Saturday, December 22, 2012

She Named Me Mama

"Mother is the name for God in the lips and hearts of little children.”  - William Makepeace Thackeray
I am so grateful that I was able to hear and record Ella saying my name, prefacing each “mama” with her sweet squeals.  She named me Mama, and I don't think I've ever heard a sweeter sound than that.  I stood watch over her for more than eight months.  She's been gone for a year now, and every day I'm counting on her to stand watch over me until we can be together again, until I can hold her in my arms again and forever be rid of the ache caused by her absence.
St. Ella, pray for us!

Monday, December 17, 2012

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!

Monday, December 10, 2012

MABOP Monday

Ella wore the blinking nose well

This blinking red nose was a gift from my sweet friend K.  It was a bit cumbersome for Ella's wee face, but I’m so glad we got this cute photo while she wore it.
St. Ella, pray for us!


I was decluttering a purse (again) when I came across a ratty, folded piece of tape with two small knots of brown hair in it.  When it dawned on me what I was holding, it took my breath away for a second, but it didn’t knock me sideways as I imagine such a discovery would’ve a few months ago.  Instead of losing momentum and being overwhelmed by memories and grief, I simply set the tape aside.  Careful not to accidentally throw it away with all the old receipts and bits of trash from my purse, I continued decluttering.  I then placed that piece of tape in our Ella memory box.

When Ella went back to the hospital for her second and final time, she had a full head of wavy brown hair.  Little girl had some awesome hair, and I had looked forward to watching it grow in, curious to see what it would finally be like – straight, curly, kinky, soft, coarse?  Who knew?  I just knew that she was a beautiful baby, and her sweet head of hair added to her beauty.

But spending most of her time in bed, in a hospital bed no less, wreaked havoc on her hair.  We were never 100% sure, but we believed that the stress of hospitalization and probably the variety of medicines she took greatly contributed to her hair loss.  She started losing almost all of her lovely hair until all that was left on her head were wispy strands.  To add insult to injury, the hair she did have on the back of her head developed knots that were too far gone to comb through.  Those knots had to be cut out of her hair.  That’s how Ella came to have her first haircut, and that’s why those knots were saved in a ratty, folded piece of tape.


While we were at the hospital with Ella, my husband and I were required to wear purple plastic wristbands, labeled in permanent marker with Ella’s patient ID number.  The bands identified us as parents of a patient.  We also had similar wristbands as residents of the Ronald McDonald House, though they were yellow.  We wore these bands for the entirety of Ella’s hospitalization.  By the time we were finally home, the wristbands were pretty worn.  Months had passed since the bands were first placed on our wrists, so the colors were faded, the edges rolled, the ID number no longer quite as clear or dark.

My husband and I had worn similar wristbands during Ella’s first hospital stay and had removed them upon bringing her home.  We were finally home with our sweet girl, and even after those “short” five weeks at the hospital, the bands were nothing to look at.  A bit on the ragged side and no longer needed, we didn’t give their removal a second thought.  We wanted to get on with the business of living at home as a family and no longer needed to be easily identified as PICU parents.

Unlike our homecoming that first time, we didn’t immediately remove the bands after Ella died, when we were finally home again but without our baby girl.  In those first days upon our return, we were still too shell-shocked and too numb in our grief to think about something as trivial as wristbands.  When we did finally think about it and talk it over together, both my husband and I had already privately decided that we weren’t ready to cut off the bands.  We weren’t ready to remove that symbol of Ella’s life at the hospital, to remove the outward signs of our roles as parents of a sick child.  We weren’t willing to let go of something, even a small, dirty, seemingly insignificant sign, which represented the place that had been her home and the time that had been her life.  We wore those bands when she was alive.  To cut them off would be to acknowledge how unnecessary those bands would forever be.

My husband and I wore those wristbands for several months following Ella’s death.  The yellow RMH band was amazingly sturdy, lasting through all manner of activities, but the purple PICU band took a beating.  It peeled, its layers separated and the formerly purple shade replaced by a paler, discolored version of itself.  We tried to use tape and glue to keep our bands together.  Toward the end, my husband’s band finally gave up the ghost; mine was held together by paper clips and sheer willpower.  Those raggedy wristbands had surprising staying power.  It was only after both of my husband’s wristbands had finally fallen off in October, well over a year after they were first placed on the wrist, that I considered removing mine.

