November 26, 2010

This is forever.

So this may not shock you.
We are sad. 
So very sad that this is not going away.

Mason is who Mason was.
Mason is who God intended him to be.
Is this hard for us, for me?
I don't know when this won't be hard for me.
But the realization of it all has begun to sink in.

My son has Special needs and they are not going away.

Mason has Smith-Magenis Syndrome and Autism.

There is much to be done.
There are so many decisions to be made.
Are we ready?
Well we have to be.

This week I called our government office...
the office in charge of paying for all medical supplies.
I left several messages that they were to call me by the end of the day.
"Waiting eight weeks just to get an appointment that would be another eight to twelve weeks away, and then a six to eight week waiting period for the decision was unacceptable".
I received a message at the end of the day from them, they were leaving for the day.
So I left a message stating that if I had to give my son over to social services in the next six months, it would be on her".
We would sell every last item we had before giving Mason over.
Just so you know.

I received a call the very next morning from the nurse.
Our appointment in on Monday, November 29th, 2010
That's right this Monday.

Squeaky wheel gets the oil.
And I got the oil.

The nurse will come assess and talk with us.
She said she will have a pretty good idea whether or not he will get on the program.
If she says no...

I have yet to receive all the papers we need to apply for the Autism funding.
I know that the coming weeks are going to be an emotional time for us.
When the pieces of paper that say my son has Smith-Magenis Syndrome and Austism arrive...
it's starts.
It's official.

Can I ask for extra prayer this Monday?
This Nurse needs to see that Mason needs to be on this program.
That he has the right to be on the program.

The final decision will be made on December 16, 2010 by a board of government people.
People who have never met my son or my family.
Pray for their hearts to be open.

Pray we get funding.
Funding would change everything.

The past is the past.
The debt is just debt.

But we can't keep up with the way everything has been going.
There is no more money to be begged, borrowed and never stolen.


I need to thank you, the support has been so needed.
Both Nick & I have felt very alone for a very long time.
You have touched us, your comments & emails have kept us going these past two weeks.
Thank you.

The Sears Fam

November 22, 2010

Just another Monday, just another diagnosis?

I have been struggling to write this post, how do I say it?
How do I explain how I am feeling.
I can't, I'm numb.

Mason's Riddle is almost solved.
In the past week we have had two very large Diagnosis.
The only thing left is to find the all the pieces to complete the puzzle.

On November 15, 2010 we learned that Mason has a Genetic Syndrome, Smith-Magenis.
We have learned a little about SMS in the last week, but have alot more research to do.
How do we feel about it?
It's awful.
But we also know he will get the help he needs and so will the rest of my family.
I am still dealing with the shock I think. 
I have had a few moments with a tear or...
I don't think it's fully there yet.

Today, November 22, 2010 we learned that my son has been diagnosed with Autism.
Pervasive Developmental Disorder - Not Otherwise Specified, to be exact.
Now we kinda new that eventually we would get this diagnosis.
And we are really happy to get it now, so Mason can get the therapy he needs.
Early intervention is the key we have been told.

I have been thanking our Saviour all day.
This has been the hardest two years of my life & he knew I was really tired.
He knew it was his time to tell us.
He knew that we were mostly emotionally ready to handle it.

Does that mean we are not crushed? No not really.
We are upset for Mason & for our family.
This is not what we dreamed about. 
This is not what we thought our life was going to be.

A good friend sent me this message today:
"God wrote the story of his little life before he was born. Nothing can change who he (M) is, just your job to manage it".

This could not have come at a better time, thank you.

So Mason has Smith-Magenis Syndrome & Autism.

Yup, still numb & overwhelmed with the sheer amount of things that need to be done in the next fews weeks.
But so grateful to have a starting point.

Thank you for your continued prayers & support.

The Sears Fam

November 15, 2010

A piece to the puzzle.

"Smith-Magenis Syndrome"

The results from Genetics are in.
Mason has Smith-Magenis Syndrome.

What is it?
I don't really know.
We have a lot of reading and learning to do.
I do know it's rare and it has it's challenges.

Will Mason get funding?
I don't know that either...LOL

We have to prove that he will be dependent in three out of the four areas at three.
1. Toileting
~Yes he will still be in diapers.
2. Washing
~Yes he will still require someone to bath in the shower.
3. Feeding
~Yes he will still have a G-tube.
4. Dressing
~Yes he doesn't even put on his pants or shirt yet.

We are believing that God will provide.
That God has set this path and we are following it as closely as we can.

