Loving without condition, giving without measure, living for each moment


{Another} Snow Day

Snowiest. Winter. Ever. {This was written weeks ago, but just now got published…}

Seriously, that’s according to the record books.  But you won’t find me complaining!  I love the snow.  Last night I braved the elements to attend our preschool’s Moms’ Night Out and, of course, the weather was a hot topic.  One of my friends verbalized the emotion I’ve had about these storms; it feels like God’s way of slowing us down and encouraging time spent together.  And that’s truly how I’ve felt.  By the grace of God, Daddy has been home for the majority of the snow, which means it’s really been family time.  And quality time: games, giggling, movies, sledding, cocoa, jammies, snuggling, and a pervasive sense of happiness.  It’s amazing.

It’s also been full of bonding with friends, because spiked coffee and Chinese food and card games are best enjoyed in groups.  As is a FryD@ddy.  Perched on a snowbank, attached to an industrial extension cord run across the street.  Not a safety hazard at all!  Especially in close proximity to a raging fire pit and attended by only mildly intoxicated but socially responsible adults.

I have to admit that I have a whole new admiration for my neighbors!  The idea was ingenious.  And I felt this true connection with them because, yes, we’re all having a great time chatting around a bonfire, but we’re all really thrilled that our kids are making memories that will last a lifetime.  It’s so reassuring to be surrounded by people who think about things like making magic for their children.

All that aside, we’ve have four major winter storms!  The children have missed two weeks of school and there’s more snow in the forecast.  We intended to have our playset built as a Christmas present until we got hit by the first storm.  Our second build date was the first week of February.  I’m not sure when it will go up now.  Maybe in the spring : )  The novelty has worn off (a bit).  Still, I’m always excited to see flakes falling from the sky and I believe that there are few things as beautiful as fresh fallen snow.  I am as determined as ever to keep this time fun and to prevent it from deteriorating into tired whiny bored children and cranky cabin-fever-riddled parents.  So here’s what we’ve done to pass the time when the storms are raging or it’s too cold or we’ve already been outside and our snow clothes need time to dry.

1. Valentine’s Boxes

The girls’ school sent home requests for us to make boxes for their Valentine’s parties and what a perfect snow day project!  It actually became so involved that it filled two afternoons.   We painted shoe boxes (No, Princess, Brown is not a good Valentine’s Color) and then embellished them with any little thing we could find in the craft cupboard.  I think they turned out spectacular.  And we only had to vacuum up a few vials of glitter.

2.  Dress Up

Really, this one needs no explanation.  No snow on the ground either.  These girls dress up every day.  But it’s still funny to capture them in their own worlds.  Especially when it involves a complex game of “Hotel” or “Phineas.And.Ferb.”

3. Lego Cake

In our case, we actually had an occasion to make this cake ~ but it would be fun any time.  It’s not as easy as BettyCrocker makes it seem, but it’s pretty quick.  And the kids loved the icing covered marshmallows.  {Happy Birthday Daddy, we love you}

4.  Bubble Baths

Snow means cold and cold is the perfect excuse for a long soak in a bubble bath.  And these girls can spend hours in the bath.  My bathroom might never be the same, but they had a blast.  Every night since they’ve asked informed us that they are going to take another bubble bath.

5.  Movies & Snuggies

Of course, we couldn’t make through inclement weather without watching movies.  And when we got bored, we watched our first ever “On Demand” movie.  And what could keep four little girls so spellbound they didn’t move once?  Santa Buddies.  Yes, it was over a month after Christmas, but they loved it anyway.  And they kept warm by wrapping up in their brand new snuggies!

So that’s how we enjoyed our weather imposed vacation.  And although I’ll be glad to see spring, we sure did enjoy the snow while it lasted!


I saw God today

Do you know that song? I’ve always liked it, but today I lived it.

I’ve felt, I don’t know, indifferent, I guess, this year about CHD awareness week.  Maybe sometimes living this life is exhausting and I want to escape it for a bit.  But as much as I’ve stopped writing it, I’ve started talking it.  MLH has had some wonderful opportunities to network with businesses, a new audience for us, and we’ve seized them with excitement.  It’s a very different animal to talk about CHD than to write about it.  You have to be neat and clean and calm and coherent ~ different mindset altogether, different purpose altogether.  And it’s interesting how people respond; sometimes they get emotional.  Sometimes they want to know more, and sometimes there’s nothing. That’s the absolute worst, because you feel like you’ve failed.  How could even the most tough heart turn a blind eye to these children?

