She's With Me

Recently, my friend Heidi introduced me to Collin Raye's song, "She's With Me".  I've been a long-time Collin Raye fan, but hadn't heard this song.  He wrote the song to share his feelings about his sweet little granddaughter, who is featured in the video, below.  I suggest that if you are going to listen and watch, you do so with a box of tissues.  (If you are following through Reader, click here to watch.)

Of course, I couldn't help but think about our Lily as I watched this.  What a beautiful and poignant illustration of what an honor and blessing it is to be the parent (or grandparent, sibling, aunt, uncle, etc.) of an exceptional child.  Though our time on earth with Lily was brief, I am so grateful for the piece of heaven she turned our home into while she was with us.  I'm thankful for the unconditional love that she gave us.  I'm deeply appreciative of the lessons Lily taught us while she was with us, and for the powerful influence her life and her example have had on our family and so many others.

This also calls to mind all of the families who still have their miracle child with them, and continue to struggle every day to meet the needs of those children.  Though frequently rewarding, it is never easy.  Please keep them in your prayers.  If you feel like you can do more than pray, here are some organizations that will accept monetary donations to help children and their families who have special medical needs.  There are many others, but I chose to list the ones that have impacted our family.

Make-a-Wish Foundation

St. Jude's Children's Hospital

Give Kid's the World Village

Despite the teary-eyed post, I wish you much joy as you prepare for Christmas in the coming weeks.  May your celebration of the birth of our Savior bring you closer to Him and to the ones you love!

Oh, the Places I've Been!

Remember that Dr. Seuss book that people like to give graduates?

It's full of nuggets of wisdom, like this:

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

Out there things can happen and frequently do to people as brainy and footsy as you.

And when things start to happen, don’t worry. Don’t stew. Just go right along. 

You’ll start happening too.

Oh! The Places You’ll Go!

As you know, I've been very sentimental this week, due to it being the fifth anniversary of our move to Indiana.  Early this morning, as I loaded the dishwasher and tried to clean up my kitchen--which was a complete disaster due to three batches of homemade bread and a batch of bar cookies, yesterday, and don't even get me started on what happened with my oven--I was thinking deep thoughts.  About Dr. Seuss's words and my own life....and how I ended up in suburban Indiana, instead of a remote sheep ranch in Montana. 

I'm going to share, because I have a blog.

Sometime between the ages of 15 and 20, I came up with a life plan.  It went something like this:

1.  Go to college.  Graduate.  (The course of study and degree were always different, depending on my interests at any given moment, but usually it was something to do with music.  Or theater.  Or musical theater.)

2.  Travel the world.  Learn several languages.  (It was unclear whether I would be doing this as an opera singer, a missionary, or tourist.)

3.  Meet a wealthy rancher who shared my passion for music, theater, adventure, and travel.  Fall in love with him.  Marry him.  (I'm totally not kidding.  A rancher.  Where did this come from?  One childhood trip to Montana to visit my brother, who was working on a sheep ranch one summer during college, and quite possibly the very tame Harlequin novels my mother and grandmother loved reading about romance on New Zealand sheep ranches.  There, I admit it.)

4.  Move to the rancher's remote ranch, which was going to be in Montana, Wyoming, Idaho, Colorado, South Dakota, or....New Zealand.

5.  Become a really good cook, because I'd have to feed all the ranch hands.  And get really good at riding horses, because that's what rancher's wives do, right?  Ride a horse all over the ranch to rendezvous with her ruggedly handsome rancher husband......

6.  Have lots of babies, there on the ranch.  Approximately 6-8.  Homeschool all of them, because our ranch would be so remote.  (I had several handy lists of names.  One list was of names that all started with the letter B.  Another list was of names that were inspired by L.M. Montgomery's books; the twins were Matthew and Marilla.)

Have you heard of Ree Drummond, the Pioneer Woman?  Call the police!  I think she stole my life!

I kid, I kid. (But still....it's kind of suspicious, don't you think?)


Well, I got off to a good start with my list.  Thank goodness that the first thing on my list was "Go to college," right?  (And thank goodness my parents never took me to Disney World, because if I'd had any idea I could make money dressing up like Ariel or Tinkerbell, or singing and dancing in the streets, I might not have made it to college.  Whew, that was a close one!)