The process of getting funding.
We applied to the government on Oct 5, 2010.
We are to expect a call from a nurse to book an appointment.
There is two-three month waiting list for appointments.
Then a nurse comes and six to eight weeks later we find out whether he is accepted.
We still haven't heard from the nurse.
I will be calling again tomorrow for the third time.

How do we feel about all of this?
We don't really know yet.
We knew that there was something wrong with Mason.
It has become even more evident in the past year that this isn't going away.
If he has to have a Genetic syndrome I am thankful that it is one that can have a great outcome.

Mason will need support for the rest of his life probably.

I am ready to accept this?

Is our fight for Mason over?

Does this change everything?
I sure hope so.

This is a HUGE piece to Mason's puzzle.

Next week we find out if Autism is another piece.
I honestly think more now than ever it is.

I received an email from a Lady who has become a great friend.
This Lady was praising God, we had some answers.
An answer that isn't as bad as it could have been.
She reminded me that none of this was/is my fault, there's proof.
This Lady told me we fought & now we know a piece that we were fighting for.
There is so much more that she said that was right and I needed to here it.
She said she, "hoped I was not mad for her telling me these things...God was typing not her".
He works in mysterious ways.
I need to thank her.
I really need to hug her, but she is SO far away.

There is one other friend who let me type out my feelings all over them.
And I thank you.

Nick has been at work since before we found out.
I can't wait until he is home.
I do need a real hug.

Today, is not a sad day.
It is a hard day & tomorrow will be harder I am sure.
But we will get through this.
We will learn & we will help Mason learn.

Please go & buy this CD.
100% of the proceeds from the sale of this album will be used to establish a SMS Research Fellowship that funds a graduate student to study SMS and support the SMS community.

I have been listening to the songs for awhile now.

To learn more about Smith-Magenis Syndrome.

Maybe you can help us help Mason.

Thank you for your thought and prayers.

The Sears Fam

November 11, 2010

Designs by Dana Giveaway!

I am really excited to have teamed up with Kim from Yellowsongbird! She is the biggest sweetheart & her Etsy shop is opening soon so make sure you watch for it!

Would you like a new Design? Head over to Kim's Blog to enter!

Good luck!

The Sears Fam

November 10, 2010

Wordless Wednesday: A little Sweet Monkey

Just a little sweetness...He brightens my day.

Carter really wanted Oatmeal...he had brought me packages for days.
We gave in & thought maybe he would eat it.
But he though it would be more fun to well...

And that my friends was oatmeal up his nose.

Now actually eat something.


So now you know...Carter is a Monkey.

The Sears Fam

November 9, 2010

It has been a day times ten.

Both Mason & I are really tired after today.
I don't know how today went or how I feel about it.
I feel like I sat back & watched what happened. 
I didn't fight for him today...
I guess when I got there I was just kinda done fighting on my own.
I left it fully up to God.
And it's about time I did.

So will Mason get the help he needs?
I am having faith in God that he will.
If he doesn't I may fall apart, {fair warning}.

So I am exhausted & it's 8pm. 
I am going to bed. 
I plan on writing a little more tomorrow.
But now I need sleep more than I need anything.

Sweet dreams.
I love you all more than I can explain.

The Sears Fam

Ps. If I do lose it please stick around to help me pick up the pieces, K?
Pps. I burnt my finger when I made Mac & cheese for my dinner. It is so bad I felt nothing for one hour, now it's all I can feel.
Ppps. Dear Hubs, you should have bought me these pots for Mother's Day. I need burn free handles on my pots, I am too tired to remember to grab the gloves. 

Today could change everything.

Just writing this is making me lose it.

In the past months Mason has met with a new Pediatrician who specializes in Autism.
He met with Karen a Speech Pathologist.
He met briefly with a new Physiologist.

Mason has had many development tests done in the past couple months. 
His tests have shown a very large drop in development. 
His mental health test scored six times the worry point.
Six times the worry point for his age of 31 months.
Many of the professionals that see Mason ask when he is going to get a diagnose.
Everyone says Mason is "just such a complex, difficult case".
As if we didn't know that.

Mason has finished the speech part of the Autism Assessment.
He scored three percent overall for his age.
The SP believes Mason should fit the spectrum.
The pediatrician thinks he should fit the spectrum.

Today Mason has his Autism Physc. Evaluation.
Although Mason has met with her once & she says she has seen plenty of his behaviors.
We are really nervous. 
We are paying for the Autism Assessment for the second time this year. 

