A Little Elf Magic

I saw a post or an ad about Elf on the Shelf Elves,

and it got me thinking.

I could really make it fun for Lanie and Liam this year.

I could seriously create more Christmas magic for the kids.

Sure it's going to be a lot of work,

it already is a lot of work,

but it's so worth it!

So what did I do?

It all started on Facebook.

Our Elf,

Elfie,

created his very own Facebook page called Elfie Selfies.

What happened next?

Well the FB page didn't show enough Chrismas cheer and fun,

so "he" created a blog.

Yes a blog called Elfie Selfies.

Then posted several craft ideas.

Then I showed Lanie the blog.

Wanna guess what happened next?

Well she flipped!

Her eyes got huge as she read the title of the blog.

Then her jaw dropped to the ground.

Then her head slowly turned to look at me.

"OOOOMMMMGGGG Mom that's  my Elf!!"

She Proclaimed.

And yes she said the actual O.M.G. letters and not the what it stands for,

My little girl who will soon be 7 years old,

was extremely thrilled and glued to my side.

Needless to say,

I couldn't do anything else until she walked away.

Yes yes.

I did it.

I already see the excitement.

The thrill.

The magic.

This year is going to be GREAT!!

Lanie is already requesting that Santa send her a girl Elf,

since we have a boy Elf,

That way there are two of them to watch over both the kids,

She said if Santa grants her wish,

she will name it Selfies.

So the blog can be both their Elves posting.

Please check out the blog,

enjoy the crafts with your kids,

and give feedback.

Fun Halloween Learning Activities

Found at Child Care Land Blog,

this activity is great for fine motor skills

and counting.

I just love this Halloween activity.

Found at Teachers Pay Teachers

You can get these free worksheets at 

http://teachingfirst-abc.blogspot.com/2014/10/october-freebies-galore.html 

Found this cool worksheet on Pinterest

When Life Throws You A Curve Ball

I want to say that life is crazy,

or is it insane,

or just insanely hard?

I'm not sure how to describe my life,

but that it's been filled with one test after another.

They say these trials and tribulations are supposed to make us stronger.

There's also a graphic I saw online that says,

"Don't you think I'm strong enough?"

Well,

No.

I guess not.

I have Fibromyalgia.

It's painful.

I hate being in constant pain,

but I found a way to work around it.

Well for the most part anyway.

That time between major flare-ups that is.

So what happens when I finally figure it out,

and learn to live with it?

God throws me another curve ball.

Another test.

Because a life time of test wasn't enough.

Because in his eyes I'm not strong enough.

Because he just loves me that much??

I went to my doctor yesterday.

My blood pressure is low.

Which is seriously weird considering the stress I'm under.

Helping plan and organize a school carnival is hard stressful work!

I can't tell if my weight is up or down,

because well,

my memory has been tampered with thanks to FM,

and I can't remember what I weight before.

(Liam is almost 28 lbs now if that's any consolation!)

(And it should be because that's amazing!)

(And I'm serious that I can't remember what I last weighed in at,

it's not that I don't want to share)

(although I am embarrassed by it, I know its part of FM)

Anyway....

I got my flu shot.

(yay me for wanting to protect myself and therefor Liam)

My blood work came back.

My kidneys are functioning fine.

My immune system looks good.

I was neg for rheumatoid arthritis.

Here's the kicker though.....

My blood work came back positive for the Lupus marker.

(Just let that sink in for a second, LUPUS)

Lupus?!?!

Seriously?!?!

I didn't even know what that was!

I mean besides your body attacking itself.

And that it was seriously serious.

(Yea I know I said it "seriously serious")

I stared at the doctor.

I mean full on stared at him like

"What the heck man?! You like messing with me right?"

But sadly no he wasn't messing with me.

And how do I know that?

Because he ordered more blood work.

A comprehensive ANA panel to test for Lupus.

So not only did I get crud-tastic news,

but I got stuck my needles twice yesterday,

and I have a fear of needles.

Liam got to watch mommy get 2 owies.

I bet he thought that was payback for all the times I watched him get shots and IV's lol.

My doctor said that because I have several Lupus symptoms,

and that the marker was positive,

that it was important to get the comprehensive panel.

