Felt So Fine

Felt So Fine

Monday, December 17, 2012

One Year

It’s been one year.

One birthday.
One summer vacation.
One first day of school.
One Thanksgiving.

One year ago today I put on my brave face and kissed my son goodbye, then watched as they wheeled him away to the operating room.

To take out his heart.

Fifteen weeks earlier, with a sparkle in his eye and a bounce in his step, Spencer walked up the school steps and into his classroom for his first day of kindergarten.

Four weeks later, our faces etched with worry, we cradled him in our arms as we passed through the doors of the Emergency Room.

“What could be causing this stomach pain?” We asked them. “He just hasn’t been well for days.”

An ambulance ride to the Children’s Hospital two hours away and then the diagnosis.

I was alone when the doctor dropped the bomb that shattered my world, “It’s his heart. Your son is a very, very sick little boy.”

Fifteen long minutes later, Matt arrived and we tried desperately to comprehend what they were telling us but it was just impossible to believe.

“His heart is failing and we don’t know why.”
“He needs a new heart.”
“He might die waiting for a heart.”

No. Those words are impossible. He’s only five years old--the blink of an eye to my mother heart.  Just last week he was riding his bike and so…ALIVE.

But impossible or not, this was real. And this was our life now, so we took up residence in the cardiac ICU of that beloved hospital.

We lived minute to minute. Operations were performed to buy him some time. The Berlin heart, not yet FDA approved, was attached to his dying heart to buy him even more time. 

After weeks of holding our breath, we finally dared to breathe. Doctors and nurses began to smile for the first time.  He was critical, but stable.  No more ECMO. No more ventilator. The Berlin was a miraculous gift of time. Time that we so desperately needed.

Because we were waiting.

Waiting for something that had no schedule. Waiting for something that had no guarantee. Waiting for something—the only thing—that would allow us to take our only son home.

A new heart.

The wait was excruciating. I had to put it out of my mind so as not to lose my mind. Don’t think about when or if, just be grateful for today.

Days became weeks became months. We celebrated Halloween and Thanksgiving in the hospital and now Christmas is coming.

But he’s still with us, so we’ll be grateful for the chance to wait.

The wait became more frightening as his own heart grew closer and closer to its own final beat. We were in a race against time, with no control over the outcome.

What do you pray for in a time like this? Certainly not for the death of a child! Not mine. Not theirs. But we need that heart.

So I pray for peace.

Peace for us while we wait.

And peace for a mother and father who will face the unimaginable grief of losing a child.

Peace for them in that horrible moment when a doctor gently asks, “Have you thought about donating your child’s organs?”

Oh, if they could only see him! Would it make their decision easier?

And still, we wait.

And pray.

And then, the call.

“We’ve found a heart for Spencer!”

Joy and fear! Relief and worry! The longest of long days.

And as they wheeled him away I thought my heart would break.

~ ~ ~

Today is beautiful. It’s finally snowing outside. It will be a white Christmas after all. He’s building a snowman and teasing his sisters and drinking hot chocolate. And smiling.

And he gives me a hug and I think my heart might burst.

One year.

And we have been grateful every day for every beat of his beautiful new heart.

 I love you forever and ever, my little man!

~ ~ ~

Spencer's transplant was one year ago yesterday. 
In honor of this very special anniversary a dear friend Shelly, at La Tejana, asked me if I would be willing to do a guest post on her blog, about Spencer's story. Written above is what I sent her. The link to her blog is here.
She has a wonderful blog and her writing skills are exceeded only by her goodness.  I'm grateful to her for her efforts to educate others on the importance of organ donation.

Monday, December 10, 2012

Counting Down

Last week Spencer's wish granter popped in and surprised him with a gift bag full of goodies: pop tarts, pop, poppers, popcorn and a toy airplane. 
The note says,

"Hi Spencer, We're just 'poppin' in to say that real soon you'll be in the plane and on your way!"

