Almost {who am I kidding} Wordless Wednesday...now Friday

So this was meant to be posted on Wednesday for his 1st b-day, but we all came down with the flu. Better late than never!
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Dear Carter,

Today is your 1st Birthday.

It is really hard to believe that time has passed so quickly...

you will always be my Baby.

You have brought so much Joy to this family,

more than one could ever expect.

You are a gift from God...

the reason I smile the most in each day.

When times are dark you smile,

you laugh,

you bring calm to the storm,

you are the reason we realize what we have is so much more than we give God the credit for.

You have taught Daddy & I to have more Faith, 

to live like nothing can't be over come.

You have taught Josh to love & to be gentle. 

You have taught him what little brothers need.

You are why Mason waves hello, 

why he claps his hands & you keep teaching.

I know that you were given to us from God for a greater reason than to be our son.

I am give it all to the Lord.

You are destined for Greatness...

don't you ever tell let anyone tell you otherwise.

You are my ham & my Baby Car-Car.

I love you more than I thought I could.

 Happy 1st Birthday Car-Car.

You were born on July 28th, 2010 & your Big brothers loved you instantly!

You tuckered us all out within the first two days & then we took you on your first hike.

When you were hospitalized & scared us all. We are so happy you are now doing SO well.

 

Daddy & Mommy lovin times.

Your first smile & playing with your brother.

 

Our Nanny that lasted 2 months...maybe you can see why? 

Your first Christmas.

You have my heart.

 

What big eyes you have!

 

The biggest snot bubble I have ever seen & dead to the world.

 

You are definitely my most mischievous baby.

Loving all your bums!

First time climbing & first ice cream cake.

 

You are my baby who eats & sleeps. My dream come true!

Trying to walk & fooling around with Josh.

 

You are one of the loves of my life and I love you even if you eat & poop sand.

Being naughty not sitting in your high chair at your birthday dinner. Which ended early b/c you started puking.

You are definitely a cutie pie & we love you so much.

Love your Daddy, Mommy, Josh & Mason.

there can be Hope.

A meeting.

we have been working for the last couple of months on creating a society.

it has been formed.

"Mason's Story Society"

this society is for Mason.

the society now has 5+ Board Members who will help us make decisions about Mason's care.

there is a non-profit Society called Vela Microboarding.

http://www.microboard.org/

they are helping us with this & will be taking Mason's "service" needs to the government.

this will provide 1 on 1 services for Mason & respite for us.

oh what sleep could feel like?

Vela along with "Kids Matter" are also helping us with getting Mason's proper diagnose.

they are also helping us get our package together with all the evidence we need for the government to support Mason through the "At-Home" program. 

This program should cover Mason's feeding and medical supplies.

many calls have been made & many not returned...

but we will get M the help he deserves.

we feel Hope.

it's not something we have felt in awhile so it's exciting.

We are also getting ready & we are getting excited about the 2 month long Variety-The Children's Charity Coin Drive! 

In this Coin Drive we will be representing The City of Surrey, trying to raise money to help families like ours. 

I have been talking with Dianne Watts, Mayor of Surrey & it looks like she is on Board to help.

SO EXCITED!

Please keep us in your thoughts & prayers in the next couple months as we battle the government to give Mason the care he needs.

Almost Wordless Wednesday.

Just a little cuteness to add to your day!

I just had to show you Carter eating, he is doing SO much better!

First ice cream cake & first time eating with a plate!

Mason having is PH Prob test (tube in his nose) & a broken feeding pump. So he was stuck to an IV pole for 3.5 days!

Mason's roaring face to show he has his Backpack back (no more pole) & is ready to take you on!

Josh with his Preschool teachers who are also doing his summer school program!

Josh has been so grumpy lately, so many of my pics look like this cute angry face.

Being 4/5 is tough you know!

Josh says he is 4/5 because his clothing says 4/5.

My new way of saving $$$ is coupon shopping.

Got all of this for $8.34

Just in case you were wondering...

Have a great day!

Do you have comments?

Thoughts & Comments

I love having your thoughts & comments.

I am a person who has a hard time talking about my feelings to others.

I have a hard time getting my thoughts out with verbal speech.

I am a very visual person.

I do not like talking about my feelings face to face.

