COTA FOR KATIE

Katie, my great niece, was born in 2006 with several rare heart defects resulting in the right side of her heart not working.  This required intensive medical care just minutes after her birth.


Katie after her Glen surgery @ 3mos.

















Her specific congenital defect is Ebstein's Anomaly, a pulmonary atresia and left ventricle non-compaction (medically speaking: Hypoplastic Right Heart Syndrome (HRHS), one of the most severe forms of congenital heart defects).  

 

Overall, Katie has undergone 10 major and minor surgeries (recently received 840 'courage beads' (check this out if you've never heard of this group...they were on necklaces/bracelets representing each invasive procedure success.)

Her critical yet successful surgeries helped redirect blood flow in Katie's heart so she could continue to grow, and each phased surgery gave Katie the chance for a normal, happy life for as long as possible.

 

But, as of July 3, her doctors determined there are no other medical options to prolong her life, so Katie has been placed on the heart transplant list as a status 1B outpatient.  The heart transplant team will be reaching them via pager as soon as a 'new heart' becomes available...any hour of the day.

 

She's living life as she knows best, inspiringly smiling every day and uplifting us with her quick ability to laugh while reading, drawing, dancing and dressing like many different princesses!  We've been celebrating her starting first grade this school year...a large milestone for her and her family.



MoMo and Katie

Katie's grandmother, Momo, is my sister, Connie.  She and I are working with several local friends of the family in preparing for various fund raisers which will help them as they go supplement their costs (transplants are costly as are on-going medicines/treatments that will be required to keep her body from rejecting the heart.

The family is being helped through COTA (Children's Organ Transplant Association)...and a very close friend is heading up all the fund raising planning, volunteers and financial details.  What a great friend she is!

I recently participated in my first COTA fund raiser...a canvas painting event...38 people came to paint and support Katie!


my KatieCanvas

 

Katie's right thumbprint is on my heart...she signed & handprinted the back  ;)

Canvasses Completed!

 

I'll be posting more about other events but wanted to share the background now. 

(I'm hoping to have a sidebar button that will go directly to the website where donations can be made to COTA and then properly funneled to the family on an as-needed basis (they have a tax id).  The website is shown at the bottom of the first collage above).


If you can join us to raise funds in some small way, that would be awesome. 

But more importantly, please add Katie (mom, Kerri; daddy, James; little brother, 2yo, Ryan) to your prayers.  Our Lord hears the prayers of the righteous and He's blessed her with many miracles along her path.

Blessings,

SPIRITUAL SUNDAYS & MEMORIAL WEEKEND

Joining Charlotte for SPIRITUAL SUNDAYS' MEMORIAL WEEKEND EDITION...

Who are your heroes?  

I have a couple in my life at this particular time...

Each for a very different reason

Each are my "NOW" heroes.

The first is a family member serving overseas NOW.

My stomach gets in knots pondering what or who he may be enduring today...

I can't imagine his mother's feelings. 

When a family member is serving, your views become much more tender.

His second tour came quickly (seems like yesterday he explained how he had closed his head wound with super glue to continue his mission).  

He's my NOW hero for serving our country, 

and fighting for oppressed peoples' freedom. 

...living bravely his NOW.

My second "NOW" hero is our 2 1/2yo great niece...

enduring many heart surgeries in her brief time on this earth.

There some times are bad days, physically

yet she'll still have a smile on her face when you enter the room.

She has a love of life, people and time that is so "IN-THE-MOMENT"

God talks to us through her as she walks her tender life road in her NOW.

Dear Jesus, 

Make yourself known in a powerful way while he is serving our Nation's cause through his dedication and convictions.

Keep him safe in his goings and comings, as well as his decisions.

Let him feel the comfort of our prayers and Your Holy Spirit holding him.

Continue to preveniently walk ahead of my niece and her family.  

Grow her little body and her mind to KNOW the plans you have for her.

May she be a witness to what You have done in her life.

Happy Memorial Day, everyone.

I pray you have some NOW heroes in your life, too.

p.s.  if you're looking for a giveaway:

Grammy Girlfriend  will be having 10

She'll be drawing on Wednesday, May 27, in honor of Parker's 10th birthday!

10 winners with some great prizes

For every comment left in the month of May, your name will be included in the drawing. The 10th person drawn receives the GRAND PRIZE (box of Disney goodies).

Anyone sharing about the giveaway on their blog will get their name entered 10 EXTRA times. 

Be sure and leave Grammy a comment letting her know you mentioned the giveaway.

BUT I WANT TO GO....& "PHAV PHOTO PHRIDAY!"

TO PARTICIPATE IN CARRIE'S MY "PHAV'RITE PHOTO', THIS IS MY PHAV SO FAR THIS MONTH...IT WAS TAKEN AT THE AIRPORT WITH MY CELLPHONE (apologies for the blurriness but my camera's battery died right at the moment i needed it--well of course it did...i sound like Kate!)

I'VE NEVER PUT MY DD ON AN AIRPLANE WITHOUT ME...THAT IS--UNTIL RECENTLY. (I was being pushed out of my comfort zone...yet again!)

YES, THERE WERE ADULTS CHAPERONING...(but they were not ME. I wanted to go and be THERE--I cried out in my heart and he answered..."Teach her to be on her own little by little; with other supervision, not your supervision").

THERE WOULD BE LOTS OF FUN (AND SINGING) ON THEIR TIMELINE IN THE "CITY THAT NEVER SLEEPS"...(which really wasn't a concern b/c she's a big sleeper and very demonstrative about being quiet so she can sleep).

