Be the Miracle

After Ella recovered from her heart surgery and we were finally able to bring her home, my family and I were so happy.  Actually, happy doesn’t sufficiently describe how we felt.  We were nervous, excited, giddy, relieved, ready, happy.  We couldn’t wait to finally begin our life together as a whole family at home, just the five of us.  Even knowing that Ella’s heart surgery was never a “one and done” type situation couldn’t put a damper on our spirits when we left the children’s hospital.  We knew that future surgeries and hospitalizations were not ifs but whens.  We just never imagined that the when would happen so soon after her homecoming that Memorial Day weekend.

In August 2011, due to changes in her eating and breathing, Ella’s cardiologist ordered an echo to check her heart function.  The echo revealed that the surgical repairs to her heart were no longer functioning properly.  We had to return to the children’s hospital for a more thorough, internal check of her heart.  A visit to the heart cath lab showed that the pressure in her lungs was high.  That pressure combined with the failing repairs and her other inoperable heart defects meant an extremely poor prognosis for Ella.  The question my husband and I had feared to ask before – would Ella need a heart transplant? – was now something we hoped was even possible.  But would the high pressure in her lungs almost ensure the failure of a new heart, no matter how healthy that heart may be?

For the second time in our lives as Ella’s parents, my husband and I felt the floor drop out from under us.  Not only was Ella in heart failure again, but at that moment in time, no one was sure if there were a damn thing that could be done about it.  We were advised, in not so many words, that we should prepare for the possibility that nothing further could be done surgically and that we’d have to take Ella home to make her life as comfortable as possible until….

I’d had a lot of dark days before that moment, and I’ve most certainly had my fair share since, but in those moments after meeting with the heart cath doctor - while Ella was recovering from the lab visit and my family and I were trying to process this incomprehensible news together in the hospital chapel - I was enveloped by overwhelming sadness and even despair.  It had been one thing to make the statement that Ella was “my daughter but God’s first,” but it’s an entirely other thing to accept it, to live it, and to make peace with it and with the fact that God didn’t promise or guarantee me a certain length of time with my family here on earth, that God - not me - is in control of the length of her life.

And how could I, as a heartbroken mother, sit there and explain all of that to my two young boys?  How could I explain that while God did answer their prayers – their years-long prayers – for a baby sister, He might also call her Home before the three of them could really get to know one another?  How could I explain that in all things, God’s perfect will be done while I myself am mentally railing against the same #*&$%@ will that might steal my child away from me?  What could I say when my boys, while sobbing and holding onto me, tell me that we should try to be grateful that God gave us as much time with Ella as He did?  How could I resign myself to my own baby girl’s impending expiration date?

After almost a week of review, debate, and discussion by the cardiology and transplant teams and after constant monitoring of her condition by the PICU staff, Ella was placed on the heart transplant wait list.  What a day that was, and what a relief!  Only a few months before, we had dreaded even contemplating organ transplant, believing it to be a signal of the end, the ultimate last chance for our girl.  But on the day she was officially listed, we were very happy.  Being listed didn’t just mean that Ella had a chance, even a last one; it meant that other people – professional, educated, intelligent people who were the best in their field – also believed that Ella not only had a chance but that she could handle a second chance at life via transplant.  Ella was listed status 1A, and of course we joked that the A stood for “awesome”.

We knew Ella receiving a heart transplant would be a miracle in and of itself, but we also believed that God is an awesome God, full of surprises and infinite possibilities.  So while we waited for days and then weeks and then months for a new heart to become available, we also prayed for a miracle, like an actual “call the newspaper, we got us a MIRACLE to report” miracle.  We begged that God grant Ella miraculous healing, praying day in and day out that He heal not only Ella’s heart but also all the parts of her body that were ill-affected by her sick heart.  We asked that God grant Ella miraculous healing through the intercession of Blessed Kateri Tekakwitha, a holy woman with whom Ella shared the bonds of Native American ancestry and adoption.  We knew that, at the time, Kateri Tekakwitha needed one more miracle to pave her way to canonization, and we hoped that Ella’s miracle would be the one.  We prayed for miraculous healing for Ella, but it wasn’t meant to be.

What a hard pill to swallow after repeating Matthew 7:7 constantly while praying for my daughter.  We asked, but it wasn’t given to us.  We sought, but we didn’t find.  We knocked, but the door was all but slammed shut.  I remember having the gall to remind Jesus of the Canaanite Woman’s faith, desperately crying out her words, “even the dogs eat the scraps that fall from their masters’ tables” while hoping that my Ella would receive the “scrap” of a new heart or a miraculous healing.  “She’s such a small thing, Lord.  She won’t need a huge heart.  Just a scrap.  Please, Jesus.”