They are so fun and good to him. We're all excited and counting the days 'til our big adventure to Disney World!

Friday, November 30, 2012

Pheasant Fever

Just some fun pictures from this year's pheasant season. Spencer got to go for the first time and Nicole got to carry her own gun this year. Here they are on opening day with their lone rooster. 

The good old Red Ryder...thank goodness he didn't shoot his eye out.

Love him!

This is a couple weeks later--Nicole, with her first bird.

Saturday, November 3, 2012

Halloween 2012

Well, here they are. My little monsters ready for the big day. 

For the first time in several years the school changed their policy and let the kids wear their costumes to school. So it was an all day celebration! 



Paige during her class Halloween party

This was probably Paige's favorite part of the whole day. Getting to hold her new baby cousin, Maiya, while trick-or-treating at Grandma and Grandpa's house.

Princess Claire

Claire at her preschool Halloween party

Paige, Spencer, and Claire ready to trick-or-treat with Dad while I stayed home to hand out candy.

Nicole dressed as Black Widow from The Avengers. 
We couldn't find a wig that we liked and I refused to spray all of that pretty blonde hair red. 


A rare moment of solidarity between sisters

The teens roamed the neighborhood for a while and then ended up in our basement wrestling and eating candy and watching AFV. 
It was a fun day!

Tuesday, October 30, 2012

Then & Now

What a difference a year has made. 
From this:
October 29, 2011
To this:
October 29, 2012

 We had a fun and happy Family Home Evening carving pumpkins last night.


Have a Happy Halloween! 

Monday, October 29, 2012

Gone fishin'

Matt and Spencer had their priorities in order when they took the time a few weeks ago to soak up those last glorious fishing days of Fall. 

Got one!

And another one!

I love, love, love this picture!! 

Friday, October 26, 2012

Paige's Birthday

A very happy, very belated, birthday post for my Paigie-bug! Paige turned 9 in August and it was a great day! Here is a picture of her ginormous cake:

Opening her presents:

She has become quite the easy-baker so we needed to restock her pantry:

Paige is lucky to have a birthday that happens to fall on or around family gatherings every year. This year was no exception. Her birthday was the first day of our big reunion (post pending) so she had 41 grandparents, aunts, uncles, cousins, siblings, and parents to help her celebrate: 

I love you, my beautiful girl!

Thursday, October 25, 2012

Liver Mystery

Spencer had another biopsy last week on Tuesday. This was different than the others because they not only went into his heart for tissue samples* they took some tissue samples from inside his liver as well. The last couple months his liver enzymes have been elevated. His doctors have adjusted meds and experimented with different ones to see if the problem is due to medications. They've also tested him for dozens of infections to see if he's fighting something. A couple of weeks ago at a blood draw they drew TEN vials of blood. So far, all of their investigating has turned up nothing. His cardiologist has brought in a Gastro-Intestinal specialist as well as the Infectious Disease team. They are putting their heads together and trying to figure this out. Thus, the biopsy. I waited to post this because I thought I could put the results of the biopsy on here as well, but nine days later and all they can tell me is that his liver definitely has some inflammation but they are stumped. 

The bright side to all of this is that if something is going on, so far it's all just on paper. He feels great and has plenty of energy for school--with enough left over for hours of silliness afterwards. 

I mean really...does this face look sick to you? :)

*Heart biopsy results--perfect!! No rejection!

Wednesday, October 24, 2012

First Day of School--2012

Nicole-9th grade

Corinne-7th grade

Paige-4th grade

Paige walking up the steps to the school and none to happy with her camera-happy mother.

Spencer at the front door of the school

Spencer-1st grade

Because Spencer had a doctor's appt. on the first day of school he got to school about 40 minutes late so we were able to take him to his music class. Of course I took that to be another photo-op. 

Here is my cute little Clairey-Berry on her first day of preschool. 

She was so excited! 

She loves preschool and her new "pack-pack". 

I'm such a lucky mom--just look at that cute face!