1.  I went to college.  I started out as a Music Therapy major.  I switched to Vocal Performance.  Then I switched to Musical Theater.  Then I changed my major to Interior Design.  At this point, something dawned on me: roughly 98% of the men I met in those majors were not interested in me.....or any other woman, for that matter.  While the plan was to graduate and see the world before I got married, I still wanted to have a social life.  So I changed majors again.  To instructional technology.  (Whaaaaat?)  That was short-lived.  Then there was a brief stint in elementary education.  By this time, I had spent more than two years in college and gone through six majors.  I decided to finish college as quickly as possible and move on to traveling the world and learning several languages.  So, I majored in English.  

Because writing long essays has never been a problem for me. 


Also because by that time I'd developed a strategy for fulfilling step #2 in my life plan, "Travel the World."  

I was going to become an English teacher and teach for the Department of Defense at overseas military bases.  Which would make it affordable to see the world.  Also, my wise father thought his flighty youngest daughter might be improved by some time as a missionary, so, with his encouragement, I was aiming for that, too.

Did I mention that I attended a university that was known for its agricultural school?  You would think I might have actually met a rancher, there.  Au contraire, my friends, au contraire.  (See?  I learned a little French.  About that much.)


I did meet two nice young men that grew up on a ranch, but they were majoring in business and physical education.  And, they were also the Bionic Man's roommates.


Bringing us--somewhat prematurely--to step number three:


3.  Meet a wealthy rancher an aerospace engineer who shared my passion for adventure and travel (paragliding, anyone?)--and tolerated my passion for music and theater.  Fall in love with him.  (No problem....somehow the lack of a ranch was not not a deterrant.)  Marry him.  I did!  

And, by the way, check out the length of that veil.....

By this time, I'd really got off track from my list.  I attempted to get back on track.


First, I graduated from college.  Part of #1.


1.  Go to college.  Graduate.

I'd like to take this opportunity to assure you that I was not fifteen when I graduated from college.  Despite the photographic evidence otherwise.....I was actually twenty-two. 


Then, I set off to see the world, with my new husband, the Bionic man.  This fulfilled step #2 and part of step #4:

2.  See the world and learn several languages German.

4.  Move to the rancher's remote ranch wherever the aerospace engineer could get a job.  Which ended up being the East Coast and Europe, for a few years.

As you can see, I was off to a good start with #6:

6.  Have lots of babies.  Even though none were born on a remote ranch, I did manage to have three prenatal appointments in Munich, Germany.  Impressive, eh?  And I did have three children in four years.  As I said, a good start!

Um....I'm still working on #5.


5.  Become a really good cook.  At this point, I'm willing to just let the Pioneer Woman handle all that.  Ranch hands on a remote ranch in Montana or Colorado should be very grateful that I fell in love with an aerospace engineer, instead of their boss.  Very grateful, indeed.


Somehow, I really never got past the list of baby names in my life plan.  And four babies to name has been enough.

Some of the places I've been definitely never got listed with my other youthful aspirations.  Because, when a seventeen-year-old girl makes a list of her life plans, she just can't imagine some of the places she'll go nor how she'll get there.  Case in point:  Indiana was not on my list.  Hospitals weren't on my list.  Neither were cemeteries. 

And....there’s a very good chance 

you’ll meet things that scare you right out of your pants. 

There are some, down the road between hither and yon, 

that can scare you so much you won’t want to go on.

But on you will go though the weather be foul. 

On you will go though your enemies prowl. 

On you will go though the Hakken-Kraks howl. 

Onward up many a frightening creek, 

though your arms may get sore and your sneakers may leak. 

On and on you will hike. 

And I know you’ll hike far and face up to your problems whatever they are.

So....where am I, now?  I'm glad, for one thing, that I don't have to cook for ranch hands or homeschool my kids or smell cows all day.  And I'm blessed to be the daughter of a Heavenly Father who knew that I could handle a different variety of experiences than the ones I aspired to as a naive teenager.  I'm grateful that He's sent me to places I never dreamed of, let me learn to love so many wonderful people that I met along the way, and given me so many opportunities to grow and stretch in ways I never imagined. 

And will you succeed?
Yes! You will, indeed!
(98 and ¾ percent guaranteed.)

Kid, you’ll move mountains!
.....you’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!

 -Dr. Seuss

For this journey to great heights is not any ordinary journey....And how shall we scale this mountain? One faithful step at a time." - Elaine L. Jack

Love: 400 Extra-Ordinary Days

At this time, three years ago, I was pregnant.  Expecting our fourth child.  We were thrilled to be having another baby.  We love babies, at our house.