The morning after Ella died, my husband and I returned to the PICU one last time to collect her memory box, which contained a lock of her hair, the molds of her hand and foot, and a small book with personal notes from the medical staff who took care of Ella for all those months.  We were also there to say good-bye to the people who had cared for and loved our daughter for all those months.  One of the more difficult good-byes was to the ARNP who had most consistently taken care of Ella and who had been her medical caseworker (for lack of a better term).  I cried as I thanked her for all of her hard work on Ella’s behalf.  Over the course of several months and because of her near-daily visits, she had not only gotten to know Ella but she had also gotten to know me.  She knew how desperately I had wanted Ella to be well, how much I had hoped and prayed for a miracle.  Still crying, I hugged her good-bye, and as we stood there, she said, “You were her miracle.  You were her miracle.”

All these many months later, I still think about that moment and her words.  As much as I miss my girl and wish things were different and as much as I wish she had received her miraculous healing, I take a small bit of comfort in the idea that my husband and I were her miracle.  For as many “what ifs” as there are with regard to her death – what if she had lived long enough to receive a new heart?  What if different medical choices had been made?  What if we had recognized sooner the second time around that her heart was failing again?  What if?  What if? – there are many I think of with regard to her life.  What if we had made different decisions for her from the word go?  What if we hadn’t arranged for her new baby checkup as quickly as we did?  What if another family had adopted her and hadn’t had her seen by a pediatrician?  What if the cardiologist hadn’t immediately fit her into his schedule but made us wait until the next available appointment five days later?  What if the surgeon hadn’t waited until Ella was big enough and strong enough to undergo surgery?  What if?  What if?  

Were all of the decisions that we and the medical staff made the ones that gave her eight months, seven days, and twenty minutes of life?  Though she didn’t get a hugely spectacular, life-changing miracle, was her life filled with countless, small everyday miracles?  

A few months ago, my 11yo and I had a conversation about our wee Saint Ella.  I think he wanted to better understand how his sister became a saint, as he’s only got basic knowledge of the canonization process, most likely gleaned from conversations we’ve had at home regarding Blessed Teresa of Calcutta, Blessed John Paul II, and now Saint Kateri Tekakwitha.  He knew enough about the process to know that miracles are needed and have to be attributed to the intercession of the Blessed.  I explained that Ella was a saint because she had been baptized and had died an innocent in a state of grace, not having been able to even sin.  But then he told me that he knew what her miracle was.  He said, “She made people happy and made them feel good about themselves.  That’s what she did for me.”

I have had too much time on my hands over the past year to think about all sorts of inconsequential stuff, but I believe that at least one thing of substance has come from all these thoughts and talk of miracles.  I think that sometimes we want and expect too much grandeur, too much pomp and circumstance, too much showy, glitzy zing, so much so that we forget to appreciate that life is really about the small moments.  It’s about the living that goes on during the minutes that tick away between the loud hourly bongs of the grandfather clock.  So often the grand miracles we need or expect don’t happen, but we’re so caught up in waiting for them that we don’t recognize the miracles of everyday life.  We wait for God to perform His big miracle, not realizing or understanding that perhaps He's calling us to be that miracle.

Ella was my 11yo’s miracle.  She loved him like no one else did because she loved him simply for who he was and she really loved being with him.  She smiled when he held her and when he visited her in the hospital.  She didn’t judge him or call him names or say, “I love you, but…”  She made him feel good when so many others didn’t.  And Ella was my miracle.  Her short life was my moment on this earth of absolute, unconditional, heart expanding, life changing love.  She made me want to be a better mom and a better person.

Being told that I was Ella’s miracle profoundly affected me.  It moved me to look at this heartbreaking loss and Ella’s short time here on earth in a different light, and it has moved me to look at my own life in a different way.  I can’t help but ask myself how many times I’ve failed to be someone else’s miracle or how many times I hadn’t even realized that I could be someone’s miracle.  I wonder how many small miracles I may have missed by waiting for the big ones, how many opportunities I dismissed because being someone’s miracle is sometimes hard or inconvenient.

I think one of the best ways that I can honor my sweet Ella is to try to be the miracle for others.  I can be the help, not the hindrance; the love, not the apathy; the peace, not the stubbornness; the hope, not the discouragement.  And I can begin here today, not by waiting until I can make a huge difference out in the world only to become discouraged by how big the world is and how small my progress is, but by starting small, starting here in my home, and starting now with the people God brought into my life who matter most – my family.  Please, God, help me to be their miracle.

