The Cure for the Common Cold

As I mentioned the other day, I discovered the cure for the common cold on a beach in Destin, Florida, last week.  We spent most of our spring break there, and it was sooooo nice to get away from the Midwestern chill for a few days.  

Here are some of the pics from our trip.  I didn't take along my shiny, new camera for this trip, because I was a little nervous about sand and water.  Instead, Bionic Man brought along his trusty (NOT!  SO NOT!) waterproof camera.  You know how I feel about that camera.  I let Bionic Man take most of the pictures, this time, because of my grudge with his camera.  So, enjoy these pics in all of their blue-date-in-the-corner glory.  And remember, Bionic Man mostly takes pictures of feats of engineering and nature, so any humans included are lucky to be there.

Speaking of feats of engineering, our first stop was at the U.S. Space and Rocket Center in Huntsville, Alabama.

Lost and Found

Lost: simple, thick wedding/anniversary band.  Given to me on our 10th wedding anniversary by the Bionic Man.  It is tungsten, which means it is shiny, almost black, and extremely cool.  Tungsten is the strongest metal known to man, which means it doesn't scratch.  Perfect anniversary gift.  Discovered it was missing at a rest stop in Franklin, Tennessee.  Don't remember taking it off.  (I never take it off!)  I'm distraught.  Praying I will find it in my luggage.

Found:  the sweater I didn't think I had packed.  In the luggage.  There is hope for the ring, isn't there?

Lost:  the horrible chest cold I had when we left on our spring break vacation.  It is almost completely gone, poof!

Found:  the cure for the common cold!  The medicinal properties of lying on a beach have not been sufficiently studied.  I tell you, all it took was a day lying in the warm sun on a Florida beach for me to feel like a new woman.  Stuffy nose and cough, gone.  {snaps fingers}  Like that!  Next time I get sick, I'm ditching the Mucinex and going to the beach, instead.

About Ever After

{Contented Sigh.}

Well, it's just Hunter the Dog and I here at home today.  Just got the last two family members out the door for the day.  In fact, those same two were the ones lolling on the couches yesterday, looking pitiful.  Today, they left the house with bounce in their steps and PB&J in their lunch bags.  Bionic Man looks practically unscathed, unless you take a really good look at the back of his scalp and see the bump and the small cut.  And I was able to get every last drop of blood off the vintage Pottery Barn bedding that cushioned Bionic Man's landing after he conked his head on the bunkbed, thank you very much.

About that.....(Bionic Man's injury, not the vintage Pottery Barn or the bunkbed).....it gave me much cause for reflection.

I Have no Formula for Winning the Race

Perseverance is not a long race; it is many short races one after another.  ~Walter Elliott

Last week, Superkid and I spent a day visiting with doctors.  Superkid had three specialists that we needed to have follow-up visits with, and somehow I was able to fit all three appointments into the same day.  It was a long day for both of us, shuttling between two downtown clinics at two different hospitals, with a couple of loooong waits in various waiting rooms.  No tests--which was nice--but a long day, nevertheless.  

Our follow-ups were with immunology, neurology, and genetics/metabolism.  Immunology was completely unproductive in that the battery of tests they had done provided no answers to why Superkid gets pneumonia so frequently, but productive in that the tests did show that Superkid has a healthy immune system, so we can cross immunology off the list of specialties that follow her.  The neurologist had some additional tricks up her sleeve to help combat Superkid's migraines, and I feel like we're seeing some improvement with those.  And genetics/metabolism was, like always, a full semester of advanced bio-chemistry fit into a single hour: extremely intense and very educational.

Can I just tell you that I am deeply grateful for Dr. Hainline, our metabolic specialist?  The man is my hero.  He never fails to have answers for problems with Superkid that have troubled me for years.  Dr. Hainline's answers don't always make the problems easier to deal with, but they give me something to hang on to, something to use, and sometimes even something to blame.  I am absolutely certain that one of the greater purposes of our Lily's brief life was to introduce us to Dr. Hainline.  

Case in point:  the immunologist we met with earlier that day was not exactly sensitive or sympathetic.  Also, I'm pretty certain he wasn't big on reading patient charts before walking into exam rooms, either.  His use of the phrases, "We've just wasted $2500 of lab work to prove to you your child is normal" and, "Go home and be thankful your child is healthy," were proof of that.  