I am not able to process when someone calls, asks about my feelings in the last blog.

And then would like me to answer their question, without the time to think things through!

My feelings are on the page because I can't talk about them.

I like writing about my feelings so I can see them.

I like to walk away, think about what is said...

Sometimes over analyze.

But I like a moment to myself to visualize and decide on how the comment fits.

You see it's not that I don't appreciate what others say...

I just need a moment to process.

This Blog is how I share my deepest feelings without feeling uncomfortable.

When I talk to someone face to face I tend to put my emotions to the side, hopefully without seeming cold or harsh.

We have been through a lot in the past 7 years.

The past 3 were the hardest for myself.

It has been recommended that we seek counseling to help us feel...LOL

This would be very hard for me to do face to face.

To share my feelings with someone staring at me as I ramble, because I can't see my thoughts.

This is why this Blog is so good.

Therapeutic if you will.

So with all this said,

I love your comments and thoughts.

They mean alot to me.

I really never thought that this Blog would become what it has.

I didn't really think anyone would care to read my thoughts.

But I care about reading yours.

I love my life and whatever way God intends for it to flourish.

I am not and will never pretend to be a writer.

My grammar is aweful, I know that.

I don't really care.

This is my way of seeking therapy.

My way of venting and telling those who want to listen.

My way of "doing it".

So Please feel free to leave your thoughts on this Blog.

I appreciate it.

the nightmares.

asleep & awake.

I have nightmares.

alot.

i have them while i am sleeping.

cleaning.

driving.

sitting.

in Children's Hospital.

daydreams turn into nightmares.

the scenes play out in my head.

I don't cry very often.

I have gone numb.

numb to pain.

to fear.

to love.

somedays

but not to death...

i.will.never.be.numb.to.death.

it started with Mason.

the breath being taken from him a 5 days old.

the fear filled faces of the Drs. looking at my son.

the not knowing.

the Dr. telling me my son is dying at 11 months old...

right.in.front.of.our.eyes.

the fight we fight for M.

the day 2 day.

because.water.can.kill.my.son.

water.

they started when no one would listen.

when people thought i was crazy or being dramatic.

"attention seeking"

when i knew something was wrong with my son.

when something was really wrong.

at first they came in daydreams while sitting at the hospital.

then they spread like a virus spreads through your body.

my body, mind & soul are filled with them.

it has turned into anxiety.

anxiety of the unknown...

of the needing to get Mason help...

to not fail my son again.

i.will.not.

i took part in drowning my son 24 hrs a day for 11 months.

unwillingly, but i did.

i caused damage to his lungs.

i didn't push hard enough.

i missed it.

i missed him getting help for 11 months.

what if i had just gone & said i am not leaving & not left.

Mason was so critical when we finally got help.

but they got worse.

i now have them about N, J & C since he was born.

every time N leaves for work i have a them.

will i ever see him again?

how will it happen?

am i going to have to do this alone?

i.can't.do.this.alone.

i usually shake my head & tell myself i am silly...

move on.

until J goes to school.

is this the last time i will see my son?

what if that car came & hit him?

what if he fell on the playground?

what if?

then C has a nap.

i can't hear him breathing now that he is in his own room.

what if he stops?

what if he falls down the stairs?

what if?

i have them constantly throughout my day with M.

M knows no "safety" boundaries.

M can't have water...

but he'll try to get someone's cup.

lick a puddle.

drink from the toilet.

from a wet cloth.

it's not that i don't give him things for his mouth.

he just wants water.

often when he gets a fair amount he gets really sick.

we have been really luck that he has been as healthy as he is.

it only takes one pneumonia to end his life.

it only takes water to get pneumonia.

on slip up on my part to get water.

so they pop up as i try to control my son.

as i try to teach him...

remind a 2 year old that water can hurt him.

when we are at Children's several times a month...

the children fighting & some loosing their battle with Cancer.

the new babies born with "defects" 

the children who are slowly dying from different diseases & disorders.

the little girl who suffers from what is scary close to M's issues...

who is a couple years older & with all the damage done is very sick alot of the time.

they make me see a scary path ahead.

i feel the fear, anxiety & the death most at these times.

my mind races.

they come like thundering horses trampling my mind, body & soul.

death is a fear like no other for me.

but it's not my death i fear.

it's the death of my loved ones.

how will i live without them?

i.am.not.sure.i.could.

i am not one of the Mom's who cringes when there kids fall...

or worries when they play way above their age.

i am not afraid of heights & or when they are learning their boundaries.

but i am afraid of the outcome that could be lingering in the air.

the thought that accidents happen & they change our lives in a instant.

the thought of loosing one of my own.

i am so surrounded with children dying.