St. Ella, pray for us!

Home for the Holidays

I love Christmas.  I have always loved Christmastime, and I love celebrating everything about it.  I love the holiday sights - green wreaths and red bows, trees decorated to the nines, sparkling snowflakes and smiling snowmen, Santa statues in stores, Nativity sets and twinkling lights on lawns throughout the neighborhood, Christmas cards in the mailbox.  I love the tastes and smells of the season - warm cookies and eggnog, turkey dinner with sausage stuffing hot from the oven, freshly cut pine trees, burning incense at midnight Mass.  And I love the sounds – excited kids opening presents, familiar lines from classic movies like “It’s a Wonderful Life” and “White Christmas,” hilarious lines from new classics like “Elf,” a church full of people singing hymns and carols, and Christmas music playing on the stereo.

Oh, the Christmas music!  The frequency with which I purchased Christmas CDs in the past probably made me look a bit like a music junkie!  I couldn’t get enough of it.  My Christmas CD collection has something for every taste and includes everything from the Mormon Tabernacle Choir and the London Philharmonic Orchestra to Nat King Cole and Ella Fitzgerald, from Martina McBride and MercyMe to light piano jazz and Celtic guitar.  I love it all!

And I love all of the traditions that are part of celebrating Christmas, too; those I grew up with and those that my husband and I have created for our family.  I’ll always be grateful for one particular tradition my parents began with us.  No, not the annual torture session that was the dreaded family photo!  Oh, the stories I could tell…oy.  Rather, the annual tradition I loved most, one that I started with my kids, was that my parents gave my brother, my sister, and me each a new ornament, marked on the bottom with our names and the years they were given.  When each of us got married in turn, we received a box filled with our childhood ornaments.  A tree without those decorations may well be beautiful, but it would, for me, be incomplete.  Being able to trim my own family’s trees each year with ornaments from my youth allows me to incorporate my childhood traditions and a feeling of home into my home now.  And honestly, what are the holidays without home?  Indeed, home helps make the holidays.

So being away from home for the holidays is difficult.  The word holiday connotes family and friends, good times and traditions, smiles and fun…and home. Spending a holiday not only away from home but at the hospital with a critically ill child is even more difficult.  As a parent, though, you make it work.  You do what you have to do for love of your child.  You have to be there – heck, you wouldn’t want to be anywhere else! - so you try to soften the blow of the location and the situation by focusing on your sweet kiddo and on making the holidays as bright as you can for her sake.  You decorate your child’s hospital room with a tree and with Christmas lights, knowing that the brightly colored lights can’t really compete with the hospital’s ubiquitous fluorescent lights.  You play soft Christmas carols instead of lullabies, though the music is often punctuated by the beeping of alarms and monitors.  You hang cheery Christmas cards and cute stockings on drably colored hospital room walls.  You dress your baby in cute holiday outfits, being careful not to interfere with any medicine or oxygen lines.  You write letters to Santa on her behalf begging for a miracle.  You do what you have to do.

If there is something good to be said about being at a children’s hospital during the holidays, it’s that there are so many people who want to help you and so many organizations that want nothing more than to lift your spirits.  They understand how hard it is to be away from home with a sick child.  Many of the groups were founded by people whose own children were critically ill.  So during the weeks leading up to Christmas, those groups go out of their way to make the season a bit more festive.  They deliver gifts to the kids and families in the NICU and the PICU.  They provide meals for the families staying at the Ronald McDonald House.  They craft handmade blankets, pillows and pillowcases, hats and scarves, teddy bears and the like, so that families away from home can still have a touch of something homey.  Being away from home for the holidays can be so hard, but there are so many who try to make it…not easier, just less hard.

It was around this time last year that I stumbled upon a video on YouTube that really brought this message home for me.  [I hope it is still available to view by the time I post this to the blog.]  It’s really just a very glitzy, very well-produced TV commercial-cum-music video for a cell phone company that was beautifully set to the song “Home for the Holidays,” but it was so much more than that to me.  The first time I watched it, I got goose bumps and I cried.  Now, I have to admit that I’ve been known to cry at random commercials before – at ads for our local grocery store chain, for greeting cards, for the Olympics - so there is a precedent for tears.  But this time it was different.  This time, it wasn’t just the message and its delivery that tugged at my heart strings but also the circumstances in which I found myself watching the commercial.  I remember sharing it with my friend K., another heart mom whose child was in the hospital, and both of us crying.  I remember sharing the video on Facebook, saying, “There really is no place like home for the holidays, and for me, home is wherever and whenever all five of us are together.”

