Monday, March 11, 2013

MABOP Monday

Sweet like Daddy is right!



I just spent a few minutes looking through our Ella pictures so I could find just the right one to post.  All those beautiful photos just made me miss her more.  My sweet baby girl...


St. Ella, pray for us!

Tuesday, March 5, 2013

MABOP Monday

Joyful, gleeful, sweet smiling Ella



Ella could have given classes on how to smile.  She used her whole face to smile and her whole kicking, squealing, squirming body to show joy.  My sweet girl embodied JOY.



St. Ella, pray for us!

Sunday, March 3, 2013

I Love You from a Distance

My younger son attends a local Catholic school.  He has really enjoyed his time there and is thriving in the classroom environment.  My family and I feel blessed by his experience thus far, especially since the kiddos in his class truly supported him and loved him through his grief after Ella died.  Catholic school has been great for him, but as is the case with any private school, we do pay a price for sending him there.  In addition to the obvious costs associated with Catholic school – annual tuition and book fees, uniform expenses, gas money driving him there and back – there are some not-so-obvious ones, such as fundraising “opportunities” that pop up every few months.  Another less obvious cost arises from service hours that each family is required to fulfill.  Each family must volunteer 20 service hours during the school year.  If we can’t meet that requirement, we must pay for each hour we fall short.  I think this is fairly common practice for most private schools, but that doesn’t stop those hours from somehow sneaking up and “surprising” you as the year creeps closer and closer toward summer break.
 
I have absolutely no problem offering my time and energy as a volunteer.  I know that, just as parents are instrumental in their children’s educations, they also play a vital role in the life of a school.  Those parental volunteer hours help to keep the cost of tuition down.  Because of my husband’s work schedule and my kids’ sports schedules, I knew that the better part of the service hour requirement would fall on my shoulders.  No problem.  What I didn’t really anticipate, though, was how overwhelmingly unsocial (anti-social?) I would still feel, even more than a year after Ella died.  How can I volunteer my time and my service when I’m a semi-reclusive home body?  How can I give of myself when that self is still pretty withdrawn, being more drawn to solitary quietude than public service?
 
Well, where there’s a will, there’s a way.  Between donating items for use by the after-school program and collecting, clipping, sorting and organizing the school’s Box Tops 4 Education and Campbell’s soup label stash, I managed to accumulate a little over 19 service hours with barely any human interaction at school or otherwise!  Yep, 19 hours of helping a school full of people without actually being with, near, or around a school full of people.  Check. Me. Out.
 
Wait.  Did I just brag about that?
 
Yet, that’s sort of where I still am over a year after Ella’s death – more content to stay at home than be out in a crowd, more comfortable with electronic interaction via text and computer than actual human interaction, more willing to miss out on the company of friends than to give up the safe haven that is my own home.  That’s not to say that I never leave my house!  I’m not agoraphobic by any stretch of the imagination.  I have no problem going out for errands or for specific events like church and hockey games.  I’m just really, really selective about where I go socially, why, with whom, and for how long.
 
I probably sound like either a snob or a head case or both.  I realize that.  But I don’t keep myself away from people because I think I’m better than anyone or above keeping their company socially.  I just get so tired of feeling like I have to paste a smile on my face when what I really want to do is mope alone or even just be.  It can be emotionally exhausting, trying to exist among others without pretense.  Though the really awful, dreadfully bad days are fewer now – the days that have me crying at the drop of a hat or at the first note of an emotionally charged song - the blah days are still aplenty, and so often I don’t feel like smiling or making small talk.  I know so many friends don’t expect me to have sunshine shooting out my butt all the time, but I also know what a drag it can be to hang out with someone who’s more down than up , who isn’t fake in her friendship even as she fakes her smiles, or whose entire focus seems to always be turned inward.
 
