "bik" all day.

Seriously, I love it.

Communication is really good people!

So today ends positive and I am ready for what tomorrow will bring. 

I am sure it's going to have it's challenges, but I am ready.

We are ready.

Isn't he just to cute for words!

It's been a very hard month.

As the months, weeks and days have gone by I have lost more of the son I thought I had.

Tonight I put the boys to bed, but Carter cried and hard.

I went and picked him up, I could feel that he needed me...

his body just relaxed deep into mine.

So I brought him downstairs to sit with me.

Carter does this once and awhile, he never cries to go to bed.

I knew he needed me.

He needed his Mom.

Mason rules our life, there's no easy way to say it.

He dictates what everyone does from minute to minute.

Where and how we live, shop, eat and play.

Life is hard for Mason. 

Life is hard for Joshua and for Carter.

Life is hard for Nick and for myself.

This life is not what I thought of "living".

Sometimes I hate that this is my life.

Sometimes I dream about what life could have, should have been.

I do not know Joshua, he does not talk to me.

He lives in stress, fear and wondering.

I have lost him somewhere along the way.

And I am lost trying to find him.

Carter is my baby.

He is the one who I never wanted, the one I was embarrassed to be growing.
He is the glue we needed, we need.

Watching Carter grow, develop, and now communicate even without words...

it brings me to tears.

This is what this is supposed to be.

You are supposed to have a connection with your child.

The kisses are healing for my soul.

Carter has never known a life without Mason.

It scares me to think about how much Carter can actually hear me.

Mason has gotten so much worse.

There is nothing positive to report.

They warned us...

they told us he would get worse.

That he would change and that this wasn't going to be easy.

they warned us.

We never thought it would all happen so fast...

1 month warning.

I find myself grieving...

I find myself sick of my "son".

Sick of his sick.

I find myself guilty for being sick of my son.

I love Mason.

I hate that this is what Mason has become.

I hate the pain that he is constantly in.

I hate this situation.

I long to wake up and for it to be all better.

For us to wake up and everyone be healthy.

For the stress, pain, and the nightmares to be gone.

The nightmares.

This month has brought us to Emergency twice already.

Strangely not for Mason.

Carter knocked himself out...

I will never forget the way he felt.

He did it again today.

This time i was not holding him.

It was only for 15 seconds.

Since having Carter I have had awful feelings...

nightmares about losing him, an uneasy feeling.

It is probably the stress from what we went through with Mason at his ages...

I never realized until just recently just how close we have been to actually physically losing our son.

Josh had to go the Emergency last night.

Josh has asthma and had one of the worst if not the worst asthma attack ever.

For 35 minutes we worked with every tool we had to get his breathing under control.

He was really struggling so we left.

The anxiety that slowly creeps in is unbearable.

We get to the hospital his breathing is way more under control.

We wait to see the Dr. to make sure this isn't going to happen again.

As we wait several newborn babies come through the doors...sick babies.

Couple day old babies.

We are sitting with Josh in the same bed...

the bed where Mason was first taken at five days old.

The bed where Mason was found to be barely breathing.

And now there were babies surrounding us... crying there little cries.

Today has been a hard day.

I can't make myself stop re-living those awful moments.

All the awful moments.

Today, this month has been a hard month.

In four days we will be back in Children's hospital,

in the room where they told us that Mason couldn't swallow properly.

In the room where they told me water could kill my son.

The room where our lives changed forever.

The difference is this time we will be there with Carter.

Please pray they find why Carter also has trouble swallowing.

Please pray that is just from reflux. 

This is the best option.

Josh is really struggling with life, with our life these past few months.

Please pray that he can find peace.

That we can find peace.

Mason needs help.

We need our Respite.

We need Mason's therapy, we need someone to help him.

We don't want to wait anymore.

We have been going for 34 months...

we have waited long enough.

Are you listening?

We are all so tired.

This is what Special Powers can do to a family.

I have hope

We need to have hope.

Because this is not what life is supposed to be.

There is supposed to be quality in life.
Mason has none.
The rest of us don't really have much either.
But I know that this can get better.
We just need the ************ to step up and do their part.

Life is going to get better... I believe this.
This is what I need to do to keep going.
I am believing.

BLOG UNDER CONSTUCTION..again!

Just need a day to fix my Blog all pretty!

The Best Kept Secret-An Auction for Mason

Once again my you all have SHOCKED me.

Shocked, shaken, and rocked me to the core.

I have no idea how you all did it?

So to those who don't know the best kept history...

Crystal from Domestic, But Not Martha has been scheming for a couple weeks.

Along with several amazing people, Crystal has thrown an online Auction for Mason together.

I don't even know what to say anymore.

Again the support from all of you on-line people along with in real life people...

it's just been so needed.

You have all lifted my spirits when I was so tired.

God is SO good.

Please go check out the deals you can get online, and all the funds are going directly to Mason and our family!

I am really at a loss for words, cause I have no idea how to even begin to show you how much this all means. 

So forgive me.

They will come.