We all know that as Mason gets older he will get a diagnose of High functioning Autism.
It's just by then it'll be too late for early intervention.
By then my son could be gone.
Who Mason once was...
We want to keep the glimpses we still see.
The bits of happiness that are still there.
The decline in of "Mason" in the past 7 months is incredible.
All this being said, Mason has times were he can be such a fun little guy.

We are just so scared of being let down again.
To afraid to think that we are actually could get some help from the government.
We are truly afraid & I believe we are all just guarding our spirits.

If Mason gets the diagnose of Autism he will receive the therapy he needs.
It'll give the government another reason to say he is not "normal" & his situation isn't changing anytime soon.
They will really have to consider paying for his medical equipment. 
I don't see how they could say no.
Our lives would change shape & for the better.
Mason needs that therapy, without it...
We simply cannot afford the therapy.
And we are still waiting to even get our appointment with the At-Home Nurse for her assessment saying he needs the medical funding.
We have been turned down twice.

We should find out this week or next the Genetic Results as well.
Does Mason really have Smith-Magenis Syndrome? 
We need this question answered. 
We have been waiting for 19 weeks now. 

Things at Nick's work have been really shaken up for the last two years.
They fired people, God saved Nick's job & put people on his side.
Over the summer his work put in a new Press...
For those who don't know Nick prints newspapers & flyers.
So in the summer Nick was in training for the new press, he lost $5 an hour for the summer.
It was a substantial loss, he also worked awful hours & was never home.
But he had moved over to the new press for the perks.
We have enjoyed those perks for the last two months.
He had three twelve hour night shifts a week, then worked one to two overtime shifts.
Financially we were kinda of getting our all regular bills caught up.
Now his General Manager has been fired.
This is one of the main guys who was on Nick's side. 
There is talk about changing the shifts by new management & he would be working 5 nights a week. 
Hopefully having two days off in a row together, but maybe not.
This leaves just two nights a week for overtime.
Money is going to be SO tight again.
And I will be up five nights a week anywhere from 6-12 times a night with Mason & the other boys.
Bring on the triple time exhaustion for Nick & I.

We have also lost $1300 a month due to taxes & a regular donation we have had for the past 11 months being done.
We knew it was going to happen, but its awful none the less.
Last year somehow our lovely government screwed up & couldn't fix giving me $700 a month. 
God was providing.
Trusting that the outcome of today is how God is going to provide now.

So as you can see all of this puts added stress on today.
Mason really needs help & he really needs at least this one part of his diagnose.
We realize that Mason will end up with several diagnoses in the end, but this one...
it counts for now.
It could change the rest of Mason's life for the good.

It sounds crazy, wishing for a diagnose of Autism to happen...
but we all know it's there. 

Please say an extra prayer for today, Mason has a knack for doing too well in formal assessments.

We are trying to have faith in God, that this is where we are being led.

We have always left our finances up to God. 
God can provide & he truly does.
But there is still anxiety about it.
It's only human right?

Our world has been different then we expected.
This is definetly not how I imagined things.
We have been talking about how our future as parents has changed...
And we strangely are at peace with it all.

In some "Drop us to our knees" news, there are some really great people in this world.
People posting left & right about Mason.
People sharing their thoughts, words, & prayers with us.
And then there is this one thing...
We got news yesterday that we are to write Christmas wish lists for our boys.
Some lovely people are going to buy them their Christmas gifts.
We are just so thankful.
Tears are strolling as I write this.
We really like giving our boys the world...
this Christmas we weren't going to be able to give them much.

My Christmas wish's are...
Mason to become healthy & happy. Whole.
Josh to have peace, the attention he needs. To be happy at home.
Carter to also become healthy & eat. Just. Eat & drink regular liquids.
Nick to have some time to rest.
For myself, rest & take care of myself properly.

Our family has felt the outpouring of prayers & support from everyone.
It has been truly amazing.

But I am going to ask again. 
Please say an extra prayer for Mason @ 12:30 Pacific time.
We really need the best outcome. 
We also understand that God has a plan.
We are trusting.

The Sears Fam

November 8, 2010

New Family pics from a friend!

Apparently we still are a Hot couple! LOL

And we all know what this leads to...

It leads to a BIG family & this picture is so our family.

Welcome to Carter's cheeky face.

Oh they are too cute...but oh so naughty. 

 Trying to get a good family pic... priceless.

The Sears Fam

November 6, 2010

We have been brought to our knees.

How to say thank you?
The support that people have offered has been amazing.
There have been over 15 people who have posted about Mason, our family & the fundraiser.
There have been probably over 100 tweets about it.
I have received a couple dozen emails,
and we have received donations.
God is so good.

