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Mason is three.

March 22, 2011 1 Comment

It has been three years.

Three years since our lives were completely changed forever.
Three years since I thought my son was healthy, 1090 days since I discovered he was not.
It has been three years since I have averaged more than 3-4 hours of sleep a night.
Three years since “normal” existed in our world.
Three Years since Mason was just a teeny baby sitting in my arms, as I dreamed about what his life could become. 
Three years of struggle, hardship and pain.
It has been three years.
Three years since Mason came into our lives and changed who we were and are.
The growth, the bond, the strength we have achieved, all from Mason.
Our marriage and family tested more than most in a life time, has been made stronger with deeper love.
Patience.
Most important Mason has taught us, we are not alone.
God is in control of everything, we just need to trust.
Mason taught us that finances are just that finances.
He is the reason that we learned money will come and go, there is no reason to fight, or worry about it.
God provides.
Mason has taught us that there is light in the dark. It may be hard to see at times, but its there.
Mason has made us grow, and there is so much more growth left.
Mason’s “terrible two’s” has been the hardest year so far.
Moving yet again.
Financial burdens
The following are the Diagnosis we received in the order we received them in the past year:
Oromotor Dyspraxia
Sensory Processing Disorder.
Anxiety Disorder ( Mason and myself)
Pnuemonias
Non Restorative Sleep Syndrome
Chronic Lung Disease
Development delays become more severe.
Mason stopped eating orally.
Expressive Language Disorder
Impulsive and harmful behaviours.
Restless Leg Syndrome
Smith-Magenis Syndrome
PDD-NOS (Autism)
Possible Sleep Apnea and seizures.
Motility (dumping issues)
Possible transition from G-tube to GJ-tube is being talked about. 
Getting asked to move again due to Mason’s noise and behaviour.

This has been the hardest year of my life, depression creeped in.
The amount of information that our family was faced with this year was “out of body”.
I personally have felt lost in the craziness of our life.
This has also been the biggest year of growth and support in my life.
My motto is no longer,
“It is what it is”.
I now rock out : “In him I trust”. 
This has been the biggest change for me in the past year.
I am ready for Mason’s third year of life. 
We are ready to take these “diagnosis” and show them who is boss.
There are many changes to come this next year, and I am finding myself very ready for them.
But most of all I am ready to try to learn how to help Mason.
And Josh and Carter.
We all are going to need to learn how to deal with it.

To Mason,
I love you more than words or actions can or have said.
I wish I could take all the pain and suffering away.
I am happy that you are three, it has all gone so fast.
Happy Birthday Spiderman.

Love your Mama.

Filed Under: Autism, Emotions, Mason, Smith-Magenis Syndrome

Church.

January 27, 2011 12 Comments
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!
Filed Under: Carter, Emotions

The Best Kept Secret-An Auction for Mason

January 12, 2011 Leave a Comment
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.
The Sears Fam
Filed Under: Auction, Emotions, Mason

The Best Christmas Present we could ever get.