Lest my friends take this personally or think I’m avoiding them, please take heart and know that it’s not you...it’s me.  I’m also avoiding strangers and acquaintances!  It’s a unique conundrum I’m in as the still-grieving mom.  Friends know exactly why I’m down, but I avoid them because I know what a drag I can be.  I don’t want my pre-social interaction dread to come across as either personal dislike or the reason why they might not have fun, or worse, the reason why they feel like they can’t have fun around me.  Strangers and new, post-Ella acquaintances don’t know about my sweet girl, so I avoid them.  They don’t know about the most awesome baby that ever graced this planet, and that’s all I can think of when I’m with them.  Though I think I’ve done a decent job of it (read: didn’t break down crying) when my daughter has come up in past conversations, I always worry about it.  The simplest questions, like “How many kids do you have?” or “Two boys?  Why no girls yet?”, are no longer simple.  What’s left to do but endure some self-imposed solitary confinement?
 
Last year I wrote about my triumphant return to the homeschool mom social scene.  I was proud of myself for finally venturing out to spend time with friends.  And I have to admit that I was impressed because a few short months before that moment, you couldn’t have paid me any amount of money to leave the house for anything other than God.  I had stepped out of the house and out of my comfort zone.  It was a slow return, the pace of which I likened to a slug’s, but it was a return nonetheless.  It turns out, though, that a social slug doesn’t experience the lovely metamorphosis that might eventually turn someone else into a social butterfly.  Nope.  Most days being a slug feels exactly like it sounds – sluggish.  And I swear to pete, for every slide forward I make, I sneak in a bit of self-sabotage by shaking some salt out on my path, giving me an excuse to turn tail and hide.  I can think of so many excuses for why I can’t do this or be involved in that, even though the biggest reason that I’m often afraid to admit is that I am still just sad.  And so often it feels as though sad days make appearances just as the going finally gets good.
 
I know that I could make more of an effort to be socially active, to give my family and friends the time they deserve.  I know that I should make more of an effort for my own sake because – NEWS FLASH! – happy people are happier.  People who make the effort to be positive seem more content.  It’s just hard.  I’m not known for having much patience and that includes having patience with myself.  I think I’ll get there someday.  I just don’t know what to expect, I guess.  I don’t know what the “right” amount of time is to be in this funk.
 
Do I grieve a month for every month she lived?  A year for every month?  Every other day except for Sunday?  Honestly, and not to make light of it, but how long does one grieve such a loss?  I think I know the answer even before I ask the question, but is there a right amount of time to grieve?  A socially acceptable amount of time to get back to “normal”, even if you feel as though your world will never be normal again?  At some point, I think people expect more outward normalcy from you, even if you can’t get your inward self to bear any semblance of normal again.  Is this a process that happens in waves, even if the process feels more like an endless trough?  Or does all of this talk just come across as wallowing or, God forbid, as though I’m using Ella’s absence as an excuse to excuse myself from everyday life?  I don’t know, and if knowing is half the battle, then some days I feel like I’m frickin losing this war.  Certainly not losing every day anymore, but still more days than I’d like to admit.
 
I may not know much, but what I do know is this:  I am an imperfect person learning slowly how to live again after my sweet baby’s death.  I am learning not just how to live but how to embrace living again.  Though I have very little patience with myself – with the social dread, the drive to isolate myself, the reluctance to put myself out there – I am trying.  More than that, I am more and more willing to try.  I hope my friends can understand this.  Actually, I know they can.  Though they may not know exactly what I’m living through, they know that what I am going through is so difficult and so life changing, and so they wait.  They take the time that I can give them, and they don’t push me for more.  They continue to hold me up and to love me.
 
I hope they know how much I appreciate them.  I hope they know how grateful I am for their patience with me.  And I hope they know that I love them, too, even if only from a distance for now.
 
 
St. Ella, pray for us!

Tuesday, February 12, 2013

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!

Monday, February 11, 2013

A Long Overdue MABOP Monday

Happy Ella!



As is obvious from the lack of activity here at I After E, I hit a mid-winter slump with regard to blogging.  I hope to post more regularly and figured there’s no better way to jump back in than with a cute picture of Ella.  She is the inspiration for this blog afterall!


St. Ella, pray for us!