MY MOM'S LIST EARLIER IN THE WEEK HAD BEEN CLICKING ON AND OFF IN MY HEAD AS I CHECKED AND RE-CHECKED HER "TAKING" LIST. THE NIGHT BEFORE SHE LEFT I FILLED THE AIR WITH MY " WELL, WHAT IF..., AND WHAT IF, AND ...OK, HOW ABOUT..." THOSE PHRASES ROLLED OFF MY TONGUE (b/c my tongue could run, as J. K. Rowling said, "could run faster than SEVERUS SNAPE confronted with shampoo!") "MOM, I'VE GOT EVERYTHING I NEED...I THINK." (it's the "I THINK" whirling around in my head once she was gone that bothered me...I prayed she hadn't left something important.)

YES, NOT BEING ONE OF THE CHAPERONES MADE LETTING GO HARDER FOR ME (not her though, she loved claiming independence without my being by her side...He whispered, "Yes, little by little, that was good". Immediately I had moaned, "But I want to be theeeeeerrrre, with her". [could you see me trying to stomp my foot as I swayed from side to side?]).

DD WAS SO DUTIFUL AND CARING...SHE TEXTED A MESSAGE ONCE LANDED AT LAGUARDIA...(and I hadn't even reminded her to do so! : ) : ) which was a 2-smiler for me!] )

HIS SCRIPTURES, THOSE GOD-BREATHED, WONDERFULLY HOLY SCRIPTURES SAVED ME AGAIN...COVERED ME, PROTECTED ME WHEN I WAS IN "THAT PLACE" OF "NOT KNOWING" HOW THINGS EXACTLY WOULD BE GOING. NOT KNOWING MINUTE-BY-MINUTE WHERE SHE WAS AND WHAT SHE WAS DOING (His Word washed new breath and understanding over me with his promise).

HIS PROMISE STILL STANDS...HE TRAVELED WITH HER--HIS PREVENIENCE HAD ALREADY RUN BEFORE HER. IT GOES BEFORE EACH WHO BELIEVES ON HIM.
HE ANSWERED WHEN I CALLED, SHOWING UNEXPECTED BLESSINGS IN MY LIFE (I got wonderful joy seeing the look on her face as she eagerly repeated "I'm really going to New York!", while clapping her hands and bouncing up and down in the uncomfortable chair of the airport atrium. Her excitement and expectancy of a great trip and new sights were contagious and made me giggle with her...but, I wasn't as cute bouncing up and down in my chair! I know, sorry for the visual)

LIKE I MENTIONED EARLIER, THIS WAS ANOTHER COMFORT ZONE "STRETCHED". ONE STRETCHED LIKE A SWIMMING CAP (a little uncomfortable in the beginning but serving a purpose... as He provided for and protected me). LITTLE BY LITTLE, HER WORLD OF UNDERSTANDING WAS STRETCHED AND EXPANDED DURING THE TRIP(maybe a little uncomfortable for her at the beginning but serving a purpose as He protected her along the way).

GRADUALLY I'LL CONTINUE TO BECOME MORE OPEN TO THE REALITY OF HER ADULTHOOD; HER WORLD AWAY FROM US ONE DAY. HIS PROMISE FROM ISAIAH IS AS REAL FOR ME AS IT WAS FOR THE ISRAELITES 2000 YEARS AGO. I STAND ON HIS PROMISE...IT IS FOR HER, TOO...AND FOR THE TWINKLES (who are not even in her eyes yet).

WHEN HAVE YOU HAD TO RELEASE SOMETHING

WHILE STRUGGLING WITH LETTING IT GO?

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Hopeful Friday...cleaning up and putting away

House in the Roses is hosting Hopeful Friday...so here's my contribution...if you'd like to participate, go here: http://houseinroses.blogspot.com/2009/01/hopeful-friday-dream.html

Today was the day...finally deciding to put away the majority of the Christmas ornaments and decorations throughout the house. Having been so late in getting my decorations out this year, I intentionally left them out to enjoy them a little longer. Pulling everything out and storing items that sit out most of the year ends up taking about a day or two.

Memories flood over me as I pull out each piece, and again as I wrap them carefully and put them back in their safe place...they each have a special place, or box, they fit in...then, they are stacked in the basement away from any harm of flying objects or gym equipment. (DH has a golf tee with plastic, holey plastic balls that sometimes go places they're not intended to go...)

Sadness sometimes takes me over when I'm tucking everything back into their containers...why can't we have Christmas all year? Then, I ponder on the ying and yang, the good and bad, the valleys and the mountaintops. Even scriptures speaks to there being a specific time for every purpose...(Ecclesiastes 3:1 "For everything there is a season, a time for every activity under heaven.")

This section of Ecclesiastes is speaking of human labors...and today my labor was hard and tiring, hot flashes and all, intensified as I scurried up and down the steps, digging in and out of boxes, wrapping and tucking things in their proper places. Once I completed these chores, I vacuumed throughout the house and now am ENJOYING the fruits of my labor. It seems almost empty in the house without my nativities, angels and pictures with Santa.

The writer notes beginning at Eccles. 3:9 "What do people really get for all their hard work? ... He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end...there is nothing better than to be happy and enjoy ourselves as long as we can.,,people should eat and drink and enjoy the fruits of their labor, for these are gifts from God."

Our fruits from our labor are our gifts from God...and the eternity that He planted in our hearts! What labor has been tough for you this past week?

Be hopeful and enjoy looking back on the fruits of that labor...