October was a rough month from start to finish for my husband and me.  Not only was I dealing with my second cold of the season, but I was also grappling with a frustrating bout of writer’s block.  In addition, my husband and I were bracing ourselves for two anniversaries, the one-year anniversary of Ella’s adoption day and the ten-month mark since her death, anniversaries that happened to sandwich my husband’s birthday.  Last year I had jokingly told my husband that I got him a daughter for his birthday, so how could he ever top that?  This year we didn’t feel much like celebrating any of it.  To top it all off, we were mentally preparing ourselves for a return to the children’s hospital where Ella died.  It was a lot to handle mentally, emotionally, and spiritually, all in one very somber month.  It was only when we as a family decided to return to the hospital for a service of remembrance that I considered removing the wristbands.

Surprisingly, my boys had more of an issue with the removal of my wristbands than I did.  They knew that I had been thinking about obtaining a more permanent reminder of my sweet Ella, so they didn’t want me to remove the bands until that reminder was in place.  It was time, though, and my decision was made.  I brought scissors in the car, and I cut the bands off during the drive to the hospital.

There are so many reminders of my sweet Ella in my everyday life.  There are so many things that keep memories of her so close to the surface, whether it’s something as obvious as her picture on the fridge or something as subtle as a random line from a random song on the radio.  There are so many reminders; yet there are so few relics.  There are so few things that she touched or that touched her, so few things that were strictly Ella’s or here because of Ella.  And it is because there are so few that it was difficult to let go of one, even a ratty plastic wristband or knotted hair in a folded piece of tape.

When you can’t hold your little girl anymore, you cling that much tighter to what you can hold – the reminders that you keep around you, the items that touched her and that were a part of her short life, the relics that didn’t go into the grave with her.  You cling to them, and you try to be grateful for them because they give you something of her being that is tangible - annoying in their seeming insignificance, invaluable only to you, painful because they are not her, but tangible nonetheless.

Perhaps the wristbands were less relics and more reminders.  Perhaps…but the relics we do possess have value beyond measure.  We will be eternally grateful to the two off-duty nurses who came to the hospital on the night Ella died not only to offer their condolences and say good-bye but to take time to make molds of Ella’s little hands and feet.  Such poor substitutes for her sweet, graceful hands and her cute, kicky feet, but we are so grateful for those substitutes!  We are so thankful for the nurse who not only accompanied Ella’s sweet body to the morgue but who made sure to obtain a lock of her hair for us.  I’ll never be able to brush her hair or put big, pink bows in it, but I have a lock of hair from her beautiful head.  I am grateful for those relics, even if they stay packed away in a memory box for now.  I might not look at them often, but I know that they are there.

Yet when I look at any of Ella’s old clothing, I will probably always experience a twinge of regret.  All of her dirty laundry was cleaned shortly after we came home.  Such a simple task, doing the laundry, but when you’ll never again be able to soak up the scent of your baby, such an oversight is lamentable.  That’s why the jacket I was wearing when I held her for the last time won’t be washed or worn again, the small stains from her tears and her boogers still on the shoulders from when I held her most of her last day.  That’s why the shirt my husband was wearing when he held her for the last time still hangs unwashed and unworn in his closet.

And that’s why Ella’s beloved daddy blankie was not buried with her but instead remains in our room on my pillow, so I can hug it to myself, so I can cover my face with it to try to figure out why in the world she liked to sleep that way, and so I can kiss it goodnight as I whisper a prayer to my saint.

Thinking about all of this and writing it down - exposing all of this to you - makes me wonder if I’m not taking it all a bit too far.  Am I going overboard in my attachment to things, or is this the norm?  Is this just a part of grief – the desire to hold on to everything, to cling to these relics as though they’re life preservers, to assign value simply because of who touched them rather than because of what they are?  Is it wrong to be so materialistic when the materials you covet are the ones your daughter touched?  If it is wrong, I don’t plan on being right.  I don’t plan on letting go of these relics anytime soon.

As the first anniversary of Ella’s death approaches, I’m sure I’ll be thinking more and more of the reminders and relics we have from her too-short life.  The grief I thought I had under control is much closer to the surface now, and I have at times a tenuous grip on my emotions.  But I’m trying to be understanding and patient with myself.  I’m not necessarily embracing it, but I’m not hiding from it nor am I hiding it from family.  When the topic of Ella came up in conversation at the dinner table causing more than one of us to cry, we talked through the tears, unembarrassed to still be so sad and to cry so easily.  When I sobbed in my bathroom the other afternoon for missing Ella so desperately, I welcomed the long hug and the comfort that my 11yo offered instead of hiding the sadness or isolating myself until the ache subsided.  And when I cried during Mass on Friday, I didn’t try to stop the tears; instead, I let them flow and cried out to the only One Who can heal this pain, “Oh my Jesus, I miss her so much!”

