HOPE'S ANNIVERSARY

Today is October 30.

October 30th a year ago, was unequivocally the hardest day I have ever experienced in my 32 years of life.
It was the day Hope graduated mortal life.
Some people have been calling it her anniversary today, and I like that.

At 9:30 this morning I heard a knock on the door and dear Emma, a friend in our ward, came with comforting, kind words and a potted pink Gerbera daisy plant.

Later I went over to Carina's, who lifted my spirits with her cheer and life-loving children.

Two weeks ago, one of the sisters in our ward handed me a card.  I opened it at home.  It said:

HOPE'S STORY, PART LAST: "THE-END-BUT-NOT-REALLY"

I'm going to end Hope's Story with my two cents.

This is what I think:  The story is not the real story.

Let me explain.

There are things that happen to people and everyone around them asks, "Why did that happen to them? Why do they have to suffer?  Why do bad things have to happen to good people?"

And this is what I would say:  What people on the outside see, tells so little of the story.  Because most of the story happens inside.

HOPE'S STORY, PART 17: "A CELEBRATION OF LIFE"

November 2, 2011 is a day I will never forget.  In a good way.
It was Hope's "Celebration of Life."
It was the perfect day for a funeral.  It was a sun-shiny day, and warm for November.
I got up early, finalized Hope's eulogy and tribute, wrote my talk, and then Tyler and I went to Fedex to make copies of the program.  Here is what it looked like:


We decided to do a viewing and funeral after all, and I am so happy we did.  It was a precious experience.  That 'celebration' is a time I love to look back on and remember and talk about.

HOPE'S STORY, PART 16: "DEAR HOPE, HAPPY BIRTHDAY"

Dear Hope,
Today is your birthday.
I have been thinking about you all day.
I have been thinking about what you might be doing now.
Right now I'm thinking about what we would be doing if you were here.
You probably know by now that I am not a great success in the kitchen, but I would have found the perfect recipe and made you a purple butterfly cake.  The more frosting the better.  Then I would have lined the floor with newspaper, put you in nothing but your diaper, and put you in your high chair.  Your cake would have one candle in it and I think I would have Daddy blow it out for you after we sang you "Happy Birthday".  Grandma and Grandpa would be on Skype and so would Mimi and Papere.  Then I would have placed the cake in front of you and let you go to town.
I would have taken lots of pictures and put them on Facebook and on our blog.

HOPE'S STORY, PART 15: "I PRAY THE LORD MY SOUL TO TAKE"

The last entries from my mom's 'journal':

30 October, 2011

Since last night it has been hard breathing for Hope.


31 October, 2011

Hope got her wings last night.

HOPE'S STORY, PART 14: "LAST JOURNAL"

From my mom's 'journal':

28 October, 2011

Hope has been very quiet today, so far.  Most of the morning Caeli has been on the couch telling Hope stories.  Here is a pic:

They are napping there now.  Caeli and Tyler are so loving it is wonderful to see.

HOPE'S STORY, PART 13: "'DEAR DIARY' CONTINUED"

23 Oct, 2011 continued:

"A week or so ago, I was having a rough night, filled with discouragement, thinking I wasn't strong enough to watch this, to endure faithfully, and for the first time in my life, I found myself becoming angry at Heavenly Father.

My thought was this:  from the moment we found out we were pregnant, we began praying for our baby--that the child would have learned the things necessary to be faithful and righteous and that the child would develop properly.  Even after we found out Hope had NOT developed properly I was ok with the Lord--it was not what I wanted, but I wasn't angry.  I had also never asked in my prayers for Hope to be healed, because I never felt that that was the right thing to pray for.
On this night last week I was angry with the Lord, because I HAD asked that Hope would be comfortable and not have pain and this one little prayer--after not asking for all the others--had not been answered.
And I couldn't bear it.
I told Tyler why I was angry through my sobs.  I can't remember what he said, but then I remember being angry at HIM because he was so much calmer than me."