If ever anything forced me to ponder the concept of home and what it really meant to me, it was my daughter’s extensive hospital stay.  As the days and weeks turned into months, home was no longer a question of where; it was one of who.  Home was family.  Home was my husband, our two boys, and our daughter.  Home truly was wherever we happened to be and for however long we happened to be there together.  Yes, I longed to be able to take Ella back to our physical, literal home for the holidays - happy, healthy, and healed - but at that point, I was forced to be content with the fact that home was a room in the PICU.

Last year at this time, I was still in the children’s hospital with my daughter Ella.  Last year, I was still so full of hope – hope for a miracle for her, hope for a healthy, new heart, hope for the future, and hope simply because of the season.  You see, even though she and I were in the hospital in a town far from our family and far from home, and even in light of Ella’s long list of medical issues, I still had hope.  I still thought she had a future, and I still dreamt of her future and of our future as a family of five.

Being away from home for the holidays is a difficult thing, but even more difficult, even more painful and even more heartbreaking is being home for the holidays without my sweet girl.  Home is where the heart is, but so much of my heart has gone with her.  Home is wherever and whenever all five of us are together, but she’s no longer here.  We will always be five, but we are no longer five together here.  There’s no place like home for the holidays, but when you baby girl is truly Home while you’re in a too-empty house pining for her, the holidays feel less cheery, the season less bright.  It is still so hard to wrap my brain around the fact that she is gone, that she died before we could truly celebrate Christmas as a family.  And now we must celebrate the birth of a Child while we still mourn the death of ours.

I know that there’s no place like home for the holidays.  The idea of being home for the holidays has changed for me now, though.  Because of that, my focus during the holiday season has changed.  I’ve been so focused on how unfestive our home is, how hard it will even be to celebrate Christmas, how sad this time of year will probably always be for me now.  I’m sad because I miss my Ella.  I’m sad because she died three days before Christmas.  I’m sad because my arms are empty and no present under any tree will ever fill them.  But when I force myself to think about it, I know that, of the five of us, my girl is the only one blessed to truly be Home for the holidays.  She’s the only one of us able to celebrate with the Reason for the season.  Though she never celebrated her first birthday, she gets to celebrate His with Him.  Maybe remembering that will keep at bay the melancholy that often threatens to overwhelm me.

The last two lines of the song “Home for the Holidays” speak the truth:  If you want to be happy in a million ways/for the holidays you can’t beat home sweet home.  My daughter is Home for the holidays, and one of the things I have to try really hard to remember during this season – during what is truly the most difficult of all the hard times we’ve experienced without her – is that she has already achieved the goal for which we are all still striving.  She is eternally happy in a million ways for One Reason.  She is Home sweet Home, and while it breaks our hearts in a million ways for her to be gone, it gladdens them in the most important way because though she can’t be at home in our arms this Christmas, she can rest safe in the arms of the Christ Child born for all of us so many years ago.

 

 

St. Ella, pray for us!

Bad Memory

My 8yo does not like Granny Smith apples.  He says that they are too tart and sour.  My husband and I like them, though.  My husband eats them whole and unpeeled while I eat mine peeled, cored, and sliced – the better to dip them into the peanut butter jar!  I have a Granny Smith apple a day with lunch, so apples are always in the house.  But my kiddo much prefers the sweeter red delicious variety.  He asked me to buy some for his school lunches, and since I want to encourage healthy snack choices, I said I would get some.  He asked me to buy those red delicious apples several times over the course of a few weeks.  It only took me three trips to two different stores to finally remember to get them. 

I’ve never had a fantastic memory.  Even way back when – before marriage, before kids, before Ella – my memory was average at best, and then after kids came into the picture, I just started blaming my bad memory on them!  When I try to recall life events, I have to first remember where I lived when the event took place and then figure out the year and/or grade I was in to help connect the dots and fill in the blanks.  Maybe this is a problem all military brats deal with – having to catalog memories by which duty station or state you lived in at the time?  Anyway, for childhood memories, I can at least rely on my sister’s excellent memory to help me out.  My sister can very clearly and specifically remember events from when she was a toddler.  She even remembers when I was an infant, and she was only two and a half years old at the time!  I, on the other hand, can barely remember last week…or yesterday, if I’m going to be honest. 

I can’t remember to buy the apples my son asks for.  In the time it takes me to walk the 17 steps from the first floor of our home to the second, I forget why I’m making the trip.  As soon as I step away from the computer, I can’t remember to respond to emails or messages.  If I don’t write it down, type it as a note on my cell phone, or make a list and then make another list that I’ll actually read, then I just plain don’t remember anything anymore.  My memory has always been just slightly less than good.  On a scale of one to ten, my memory was meh.  But since Ella died, it’s gone from bad to wait….what was I talking about? 