I cling to the relics that I have from my sweet saint.  For today it is enough to know that they are there for the holding if the need arises, if the heartache lessens enough for me to see that small hand mold and to touch that sweet foot mold, if the memory of saving that silly knotted hair brings a smile rather than a tear.  Perhaps one day I’ll decide that the worn out wristbands, long removed from my arm, can finally be thrown away, having served their purpose but no longer needed.

These relics are temporary, treasured only for as long as her memory is alive.  But the one relic of my sweet Ella’s life that I’ll treasure more than any is one that I may not be able to see or touch but can most certainly feel.  I will treasure the intangible relic that was her love and that is my love for her.  A love that powerful and that deep and that true does not end with death.  A love like that is.  It doesn’t become worn with age, and unlike the relics that remain in Ella’s memory box, it can be freely shared and felt by others.

The love that my sweet saint blessed me with is truly the finest treasure of all and is the only relic that I’ll be able to take with me when I see my Ella again.

St. Ella, pray for us!

Tuesday, December 4, 2012

Monday, November 26, 2012

MABOP Monday

Say what you will about the ginormous flower, but my Ella made it look good!

St. Ella, pray for us!

The Weight of This Cross

This Thanksgiving my family and I went to my parents’ place for the first time in five years.  Oh, we’ve seen them in the intervening years, of course, for holidays, special occasions, the funeral, but they always traveled to us.  I am not a big fan of flying, what with the taking off, the flying tens of thousands of feet above the earth, and the landing.  But flying was worth it to see my parents on their turf, to hang out being the kid again, to have good talks and tell jokes in person, and to get the hugs you can only get from your mommy and daddy.  It was such a good visit, and I was so thankful simply for being home and for just being with them.

My parents are the reason why I was able to go to Mass this past Tuesday.  Their steadfast support of me, especially during these past eleven months, and their unwavering faith in the face of excruciating personal pain and devastating loss are examples I take to heart and the type of example I hope to be for others one day.  On Tuesday, almost eleven months to the day of Ella’s death, we attended the funeral Mass of a sweet baby girl named Lucy, who, at almost seven months old, died of health complications she had battled since birth.  Her parents are friends of my parents and are their fellow parishioners.

Up until the moment we got into the car, I waffled internally about whether I would even go to the funeral.  My own grief is still so fresh, so raw.  In the grand scheme of things, eleven months is not so much time, but when that is the time you’ve counted since your own baby girl died, then it really is no more than a flash, a momentary blink of the eye, even as it seems an eternity.

I waffled, but I then decided that I must go.  I had to be there to unite my prayers with the community that would mourn Lucy’s death with her parents, the same community that prayed with my parents for my sweet Ella.  I wanted to express how very sorry I was for their loss and to say that even though I don’t know exactly what they’re feeling, I sort of do. I had to be there to cry once again for my own sweet saint, for my own loss that I still feel so keenly, for my Ella whom I mourn and miss every day. And I wanted to hug this newest, heartbroken mother of a saint.

There is an undeniable truth that all moms know.  Whether their children grew under their hearts or in them, upon being placed in their mother’s arms for the first time, they forever take a piece of their mom’s hearts with them.  That is why we moms feel everything so deeply when it comes to our kids - why we feel their joys so intensely, their pains so sharply, their disappointments so profoundly.  When our children took a piece of our hearts, we moms lost the right to feel selfishly.  We lost the right to withhold our own hearts from another person.  They took a piece of our hearts, while at the same time, we gladly handed our hearts to them.  There is nothing on this earth quite like a mother’s love, but that also means that there is nothing on this earth quite like a mother’s loss.

Too often I think that our society views pain - or the prospect of pain – as something to be avoided at all cost.  We view suffering as meritless, as though there can be nothing redemptive about it.  We don’t give ourselves enough credit for the capacity with which we can give and receive love or the compassion we can freely and wholeheartedly offer to those who suffer or to those with whom we share suffering.

When push comes to shove and we are forced by circumstances beyond our control – storms, floods, etc. – to accept suffering, to deal with it head on, we do so with gusto and a level of commitment that staggers the mind.  Just look at the can-do attitudes of those devastated by recent epic storms.  An act of God wreaked havoc on their lives, but “by God!” they are going to carry on.  They are going to get up, move forward, and do what has to be done.

Why not then for these greatest acts of God among us?  Why not for our unborn children?  Our unborn kids already have targets on their backs and are offered all too frequently on the altars of convenience and “it’s just too hard.”  Those targets only get bigger when those children come with difficult prenatal diagnoses of physical or mental imperfections.

