Friday, July 20, 2012

Boyet’s Arrival

IMG_7923Currently, there is a man curled up next to me on our bed exhausted from too little sleep before travel and jet lag due to 33 hours of travel.  His journey to be by my side was long and arduous; but I am so thankful that he was willing to come. Finally he is here with me and the next stage of our journey begins.  It has been such a long hard trek to get to where we are and we are a long way from being finished with Arnold’s immigration journey.  Thankfully, we can be together for the rest of the journey.


Boyet took me completely by surprise when he gave me an engagement ring.  I feel so blessed to have him here with me.  Honestly, we are just a simple couple, wanting a simple life. Family, faith, health, happiness, prayer, and hard work are the things that matter most to us.  There are so many things about my life that have changed for the better because of my relationship with Boyet. He has shown me that the simplest way of living holds the biggest promise for happiness in the smallest of places.


The ring that he gave me is perfect. I love my ring but I love the man that gave it to me even more because of what is in his heart.  He is a good man who willingly takes on all of my medical issues.  I know it can be daunting when you look at all the things I deal with but he has become my rock who is always there for me when things get difficult. When my symptoms are at their worst he brings everything back to simplest things.  Breathe, eat, drink, relax, pray, etc.


Somehow he always has the magic words to make things seem ok in my life. I am such a lucky girl to have such an amazing man in my life. I thank God for bringing him into my life and now for bringing him safely by my side. Our future is bright and I am happy.

Tuesday, July 3, 2012

Creative Chiari–Blog Carnival 5


First off, I need to apologize for being late with the blog carnival post.  I had a death in the family and my sister was in the hospital.  So it’s been a little crazy for me. But I am back on track!

This month’s theme is how we,  Chiarians, use creativity as a tool to help relieve stress, enjoy life and just make life more beautiful. So please let me take a moment to show you some of the creations I make.

I love scrapbooking and card making.  I began doing both before my diagnosis and I still enjoy it today.


Kindly note, Cricuts do not come with spell check and there is an H in birthday! LOL!


My precious dog, Ginger, that died a few years back.


I love that scrapbooking gives you a great place to store those paper mementos that would otherwise get tossed in the trash.


I made this ‘faith’ plaque for my good friend, Terry.  The I decorated it with beads and charms. 


Every year the ladies in my family do the Race for the Cure since my Mother is a breast cancer survivor. A few years ago I made all of us ladies convertible bag/backpacks to wear the day of the race. My Mom owns an embroidery machine so she was kind enough to do the panels in the middle of the bag.


This has to be one of my favorites! This sweet angel with all the stars falling down at her feet.

gnh rth

This piece has this wonderful (frustrating) flowers which were folded and stitched by hand.


This is a cute summer piece I created.

dyj emyu

I created this wall hanging for my friend, Heather, it says love, friendship and other things (I don’t remember).

quilt 7

My Mom and I made ‘bargello’ style American Flags at the same time. I love quilting with my Mom. Since she is a cancer and 2x open heart surgery survivor, she understands illness and limitations.

I also write poetry, most of which can be found here on my blog. But below is the one poem I have written about my Chiari battle.

Pink flawless skin, so soft and tender,
Sweet baby girl, full of hope and wonder.
Tiny little cries with new breath of life,
No one foretold future years of such strife.

Very stubborn, strong-willed, and always full sail.
Living life to its fullest, blazing her own trail.
Educated by experience, a stranger to fear;
Walking on faith blind to demons near.

Savor the highs, she's always vowed;
Enjoying the journey of living out loud.
Sampling the world, an adventure to roam;
With God's gift of grace, her heart found a home.

Blessed in love, her best self she'd found;
Charming those near, laughter her favorite sound.
With drive, dreams, and wit, seeming to have it all.
Now hearing the whispers, her health soon will fall.

Her brain slipping downward, her MRI notes;
She's buried in pain and a sea of white coats.
Giving up her goals, her body now weak;
Rare condition they say, new specialists she'll seek.

More scans and tests, questions abound.
Surgery the only hope, no cure to be found.
Her balance so unsteady, her head in a spin;
Aches and pains all over, her energy now thin.

Her health is unfaithful, her body betrays;
A beauty now broken in so many ways.
Grand dreams now futile, her efforts in vain;
A new evil now lingers bringing more pain.

Unable to think clearly, illness her new friend;
Her body the new battlefield, the medications defend.
Time is her warden in this prison full of ache;
She'll live long in her torture, her life it will not take.

Once her drive was so strong, but now it's dwindled low;
Her star then blazing brightly, is now a dimming glow.
A life so full of joy, and with passion for the quest;
She's unable to move forward, for now it's time to rest.

The playground of her world, once welcoming and warm;
Now stealing with shadows, thriving in her harm.
The warriors of disease will battle all life long;
Breaking her defenses, the beasts seem so strong.

Last but not least I really enjoy photography, so here are a few of my favorites.