Today started off a pretty normal day in the life.  After the preschool run, I went to a local coffee shop to work with Christy.  And we were sitting among the morning rush, immersed in our own lives when suddenly the stranger at the next table started talk to us.  That’s unusual in itself.  Mostly these days we’re minding our own business, barely feet away from each other but still ships passing in the night.  And he was a character; probably six foot four, dressed all in black including a black leather trench coat and missing his right index finger above the second knuckle.  I’m not sure how old he was, but the lines on his face were pretty deep.  Definitely a tough guy, in dress and manner.  But he noticed Syd and was captivated.  After chatting with her for a second, he looked right up at us and said “my son just killed himself.”  And then he stumbled over himself apologizing for the words that clearly popped out of their own accord and tears filled his eyes.  He spent the next few minutes drawing with Syd and sharing occasional snippets with us about his boys growing up and little stories that were forever crystalized in his memory.  His wife was also in black and so very different with her mourning. She was quick and brisk and frozen and continuously scolded him for not eating.  And she cringed as he reached out to us.

Sydney was captivated.  He drew her a little fish and she colored it in; then she drew another one, adding her own flourishes.  He was clearly touched by her affinity, by her attention.  And then, when the gentleman went to get a bag for his untouched breakfast, Sydney looked up and handed the wife her drawing.  The woman thanked her and then got up to hide the tears streaming down her face.  When our friend returned, to find the empty table, he hurried to say his goodbyes.  Again he apologized for intruding, for sharing too much.  I reached out, caught his hand, and looked him straight in the eye.  And there was this connection, this knowledge.  So much I wanted to say, to communicate, to make him understand that I saw his humanity, that fiber at the core of our beings.  But are there words for that, especially between two strangers?  I choked out that I was so sorry for his loss, that I prayed for healing.  And then Sydney looked up and offered this grizzly dark stranger a kiss.  And what could have been more divine than one innocent little girl with a broken heart offering hope and love and promise to this broken hearted old man.

Call it what you want, but I saw God today.  It was Him who led this devastated grieving father to perhaps the only people in that crowed cafe who would listen and hear his story and understand his humanity.  It was Him who inspired a little girl to connect with a strange stranger and his icy wife.  I felt an intense peace as I reached out for the hand of a man I don’t know and held it tightly in my own.  Thank you God for the opportunity to connect with this father, set adrift by unfathomable circumstances.  Thank you God for the love in Sydney’s heart, love that so far surpasses the confines of a single ventricle and single atrium.  She doesn’t love with half her heart; she has more love than millions of others born with full hearts.  Thank you God for the grace that bloomed in me, usually so conscious of the world around me, of the stares of those sitting a few feet away.  I don’t know how the me of four years ago would have responded, would have reacted.  But these years have forced me to face my own humanity, my mortality, my daughter’s frailty; I understand that these moments are our opportunity to minister the others on this journey.  Today we made a difference in the life of man who needed to know that he could go on living, get up every morning with a purpose and make his way into a world without his son in it.  I don’t know if we’ll ever see him again or if when we do happen to meet again, any of us will remember where first we met and under what circumstances.  But then again, how could I forget, because I saw God today.

The Best Laid Plans

While I haven’t had lots of time to write this week, my mind has been spinning a mile a minute.  I really did have the best intentions to blog every day during Blog4CHD week and then life got in the way.  Not that I mind being snowed in with my husband and my children and making memories with our friends and neighbors, because who could complain about that?!  Regardless, I did spend lots of time thinking about CHD.  And I realized that I have a hard time reconciling the two faces of congenital heart disease in my psyche.  On the one hand, I carry with me everything I’ve written about in the past, and that’s all real.  But on the other hand, I wake up every morning to TWO pairs of beautiful blue eyes full of energy and life.  And I can’t help but think of my song-of-the-moment I’m Alive.  “Breathin’ in an out’s a blessing can’t you see”… and the thing is, I can see and I’m eternally grateful for the gift of truly treasuring each day. I don’t know what life would be like in our family had Claire been born completely healthy, but I’m willing to bet it would be a bit different.

And then it started snowing, and I stopped thinking and just started living.  Because today was the first day of the rest of our life…   

Blog4CHD week: CHD Word Cloud

Our Heart Story

Blog4CHD Week Jan 25th-Jan 31st.