Why can we not extend that same compassion and can-do spirit to their lives, however short those lives may be?  Do they not deserve the best we have to offer, and shouldn’t our best include all the love we can give and any sacrifice we may be required to make?  Don’t these kids deserve every ounce of compassion we have and then some?  Why do so many rush to solve inconvenient “problems” by ending lives instead of saying, “Yes, I will fight.  I will try.  Even in the face of terrible, incredible odds, I will give you my all because you are a person.  You are a worthwhile and precious act of God.”

One of the cheesiest movies I’ve seen in the last decade is “A Walk to Remember.”  That it stars a pop star from the early 2000s should tell you that it weighs heavy on the cheese scale.  That said, it contains one of my favorite lines: “Without suffering, there would be no compassion.”  Think about that for a minute.  Whose suffering?  Mine?  I’m a miserable hag when it comes to suffering!  I might offer it up, but I’ll likely do it a bit grudgingly, and even then, you’ll hear about it!  No, my suffering doesn’t elicit my compassion.  The suffering that draws compassion is that of others.  Please don’t get me wrong; I wouldn’t wish another to suffer simply so I could put on a great display of compassion!  But we live in a fallen world corrupted by original sin.  We exist this side of Heaven; therefore, we exist in a world full of suffering.  We are surrounded by it.  How frequently do we turn a blind eye toward suffering when it is neither in our face nor on our TVs but is instead in the womb?

When we adopted Ella, we had no idea that she had multiple congenital heart defects (CHD).  All we knew was that we loved her before we knew her.  We loved the idea of her, and when she was placed in our arms, we loved her forever and unconditionally.  That we did that much in light of her seriously complicated medical condition and that we eagerly finalized her adoption astounded some people.  I distinctly remember one man’s reaction upon learning Ella’s story.

We were at the Ronald McDonald House (RMH) for a dinner that had been provided by a local church’s adult Sunday school group.  As was common practice, various church members spoke to the RMH residents to hear our stories about our children and then to ask if they could pray for us.  As hard as it could be to talk about how sick Ella was, I was always glad to have more people praying for her.  I explained that my daughter was waiting for a heart transplant, and as usual, I then explained that we hadn’t known about her CHD before her birth, we had adopted her, etc.  During this conversation, a young man and his wife sitting at my table were listening.  The wife was a believer, but the husband wasn’t and also seemed to be skeptically disdainful toward believers.

Later, the young man asked about Ella.  He just couldn’t seem to wrap his brain around the fact that my husband and I proceeded with Ella’s adoption even after we found out how sick she was, that we chose to love her because of who she was and not because of what she had or didn’t have, that she was our child – our blessed act of God – in spite of her sick heart and including her sick heart, that we could not remember our lives before her or imagine our lives without her.  It amazed me that a man whose own child was ill at the hospital would not be able to see past the circumstances of our daughter’s arrival to our family.  Just as abortion would never have been a consideration had Ella been conceived in my womb, abandoning her to her CHD was never a consideration either.  She was our daughter.  She is our daughter.

Given the option, I never would have purposely chosen this hellish pain or endless suffering, but would I choose to live without it if so choosing meant that I would never have known Ella?  If it meant that, while I would remain untouched by the pain of infant death, I’d also remain untouched by the love of the most awesome baby that ever lived?  If so choosing would eliminate the impact that her sweet life has had on my life and on the lives of my family and friends?  Of course not!  I wouldn’t trade a second of my short time with Ella for anything, not even blissful, pain-free ignorance.  I don’t think any of the mothers of saints that I know would trade this daily pain of loss for the time with which they were blessed with their children.

A while back, my mom heard a priest quote his mother, saying, “The Lord didn’t tell us to drag our cross and follow Him.  He said to carry it.”  When we choose to love our children unconditionally, as parents are called to do, we choose to bear the weight of a cross.  Love isn’t just some feel good, mushy, fluffy emotion that we shrug off when it becomes hard.  Love is choice.  Love is sacrifice.  Love is not focused on self but on other.  And we don’t get to choose how much the cross of love – of parental love - weighs.  Sometimes carrying that cross feels like more than we can bear, especially if we are also bearing the weight of our sick child’s cross.  It is so heavy, so painful, so overwhelming.  But who among us would walk away from that cross?  Who would look her child in the eyes and say, “You’re on your own, kiddo.  I am too tired and too weak.  You’re just not worth it”?

Since Ella’s death, I have tried and failed and tried again to unite my suffering with that of Christ on the cross and to offer up this pain for my family, for my friends, for myself, for Him to do with as He wills.  I try, but so many days I feel as though it’s enough that I’ve peeled myself up off the floor.  I grew up hearing my mom say, “Offer it up!” so often when I was faced with pain and disappointment, but I never before felt that I had to “offer it up” so many times a day, so many days a week.  But I continue to try, and every time I try and fail, I offer it all up again – the pain, the frustration, the anger, the loss.  I offer it at the foot of His cross because how much more did He bear for me?  He fell.  He got back up.  Can I do no less?