HOPE'S STORY, PART 12: "DEAR DIARY"

23 Oct, 2011

Today Hope turned one month old.  What a little fighter she is.  Or maybe she is still soaking up the love that Tyler and I and everyone around her does their best to show.
Today was a good day for her.  We didn't have to give her any of the oxycodone.  She was relatively peaceful.  Tyler left at around 8am to go set up chairs for Stake/Regional Conference (church meeting) and came home soon after.

HOPE'S STORY, PART 11: "IF I SHOULD DIE BEFORE I WAKE"

The closing entries from my mom's journal:

October 26, 2011:  Hope's cold is gone, if it was a cold.  She was peaceful most of the day today.

October 27, 2011:  Another rough night for Hope last night.  She was breathing with difficulty most of the night.  When Hannah and I arrived in the morning she was still laboring to breathe.  At times her tongue would pull and her jaw would drop down to pull in air.  Caeli commented that she looks more blue today.  They are keeping eye drops in her eyes to keep them hydrated.

HOPE'S STORY, PART 9: "SOMETHING PERSONAL"

This is the first entry I was able to write in my journal while we had Hope with us.

***

21 Oct 2011

Today Hope turned four weeks old.  

No one thought she would make it this far.

If she lives two more days she will be one month old.

For her four week birthday we went over to Uncle John and Aunt Celeste's with some pies, ice cream and popcorn and visited...

This is the only picture we have from her one month birthday.  
You can see her birthday table cloth on the table.

HOPE'S STORY, PART 8: "I PRAY THE LORD MY SOUL TO KEEP"

From my mom's 'journal':

October 18, 2011:
Yesterday we got to spend another sacred day in the presence of a divine being.  In the morning, Tyler's parents visited with sweet Hope, so I was able to get some university work done.
Just after noon, Caeli and Tyler picked me up to go to Temple Square.  First we walked around the temple grounds soaking in the wonderful spirit inspired by the temple.  An older sister missionary approached us to ask about Hope.  When she saw how tiny Hope was, she asked her age and wondered if she was a premie.  (That is what all the people in Temple Square thought when they saw her.  Hope probably weighs 4 pounds or less now.)  When Caeli told her that Hope was sick, the sister suddenly realized that she was in the presence of a sacred spirit.  Her eyes filled with tears of joy as she expressed her awe.

HOPE'S STORY, PART 7: "OCTOBER: THE MIDDLE"

From my mom's account...

October 15, 2011:
Yesterday Hope was three weeks old...Hope had more painful-looking scowls yesterday, so they gave her more oxycodone.  Caeli and Tyler took us out to eat at a cheesesteak place and it was really good.  We got the food as take-out and ate it in the car together so that Hope did not need to go in the restaurant.
This morning we took the kids to Gardner Village and then back to John and Celeste's (Caeli's aunt and uncle) to meet Tyler, Caeli and Hope.  We sat outside on the patio while John, Tyler and Asa (Caeli's nephew) stacked wood and then played like crazy in the yard.  Hope slept peacefully on Caeli's lab thrilling us all with her smiles and her gaze when she opened her eyes.
Tyler changes her diaper and dresses her now because Caeli cannot bear to see her...body.  Tyler is so wonderful with Hope and she gives him the biggest smiles.  Hope is starting to look bluish around her eyes and nose and her hand movements are less and slower.  She did lightly grasp my finger with her hand a couple times tonight.  She has very long, dainty fingers.  Her eyes are the most beautiful almond-shaped eyes that look right at her Mom or Dad and today she looked right at Asa.  It is a sacred experience to be in her presence.  We love you, Hope!

HOPE'S STORY, PART 6: "A VIDEO AND A SERIOUS COMMANDMENT"

The following journal entries from my mom made me reconsider posting Hope's story.