After a very different meeting with Dr. Hainline, in which he had answers to all of my concerns, I drove away in my mini-van and cried.  I knew, without a doubt, that had it not been for Lily, who introduced us to Dr. Hainline, that I would be taking Superkid to specialist after specialist, looking for answers, and getting both sympathetic and unsympathetic responses that amounted to, "We don't know."

It overwhelms me.  Not just the recognition of how Lily's time with our family continues to have meaning and impact.  But also the recognition of how much love and sacrifice must have gone into Lily's decision to come to earth in such an imperfect body.

I need to take a deep breath and go get some tissues.  I'll be right back.

Okay.  So, I'm gradually learning more about the implications of metabolic disorders, particularly mitochondrial disease, which is what they suspect Superkid has in a mild form. I'm finding it much more difficult to educate myself about mitochondrial disease than it was to educate myself about congenital heart disease--for one thing, mitochondrial disease is so new and the various ways it presents itself are so different; there is no road map.  I'm also finding it much harder to discuss Superkid's mitochondrial disease with people.  As difficult as it is to discuss the possibility of future heart surgeries with others, at least we know what that future is and what it entails: we've done heart surgery,  so have a lot of other families;  it's very serious, but it is understandable.  I don't know what to say about mitochondrial disease, on the other hand; not only do I barely understand what it is, but I have absolutely no idea what a future with mitochondrial disease holds.  It's taking me much longer to adjust to this diagnosis and learn how to deal with it than it took when we learned about CHD's.  

I guess that is why I started this post with some thoughts on running races.  This is no short sprint I am running, as a mother.  I'm pretty sure it is a marathon and I've already lost a couple of toenails.  Then again, perhaps I'm not the one running this, but the one being pushed, Team Hoyt style.  For I have to admit, I'm not naturally inclined to accomplish the things that I have, thanks to the strength and well-timed nudges of my children.  And when I look at it that way, how can I not be grateful that they are willing to let me accompany them?

       

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!

A Time and a Season

Not long ago, I was at the dentist or some other place where the person I was talking to didn't know me very well.  We'd already discussed that I had three children at three different schools.  Somehow, I said something about sewing, which led the conversations to things I liked to make, and eventually, the person I was talking to said something like, "Wow!  You are amazing!  How do you do it all?"

Like I said, it was someone who doesn't know me very well.  Or else they would know that there is toilet paper all over the floor of my children's bathroom, there is mascara spilled in my bathroom sink, a load and a half of dishes waiting to be done, a mysterious smell coming from my son's bedroom, a kitchen floor that hasn't been mopped for.....a while....., and a freakish spider invasion in the basement rec room.  I don't do it all.  I pretty much do what I have to do and what I want to do, and often ignore the rest. 

Here's the thing.  Along with the blogs that I check on regularly to get ideas for my house, I have another group of blogs that I check on regularly to get or give support to other families finding their way around Holland.  Each day, I find myself viewing the inside of two very different worlds: the shiny, pretty world where children pose in bright, handmade clothes on slipcovered couches and painted chairs, with burlap banners proclaiming the joy of the season behind them, as their mothers pull another batch of their signature cookies from the oven......and the less comfortable world where the children pose with their latest feeding tube or portable heart monitor next to a stack of laundry that needs folding while their mothers try to sound brave about the surgery that is around the corner and the fact that they haven't had a decent night's sleep since they came back from their last hospital stay.  I take notes on things I can replicate in my own home from the shiny world, and I make lists of people to pray for and symptoms to watch for from the other world.  It is a strange dichotomy.

During those times when I struggle with the contrast of those two worlds, I have to remember that there is a time and a season for all things.  I have to trust in a loving Father in Heaven, and have faith that He has a plan for all of His children.  We are each here to learn and to grow and--especially--to experience joy.  How we discover that joy in our lives, despite our individual trials, is up to us.  We don't all experience the same trials nor do we share similar opportunities for personal learning and growth, thank goodness!  Our experiences are going to to be as unique as we are.  The timing of our tests and our blessings and even our miracles are going to be different, too.