My memory is shot to hell, yet I can remember every blasted detail of Ella’s last days and of the weeks that preceded and followed her death.  It’s a slightly cruel twist of fate that those memories are the ones in the forefront of my mind and in such bright and vivid Technicolor.  It’s unfair that all of the good memories of her short life are overshadowed by the overwhelmingly bad memories, the painful memories, the whyGodwhy? memories.  It’s just crap that so many tears follow so closely on the heels of such fleeting smiles when I do try to recall some good times.  It breaks my heart that, though I can’t quit staring at her pictures on the fridge, in the bedroom, on the computer, or on the visor in the car, I feel guilty for wondering if my trying to remember the good times does more harm than good, and if all of the reminders – the sweet, gorgeous, beautiful reminders – just amplify and intensify the pain that would be there anyway. 

My day-to-day memory is shot all to hell, but my Ella-centric memories are beyond intact.  I remember the specific names of the eight different things that were wrong with her heart, and I could point out or even sketch where they would be on a diagram of a heart.  I remember all of the medicines that Ella was on throughout the months of her care, and I even remember some of the dosages.  I remember the room numbers of all of the rooms Ella was in for the 5+ months she was hospitalized, and I remember the patient code I had to use to get into the PICU.  I remember the names of all of the doctors, nurses, therapists and support techs that took care of Ella.

I remember the not-so-calm before the storm, the time before it really hit the fan.  I remember when the decision was made to try intubating and sedating my Ella.  I remember trying to catch my breath while crying and telling a doctor to not leave Ella’s side while I quickly took a restroom break.  I remember the look on one particular nurse’s face when she and I made eye contact in the hall as she hurriedly grabbed something from (what I guess was) the crash cart, the strained, shocked look of holy shit - NOT this, not now, not her!  I remember looking into the doctor’s eyes when she said that the medical team was doing compressions and that though the doctor wasn’t crying, her eyes were moist and red-rimmed.  I remember the crowd of doctors and nurses in the hall because there was only so much space in Ella’s room.  I remember walking into her room and seeing that she was surrounded by so many doctors and nurses.  I remember hearing someone say loudly, “It’s the mom!  Mom’s here!” and sensing that they were making way for me while I focused on getting to Ella.  I remember the weight of her when I scooped her up into my arms, not waiting for anyone to clear lines or clean up.  I remember that in the middle of Last Rites during the Litany of Saints, the doctor who had placed his stethoscope on Ella’s chest looked up and shook his head.  I remember just kissing her sweet head over and over and over again and feeling her temperature slowly slowly slowly cool. 

I remember so much.  I remember it as though it were yesterday, as though I just left the hospital a moment ago, as though I just buried my sweet baby girl.  I remember every moment, but I can’t remember to buy a bag of damned freaking apples. 

Earlier this year I read a couple of posts by Catholic blogger Jennifer Fulwiler.  She wrote about witnessing her neighbor’s grisly and fatal motorcycle accident and about learning how to handle and process that incident.  In her piece Therapy and the Spiritual Life, Fulwiler explained why she chose to go to therapy.  She had been against the general idea of therapy for a long time but had gotten to a point in the post-trauma grieving process when something had to give.  I read the blog post with great interest because I could relate to the information she presented about how the brain actually changes due to trauma.  It just made sense that the brain would store traumatic memories differently and process them differently than it does the “normal”, non-traumatic memories.  The information that Ms. Fulwiler provided shed some much appreciated light on why my memories of everything involving Ella’s death have yet to make the leap from present tense to past.  I haven’t made the decision to transition from cheap therapy to professional therapy for a variety of reasons, but my eyes and my mind have certainly been opened to the benefits offered by the latter. 

I have a bad memory except with regard to the stranglehold my brain has on all of the bad memories.  But for as wretchedly painful as it is to relive the events of Ella’s death, I’m not sure that I’m ready to let them go.  I’m not sure I could let them go without feeling like I’m letting her go all over again.  I will be ready one day, I think.  I’ll be able to see pictures of her sweet face with a tear-free smile on my own.  I’ll be able to watch the video of her saying “mama” without desperately keening for her.  And instead of being resentful because of the short time I had with Ella, I’ll be able to be grateful for the time I did have with her here on earth - the eight months and seven days I had with the most awesome baby on the planet. 