December 17, 2010 19 Comments
Good tears are a flowing people…
they are flowing and it feels so good.
This morning we were told that Mason was found to be eligible for the At-home program.
Not only was he found to be eligible for Medical benefits but also Respite.
Just pure shock and excitement at getting anything…
but getting both Medical and Respite. 
Wow. Just. Wow.
This means that most of what Mason needs is going to be covered. 
I cant even tell you what this means to us.
AHHHHH!!!!
::tears and snot everywhere::
We have been fighting for so long…
We know that the fight is not even kind of over, but at least people are now joining our team.
A strong team wins the game right!
The past five weeks have been an absolute whirlwind for us.
First we get two diagnosis in one week.
For those who do not know yet Mason was diagnosed with Smith-Magenis Syndrome and Autism.
In the past five weeks we have gone to having very little funding…
whatever we could get from Charities.
To know being approved for Autism therapy, Medical benefits, and Respite.
Talk about a complete three sixty to last year.
Not even going to think back to where we were last year. 
In the past couple months we have had several donations, some big & some small.
It has all helped.
We have presents that are coming for our boys for under the tree & a food hamper coming from the church.
It may seem silly because my Mom is making Turkey dinner on Christmas day, but I really would love to make my children their own turkey Dinner here at our house on Christmas Eve. 
It just wasn’t in the budget with everything else this month. 
I can’t even wait.
Maybe Mason will even enjoy a few bites of what he’s allowed.
We want to make it clear that my Nick does work, in fact he has one day off this week.
 Nick works so hard for us. 
We sit in lower middle class income, and we would have been alright even if I didn’t go back to work ever. 
But the costs of Mason have cost us more…
Like so many people we had to sell our home, use our saving and then go so far into debt.
It will take a miracle or very rich person to help us, to ever get out of the pit of darkness that is our finances.
It’s a good darn thing we believe in Miracles.
::laughing:: Cause one can dream right!
We know that God has had us in his hands guiding us through this.
We have felt his hand alot lately.
The people that walked away from us have been replaced by a couple hundred more and those that have replaced them mean so much more than we could ever tell you.
We have truly felt alone for so long and the past several months we have felt so loved, prayed for and supported.
I am sure that some people find it funny that I say I am loved and love complete strangers.
Even Nick thinks its a bit nuts how much I care about “complete strangers” but I do.
You all have lifted our spirits.
We can’t even begin to thank all of you who have reached out when we have been in the worst places.
Josh is and has been having a lot of trouble handling everything that has been going on.
I am praying that with someone to help with Mason now, Josh and Carter will receive the attention they need. 
This has been extremely heart breaking as a Mother. 
I just don’t know where to begin to help heal Josh’s heart.
It is hard living with Mason right now.
It must be especially hard on Josh.
This funding is going to do more than just pay for Mason’s extraordinary needs, it’s going to bring our family back to a place where we can focus on being a family.
Where I can focus on being a better Mother.
Where maybe we can see more of Nick.
What a Christmas miracle.
The tears won’t stop flowing.
But they are some of the best tears I have ever had.
I just need to Scream.
And as soon as the babies wake up I just might!
As for us we will be decorating our Christmas tree tonight as long as Nick is home.
It’ll probably happen tomrw since I have a feeling he is going to get called in.

Celebrations are in order, whos coming?
God is just SO good.
“And my God will meet all your needs according to his glorious riches in Christ Jesus.” – Phil 4:19

The Sears Fam

Filed Under: Autism, Emotions, Funding, Mason, Smith-Magenis Syndrome

We are a bunch of Sickies…

December 15, 2010 3 Comments
It has been a really hard week.
Mason has Pneumonia…
Carter has Bronchitis…
Josh has a bad cough.
I feel like I was hit by a bus.
It hasn’t hit Nick yet & I am hoping it doesn’t!
So we are all trying to focus on getting better & getting into the Christmas spirit.
But I feel like we are being held back because the Government decides this thursday whether they are going to cover Mason’s medical supplies.
There is also a small possibility they see the NEED for respite.
So with this decision still up in the air I think we are feeling the pressure more than ever. 
We are also waiting to here if we are going to have to pay the government the $6000 dollars back.
My Dad said we should tell them if they pay the thousands they owe us then we’ll pay it back.
If only it could work that way.
Sigh

We won’t be hearing or dealing with any of the Autism funding until after Christmas.
January is going to be a very busy month as will the next several I am sure trying to get everything going and routined.
Have any of you dealt with the start up with Autism therapies and such?
Have any tips for me?
So far I have found NO support groups.
Once again I am going to ask for your prayers for thursday & for the board of people who decide our families future.
It is been a very emotional week so far for me.
Just so you know if we get funding it will be the best Christmas our Family has had to date.
I will be a ball of emotions either way.
If we get funding I am sure I am going to lose it & I will be an Emotional mess.
The fight will be over & maybe I can relax a little.
I want to focus on raising my family instead of trying to keep us together.
If we don’t get funding I don’t even know what is going to happen.
And I don’t even want to think about it cause it’s not going to happen.
I am believing, can you believe with me?
With us?
Can I just say how much I love you all.
This last year has been made so much easier for me with the support of good people.
I wish I could meet all of you & give you the BIGGEST hugs!
I will post as soon as we know!
Thank you so much!
The Sears Fam
Filed Under: Emotions

I am ok.