A time and a season.   Things can change so quickly.  I found these pictures taken on a family vacation, just before Superkid was diagnosed with her congenital heart defect.

And these, taken a few weeks after Superkid's diagnosis, when we were at Boston Children's Hospital, awaiting an experimental treatment that would hopefully delay open heart surgery. 

I could not have guessed, on the day the first set of pictures was taken, what twists and turns my own personal journey was going to take.  I could not have imagined, then, what it would be like to learn to insert a feeding tube into my baby's nose or what it would be like to select a place to bury my baby.  In the second set of pictures, I was learning to imagine those things, but I couldn't yet envision how my life could ever be "normal" again. 

Is my life normal, yet?  Not really.  Not in the way I thought it would be, when the sun was shining as I dipped my baby's feet in the water.  But it is also different, and better, and more manageable than I imagined it would be when I cried that day in the garden at Boston Children's Hospital. 



Those times and seasons are ever changing, and none of us can ever predict what new experiences will be ours with the next breeze.  For some of us, the tragedy of our day is running out of glue sticks before finishing the wreath we wanted to make, and for others the measure of a successful day is one in which our child didn't have to be admitted to the hospital.  Let's be kind to one another, recognize that we are all doing our best with what we've been given, and support one another as we go through these times and seasons at our own pace.  If an empty glue gun is currently your only concern, then pray for the mother who is wondering how much longer she'll have a baby to hold.  And, if you are just hoping to come home from the hospital today, then know that this, too, shall pass; there will be time to make other memories and maybe even a wreath or two.

May I invite you to rise to the great potential within you. But don’t reach beyond your capacity. Don’t set goals beyond your capacity to achieve. Don’t feel guilty or dwell on thoughts of failure. Don’t compare yourself with others. Do the best you can, and the Lord will provide the rest. Have faith and confidence in Him, and you will see miracles happen in your life and the lives of your loved ones. The virtue of your own life will be a light to those who sit in darkness....Wherever you have been planted on this beautiful but often troubled earth of ours, you can be the one to “succor the weak, lift up the hands which hang down, and strengthen the feeble knees."

-Dieter F. Uchtdorf

Heart Stories

A fellow CHD mom I really admire, Stefenie, is hosting a special link-in party today, at her blog, When Life Hands You a Broken Heart....Create Hope.  She's inviting other heart moms and families to share their stories with each other.  


I've already written quite a bit about our experiences with congenital heart defects, trips to doctors' offices and hospitals, and the like.  Today, I want to share with you what it was like to receive our initial diagnoses:

We were expecting our third baby, a girl, when I had a life-altering experience.  I remember distinctly, how I stood in the kitchen, loading the dishwasher as the late summer sun streamed in through the window.  I could see my two children playing in the grass outside, and I thought about them as I gathered another stack of plates to rinse.  Remembering the chubby, good-natured babies they had been, I anticipated with pleasure what it would be like to take care of their soon-to-be born sibling.  It was at that exact moment that I received a message, unspoken by any voice, but distinct enough for me to know it wasn't my own thought or imagination.

"This baby will be different."

Startled, I let the plates drop into the sink, and leaned against the kitchen wall.  I could see my children tossing sand out of the sandbox they played in, hear a bird chirping through the open window, and feel my unborn baby kicking....but time seemed to have stopped.  I knew, right then, that "different" didn't mean my baby wouldn't be chubby or good-natured.  Different meant that something was wrong with my baby.  So I asked, "What is wrong with my baby?"

And the answer came.  "That doesn't matter right now."

I sank then, awkwardly, to my knees, and prayed, "Tell me what to do, please show me the way."  And I was given just a few tasks that should be done before my baby was born. 

I spent the next few weeks mourning the loss of "normal" and trying to come to terms with "different."  I cooked and cleaned and organized, just in case I would have to spend more time at the hospital with our new baby.  I shared my experience with my husband, and instead of reassuring me or blaming my fears on hormones, he quietly said, "I know," and we held each other and cried.