This Thanksgiving holiday, I went to a funeral.  I went because I have to believe that there’s a reason bigger than I can see or understand for the cross that I’ve got to bear.  I’ve got to believe that Lucy’s life, like Ella’s, wasn’t in vain, and that my suffering and the suffering Lucy’s parents must endure isn’t in vain.  We chose our children’s lives, and in choosing, we chose to accept and to live with the inconvenience of their imperfections.  We chose to love them, our sweet acts of God.  We chose to see them as the whole of their parts, not just to dismiss the parts that were imperfect.  I went to a funeral because this world is corrupt and quite obviously not Heaven, but being in the presence of Jesus Christ in the Holy Eucharist is as close to Heaven as I can get while on earth.  I went to a funeral because we mothers of saints have to support each other.  We have to be willing to offer the same compassion to each other that we offered to our children.  We have to show this imperfect world that sometimes inconveniences are the greatest blessings one can ever experience.

I went to a funeral this Thanksgiving because I am thankful for the life of my daughter and for the life of Lucy and for the lives of all those wee saints who have gone before me.  By the grace of God, I made it through, and for the glory of God, I would do it all again.

St. Ella, pray for us!

Thursday, November 22, 2012

A MABOP Thanksgiving

Sweet Ella smiles

However sad I am because my sweet Ella isn't here in my arms, however much I ache for missing her every day, I can't help but be thankful for every moment of the eight months, seven days and twenty minutes of her precious, beautiful, irreplacable life.

St. Ella, pray for us!

Thursday, November 15, 2012

The Writer Writes

So it’s been a while since I sat down in front of the computer to write.  Oh, I’ve wasted many, many hours in front of the computer over the five weeks, but I haven’t written much of anything and certainly nothing to write home about.  I don’t think my dazzlingly witty Facebook status updates count, which is a shame because they are awesome.  ;)  But actual writing, like the kind you can sink your mental teeth into, has escaped me.  When I finished writing my last post on letting go of why, I hadn’t realized that I would also be letting go of my writing mojo.  I hadn’t realized how elusive inspiration would be, and I certainly hadn’t intended on taking more than a monthlong break.

When I started this blog, I intended to write for myself.  I needed to figure out a way to wrap my brain around living this new reality of mine, and I needed to get the seemingly endless barrage of thoughts out of my head.  I had hoped that I could maybe help others along the way, too, if only to give them a place to say, “Yes…this.  These thoughts could be mine.  These words could be mine.”  I still wasn’t ready to talk to anyone in a professional capacity about the hell I was going through, but I knew that the thoughts that occupied my mind and that I was obsessing over had to go somewhere.  Writing, and by extension blogging, just made sense; plus my handwriting is utter crap, so keeping an actual journal was out of the question.  So better out than in, right?  Even I, as skeptical as I’ve been with regard to therapy and embracing the couch, so to speak, knew that something had to give.  I had to find a release, a way to vent what I was thinking and feeling, or suffer the mental and emotional consequences.

But the well dried up.  I had boopkas.  Nada.  Zero.  Zilch.  Oh, I still had the random thoughts at random times of the day and night, but I no longer had any focus, not that I had much to begin with!  I had no real way to rein in those thoughts.  Worse yet, I suddenly had a wicked case of apathetic procrastination with regard to writing.  I wanted to write, but when it became a bit more difficult to do than it had been in the past, I just said, “meh.  Whatev.  I’ll do it tomorrow.”  Well, tomorrow took five weeks to get here.

Even though I didn’t start this blog until this past June, I had started writing a few months before then.  I knew the blog was an eventuality, not just a pipe dream or an idea, so I wrote knowing that the essays would have a home here whenever I got around to creating “here.”   I wrote at a time in my grieving process when I still didn’t want to be social.  Not only did I not want to be social, but I really went out of my way to avoid human interaction.  I avoided forced social situations with others, whether at my boys’ school, our church, the hockey rink, etc.  At the time, writing was as social as I wanted to be and blogging was as much interaction as I could tolerate.

I think I’ve always given the appearance of an extrovert, even though I consider myself a closet introvert.  I can be loud, funny, and boisterous within the confines of a group of friends with whom I’m comfortable, but I’d really prefer to be at home sitting on my sofa wearing comfy pants while reading a book or crocheting a scarf.  If I do go out for fun, I often prefer to be with only a few friends at any given time to save myself from becoming overwhelmed.  When Ella died, my closet introvert came out of the closet only to run back in and hide.  It took a very long time for me to feel somewhat normal in public, to feel like it was ok to be a smartass on Facebook again, and to feel like I could be me without also feeling like I was wearing my brokenness on my sleeve.