Friday, January 11, 2013

Mix Tape for the Melancholy

Have you ever yelled for your child to be quiet because your favorite song is playing on the radio?  Or turned the car radio up really loud while not-so-subtly asking them to be quiet by saying, “I REALLY LIKE THIS SONG”?  Have you ever sung very loudly and emotionally along with your favorite song using an umbrella or a spatula as a microphone?  Yeah...I have on way more than one occasion.  I love music.  I’ve always been quick to find personal connections to song lyrics, deep meaning in someone else’s words.  I have always been the “music person” in my family.
 
You know how in most - not all, but most - relationships, there is one person who is just more musically inclined?  I don’t necessarily equate being “musically inclined” with playing a musical instrument or being trained to sing well, but with liking and relating to music more.  One who not only sings loudly along with the radio but who can tell you band name, album, song title and year it came out; one who assigns real life value to lyrics that “move me and that mean something to me” versus one who kinda likes that guitar riff and sorta remembers the refrain of that one song, you know, the one that goes “la la lalala“ by that one group….sort of, you know?
 
Maybe that’s just the way my marriage is, but since I’m the one writing, we’re just going to assume that most relationships are just like that.  ;)  I enjoyed all sorts of music growing up - 80s music, hair band metal, country, pop, Latin, alternative rock, etc.  The ABCs of my CD collection - yes, CD collection (with a few MP3 downloads thrown in for modernity’s sake) - run the gamut from The Avett Brothers to ABBA, from BarlowGirl and Black 47 to Andrea Bocelli and Sara Bareilles, and from Coldplay  to the Cure.  My musical tastes are nothing if not eclectic.  I’ve always liked listening to music while driving, doing crafts, cooking dinner, cleaning the house, etc.  But that all changed in the days and weeks following my daughter’s death.
 
When my sweet girl died, I wanted nothing more than silence.  I could NOT stand noise - loud, soft, words, songs, any noise at all.  Noise was too hard to be around.  I didn’t watch TV.  I didn’t listen to the radio.  I left my cell phone on vibrate, just as it had been set while I was in my daughter’s hospital room for all those months.  I didn‘t want to hear a ringtone.  I asked my boys to talk softly or not at all.  I didn't want to hear anything.  I just wanted silence, as though silence could ever translate into peace.  But at a certain point, even the silence got to be too loud.  Silence and the non-stop, can’t get away from them, can’t make them stop images of the last days of my daughter’s life and especially of her death.  At a certain point, I had to let noise, and more specifically the music, back into my life.
 
But it took weeks before I could tolerate any noise while driving.  When I did finally allow noise in the car, I could only handle so much.  No crap, no kids’ music, and NO CRAP.  So that ruled out a majority of what’s on the (secular) radio nowadays, especially pop/rock and even quite a bit of today’s country music.  Heck, it even ruled out some of the Christian music on the radio.
 
But I eventually started listening to KLOVE.  Oh, how I hate the name of that radio station.  It makes me roll my eyes to even say it - KLOVE -  but it was and still is the only station that gives me what my heart and soul need.  I was still so angry with God at that point, yet I couldn’t listen to any music but that which praised Him or talked about Him.  I was furious that He took my baby away from me, but even in the midst of my anger, I knew that listening to most of the drivel and tripe that passes for modern music wouldn’t help my mood, my spirit or my soul.
 
Music, and more specifically Christian music, has been a balm for my soul, providing comfort and reassurance when mere words couldn’t and offering hope and even a little bit of light during the darkest time of my life.  The lyrics of certain songs just spoke to my aching soul and broken heart in ways that other words could not.
 
So without further ado, I present my play list - a mix tape for the melancholy - full of songs that have meant so much to me and have helped me the most during this past year.  I think that several of these songs would provide comfort to anyone experiencing difficulty, not just those in the throes of grief.  I’m sure we’ve all felt very far from God at some point in our lives, as though all sorts of crap is raining down on us while He appears to be keeping His distance, watching but not helping, hearing but ignoring.  It’s nice to know that the simple words of a randomly played song on the radio could bring us closer to Him and just might be the way He reaches out to us when we need Him most.
 