We had to be sure.

After telling me this,

he asked me a ton of questions.

How do you do in the sun?

I avoid going out in it as much as possible.

Why?

Well doc...

It makes me sick to my stomach.

My face feels like its burning and I get this weird sunburn on my face.

And it hurts my eye.

There aren't dark enough glasses in existence to help the light sensitivity.

He looks up at me with this,

"Oh cr@p, why didn't I know this" look.

My bad.

I just figured sitting you down with this huge list of symptoms would make you think I was a hypochondriac and then you wouldn't take me seriously or treat me.

I just figured that because I've dealt with it since I was a teen that it was just something that wasn't a big deal.

Whoops.

So after a laundry list of questions,

he said I had several Lupus symptoms.

Then that's when he got pushy about the flu shot.

He looked at me with wide eyes like he was trying to brainwash me,

and said "why don't we get you a flu shot today"

Me "Um" I look down at Liam and start to answer only he talks again.

Doc "What do you think? I think you should get it"

Me "Yea ok"

How could I deny it when I'm looking down at Liam?

How could I not vaccinate myself when I want him to stay healthy?

Flu shot it was.

For Liam.

But in my arm,

because yea I just "LOVE" getting stuck with needles.

So now Liam and I are vaccinated.

He refilled my meds and added a new one for migraines.

Because having a migraine most days out of the week sucks.

Honestly after the news that I could possibly have Lupus,

I was in a daze.

It's like my brain temporarily froze,

or shut down.

It was my brains equivalent of jaw dropping to the ground.

There were no other emotion at that moment but pure shock.

I thought Lupus has been ruled out last year.

Last December I believe the initial test had come back neg for Lupus markers.

How can it be positive now?

He said that it's probably because there's inflammation in my body associated with the pain.

Uh,

last time they ran the test I was so bad,

I could hardly even walk.

I'm positive there was inflammation there!

And why Lupus of all things?

I don't think I've ever wanted Fibromyalgia more in my life!

The first chance I got last night,

I did a little research of Lupus.

There this one blog of a girl who has Lupus.

Shes been doing Chemotherapy for 2 years to fight her Lupus!

Seriously!

I read there is different types of Lupus as well.

Any way you look at it,

it's not good.

Fibromyalgia is basically a God sent compared to Lupus.

I didn't ask God 'why me?'

Nope.

Instead I prayed that he would grant me the strength and courage to get through this.

If it is Lupus that is.

I wanted to cry.

I honestly almost did while talking to my Grams.

Today I feel resigned.

All I can do it wait until the test result come back.

All I can do is pray.

There was this graphic on FB today:

There was no question about it.

If I could sit on that bench and talk to one person from the past,

someone no longer on earth,

I would talk to my dad.

I wouldn't ask him what went wrong in our past.

I wouldn't ask why he didn't end up with me,

or talk about how different life would have been,

No.

I'd ask what his greatest advice was from what he learned about life.

I'd ask his advice on how to just deal with life.

I'd tell him I love him,

and that I missed him,

that even though I wish I had grown up with him,

that I understood it was out of his control.

Most importantly,

I'd hug him.

So what has been your greatest advice?

What has life taught you?

I've learned life is hard.

If it's easy your doing it wrong.

I've learned you have to work hard and struggle to get anywhere.

And when you get there,

you struggle more.

But it's not impossible to find happiness.

You just have to work to keep it.

You have to be able to see the good in everything.

If you honestly can't see any good in a situation,

you have to be able to get yourself out of it.

That's life in a nut shell.

I Won Today

It's been hectic here. Seems like it always is. I've been busy helping PTA with a school carnival, taking care of Liam and Lanie and dealing with my own pain. 

The kids are in bed so I can finally lay here and succumb to the pain. My kidneys have been hurting bad since last night. Earlier today abdominal pain stated and is only gotten worse. I also have a migrain and stabbing shoulder pain. 

I go through the day and force myself to work through it for the sale of my kids. They don't deserve a mom who is miserable and unable to be there for them. 

I played games with Liam.

Took care of all his medical needs. 