She came into the world along with the first snowfall of an early winter, more than four weeks ahead of her due date, and two weeks shy of a scheduled c-section.  As the labor pains started and increased in frequency, I told myself, "It's just that she's going to be early.  That's it, she might be a little smaller than the others, maybe harder to feed."  Despite the reality of my early warnings, I hoped for a less dramatic outcome than the ones I wondered about late at night.

When the doctor pulled out our new baby, my husband and I braced ourselves.  But the sweet baby who was placed in my arms--though a little smaller than her older siblings had been--was perfect.  The prettiest newborn we'd had yet, she curled up into my arms and nursed with little difficulty the first time.  Keeping her in the room with us that first night, my husband and I kept looking at her, marveling at her miniature fingers and sweet rosebud mouth. 

Days and weeks and months passed.  On the surface, there was nothing extraordinarily different about the newest member of the family.  There were small differences in behavior and feeding that I attributed to her being her own little person: she was a little harder to nurse, she took shorter but more frequent naps, she stayed petite and didn't get the rolls and dimples of her older siblings.  But still, I was nagged by the knowledge that something just wasn't right.  At each well-child visit, I would question the doctor about her weight gain, her feeding habits, the funny way she arched her back sometimes....only to be reassured that she was fine. 

Until her nine-month well child visit.  This time, the doctor shook his head as he looked at her chart.  Superkid hadn't gained any weight since her six month check up.  This time, the doctor listened very carefully to Superkid's heart with his stethoscope.  For long minutes, we sat quietly, as he listened.  "I'm not sure if I'm hearing it right, but I think I hear a little murmer, there," the doctor told me at last.  "It's probably nothing, but I like to be cautious with things like this.  Let's have a cardiologist look at her."

Strangely, instead of being alarmed, I felt relieved.  I knew the long wait to find out what was wrong with our baby was almost over.  When we sat down to get the results of the echocardiogram from the pediatric cardiologist, it was like having the curtains opened to bring sunlight into a darkened room.  Did we like the room we saw?  Not particularly, but finally knowing what we were dealing with and being able to get up and move around was better than sitting in the dark.  Mitral valve stenosis, a congenital heart defect, was what made Superkid different.

Things happened very quickly from that point.  We went from having no diagnosis to experiencing symptoms of severe heart failure in less than one month.  Superkid was desperately ill and in need of heart surgery within three months.  We spent most of those three months in the hospital.  The answer to all of the questions you might ask sympathetically--was it awful?  were you terrified?  wasn't that exhausting? --is yes.  It was all those things, and then some.  But it was not surprising, and it was not something we weren't prepared for.

I believe that God recognized that I would need some time to digest and accept the idea that this baby would be different in a way that would challenge our whole family--not just once, but many times and many ways.  I am incredibly grateful for a loving Heavenly Father who gave me, His daughter, a gift of time and preparation.  "Before I formed thee in the belly, I knew thee; and before thou camest forth out of the womb I sanctified thee..." (Jeremiah 1:5). 

Is my experience unique?  Perhaps.  Many of the heart parents I know were caught off guard by their child's diagnosis.  I am convinced, however, that the parents of children with special needs are prepared in some way to take care of their children.  They have something that only they can give, a contribution that only they can give, and that is why God entrusted them with the care of a "different" child. 

To those who are just beginning their own journey into a new world of diagnoses and doctors and hospitals and long nights willing the heart monitor to just keep beeping.....then I offer you these words of encouragement:  Trust yourself, that you have it in you to develop the skills you need to parent this child.  Trust in a loving Heavenly Father, that He has already shaped and prepared your for what is ahead, and that he will answer all your prayers--even the ones you don't know how to say, yet.

If you would like to read about the diagnosis of our second heart baby/fourth child, or find out more about our experiences with Superkid and ongoing medical issues, click on any of the following links.

Maiden Voyage: The First Posting

A Call from the School Nurse 1

A Call from the School Nurse 2

Memories

Love: 400 Extra-ordinary Days

Summer in Holland

It's been a long-standing tradition of ours to have several appointments each summer for Superkid with specialists at the children's hospital.  Contrary to what you might think, Justone and Endeavor love to tag along.