When I was writing a little more regularly, I was giving an outlet to the pseudo-extrovert in me from the safety and introvert-ish comfort of my own home.  Writing was my new way of being social.  It was my way of connecting with people without having to actually connect.  But now that I am making my way back to a more normal, even slightly pre-Ella version of me – the me that hangs out with friends at the park, that not only goes to the hockey rink and the soccer field but cheers obnoxiously LOUDLY for my boys and their teams, and that truly enjoys coming up with whacky, snarky things to share on Facebook – I’m struggling with putting words to paper.  It’s not as though my time with friends is spent pouring out every thought that would have been written or hashing out the emotional demons I wrestle on a daily basis.  I’m not sure why, but I think just having the option – or rather, being open to the option that’s always been there - of spending time in the real world with real people means that the drive to spend time writing has diminished.  But man, I hadn’t realized how much I would miss having easy access the writing outlet!

A friend of mine dropped me a line the other day, saying, “Not to sound like a caseworker or anything, but you're sounding about 1000% better these days. I think it's awesome.”  It was nice to read that because there are so many days when I still feel like such a poseur, when I feel like the smile on my face is a fake one and the snarky sarcasm and wit are just fronts to hide what I’m still feeling so much of the time.  I found it a bit ironic that his note came the day after I stood in the kitchen sobbing in my husband’s arms for missing Ella so much, the day after a song on the radio made me cry while driving because I couldn't hear it without thinking of and missing my girl.  I’m awesome and getting back to normal…except when I’m not.  And when I’m not, I’m really not because it comes out of nowhere and hits me like a ton of freaking bricks, giving me no time to brace myself for it.  But I couldn’t help but wonder if the fact that I was finally inching my way back to “normal” went hand-in-hand with not being able to write.  Crazy thought process, I know, but could it be that I can only write when I'm teetering on the edge of mental and emotional stability?

So I missed writing, but I figured that instead of trying to force it, perhaps a small break was in order.  When the drive to write sputtered to a complete halt, though, I didn’t really know what to do to get it back.  Then it dawned on me:  to be a writer, one has to actually try to write.  To be a writer, one has to actually sit down in front of the computer or pick up a pen and physically try to write.  Brilliant, no?  Profound, yes?  I’m so deep.  ;)

While I was walking the other morning, I recalled a scene from Sister Act 2 in which Sister Mary Clarence says to one of her students, “If, when you wake up in the morning, you can think of nothing but writing, then you are a writer."  That line was actually taken from Letters to a Young Poet by Rainer Maria Rilke, but these days I’ll take my inspiration where I can get it, even if it’s delivered by Whoopi Goldberg in a really cheesy movie.

It took several wordy words to get here, but the point is this:  I like writing,   I think about writing a lot, and I want to write moreI want to honor Ella’s memory with my writing, but I also want to be able to use my writing as a way to explore this still unfamiliar territory of being a saint’s mom.  I believe I’ve got more to say and more to share.  I’ve just got to actually physically do it now.
This writer's got to write.

St. Ella, pray for us!

Wednesday, November 14, 2012

MABOP Monday-ish

I think even Ella was overwhelmed by all the girly-girl PINK, but she made it look so good!

The boys had a day off of school on Monday, which distracted me from posting.  Then Tuesday came and went.  So this week’s MABOP Monday is just sort of Monday-ish.  Plus, MABOP Hump Day just doesn't have the same ring to it.  ;) 

St. Ella, pray for us!

Monday, November 5, 2012

MABOP Monday

Even a slightly blurry photo couldn't detract from her beauty

St. Ella, pray for us!

Monday, October 29, 2012

MABOP Monday

 Her smile lit up every room she was in and the hearts of all who loved her

St. Ella, pray for us!

Tuesday, October 23, 2012

MABOP Monday

Smiling for mommy even though she made you wear a silly hat...

But really thinking "can you believe my mom made me wear this silly hat?!"

St. Ella, pray for us!

Monday, October 15, 2012

MABOP Monday

Ella & daddy blankie - she always slept better when she could snuggle with her blankie

One of the awesome PICU nurses took this picture of sweet Ella for us. We were at Mass on a Sunday when we received it via text. It was so nice and reassuring to see our wee girl taking a snooze with her beloved daddy blankie :)
St. Ella, pray for us!