M has brought a community that lifts me & scares me.

i don't know if the nightmares will ever go away.

but by writing them down i am telling whomever is reading this, that they are there.

that life is too short & to acknowledge & love your loved ones more than life itself.

because life can end at any moment and for some it's ending right now.

there is eternity if you believe in Christ Jesus who died on the cross for us.

there is a way better place than Earth to be.

i'm just not ready to say good bye to the ones i love.

& i have nightmares about it.

 plain & simple.

just in case you were wondering.

It has been a week or two.

Where to start?

i am sitting here.
i don't even know where to start...
i feel empty.
Tired.

Joshua started his summer school program last week.
it has been awesome...
he loves it.
they are doing crazy experiments & cooking everyday.
the mornings at home have been so much better for Mason too.
i feel like September is going to bring a little more peace at home & Josh is really going to enjoy himself at school full time.

Carter had his development scored this past week & he is a tad bit behind.
but i'm not worried...
he'll catch up.
he is pointing at everything & pointing to what he wants!
in 13 days Carter will be 1 years old.
it's crazy to think my babies are going to be gone.
wow!

Mason has been thrown through the wringer the last two weeks, especially this last week.
his 8 weeks of OT therapy has started & it is feeling good.
Mason is loving the activities & i think is doing well.
the OT is coming up with ideas to help us & genuinely seems to want to help.
we will need to get a fair amount of therapy equiptment to be able to help M with day 2 day life.
can you say $$$?

this last week has been crazy.
sunday we went to church, came home, the boys napped.
as Nick started to cut the grass M's feeding pump started to alarm.
great it's sunday & the pharmacy with loaners is closed...
now what?
so we headed down to BC Children's Hospital Emerge.
they had a pump we could borrow until we could go pick one up monday morning.
they only thing was it had to stay up on an IV pole & the tube wasn't long enough for Mason to sit on the floor to play and the pole was to big for him to push by himself.
it would be ok...
we'll get the portable pump on monday.
we decided to go to evening church on our way home.
Mason had a good time getting rides from daddy on the iv pole.

it's now monday morning & M found his spot on the couch.
i called the pharmacy as soon as they opened...
no pump.
(insert a lot of steam coming from my ears)
i am now extremely frustrated & i have no idea what i am going to do for Mason.
so what else do i do but turn to Twitter & Facebook.
thank goodness for Curt who just happens to manage a medical supply company.
a phone call later, i am phoning & arranging for Mason's loaner pump directly through the Pump's company.
with Mason stuck on the couch for one more whole day the pump should be here tuesday morning.
which is when we were headed back to Children's for Mason's 24 hr PH Prob test.
they shoved a tube in his nose and down his throat...
my poor boy.
the test was to measure the reflux coming up & going down to see if it's the reason why M is doing so poorly with swallowing & drooling like a mad man!
get home from the hospital, tube in nose...
no pump...
it's the couch for mason, this is day 2.5.
wednesday comes & still no pump...
now i'm pumped...
ready to yell at whomever gets in my way.
Mason will not spend another day on the couch!
several calls later i find out the package was supposed to have been at our house by 9am tuesday.
a call to Purolater to find out my address in invalid & they won't deliver the package.
i tell them my address isn't invalid...
infact i have a Purolater sticker on my door so that mason's monthly packages can get dropped off without a signature.
but they won't deliver it.
so i head out with mason go pick up his loaner pump...
it's dead.
head home to plug it in...
then head to Children's to get the tube out & hand in our journal logs & be done with Children's this week.