One day I’ll be able to live with the bad memories because I’ll be able to make my peace with them.  I will truly be able to make peace with God’s will in all of this because His will is perfect though my understanding of it is not.  In the meantime, I’m hoping and praying for a peace that surpasses all understanding, but I have to admit…some days I’d settle for a resignation that numbs even a little bit of this heartache.

St. Ella, pray for us!

The Silly that Keeps Me Sane

I snort when I laugh.  I do.  I snort, and then I laugh harder because I snorted.  I laugh with gusto, and I do a loud and endearingly charming [read:  weird] noise when I try to catch my breath.  If I really get carried away, then I cry and look like I’m hyperventilating.  When I can’t stop laughing, I try to explain to people why I can’t stop, but it comes out like a high pitched, “weeee squeeee heebie jeebie heeeee” kind of noise.  Like I said, endearingly charming.  Heck, my laugh used to scare my younger son when he was a baby.  He would cry because it scared him!  I’m happy to say that he’s grown used to the noise.  He’s had to because I like to laugh and I laugh a lot.

Well, I used to laugh a lot.  Before Ella died, I was very quick to find the humor in situations.  If I didn’t find it, I’d try to create it.  Even when Ella was in the hospital for all those months, I tried to maintain a healthy sense of humor.  I told people that I either had to laugh and keep being the smartass I was born to be, or I would end up in the sitting in the corner, rocking back and forth while sucking my thumb and muttering nonsensically.  Find humor or go crazy - those were the only two options I could imagine for the situation I was in.

I’m finding my way back to the laughter and the humor, but it’s taking me a while.  That I’m doing that much this soon genuinely surprises me.  For the 4 or 5 or 6 months after she died, I felt as though I were betraying Ella by laughing or smiling or making smart aleck remarks.  Granted, there wasn’t a whole hell of a lot to laugh about in my world, but on the rare occasion when there was, I held the laughter in.  If I allowed myself to smile, I only let it show for a few seconds.  It was as though finding humor in anything meant losing a bit of the sadness I was “supposed” to feel.  How dare I be happy?  How dare I enjoy anything anymore?  How dare I smile when my sweet baby girl was gone?  What the freaking heck was so funny anyhow?

……………………………………………………

My husband and I have been married for almost fifteen years.  We met in college twenty years ago.  Though we had a slightly rocky, on again-off again start, we managed to un-ass ourselves long enough to realize that we were much better together than we were apart, and we’ve been together ever since.  We’ve never been the “look deeply into each other’s eyes” type couple.  That type of behavior would probably devolve into a staring contest anyway!  We’re goofballs more often than not, and one of the things we’ve always had together is laughter.  In fact, the priest who married us was worried that we’d be able to make it through our nuptial Mass with straight faces because of how badly we (well…I) lost it during the rehearsal.  Some women are overwhelmed by the type of emotion that causes them to cry tears of joy.  Me?  Not so much.  My husband cracked a joke during the practice vows, and that was the end of that serious moment.  Tears streamed down my face while I laughed so hard that I couldn’t breathe.  I was not only doubled over but also making that endearingly charming noise I mentioned before….ah, memories.

Because my husband is much quieter and more laid-back than I am, people tend to assume that he’s very serious.  Au contraire!  The man has a subtle, dry wit.  He’s not as willing as I am to make a complete butt of himself to get the laugh, but he totally comes up with zingers that just slay me.  Just the other day, we were watching the men’s Olympic badminton match between the USA and South Korea.  When the US did something good – I have no idea what...it’s badminton, for pete’s sake – I yelled out, “SUCKA!!”  My husband turned to me and deadpanned, “You’re what the Olympics are all about.”  He’s so awesome.  My husband and his humor were the reasons why Ella’s information board got started.

Ella spent over five months in the children’s hospital.  Though she wasn’t in the same room the entire time, her rooms all had one thing in common:  an information board.  Medical personnel could post info for patients and the patients’ families, such as doctors’ and nurses’ names, phone numbers, daily goals, etc., and patients could post notes, messages and the like.  Two patient sections that we took advantage of for our own amusement and sanity were the About Me and the Questions I Have sections.  And take advantage of them we did!

 

After about 2.5 weeks in the PICU during Ella’s first hospitalization, we were finally bold enough to write in her About Me and Questions I Have sections for the first time.  I can’t even remember if any staff members read what we wrote, but we did and it made us laugh.  We posted on the board every few days or so until Ella was discharged.  We made it our mission to post only Ella-worthy messages of snark, and I like to think that we succeeded.