Our children's hospital is soooooo good to all the children who enter it's doors.  It's not just the patients who are treated like royalty:  their siblings are always, always offered special prizes and opportunities with every procedure, as well.  I can't tell you how grateful I am that we have hospital that recognizes how difficult one child's health problems can be for an entire family and works hard to provide the entire family with care.  Since Superkid was born, I've spent time at three other children's medical centers; Riley Hospital far surpasses the others in this aspect.  I love this place.

Funny story: a few months ago I promised a friend I would watch her little girls one day.  I had forgotten when I promised that we had an appointment for Superkid up at the hospital that same day.  Since I'm used to having kids tag-along with me to doctors' offices, I decided to just take my extra charges along with us, instead of cancelling either obligation.  They loved it!  They were treated to special toys and prizes and given lots of attention, too.  The three year old asked when she could come again!

I have yet to leave any appointment at the hospital without an armful of stickers, toys, games, and other special prizes.  You will not believe what children are willing to put up with if they know that they can select whatever they want from the prize box when they are finished.  There is a time and a place for bribery, and I'm all for it when you are having any type of medical procedure.  I've been through a few gynecological procedures that would have been much easier to tolerate if I'd known I'd get a prize afterward.  I'm going to suggest to my OB/GYN that he needs to offer more prizes.  (Spa gift certificates would be totally fine.  I wouldn't have a problem with shoes or purses, either.  I'd even settle for chocolate.)

Recently, we made a trip to our children's hospital to see some of Superkid's doctor friends. 

Our cardiologist told us that--unfortunately for him--he won't need to see Superkid for another year.  That is a big deal for a heart kid.  It means Superkid's heart is in good shape, right now.  See you next summer, Dr. Ebenroth!

After reviewing how things had been over the winter (many school absences, four cases of pneumonia, lots of migraines), our metabolic specialist was ready to make a diagnosis.  While he can't pinpoint a specific variety without doing very invasive testing (which we are opting not to do at this time), Dr. Hainline can say that he is 99% positive that Superkid has a mild form of mitochondrial disease, with metabolic and neuromuscular ramifications.

Quite a mouthful, eh?  The very simplified explanation is this:

Mitochondria are like the power plants of the body's cells.  They take fuel and process it so that it becomes the forms of energy our cells need to function properly.  Superkid's mitochondria don't work the way they should.  They have difficulty metabolizing fuel into different forms of energy needed for her cells.  

If you look up mitochondrial disease on the internet, you'll be alarmed.  Remember, Superkid has a mild form.  But knowing that she has a form of mitochondrial disease explains a lot of things, including Superkid's migraines and her "squishy" muscles.  

It also explains why Superkid is such a picky, frequent eater.  Dr. Hainline's team of nutritionists met with us, to help us understand the form of hypoglycemia that Superkid has as a result of the metabolic side of this coin.  (Ketonic Hypoglycemia.)  We don't have to make any significant changes to her diet, just make sure that she has frequent meals.  At home, we've given her a little box of snacks that she can keep by her bed, so that if she wakes up hungry during the night, she has something right there to eat, immediately.  Dr. Hainline is sending a letter to Superkid's school, to let them know they need to follow my instructions for feeding Superkid during the school day. 

We don't know, at this point, what the long-term issues with this diagnosis will be.  At the moment, I'm content just to figure out how too keep Superkid from having ketonic episodes and migraines.  I'm also grateful to be able to know that some of her food issues aren't just personality quirks.  And I feel incredibly justified in knowing that I was right, five years ago, when I tried to convince some of our original (Connecticut) specialists that there had to be something more going on with my baby than a heart condition--I was convinced that something larger was affecting her muscular system.  I hate to be right, in this case, but it just goes to show that mother's intuition is the real deal.  Trust yourself when you receive inspiration about your children.  I can't help but be astonished by the road that led us to these answers:  visits with multiple specialists, several incomplete or wrong diagnoses, even the brief life of our daughter Lily--we may never have met Dr. Hainline had it not been for Lily.

I'm so grateful for the tender mercies of a loving Father in Heaven, who has given me the opportunity to take care of Superkid, until her mission here on earth is complete.  It is always an amazing experience to accompany her on her journey.  And I'm so, so thankful for the wonderful people at Riley Hospital who continue to provide so much care and support for our family.