Fact: did you know that if M had government coverage we would have had a back up pump. it would have saved us x2 trips to children's and a trip to langley and more important 3.5 days of being stuck on the couch when we weren't at the hospital.

ran into a Mom who has a child very similar to Mason, except older.
her child was born at 24 weeks & has had alot of the same issues...
but there differences.
this family knows how we feel...
but it scares me b/c it shows what can happen with aspiration issues.
this other child has been in the hospital almost monthly since M got his tube.

now we are waiting for results of M's sleep study & his PH Prob study.
let you know when we know!

on a better note we met with our new pediatrician today.
he seems really good & right away with no history could read M & understand the care he takes & needs.
he needs one week to read all M's history & he'll get back to us with his plan.
guess what...pediatricians are supposed to manage all care.
this guy sounds good & has a good track record with several people we have talked to.
so maybe I will get to be Mommy instead of playing Dr. all the time.

here's hoping with all these new Drs. & new tests & new people who care...
that things will just get better.
we will finally get some support...
i am so tired & i am loosing steam.
i am headed to the Dr. next week.
i am still not better after Carter's pregnancy.
it's been almost a year...something needs to change.

Ugg.
it has been a week & i am done with it.
only a couple days & it's done.
starting fresh on Sunday.
church will start my week.

~I can do all things through Christ who gives me strength~
Philippians 4:13

Check me out!

i am a guest blogger at...

so i love this chica's blog...

she advocates for attachment parenting, breast feeding and gluten free life styles.

i read her blog all the time and love the quirky little details this Mama is.

and guess what?

i am today's guest blogger!

check out my story...

www.AccustomedChaos.com

And follow this woman!

the month of june.

It has been a really busy month.

it starts of by alot of interuption at Nick's work.

Nick has been given a new position on the new press and has been gone more than often for training.

there have been so many ups and downs...

not knowing what his shifts were going to be.

not knowing what he was going to be making...

no he didn't get a pay raise, but with hours changing money can change.

so needless to say it has been a very stressful month for us...

Mason has met with the sleep Dr. and has had a sleep study done already.

we are waiting to get the results of the study.

they basically said, whatever it is it's not going to be easy.

is anything ever easy with M?

we also met with the new Gi Dr.

now we have been waiting to see this guy for months now.

i had all my questions lined up and i was ready for answers.

this is the Dr. who is the "know all" for G-tube feeding and problems of G-tubes.

our first appointment did not go how i planned.

Nick couldn't the time off work and I had to go it alone.

I was exhausted and felt completely destroyed walking into the app.

never a good thing.

in a 2 hour period I saw the Dr. for about 20 mins..I sat waiting with his nurse for the remainder of the time. 

when the Dr. finally came in he had a plan...

a plan not to answer any of my questions!

but a plan for another surgery.

he would talk to us more when he knew more.

you see M's health has declined a fair amount in the last 5 weeks. There is something going on and it's not good what ever it is. 

M has stopped swallowing pretty much everything...including his drool.

this has never been my son...

he has always been keen to put stuff in his mouth...

not anymore.

they are worried because these symptoms mean something has really changed, and not for the good.

i have since got a call that they aren't going to do that surgery rather another test called a 

PH Prob study.

the procedure, a tube through your nose down into your tummy that measures your acid levels, to check for how bad his reflux still is.

This is a test we have asked for but never received.

so dispite the meeting not going as planned we are pretty happy so far.

let you know when we know the results of the test.

we have also met with Jodi Tucker from Kid's Matter.

she is an advocate and we have hired her on to help us.

her goal is to get mason labeled and funded.

we will spend the next couple months trying to prove that m fits in the autism spectrum.

we have also talked with Lori from Vela Microboarding.

we are going to be forming a micro foundation around Mason with Vela.

this can help provide M and our Fam with all our needs for M.

these are several months projects...

keep you up to date on the goings on.

Josh has finished preschool and is ready for kindergarten.

the very next day after finishing he was asking to go to K.

"i would love for you to go buddy!"

J starts a summer program july 5...

it is a 4 hour day program mon-fri.

it's going to be a lot of fun for him!

Carter has now been switched to all that is thickened.

and he really needs those adenoids out!

C is growing so fast...

shocking that next month he is going to be 1...

then I will be forever babyless :(

YES FOREVER PEOPLE!

I feel like I am missing a ton from this month...

it was a really long stressful month.

but there were some really good break throughs!

as you can see my Blog is a mess and i am in the middle of re-designing it!

if anyone knows someone who designs blogs and is REALLY good and quick...

send them my way!

please have patience!

The Sears Fam!