When Ella was hospitalized a second time, we weren’t feeling very cheery or snarky.  To say that we were despondent, depressed and completely down in the freaking dumps would not do justice to how we felt.  The humor we expressed previously via Ella’s info board was rooted in the hope we felt – hope for a repaired heart, hope for healing, hope for a return home with our daughter, hope for a life back to as normal as life could be with a heart kid.  We had very little of that the second go around.  Until we were told that Ella could be listed for a heart transplant, we had nothing but a bleak outlook and an uncertain but certainly gloomy future.

It took a few days, but the snark did come back.  I posted this picture on Facebook during the first week of Ella’s second hospital stay, and my mom said that when she saw it, she knew we would be ok.  We obviously used humor to cope with the stress and uncertainty.  So she knew that once we found our way back to the humor, we’d be good to go.  We wrote on Ella’s info board fairly regularly for the first three months, and it was fun to share Ella’s witty messages on Facebook [it was all her, by the way; we just channeled her awesomeness].  As her health deteriorated, her messages became less frequent until they stopped altogether.  The last words posted on Ella’s information board were “Be awesome.”

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I think both my husband and I, whether intentionally or not, have always tried to encourage our boys to have good senses of humor, and do so even now.  We’ll see if that comes back to bite us in the butt down the road, but until then, we like to make each other laugh and we like to laugh together as a family.  I love to hear the belly laughs and the screams and squeals.  Whether I’m tickling my younger son or my husband is jumping out and scaring the poo out of my older son, the laughs are loud and enthusiastic.  I can’t help but join in when I hear those laughs!  I love to make my husband and my sons laugh, but I really love it when they make me laugh.  I especially love it when something so funny was said or done that it makes me laugh just to think of it.

Back when I had the time and inclination, I was a scrapbooker.  Eventually I hope to get back to that hobby again, but it’s too depressing right now.  That said, there are scrapping habits that I can’t seem to break – taking lots of pictures of both everyday life and of special events, buying (hoarding?) pretty papers and nifty paper crafting tools, and writing down the silly things that my boys say or do so that I can remember them and laugh at them later.  For instance, when my older son was a toddler, he called umbrellas “rainbrellas.”  I’m not sure I would have remembered that bit of cuteness if I hadn’t written it down.

I still write down things that make me smile and laugh.  Even in my current mental state, I’ve had the presence of mind to write down the silly things that my boys have said that cracked me up.  And even today – a day that actually started late last night when I cried myself to sleep and continued this morning when I woke up missing my sweet girl something fierce – my boys made me laugh because of their goofiness.  Just by being the silly, fun kids that they are - the types of kids who invent the new Olympic sport of water judo in the front yard - they reminded me to engage rather than withdraw.  They reminded me that it’s ok to laugh, to find joy even if it’s fleeting.  They reminded me that silly is allowed even if it follows quickly on the heels of sorrow.  They reminded me that I am so lucky.

I’m lucky because I get to have chats like this:

                   Me:    Nice outfit.  Very patriotic.

                   11yo: No.  I just did it for the US colors.

I’m lucky because I get to engage in conversations like this:

                   11yo (while looking at a car ad):  0% off?

                   Me:    No.  0% interest.
                   11yo: That means no one cares?

I’m lucky because I get to listen in on exchanges like this:

                   8yo:   Do you think dogs are smarter than cats?

                   11yo: Heck yeah!  Have you ever heard of police cats?!

I’m lucky because my 11yo says things like, “Who are you cheering for – the Japanese or Mars?” while watching the Olympics.  Because when watching a 53-year old compete on American Ninja Warrior, he exclaimed, “Oh my goodness, he has a 4-pack!”  Because when only half paying attention to a commercial for Whale Wars, he remarked, “Why does it have to be whale wars?  What did whales ever do to them?”

I’m lucky because my 8yo inherited my willingness to be ridiculously goofy just to get the laugh, to do crazy dances and make silly faces just to make someone smile, to find joy in making other people smile and laugh.

I’m lucky because the silly that I’ve been blessed with – the dry humor of my husband, the unintentionally funny remarks from my 11yo, the crazy antics of my 8yo – is the silly that has carried me through the darkness. 

I’m lucky because I know that the silliness is really a blessing and that when God built this family, He probably used a healthy dose of silly putty to keep it together through good and bad.

I’m lucky and I’m blessed because the silly that surrounds me, the silly that makes me equal parts nuts and amused, is the silly that keeps me sane. 

St. Ella, pray for us!

In Appreciation of Nurses

She treats your daughter like gold because she truly enjoys caring for her.  She goes out of her way to help with bath time even when your baby isn’t her patient that day.  She gives your daughter a silly nickname because your stinky little girl earned it.  She introduces your baby to Stevie Ray Vaughn music and wagon rides.  She sews a cozy blanket for your baby’s crib.  She knits cute, wee baby booties.  She brings in cute, girly sheets and soft blankets for your baby’s hospital bed because she knows that the hospital room is home for the time being.