Hoping & Praying

Three years ago today we came home from the hospital.  It seemed like such a monumental occasion, bringing home our fragile broken-hearted daughter and trying to start life over in “our new normal.”

We learned at 24 weeks gestation that Claire, our second baby girl, had transposition of the great arteries (TGA) and a significant ventral septal defect (VSD).  We made plans to deliver at the only hospital in the state with a pediatric cardiac surgeon, hoping and praying that she would have her surgery and come home “fixed.”  Claire arrived on January 18, weighing in a 7 pounds, 3 ounces and wailing.  I got to hold her for a few precious minutes until the NICU team whisked her away for assessment.  In those first few critical hours, my husband Michael and I clung to the fact that she’d been born pink and crying, hoping and praying that she was stable downstairs and that her PDA was wide open.  It never occurred to me that there were other things for which I ought to be hoping and praying.

When I had met the requirements for leaving the labor and delivery floor, we went down to meet our daughter.  Frequent telephone calls to the NICU had kept us informed of her progress and we knew that she was happily breathing room air, she’d had a thorough check up and her first echo.  Our first moments with her in the NICU were magical.  We counted and photographed each finger, each toe, her long lashes and the beautiful rise and fall of her chest.  After assuring myself that she was doing fine, in fact, better than expected, Michael and I went to nap.  I fell into a deep sleep, still hoping for the best and thanking God for Claire’s smooth arrival.  The calm of that sleep was shattered by the insistent ringing of the telephone and then by a loud knocking on the door.  I want to wrap a blanket around the memory of those two parents, still groggy from the first sleep in 24 hours, completely unprepared for the news they were about to receive.  I want to whisper in their ears a line from one of my favorite songs, “hold on, hold on to yourself, this is gonna hurt like hell…

And so it began, our journey into the perpetual unknown of complicated congenital heart disease.  Words like “nuanced,” “complicated,” and “unique” slammed into our ears, and our hearts sank.  We stared at our surgeon as he shook his head and reclaimed the life raft to which we’d clung the past few months.  And just when we thought the bottom had completely fallen out, there came another knock at the door, even more insistent than the last.  When we saw the fellow’s anxious face and heard his rushed words, we understood how much lower there was to sink.  In an impossibly short period of time, our little girl had decompensated, desaturated, and deteriorated.  We found her on a ventilator, swollen, splotchy, and gray.  She was baptized in that pitiful state, only minutes before her first trip to the cath lab.  As we watched them wheel her away, I hoped and prayed that I might get to hold her again, to see the rise and fall of her chest, that she might meet the big sister who loved her so.  Hoping and praying, we called our families to ask for their prayers as well; hoping and praying, we realized that nothing prepares you for this road.

We are the lucky ones.  Claire emerged from the cath lab with a hole between her atria that allowed for sufficient mixing of oxygen rich and oxygen poor blood (successful balloon septostomy).  Within twelve hours she came off the ventilator and went directly to room air.  That afternoon Michael got to hold his daughter for the very first time.  Six days later we brought her home.  Home to her nursery, her sister, her whole family.  Home with her broken heart.

We spent 10 weeks hoping and praying for a surgeon to mend Claire’s little heart.  Each echo confirmed the bad news.  That unique little heart functioned with a thick and oddly developed pulmonary valve.  Each beat sent blood flushing through the two holes between her ventricles and the life-saving, man-made hold between her atria.  Each day we waited for better news, for an outcome we felt we could accept.  There were moments in which it hurt to breathe, hurt to look at her face, hurt to hope.

The day after Easter we turned over our baby girl to the surgery team that would hold her life in their hands.  We spent those long miserable hours hoping and praying for our little girl, for her heart, for a solution that would allow her to thrive.  And then our surgeon walked out with a smile on his face.  While it wasn’t the solution we’d hoped for, it turned out to be the one we’d prayed for ~ the only one that would allow her to survive, with few complications, no medication, no left outflow tract obstruction.  And while there are down sides to the Rastelli, Claire’s heart is a work of art, crafted to fit the confines of her unique little heart.  At night, when I put my hand on her chest, I feel it rise and fall and I feel the little thrill that reminds me of how hard we fought, how long we hoped, and how fervently we prayed for this little girl and her amazing heart.