We had a gtube emergency when he pulled out his tube accidentally and I had to rush across town to my niece so she could help hold him down so I could get the tube back in. 

Went to the grocery store (twice). 

Picked Lanie up from school. 

Cooked dinner. 

Helped Lanie with homework. 

Worked on physical therapy with Liam. 

Played outside with the kids. 

Showered them and got them off to bed. (With Liam being on an all night feed it's no easy task)

I did all this and more without complaining or letting on that I was miserable. I feel like I won today. Despite the pain, I won. I fought through it, got things accomplished. Fibromyalgia had no chance in hell today! 

But now the kids are asleep and I am miserable. I'm allowed to Waller in that pain now because I survived today. Now if I can just get the pain level down a bit so I can rest and get through tomorrow's hecticly busy day. 

Finding Strength

I won't lie.

Life is hard.

If your life is easy,

then your probably doing something wrong,

or are in denial.

If your life really is truly easy,

then millions of people envy you.

Nothing about my life has been easy.

NOTHING.

From the day I was born I had to fight.

I was born tiny at barely over 4 pounds.

I fought to survive.

Ever since I've been fighting.

That's what I do.

It's who I am.

Growing up was never easy.

My marriage isn't easy.

Having kids isn't easy.

Having a child with so many medical needs,

sure isn't easy.

And having Fibermyalgia is far from easy.

That's life.

Just because I fight everyday for some happiness,

doesn't mean I'm strong.

Every time I find the strength to overcome one issue,

I'm forced to yet again find more strength to overcome more.

Like I said,

life is hard.

I don't spend everyday complaining.

I spend everyday trying to overcome.

Complaining is a useless act.

It only makes you more miserable,

and makes those around you miserable.

When you complain all the time,

people don't want to be around you.

But what do you do when you plaster a smile on your face,

and pretend everything is fine,

and still no one is there to support you?

You find the strength to get on with life without them!

Before Liam was born,

I had friends.

Not very many but they were there.

We'd get together,

go shopping,

out to lunch,

or just talk.

After Liam was born,

no one wanted to be around.

Instead of being there to support me while I sat there watching my baby fight for life,

they deserted me.

Not one person reached out to me just to say they were there,

No one asked how he was doing.

How I was doing,

No one cared how I was doing.

Total strangers cared,

but my so called friends didn't.

3 years of battles,

30 hospitalizations,

countless surgeries,

and where were those friends when I needed them the most?

Not by my side offering even a shoulder to cry on.

How many times did we have visitors in the hospital from someone other than family and our pastor?

Once.

How many times did family even come visit?

If you don't count my own husband and daughter,

you get 3 times.

But in those 3 years do you know what I heard many times?

"You shouldn't post that, it's to hard to see"

"I can't be around, it's just too hard for me to see"

Did they every take into consideration how hard it was for me?

This was my son fighting for life.

I was by his side day in and day out.

So because it was my own son going through this,

it was easy for me?

No.

No it wasn't.

Saying life was very hard during these times is an understatement.

But guess what?

I survived.

Do you know what that means?

It means I survived the worst times of my life alone without them.

It means that now that things are better,

that I have no room or time for those who didn't care for us when we needed them.

There's no room in our lives for people who don't care for us,

or for people that bring out the worst in us.

They will only bring us down.

Yes I forgive them,

those who decided that being there for me was too hard for them.

But I won't make that mistake again,

and depend on them.

People are unreliable.

People are selfish.

I found strength to get through the last 3 years 3 months,

without the support of "friends".

I will find the strength to get through this Fibermyalgia journey alone as well.

Because if there is one thing I learnt in life,

it's that people will always walk away when you need them the most.

Think that's pessimistic?

It's not.

It's being truthful.

It's being honest.

It's not setting myself up for more hurt.

Life isn't cookie cutter perfect.

No one is perfect.

You have to expect the worst,

but hope for the best.

This life is like scaling a mountain,

you either find the strength to push on,

or you fall.

What's Your Value?