December 7, 2010 7 Comments
It is no secret I have been numb for a month or so now.
Fighting for so long to have Diagnosis, to find out what is really wrong with my son has been draining.
The report is here and it’s real.

Finally knowing has been surreal.

My son, my Mason has Smith-Magenis Syndrome & Autism.

And let the tears flow…
numbness is slowly creeping away.

I am ok, this is good.
I needed to feel again. 

The report makes it all real.
It means Mason is going to get help now.
Our family is going to get help.

I am ok.

The Sears Fam

See Autism Report below.

Filed Under: Autism, Emotions

I cried today.

December 3, 2010 9 Comments
We were slapped in the face today.
And it hurt.
I guess the “numbness” is finally subsiding & let me tell you it doesn’t feel nice.
The Government got us again.
The Negatives in the last three weeks.
1. Mason was diagnosed with Smith-Magenis Syndrome & Autism.
2. I found out my Identity has been stolen.
Kind of fitting as I felt stuck in someone else’s life.
3. The Government told us today we owe $6000 dollars, they had screwed up last two years & were giving us too much Child tax benefit every month. This is my only income & the only money the government gives Mason. They are garnishing Mason’s Disability Benefit & the Child tax benefit for the next 13 months. I have filled an appeal to not have to pay the money back, but the likely hood of that happening is pretty much nil. 
4. We are now going to have to move to I don’t know where when our Lease is up unless there is some kind of divine intervention.
5. Josh has been to the Principles office & has been punching other children at school.
The Positives in the last three weeks.
1. Mason was diagnosed with Smith-Magenis Syndrome & Autism.
I am just glad to know what we need to do to help Mason.
2. We found out that my Husbands shifts are NOT going to be changing & that means there will still be overtime.
He just worked 12hr shifts 10 out 12 days, poor Man & poor Mama.
3. The Government gave us the Grant to have more extensive Genetic testing to find out what mutations of SMS Mason has. This will help them decide on the best Medical treatments.
This grant is not one that people are usually able to get.
4. After putting my foot down, squeaking some more wheels I got some oil. The At-home Program Nurse was at our home on Monday. In her opinion Mason is dependent in 3.5 out of 4 of the requirements. Now it will be up to the board on Dec 16th to decide if they agree. If they do Mason will get Medical funding. It would be the best Christmas present someone could give us.
5. My Blog Design business is slowly starting to pick up & it couldn’t be at a better time. 
6. Josh is going to be taking the bus as of Monday. This will save 1.5 hrs of driving time, gas & Mine, Mason’s & Carters sanity. And Josh is thrilled to be taking the bus!
7. Josh has started seeing the Councilor at his School.
8. I cried today.
The work to be done: 
1. Get my identity back. Close & open all new bank accounts, call all creditors, get new SIN#, new Drivers, fill out fido paper work, and file a police report.
2. Fill out & get the Drs. to finish filling out paper work for Autism funding & Charity letters.
3. Lots of follow up appointments with several Specialists now that we have a Diagnosis.
4. File the papers for Autism funding & Charity funding.
5….
6……
7……..
8………..
There is so much more to be done, but I am not going to bore you anymore.
Today was a hard day.
I felt like we have taken 3 steps forward to only take 5 steps back.
Tomorrow is a new day & hopefully we can take it on with smiles.
Josh is staying home from school tomorrow so we can go see Santa at a quiet time for Mason. We are then headed to Children’s for Josh’s appointment and Mason’s blood work.
Hoping to post our Santa photos soon! 
Any Millionaires out there that could share some of their wealth with us?
Nope?
Just checking.
Miracles can happen right!
The Sears Fam
Filed Under: Autism, Emotions, Government, Smith-Magenis Syndrome

Just another Monday, just another diagnosis?

November 23, 2010 14 Comments
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
Filed Under: Autism, Emotions, Smith-Magenis Syndrome

It has been a day times ten.

November 10, 2010 2 Comments
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. 
Filed Under: Autism, Emotions, Hard Days, Mason, Waiting

Today could change everything.

November 9, 2010 4 Comments
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
Filed Under: Emotional, Emotions, Mason, Waiting
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