Friday, May 28, 2010

Poem by a Fibro (2)

Breathe Easy

Every single breath we take,

A gift from God, which we partake.

We live our lives without a care,

Not even thinking, we suck in air.

The air goes in, our lungs it fills

Into our red blood cells the oxygen spills.

It flows out, each part it graces

From our toes, up to our faces.

The other cells take in that gas.

From cell to cell, none will pass.

It helps them grow, it helps them fight,

It gives them power, it gives them might.

But what perchance, should the lungs fail?

Is that a cause to sprawl and wail?

There is a preciousness with each breath

For without, it’s certain death.

There are some born with a disease

Their genes are missing certain keys.

They lose their lungs but not their heart

Striving to live from the start

They seem to grow beyond their years

With their lives so full of fears

They grow and learn, among us all

The hacking cough as their call

They learn to live, tho they’ll die

To live their best they do try

Weeks in hospitals, days spent sick

Most of them as skinny as a stick.

Doing treatments, having fun

Sitting outside, time in the sun

Taking handfuls of pills every day

So to live, their bodies may

Years go on, health declines

After doing things of all kinds

Constant infections do their deed

At times, the lungs, crack and bleed.

In the lungs, scar tissue fills

Mucus clogs, together, it kills

And so the body loses life,

The spirit leaves, its earthly strife

It enters through the heavenly gate

To receive its well earned estate.

There they wait for all of us.

We needn’t make a fuss.

For we will see them once more

Sitting with God upon the floor.

Sunday, May 23, 2010

A Fibros Poem

So at 1:00 AM, Spencer decided to whip out his computer and write a poem. Now if you've ever read one of his poems, you could have many different emotions such as: laugher, sadness, pain, empathy... etc.
I get excited when he writes. He has such a way with words. He can really put his emotions into words in a special way. He's written me a couple poems and I love them. Usually he writes about his CF and his long battle with it. The poetry is amazing. I believe that one time his poem was featured on a website. :)

I want to share with you a poem a week.. for your laughter, inspiration, and empathy. A lot of these are expressing his true feelings and I hope that you will be touched in some way by them :)

All of my CF friends and caregivers know what it's like to do treatments every day... this one is kind of funny about missing a treatment... He wrote this several years ago. ENJOY!! :) Leave your comments if you'd like!!!

Treatment or Two

Oh crap! What do I do?

I forgot to do a treatment or two.

I'm going to the doctors later today;

I wonder what they're gonna say.

I could always tell them that I'm dying,

But then they'd think my brain is frying.

OH CRAP!!! What do I do!?

I forgot to do a treatment or two.

I didn't wake up until 6:30,

I didn't shower, I'm still dirty!!

There wasn't enough time to do my vest,

The doctors just won't be happy without my best.

Oh crap........what do I do?

I forgot to do a treatment or two.

From now on no more sleeping late!

That just might change my fate.

Their gonna make such a fuss,

And bite their tongues as not to cuss.

Oh crap what do I do.........?

I forgot to do a treatment or two.....

Well, it’s more like fifteen or eight,

But who's counting, it's too late.....

Wednesday, May 12, 2010

Death and Time.. and CF

There is no fancy way to say it... no sugar coated way to put it... but I wish there was... I wish there was an easier way to think of it... to know everything happens for a reason.. But there isn't.
Death scares me. It scares me now more than ever. I have been forced to see death in a whole different light - and it's upsetting, aggravating, frustrating, and devastating to think about all at the same time..

I never thought that I would have to put death into my reality so early in my life. But lately - it's been the only thing I can think about. Everything is a matter of time to me now. Everything is in years... It shouldn't be... I know it will get better - I'm just trying to grasp... death... dieing... passing away...

Death and cystic fibrosis never clicked with me until a month ago. I didn't realize the reality of it all. I thought... psssh he will be the exception. He will be the one guy that lives in to the 70s or 80s with CF.. We can fix it all and it will all be normal... ok... fine...

But it's not true... at all. It's all very real. He is going to die eventually and I hate it. I'm scared and frustrated and tired of thinking about it. I never know when that day will come... It shouldn't come in a long time... but how do we know?

Why do the most deserving people have the most devastating problems.. It's not fair. I hate it.. I'm pissed off. I want my love, my best friend, to live a long life. To be able to do the things he once did. It all just seems to be going in a downward spiral. Things get worse... We take a couple steps forward and then more than a couple steps back. Make no progress. Can progress happen? will it happen? Who's to say?

I just need to accept death. But how? How do I deal with the thought that my future husband is going to leave me and his family and friends behind well before any of us are ready. How can I live with knowing that I have a limited amount of time with this wonderful man? How do I stop counting years.. and just live every day to the fullest?

I mean... I do my best to cherish every single day.. Trust me - I do.. and usually I do a pretty good job at all. I can make the best out of the day.. But if I stop and give myself time to think about it (usually in the evenings.. or when he's sick) I start thinking about time... time time time.... I want to stop putting everything into years!!!! We don't know that we have 3 years or 30 years together.. and we can't know that..

-sigh- No one should have to go through this... Especially so young... not the CFer and not the care team. It's hard. Unfair. And I absolutely hate it.

Time. Time. Time.