By the way, my latest giveaway is still open!  Make sure you enter to win a free Picnik subscription.

Holland and Spring

Notice my new header?  Yep, I found another gorgeous scene from the Netherlands to grace my blog.


You may have noticed that I use my blog for all kinds of things.  My blog is the blogging equivalent of a casserole: I throw in whatever I feel like at the moment and serve it out with a smile.  One day I'm complaining about laundry, another I'm bragging about a rare moment of craftiness.  One day I stand on a soapbox, another day I sit down and dish on our latest trip to a doctor's office.  And every so often I discuss Gacky Sage vs. Silver Sage. 

I began blogging to sort out and record the way I felt about some of the challenges in my life: children with special medical needs, the death of my youngest daughter, my evolving roles as wife and mother.  In fact, I named my blog after an essay written by Emily Perl Kingsley, "Welcome to Holland," which illustrates some of those challenges so well.  (You can read it here.)

Looking back, I can see that I have done a lot of sorting and recording.  But along the way, I think my blogging has begun to accomplish something I didn't expect: it documents the fact that despite some unanticipated challenges in my life, I've continued to read and write and do laundry and plan menus and go on vacations and sew things and make dinner and make cupcakes and give my husband  Valentines and give my kids haircuts and do things with friends and laugh at myself and paint my kitchen and.....so many other things.  I've continued to live and find joy in living.  There were some dark days, when I wasn't sure doing all that could be possible.  I'm so, so, grateful for the gift of time, and for a loving Heavenly Father who has a plan for all of us.

If you are living through some dark days yourself, take heart.  Or, as we like to say at our house, "Hold on Tight and Choose the Right!"  There are brighter days to come.

Maybe your life isn't going the way you expected, right now, but stop, look around you, and see if you discover some beauty in your own landscape.  After all, "...Holland has windmills....and Holland has tulips. Holland even has Rembrandts." 

Today, in the spirit of Emily Perl Kingsley's essay, I want to share some of the things that make spring in real Holland wonderful.  I'll leave it up to you to find the parallels in your own personal piece of "Holland."

From www.krolltravel.com:

Few people realize that tulips did not originate in Holland. They were first imported from Turkey in 1554 as collectors' items. By the 17th century, the speculation in bulbs became a mania.

Merchants were so obsessed with their beauty that they would pay thousands of dollars for a single bulb. The tulip even gained a stock market value and fortunes were both made and lost.

Tulips are still a big business for Holland. Bulb fields stretch for miles across the countryside. During the peak season, a rainbow of vivid colors carpets the earth for as far as the eye can see.

From http://www.infohub.com/Articles/traveluv5.html,  Holland, Everything's Coming Up Tulips:

Add to this picture the fabulous annual mid-April Flower Parade of the Dutch Bulb District. Consisting of approximately twenty bloom-covered floats, each covered with about 100,000 flowers, it is similar to California's Rose Parade in the U.S., except that this parade consists of floats covered with bulb flowers and is an all-day, on-going trek from one town to another. The gorgeous procession travels from Noordwijk, in the heart of the blub fields, to Haarlem, about 24 miles (40 kilometers) away. 

 There are more than 10,600 miles (17,000 km) of designated bicycle tracks around the Netherlands.  The landscape is generally flat, making it ideal for bike rides.  

Wouldn't it be great to see sights like these?  Windmills and tulips?  Imagine doing so while you pedal along at a leisurely pace, on your designated bike path!  (Am I making you want to go on a bike tour of Holland, right now?)

Just think of the pictures you'd come home with after a trip to Holland in the spring!

 Did you know that besides tulips and windmills and Rembrandts, Holland has diamonds?

 The diamond trade in Amsterdam attracts millions of tourists and buyers from around the world.  Many famous diamonds were cut and polished in Amsterdam. 

Let's go back to Rembrandts.  Holland does have Rembrandts, and this is one of my favorites:

The Night Watch

One thing I didn't know--but should have guessed--is that Holland has tulips named after Rembrandt!  They are very stripey and striking, like this:

 From Emily Perl Kingsley's essay, "Welcome to Holland":

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 I hope you have a moment to find and enjoy the beauty in  

your own unexpected journey, today.

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

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.