During the twentieth week of pregnancy, my husband went with me to the obstetrician's office.  It was ultrasound day.  My husband was supposed to be on a business trip, but it was cancelled early that morning.  That was our first miracle.

The ultrasound showed that we were going to have a baby girl.

The doctor came in.  We smiled at her, and she didn't smile back.  Instead, she began to gently explain to us all the problems that our sweet baby's developing body already had.  It was a long list.  Two vessel umbilical cord.  Hydrocephalus.  Hypo-plastic left heart syndrome.  A possible fatal chromosome abnormality.

My husband gripped my hand.  We tried to ask questions.  We cried.  We already had one child with a heart defect--we had already experienced long days in the hospital and an uncertain future for one baby.  We had been confident that this baby--our last--was to be our miracle baby.  

We named our baby Lily, for the lilies of the field that Christ used so eloquently to teach his followers of our Father's love for His children.

We prayed.  We tried to make difficult decisions without the aid of concrete evidence and information.  We moved forward in faith, sometimes not sure if faith was enough.

Our Lily was born alive, another miracle.  She was tiny and perfect, without the facial deformities or extra fingers or toes or enlarged head that we had been prepared to love along with her.

I was able to see her, pink and soft and wiggly, before she was taken to the NICU.  In the NICU, she grew, her little body preparing for the first of three surgeries her heart needed to function.

For three weeks, we loved and fed and held our baby in the NICU, not knowing if her sweet, tiny body would be able to handle the complex surgery.  

It did.  Lily spent many days in the hospital.  What would be unusual for some families became the norm for us.  Picnics on the floor of a hospital room.  Walks through the halls with IV pump and monitor in tow.  Saying goodbye to one child so I could go home to do laundry for three others.

Things that others might take for granted, we celebrated.  Like Lily's first trip outside.  Wires, and tubes, and all.

Two months after her birth, we brought Lily home.  Another miracle.  One we hadn't dared to hope for.

The following days were not ever easy.  Caring for Lily at home, as joyful as it was, was also complex and exhausting.  She had frequent trips to doctors' offices, more surgery and more procedures, more hospital stays.  I learned to insert a feeding tube and carry a baby in a carseat, a preschooler, and an oxygen tank across a snowy parking lot and through the grocery store.  

We were so grateful for the people who stepped in to help us.  Family, friends, neighbors, doctors, nurses, therapists, strangers...all of them became part of the fabric of each miracle.

Lily's siblings could have been envious or resentful of all the time that it took their parents to care for their youngest sister.  But they weren't.  Their unconditional, unwavering love for Lily was nothing short of miraculous.  And they way she returned our love so enthusiastically was yet another miracle.

 

We had been told, when our doctors first diagnosed Lily's condition, that we should be prepared that our baby girl might not survive the pregnancy.  There were so many unknowns, so many steps into the dark. I realized, as my baby grew and kicked inside me, that each day she was with us was a miracle.  

There may be some skeptics in the world that say miracles have ceased. 

They have not.  I've seen 400.

Lily lived for 400 days.  

Many of those days were difficult, for her more than anyone.  

Many of those days were spent in a hospital.  But many of them weren't.  Despite the 200+ days Lily spent with her friends at the hospital, she managed to be at home for Halloween, Thanksgiving, Christmas, New Year's Eve, St. Patrick's Day, Easter, Memorial Day, and the Fourth of July.  She was at home for the birthdays of each of her family members.  She went on a family vacation.  She spent Valentine's Day and her own first birthday at--appropriately--the Heart Center.

More days have passed, now, since Lily returned to her Heavenly Father, than the 400 she spent on the earth.  Some days have been really hard.  We miss having Lily in our home and in our arms.  But we are convinced that we will be with Lily again one day, and we've learned that joy can still be present in our lives.  

I'm so grateful for each of the 400 extra-ordinary days that we spent with Lily.  

I'm also grateful for each day since.  Ordinary days that become extra-ordinary when I look at how far we've come, how far we have to go; how much joy we've tasted, and all the joy we have yet to taste; how much love we've felt and how much love we have yet to give.

This week is Congenital Heart Defect (CHD) Awareness Week.

This post has been linked to Tuesdays Unwrapped at Chatting with the Sky.