I just read this article and am pretty pissed about it! This mom's whole theory is based on the fact that the one year old won't remember it and that how good a mother you are is judged by the birthday party you throw for any kid under 4 years old. Yes they won't remember it, but you as a mom will. It's your time to celebrate that you had a child, no matter how old they are. This mom obviously didn't think of those mom's whose babies weren't expected to survive let alone make it to a year old. As a mom of a CDHer who was not expected to live, when his birthday comes around I am not just celebrating the day he was born. No, that memory is harsh and still hurts. I am celebrating that my son survived. That I survived. I am celebrating life and remembering all those lost to this horrible birth defect as well as all other mothers who didn't get to hold their sweet baby on their birthday. It's an emotional time. The party isn't about how many presents we can get. I teach my kids that presents don't matter. What matters is spending the time with those who love us and are fortunate enough to be able to be there with us. Presents can take a hike! So hearing that my value as a mom is judged off how good a party I throw is ridiculous and outragous. Does that mean I have no worth because I threw no party for Liam when he turned 3 for fear he would get sick before surgery? Or that on his second birthday I asked for no gifts? How much time did I spend by his side in the hospital? How many nights did I clean up vomit or hold a crying Liam? How many meds and feeds have I pushed through a gtube? Better yet how much of my heart did I give to my son? How many mothers would be willing to go through all this? I know many who wouldn't. I know that my own mother would have walked away to let me die alone if I had been born like Liam. So yes I am pissed that this moms view would deem me superficial and think that me throwing a party for my son to celebrate his life, a life he wasn't supposed to have according to doctors, is superficial. I probably shouldn't take so much offense to this but the fact is I do. I threw parties for my daughter as well because I wanted the memories. I wanted to share her first year. I played slide shows at both kids first birthdays. When I throw a party for my kids I don't expect gifts. All I expect is for people to show up and celebrate their lives and eat a little cake. No gifts are ever required! As a mother our value should be based off our love and our love isn't a party or what we can buy our kids.

Here's a link to the article in question: http://thestir.cafemom.com/baby/177392/first_birthday_party_stress_planning?utm_medium=sm&utm_source=facebook&utm_content=fanpage&newsletter

Feeding Tolerance Issues and Infection

When it rains,

it pours.

It's not pouring yet but I can't help expecting it too.

This is life.

This is struggle.

This is how we survive.

For the third time now,

Liam hasn't tolerated the increase in feeds.

I've been trying to do this increase the GI wanted for weeks.

A little over a month I believe.

But he just can't handle it.

Two nights ago he vomited in his sleep.

I didn't know until morning.

I was scared.

He could have aspirated and died.

Thankfully he has a sat monitor.

All his levels were great so no alarms went off.

But still.

After talking to my husband about it,

we decided we just couldn't risk his health for the increase.

Something had to be sacrificed.

We couldn't really sacrifice the increase.

Yes he's growing and gaining weight,

but it's very slow and we need to bulk him up for winter.

Why?

Because he ALWAYS gets sick in winter.

When he gets sick he looses weight,

and that can be dangerous.

So to give him his best chance,

we decided we had to sacrifice daytime eating by mouth.

We had to increase his day bolus feeds from 1 a day to 4.

Basically every 2 hours starting at 11:30am,

he will get a 4oz bolus.

This means he will most likely eat less by mouth.

But he won't aspirate when he vomits at night,

because his night feed was lowered back down to what he does tolerate.

Yesterday was the first day of this change.

I was scared and worried his stomach wouldn't handle a bolus every 2 hours.

I was happily surprised that he tolerated the change perfectly.

He still even ate a little bit in between feeds.

I tried really hard to find the bright side in this.

I was upset because I felt all the progress we made in eating,

would be lost.

I felt we'd have to start all over again.

I felt desperate and lost.

It was hard and tiring to get where we are today,

even though he doesn't each much,

it's still more than he's ever eaten.

I had thought I could see the end to tube feeds in our future.

But now I felt like there wasn't a future that didn't include a tube.

It took lots of deep breaths and searching to find the bright side.

But I did.

Even if this new regiment last's for months,

through winter,

it just may help us.

His stomach will get used to having food,

large amounts of it,

so when we decide to get rid of those feeds,

he just might eat more.

That's what I'm telling myself anyway.

