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