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!

The Most Awesome BOYS on the Planet

Because my boys’ soccer and hockey practices are during weekday evenings, I’ve been able to go to the grocery store by myself for the past several weeks.  After a long summer of grocery shopping with two constantly hungry and always energetic boys, it’s been a veritable mini-vacation to cruise through the store at my own pace without the echoes of “Mom?  Mom?  Mom, can we get this? Mom?  Mom?  Are you done yet?  Mom?” up and down each aisle.  I’m not the speediest shopper out there, but at least when I shop alone, I don’t have to wag a finger at a running kid or sternly remind a child to keep his hands to himself or correct both of them for juggling the lemons and limes or even remind a child to please not laugh so raucously about breaking wind in the cereal aisle.

Grocery shopping with my boys in tow can be…well, let’s just say it’s rarely boring.  Too often it’s an exercise in frustration and impatience on my part and in melodrama and apparently severe but as yet completely unnoticed (by me) malnourishment on theirs.  Seriously.  The way my boys ask for every food item that they see makes me wonder if they absorb anything they eat!  And they don’t just ask for the crappy junk food; they want it all, fruits and veggies included.  I try my best to have my coupons prepared and to stick to my list so that we can be in and out of the store in a reasonable amount of time, but when the boys are with me, we always take just a little bit longer than usual.

Let me put it this way:  you know how when you're vacationing with family, that vacation always seems to last one day too long, no matter how many days the vacation is?  You almost always wish you’d left the day before when things were still peaceful and rosy?  Well, that’s how it is when shopping with the boys.  We almost always end up in the store for five minutes too long.

This week’s shopping trip was different, though.  Oh, we had all the corrections and reminders that I mentioned above and then some, but if I had insisted that we leave five minutes before or if I had gotten through the store more quickly, then I wouldn’t have had the opportunity to witness my boys being love and charity in action.  Those extra five minutes made all of their juggling and farting and running worthwhile.

Because of the large number of coupons I use each week, I frequently tell the shoppers in line behind me that they may have a slightly longer wait than normal.  I want to save money, but I don’t want to frustrate the customers who have to wait because of me.  I give them the opportunity to find a shorter line, if they want, before they unload their carts.  Today, however, I didn’t have as many coupons as usual.  So when an older woman in a motorized shopping cart pulled in behind me, I didn’t say anything.  I continued unloading my own cart, handing my reusable shopping bags to my older son to give to the bagger.  When I was done unloading, though, I caught my son’s eye and quietly mentioned that maybe he could ask the woman behind us if she wanted help.

One of the things I really love about my boys is that they are not bashful folks and don’t really know strangers, if you know what I mean.  They are friendly, polite, and fairly quick to say hi to people.  Now mind you, this was a worrisome trait in my younger son when at 3yo he hugged a random gentleman in the bathroom at the city’s baseball grounds!  But still, it’s especially gratifying to see kids - my kids - being nice.  Even when they had to spend their weekends with Ella in the hospital for all those months, my boys found ways to make friends with patients, other parents, nurses, etc.  So when I suggested that my older son help the woman in line, he didn’t hesitate.  My younger son also jumped right in to help. 

 

Oh my goodness, how thankful that woman was!  It turns out that she didn’t have the use of her right arm, so she really did need help unloading her cart.  She was very grateful and made sure to tell me how polite my boys were.  She even gave them each a dollar for helping her out, a payment they didn’t expect but certainly appreciated!

It has become so easy for me to focus all my energy on correcting my boys, on noticing their missteps and mistakes, and on jumping on their imperfections that I miss out on their everyday awesomeness.  It is so easy to become irritated by their childishness that I forget that they are children - my children - who deserve my love, affection, and attention, not my irritation, crabbiness, and indifference.  It is so easy to let myself get overwhelmed by the seemingly constant, 25 hours a day, 8 days a week feelings of their need that I forget how proud I am of them and how proud I am because of them.  I forget for a moment that one of the most heart-wrenchingly agonizing but proud moments in my life is because of them.

We were all with Ella when she took her last breath.  We were all with her, together as a family.  Ella was in my arms with my husband sitting next to me and the boys at our sides.  The room was still crowded with medical personnel, and the priest was there performing Last Rites.  I was aware of all of them, yet it was still so intimate – the five of us still five here on Earth for just a moment more.  We sat together for so long, rocking back and forth, mourning, keening over Ella, kissing her sweet forehead, taking turns holding her.  We were all broken…just broken.

Doctors and nurses came in to pay their respects, to cry with us and to offer words of condolence.  As the doctors and nurses who took care of Ella for most of her life came in to say good-bye not only to our sweet girl but to us, I tried to thank them for all that they did for her, to thank them for all that they tried to do for her.  And while they were sobbing and heartbroken, my boys – my beautiful boys – told them over and over again, “Thank you for trying to save my sister.  Thank you for trying to save her.  Thank you.”

For the rest of my life, I will never forget that moment.  I will never forget that even during the absolute worst moment of their young lives and in the depths of a pain that they could never have imagined, my boys took a moment to say thank you.  I will never forget that feeling in my heart – the feeling of a heart simultaneously shattering from the most devastating pain a parent could feel and swelling with the pride that comes from seeing your kids do something beyond expectation and beyond extraordinary.

It's so odd to me that of all the emotions that I could feel on that horrible day, pride is among them.  It’s the good kind of pride for sure.  It's a pride that comes from the realization that my husband and I may have actually had a small role in developing and raising two kids with such great character; that our influence in their lives thus far brought them to this moment with thanks on their lips and gratitude in their hearts; that in a moment that was bigger than any they had ever experienced, their small voices could make such a huge impact and leave such a lasting impression.  I’m not sure who else heard my boys or who else remembers their thanksgiving.  I hope the nurses and doctors heard it.  I really hope they remember it.

What greater tribute could be paid a parent?  What greater tribute could this mom receive than to be a witness to that type of love and kindness in action?  I complain about the childishness, the bickering, the constant picking.  I bemoan the occasional misbehavior in public, the breaking of wind and the cracking of inappropriate jokes.  I roll my eyes at the constant “mom mom mom mom mom” neediness, but honestly…I wouldn’t have it any other way because I've also been able to bear witness to their random and their purposeful acts of kindness.  I heard them cry out their thanks to nurses and doctors who did all they could to save their beloved little sister.  I watched the incredible way they loved sweet Ella, and I see the love they have for us and for each other.  

I am the mom of the most awesome baby that ever graced this planet and mother to two boys of such incredible character and heart, two boys who are awesome in their own right.  In the grand scheme of things, I can’t think of anything else that makes me prouder.

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.”

……………………………………………………

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!