Tuesday, October 9, 2012

Letting Go of Why

I am a fairly ADD house cleaner.  I will start cleaning and decluttering one room and will end up in a different room entirely by the time all is said and done, neither room 100% clean.  I am also a behind-closed-doors cleaner.  I’ll clean the heck out of drawers, closets, cabinets - basically any place that can be hidden once it’s clean.  When you combine those two cleaning styles, you get very neatly organized, somewhat random locations that no one will ever see because they are completely closed off from view.

My kitchen pantry is very organized, but it’s behind a door that I prefer to keep closed.  The cabinet underneath my bathroom sink is very orderly, and my well-organized toiletries cache in the linen closet is ridiculous!  But no one will ever see these things, nor would anyone care to see them.  As for the rest of the house… let’s just say that it’s a work in progress.  For whatever reason, if I can see it, I can’t seem to clean it.  I get overwhelmed by how much needs to be done, so I choose to tackle the smaller, doable jobs that require less of my focus, the orderliness of which will only be seen and appreciated by me.

And yet of all the small, only ever seen by me places that I should be able to maintain, my purses are the messiest.  Grab any purse from my closet, and you’re bound to find it cluttered with a plethora of useless, unused junk, the likes of which will be found in duplicate in my other bags.  It’s too easy to jam those receipts into my purse rather than throw them out.  It’s too easy to grab another pen from the jar on the counter on my way out the door than to use the one or two or five that already live at the bottom of my bag.  And the extra, unused napkins from a quick meal at a fast food place?  Well, you can never have too many of those at your disposal, can you?

A few months ago, I went through all of the crap that had accumulated in one of my purses – receipts, bits of paper and notes that hadn’t been thrown out, old gum, napkins and straws, hand sanitizer and lip balm, pens, etc.  It was a task that was long overdue, but the only reason I even cared enough to do it was because I needed to use that particular purse at that moment, not because of any overwhelming desire to declutter.  It is amazing how much junk one purse can hold!  It’s also amazing how lazy I can be with regard to cleaning out that junk on a regular basis.  Because having to dig through all of that trash is obviously a better option than using a real trash can, said no one ever.

I emptied the whole purse onto the floor and started cleaning it out.  It wasn’t just any purse, though.  It was the purse I had used for the five weeks that Ella was in the hospital during her first stay in the PICU.  Going through the piles of receipts and such was akin to taking a painful trip down memory lane.  It wasn’t so much the papers and receipts themselves that were difficult to look at so much as the dates on them - those days last April when we felt as though the floor had fallen out from under us, when we didn’t know what was going to happen to our brand new baby girl, and when “WHY?!” screamed through our hearts and minds even as we were left speechless at the situation with which we were faced.

As I sorted through the large pile of junk, I examined each item pretty carefully - so many receipts for coffee and hospital fast food and coffee!  Any time I must look through old receipts, I shred as I go because you can’t be too careful these days with your personal information.  And because I wanted to know what I was throwing away and didn’t want to inadvertently get rid of anything important, I was forced to read – really look at – each bit of paper.

Two pieces of paper in particular took my breath away.  The first was the note from the pediatrician after Ella’s first doctor appointment.  Ella was five days old at the time, so the note had the usual newborn baby checkup information on it – weight, height, head circumference – but it also had a few comments.

“Doing Great!  :) x2”

We’d been told that the doctor heard a heart murmur, but other than recommending that we go to a cardiologist and saying that it might be an “innocent” murmur, our baby was apparently doing great.

The next piece of paper I came across was a credit card receipt from the cardiologist’s office for our daughter’s first echocardiogram (echo).  The cost was staggering, but what truly rocked our entire world was how quickly we went from “Doing great!” the day before to “Your daughter has multiple congenital heart defects.  She is in heart failure.  It would be quicker for you to drive her to the emergency room than to wait for an ambulance.”

Oh Lord, why?  Why why why why why?  We waited so long to bring our daughter home.  We went through so much heartache and trouble just to get to that point, and we jumped through so many hoops and over so many hurdles.  We loved her from the moment we heard about her, and we couldn’t wait to just love on her at home.  WHY?

Five weeks in the PICU and one major, risky, complicated surgery later, and we were finally on our way home again.  Praise God!  The day we had waited for had finally come.  There were medicines to give every day and quite a few doctor appointments each week, but we were finally home…until we weren’t.  About two and a half months after we got home from the hospital, we found out via another echo at the cardiologist's office that Ella’s heart was failing.  Again.  She had to go back to the hospital.  We weren’t sure how long this stay would be.  Heck, we didn’t know if another surgery would even be possible.