He takes time to explain so many foreign medical terms to you and your husband, and then he explains them again and again and again because you just don’t understand.  He becomes instant family because he’s a friend of a friend of yours, a touch of the familiar in such an unfamiliar place.  He checks in on your daughter whenever he gets a short break from his job because he loves seeing her sweet smile.  Before his shift starts, he also comes to hold her and help feed her.    

She takes an interest in your entire family and remembers everyone‘s names.  She chats with your boys and makes them laugh because she knows it’s hard for them to spend another weekend at this hospital with their ailing sister.  She brings you a Mass schedule, a map of the area, a list of weekend activities for the family.  She does the pickle dance for your daughter and the bacon dance with your son.  She talks college football with your husband, and she takes all of your gentle kidding because she knows it’s all in good fun.  She prays over your baby and for you and your family because she knows that it’s been incredibly tough.  She teaches your boys the important life skill of making fart sounds with just a straw and an armpit.  She hugs you because it’s obvious that you NEED a hug, and she accepts a hug from you on a rough day because she understands that sometimes human touch is the best medicine. 

They buy your little girl a sweet Halloween outfit because when they see it, they think of her and just know she’ll be the most adorable lady bug in town.  They bring in clothes, both brand new and hand-me-down, because every little girl should be stylishly dressed and pretty in pink.  They get pit bull fierce while advocating for your child’s care, and they have your baby’s best interests at heart.  They comfort you when you’re scared out of your mind, and they joke around with you when you‘re about to crack from the tension.

They come to the hospital in in the middle of the night on their day off because they’ve heard the horrible, heartbreaking news.  After taking care of your baby for months and months, they can’t help but cry over her with you, anointing her head with their tears and kissing her one last time.  They mourn with you because your sweet daughter stole their hearts in such a short time.  They make a mold of your daughter’s hand and of her foot because they know you’ll need to see them and touch them again one day. 

He helps you bathe your sweet girl for the last agonizing time.  He makes sure you have a lock of her hair, and then he doesn’t leave your daughter’s side when she’s wheeled away for the final time.

She texts you just to see how you’re doing, to make sure you know she’s there if you need her, to say she’s still praying for you.  She helps organize meals for your family during your time of need.  They leave messages on your FB wall and write emails to say they’re thinking of you.  So many of them send cards and private messages.  They visit you on their days off.  They attend your baby’s wake and funeral Mass, and they come from one hour away, two hours away, five states away to be there. 

And though life goes on and there are others to care for, they take time to hang your daughter’s picture in the nurses’ lounge because they miss her sweet smile and will never forget her.

They are nurses. 

They don’t just have a job; they have a vocation, a calling that many of us are unwilling or unable to answer.  Being a nurse isn’t just what they do.  It is who they are.  They don’t leave their work at the office at the end of the day because so many of them carry their work home in their hearts.  They mourn the gut-wrenching losses as deeply as they celebrate the heartwarming triumphs.  They work so hard every day for people they’ve just met, for people who probably don‘t know how hard the work really is, for people they may only see for one 12-hour shift.  They further their educations because they know that there’s more for them to learn.  They want to know all there is to know so that they’ll be better able to help their patients.

My daughter lived for eight months and one week.  She spent a total of five months and three weeks of her life in the PICU, so that meant that I spent five months and three weeks in the PICU.  The nurses we encountered during that time were without a doubt the kindest, most compassionate, most professional people I have ever met.  They were genuine and caring - truly the salt of the earth - and they became my friends and my family.  I knew that if I left for the night to stay at the Ronald McDonald House, my sweet baby girl was in the best hands - hands that loved her, cared for her and did their best for her.  Because of those nurses, my boys will know that, after G-o-d, m-o-m and d-a-d, some of the most important letters in the alphabet are RN.

I can’t speak for all nurses when I say this - heck, I can’t speak for any nurses because I’m not one - but I truly believe that to the best nurses out there, all patients are heart patients, no matter what ails them.  The best nurses, like the ones who cared for my daughter, don’t just mend the booboos you can see or treat the illnesses you can diagnose.  The best nurses truly tend to the hearts and souls of all of their patients and their patients’ families, and they do so with their own open hearts and with their own caring and compassionate souls.  At least, that’s what they did for me, and I know that that’s what they did for my daughter. 

The healing hands and caring hearts of nurses truly do the work of God here on earth.  May God watch over all nurses everywhere, and may He bless them always.

 

St. Ella, pray for us!