Sure it didn't work the last time we tried,

but he was really young and didn't like things in his mouth.

Now he knows what food is and likes it.

I am grasping onto this concept,

this idea that it could all work out.

It's my lifesaver in this stormy sea.

On top of the tolerance issue,

Liam has a Gtube infection.

The stoma is pretty bad.

This is one of the worst infections I've seen yet.

We will get it to go away though.

We always do.

Because that's what we do,

we overcome,

we survive.

That's the only life we know now.

Halloween Magic

What happened to that mom?

That mom who decorated every holiday no matter how big or small it was?

This year she is gone.

Hiding some place refusing to come out.

I don't have the energy this year.

I so wish I did.

I want to get past this chronic fatigue and chronic pain,

hoping that decorating will make me feel better.

Is it even possible to feel better?

Is it even possible to push past this?

I have no clue.

I wish I could bring back that mom who got overzealous about all the holidays.

That mom that no matter what decorated.

That mom who always baked for every occasion.

That mom who was just so desperate for something normal that she made it happen.

What's changed?

Yes I have fibermyalgia,

but I know I've had it for some time.

It only got worse coming up on a year ago.

I want to dig through the decoration.

I want to scale the counters to hang things from the ceiling.

I want to stand on my tippie toes on the top of the step stool to hand fake spider webs.

I want to hang black gossimer in the windows,

black paper owls on the door,

glowing eyes in random places.

I want to stand back at the edge of the yard and admire my work,

knowing that all the kids in the neighborhood will point and laugh,

and be excited about Halloween.

Halloween is my favorite holiday.

You get to dress up and become anyone you want.

You get to scare and be scared just for laughs.

And most of all,

my husband proposed to me on Halloween.

At 2am.

When he didn't even know I LOVED Halloween.

It was meant to be right?!

And even though things have been difficult since Liam was born sick,

I still love him with all my heart.

Even when at times I feel it would be easier to leave him,

I still love him.

Love isn't easy.

Your supposed to work for it,

make it work.

Because otherwise it isn't true love.

So maybe that's why I am so saddened by the fact that I haven't decorated.

In my own way,

it's me celebrating the day he realized he loved me ad couldn't loose me.

Halloween is magical.

It's when everything we don't believe or shouldn't believe in comes alive.

It's the only time of the year where the taboo is not taboo.

Princesses find their princes.

Or happiness in HUGE bags of candy.

Ghost and witches fly around from door to door saying the magical words that get them candy,

trick or treat.

Everyone can be who they want to be.

For once they can have hope and see the "magic" of this world.

It's great fun seeing all the costumes.

Watching the kids fill their bags with candy then later gorge on it.

Fun Halloween games,

bobbing for apples,

haunted hay rides,

haunted forest.

Hogwarts come to life,

whole blocks turned into pirate ships.

Halloween is about discovering the magic.

I want to rekindle old memories.

I want to show my kids that there is magic out there.

I want to see their faces light up as the house transforms from just an ordinary home,

to something greater.

So can I get my body to cooperate?

Can I work past this?

I honestly don't know.

What I do know is that I want too.

Instead of sitting here feeling sorry for myself,

I'm going to get up and at least try.

I shouldn't give up before at least trying.

My kids need to know that even if you fail,

it's ok because at least you tried.

You don't give up before the game even starts.

Be thankful for that which you hate.

2 years later and there are still days that just absolutely plain and simple suck. Days I want to throw the feeding pump out the window. Days I want to say no more tube. That's just part of the journey and the process. We may never get rid of his feeding tube, that's just a fact we have to live with. And even though it's hard we have to remember to be thankful for that tube that we hate most of the time because that tube has saved Liam's life. It's the reason he's getting enough calories to breathe and grow and survive because alone he cannot eat enough to do so. 

We must learn in this journey to be thankful of that which we hate. 

We hate so many things in this journey that we forget the very things we hate are beneficial to our children. I hate his feeding tube but I am also thankful for it. 

I hate the nebulizer and treatments but am thankful for them because without them my son couldn't breathe. 

We tend to focus on so much that we hate, that we forget those very things are the reason we have our children here with is today. I'll take my baby, machines and all.