It wasn’t.  Our baby girl was listed for a heart transplant.  And so we waited and prayed and waited and prayed and waited, but the transplant wasn’t meant to be.  A healthy heart never became available, and Ella’s poor, sick heart couldn’t work that hard anymore or wait any longer.


Why did God bring us to this point?  Why did our sweet girl have to endure this?  Why did she have to suffer so much?  Why didn’t God heal her?  Why didn’t He keep her alive until a heart became available?  Why didn’t He perform a miracle?  Why didn’t He answer our prayers or the prayers of countless people praying for her?


Why bring her to us only to take her away?  Why answer our sons’ prayers for a baby sister only to then call her Home?  Why bless us beyond measure only to seemingly then say, “Oops.  Never mind.  I take it back.  I take her back”?


Just when I think I’m healing, just when I think I can mourn gracefully and peacefully, just when I think I can get on with the business of living, the WHYs rear their ugly heads, and I have to confront the anger I thought I’d let go of or at least had under control.  I get so freaking angry with God for breaking my heart, yet I know He’s the only One capable of healing it.  But for healing to happen, I have to let go of the WHYs that plague me.  I have to accept that NO answer on this earth from any human will ever suffice.  I have to accept that, for now, NO answer even from Him would ever suffice.  I have to accept that my WHYs will never be answered with any acceptable “because….”

And that is truly one of the hardest parts of grieving for me – trusting that God’s answer to all of my WHYs may never be mine to know in this lifetime.  I have to trust and believe that His perfect will is mercy and love itself, even if that same mercy and love is hidden in a fog that these poor, flawed human eyes can’t see through.  I have to learn to trust that His will is perfect but that my understanding of it is severely imperfect.  Because in my “perfect” world, my beautiful daughter would be alive and well, toddling around, babbling at me, smiling and laughing with her brothers, hugging her daddy and dancing with him, and being the most awesome baby on the planet.

Oh, those WHYs are such a stumbling block for me!  For as much as I beg for God’s help in letting them go, I also cling to them because sometimes it feels as though I’ve got very little else to cling to.  If I cling to them and to the anger at the injustice and unfairness of it all, then I keep one small part of my reality at bay – that there is nothing left for me to do but accept the facts, to accept the truth of my situation, to accept that this nightmare is reality, to accept this life as a mom of two-plus-one-in-Heaven.

Up until the moment of Ella’s death, I think I’d had a fairly “easy” life.  There were definitely other moments of why that I had grappled with, but I had learned to live with them.  Even in our marriage, my husband and I faced WHYs that on the outset seemed insurmountable.

We were open to life and wanted lots of kids.  Why could we never get pregnant?

We were open and upfront about our Catholic faith.  Why were some Christian adoption agencies only willing to work with us if we lied and said we were “Catholic in name only?”

We were willing, able, and eager to share our lives with a child via adoption.  Why were we previously scammed by a birth mother who never intended to place her child for adoption but just wanted the easy money?

We were more than willing to disrupt our lives for an indefinite amount of time to make sure Ella got the best care.  Why wasn’t that enough for her?

My husband and I had had what we thought was our fair share of whys to struggle with, but we somehow managed to turn those problems of why into happy solutions.  We had talked about the adoption option before we were even married, both of us feeling called to it and open to it.  So when it turned out to be our only option, we felt so blessed that God had placed the desire to adopt on our hearts so many years ago.  When we were turned away from two different adoption agencies because of our faith, we felt blessed when we found one that would work with us.  When we were heartbroken and depressed to learn that a birth mother we’d been working with had given birth and then skipped out without a trace, we thought that was maybe a sign to give up on the idea of ever adopting again until we got the call that Ella had been born and was to become our sweet daughter.

But when we were brought to the point of her death after all the WHYs we had conquered and overcome along the way, we were left with even bigger WHYs and even less chance of receiving any kind of acceptable answers or of reaching any happy solutions.

If I know me like I know me, then I know that my struggle with letting go of why is one I will deal with for the rest of my life.  I hope that’s not the case because it’s a helluva way to think and to feel and to live.  It’s painful - really physically painful - to understand that my WHYs will go unanswered.  It is so hard to give it all over to God, to let it go and let Him be in charge and to let His will stand.  It is so hard to go from shaking an angry fist toward Heaven to bowing down at the foot of the Cross to unite this unimaginable suffering of mine with His.  It is so hard…

I am trying to let go of why.  I am trying to live with the incomplete answer of “because…”  But I think in order to come close to doing that, I’ll have to say with every breath I take, with every ounce of my being, with everything I have in me, “Not my will but Thy will be done.”  I’ll have to say it, and with God’s good grace and a strength that only He can give, I’ll come to believe it.
St. Ella, pray for us!