For those of you who are new to this Blog.
Our lives are not normal,
I am not positive all the time & I write about the negative often.
Not much has gotten better, but much has gotten worse in the last 6 months.
We have had appointments lately that have been incredibly hard.
We have been told that some things that have been in our nightmares are true.
The last several months have all been about waiting & our new reality.

And we are still waiting. 
Waiting for Genetics to come back & tell me if Mason has 
Smith-Magenis Syndrome or something else.
Waiting for the rest of our latest Autism Assessment which now happens on Tuesday.
Waiting to know what is really happening with our Son...
what can we expect our future to be.

It has been a month or so of reflection for me.
What would our life have been...
What should I do with it now.
See I am planner.

I need plans, organizations & to know what is coming.
God has taken us down a path that is not always easy.
It can cause lots of anxiety & lots of hurt.
But I do love my life.
I don't know what I would do if my life was different.
It would be very empty, I would be very lost.

My life is not something to pity.
I am not a hero.
I am a Mom of three boys.
And yes one of them has special needs.
But I am no hero.
I am a Mom doing what has to be done to care for my children.
That is all.
I yell far too often & I get angry with our situation.
Sometimes I feel like giving up.
But how could I?
This is my life & I wouldn't change it...too much.

This fundraiser for Mason means so much to our family.
We have felt alone in our fight for Mason.
Most have left us alone.
 Those who haven't we cherish a lot more.

I never believed that when I starting Blogging that people would read.
I never thought what it could do for me.
I never thought that of what it could do for our family.
I just needed to write.

For everything it has done for us I need to thank you.
It has brought us to our knees...
we have been shaken down to our core with shock & emotion.
It's just such a blessing.
So thank you.

Next week we will be spending a very large sum of money on Mason's test & some supplies.
Thank you to all of you who have had the capabilities to donate & have.
We understand that not everyone can help financially & would never want you to feel that you have to.
All the support we have received no matter the form is more than we had imagined.

I have met some beautiful people this past week & hope to meet more as the fundraiser continues. 
Don't be afraid to leave comments or email us.
It has been amazing to read your supportive words.

Alison from aPearantlySew left this verse on her post about Mason it really hit me hard so I share it with you.

"For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me. Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you? The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me"
Matthew 25:35-40 

God bless you.
May he keep your family healthy & happy.

The Sears Fam

Links to some of the people who have posted on our behalf:
(if you have posted & are not on this list please let me know)!/mamasitamica

And there are many more to come!

November 1, 2010

A Fundraiser for Mason.

In the past couple of months Mason's story has been getting around.
People we have never met have left messages for us,
they have prayed for us & they have supported us.

In the past months since I started blogging, I have met some beautiful people.
Bonnie from Bonnie's Bows in one of them.
I met Bonnie on twitter & we clicked.
Bonnie read about Mason, our struggles & his needs.
Bonnie wanted to help, so she is!

Bonnie sews the cutest stuff!
These are Bonnie's Daughters in her Tutu Dresses & Headbands with interchangable flowers!

Bonnie's Bows also sells the following items:
~Monogramed Bibs in every color
~Lovie Blankets (she has many colors & patterns just contact her!)
~Crochet Headbands with or without flowers 
~Crochet Beanie hats with or without flowers
~Hair clips
~Wall Hair clip holders
~Wall Letter Art

Checkout her Etsy Store

Now I am telling you all this, because Bonnie is has decided to fundraise for Mason.
In November & December twenty percent of Bonnie's Bows sales are going to Mason's Story Society. 

To see more about Mason's Story Society Click here.

It is the time of the year when we are short on funds & medical supplies.

We are in the process of waiting for government to look at our newest application & also applying to Charities for help.

Our family can't thank Bonnie enough for wanting to help us with Mason's costs & we are truly thankful for individuals who support us in anyway they are able to. 
Prayer, meals, donations & just people who care have made the difference in this past year. 

So if I can ask you to please consider buying christmas presents for little ones at Bonnie's Bows.

We have had a great deal of people ask us to add a Paypal button to our blog so they can donate. So we have!
To the right we have added the Paypal button for direct donations to Mason's Society. There is also a button if you would like to add it to your Blog to let others know about Mason & this Fundraiser.

The Sears Fam would love to thank you for your thoughts & prayers.

The support that we are receiving from individuals we have never even met & others who know us well has been so needed.

Thank you & God bless you.

Wishing you Health & Happiness as the Christmas Holidays start.

The Sears Fam.
Nick, Dana, Joshua, Mason, & Carter

*I will be adding a page by the end of tonight to explain Mason's Story Society.

Helping Mason