My fear is that, after reading the following entries, you might leave either 1) depressed 2) miserable 3) glum or 4) despondent.  The reason?  The following entries (and those that will be coming) have a way of being like a field of thorny flowers...there is a lot of "Pretty", but there is also a lot of "Ow."
I love you people and I understand your hearts are sacred places and I want to tread lightly.  And so I have censored some of the story, and altered or shortened some descriptions.  If you choose to keep reading, I COMMAND you to hear the Good, the Love, the Learning, the Humbling, the Joy, the I'll-Never-Forget-Because-I-Don't-Want-Tos in the memories as well.

COME WHAT MAY, AND LOVE IT

A wise man once said, "COME WHAT MAY, AND LOVE IT."
Actually it was his mom who said it.
And the wise man was Joseph B. Wirthlin, the grandfather of one of my dear missionary companions (I love you Katie Cannon Miller!) and someone I believe to be an apostle.  (Yes, Mormons believe that there are twelve modern day apostles today, just like in the Bible.  Think that's a little weird?  Maybe I'll talk about it later here.)

HOPE'S STORY, PART 4: "OCTOBER: THE BEGINNING"

From my mom's update:  Oct 2, 2011

"Hope never ate or stirred on Friday. Rather than put her in her little bed that night, Caeli sat up all night coaxing her to eat and just holding her. Several times she made a stretching kind of movement, stiffening her legs, opening her mouth, and arching her back that worried Caeli. Saturday morning she ate again for about 20 minutes and she began to open her eyes again. We brought Hael from the airport straight to see Hope and found the three of them outside in seemingly good spirits. Tyler was rocking her in his arms and talking to her and Caeli was in their garden feeding corn to the lamas.

Pepere (French for grandpa) and Hope

HOPE'S STORY, PART 3: "PHOTOS FROM THE FIRST WEEK"

Here are some other pictures from Hope's first week of life.

She would always hold on to our finger if we put it near her.  I read somewhere that that's how babies say "thank you for taking care of me."

The first few days we had her, we were still getting used to how to hold her and move her without bumping her encephalocele.  At night time we would do skin to skin, then bundle her up in blankets.  One morning we unwrapped her to find her in this position, ready to fight.  I think she wanted to arm wrestle Daddy.

HOPE'S STORY, PART 2: "IT BEGINS..."

The five weeks we had Hope with us, I only wrote in my journal a few times.
I felt it was important that I write while Hope was with us, while I was feeling all the things I did.  But it was also hard because I didn't ever want to let her go.
I have a total of three entries, written while my sweet Mom held Hope right next to me.
Because I didn't write that much, I am grateful that my mom kept a running 'journal'--actually a group on Facebook that she would update almost every day.
The next few posts will be from the chain of updates from my mom, mixed with excerpts from my journal, and pictures of Hope.
There are parts of this story that are hard, but I hope that what you leave with is an assurance
that there is still light when all seems dark, that very hard times can be some of the most empowering times in life, and that any two people can overcome anything, if one of them is the Lord.

OUR LITTLE STRAWBERRY

It's been nine months and four days since Hope got her angel wings.

Here are some of my favorite pictures from the first night of her life...

FIRST FAMILY PICTURE

HOPE'S STORY, PART 1: "HOPE FROM HEAVEN"

There are days that shake and shatter everything familiar and planned and routine.

Last Monday, we were going through the regular adjustments of first-time soon-to-be parents. It sounded something like this:

"TYLER! HELP ME WITH MY SOCKS! MY FEET ARE TOO FAR AWAY!"

and

"CAELI! WE WILL NOT BUY ANY MORE FACELESS WILLOW TREE FIGURINES...WE NEED TO SAVE FOR A BABY!"

Despite our pre-baby anxieties, we couldn't wait to welcome a little stranger into our family. I had read a quote on a favorite blog that said it best:

"A baby will make love stronger, days shorter, nights longer, bank balance smaller, home happier, clothes shabbier, the past forgotten, and the future worth living for."

We tried to make a bet about the gender (If Tyler lost, he was going to have to start road cycling with STRETCHY PANTS, and if I lost, I would have to drive a mini-van someday). Only the bet didn't work cause both of us thought it was going to be a boy.

Tyler's family history didn't include a recipe for girls.