You’re gonna have all of me
You’re gonna have all of me
“Cause you’re worth every falling tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me is where I’ll start.

Of course, a song written by a heart dad had to make it to this list!  It’s one of the first that I remember noticing and really listening to after I let the noise back in.  Matt Hammitt’s son Bowen was born with hypoplastic left heart syndrome (HLHS), a congenital heart defect that usually takes at least three surgeries to correct.  The first time I heard this song, I couldn’t stop crying.  I was driving at the time, so that wasn’t good.  I honestly felt like I could have written every single word in this song because I lived every single word of it.  The lyrics took my breath away; they were my own thoughts and emotions set to music.  Mine was a reckless love for my daughter, and she was worth everything, every sacrifice, every tear shed both then and now.
 

I was sure by now
God, you would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining. 

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as your mercy falls
I raise my hands and praise the God who gives
And takes away.

It is so easy to praise God when things go well, when life is good and when the blessings are abundant.  To praise Him when everything goes south is beyond difficult and can seem downright impossible.  It’s hard to praise the One at whom you’re shaking your fist and swearing like a sailor.  This song serves as a reminder that God deserves my praise, my thanks and my adoration in all circumstances.  And believe you me - I have needed that reminder time and again for the last year!
 

Two months is too little
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
This is what it means to be held
How it feels when the sacred is torn from your life
And you survive.

You only have to listen to the first verse of this song, changing a few words here and there, to understand why it touched me.  It is truly appalling to pray and to hope only to have those prayers seemingly ignored and that hope crushed.  But God is faithful even when we aren’t, and though the prayers aren’t always answered in the ways we want, He holds us through it all.  This is a lesson I have to relearn with each new day.
 

Breathe
Sometimes I feel it’s all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord, take hold and pull me through
I’m alive even though a part of me has died
You take my heart and breathe it back to life

Oh, heavens, this is another song that could have come straight from my own hurting heart, and it‘s another one that makes it hard to breathe for all the crying I do while listening to it.  I was so freaking ANGRY after my daughter died, but in the midst of that anger, I still found myself turning to God, talking to Him constantly and relying on Him to carry me through the pain.
 

And with your final heartbeat
Kiss the world good-bye
Then go in peace and laugh on Glory’s side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!

I heard this song for the first time while listening to a CD that my boys got at vacation Bible school a few summers ago.  Even then, before experiencing the soul crushing pain of losing a child, the song made me well up.  Now that my own sweet girl has flown to Jesus, it touches me more.
 

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles’ wings
Before my God fall on my knees
And rise
I will rise

What a beautiful thing to imagine - my sweet girl forever before her King, no longer in pain, no more sick and broken heart.  That I didn't want to hear such a sentiment after Ella died or have those words offered as comfort doesn't change the fact that my little girl's heart has been made perfect in Christ.  For as much pain as I am in, for as much as I desperately miss her, for as much as I ache - truly, physically ache - for not being able to hold her in my arms, I would never begrudge her Heaven.
 

You’re in a better place, I’ve heard a thousand times
And a thousand times I’ve rejoiced for you
But the reason why I’m broken, the reason why I cry
Is how long I must wait to be with you

I close my eyes and I see your face
If home’s where my heart is then I’m out of place
Lord, won’t you give me strength to make it through somehow
I’ve never been more homesick than now

I’m afraid.  That’s the long and the short of it.  I’m afraid I’ll forget what she looked like, what she smelled like, what it felt like to hold her in my arms while I swayed back and forth, her head resting against my chest while I kissed the top of her head.  I’m afraid I’ll forget how the weight of her wee body felt as I held her against my chest, sang her silly songs, and whispered “I love you” in her ear.  I'm afraid I’ll forget the words to the songs I sang to her.  I cry because I miss her.  I cry because I know where she is, but I can’t see her or visit her.  I cry because I wanted more time.  I miss her so much, and though I have the hope of seeing her again in Heaven, that just feels so far away.  Only God can get me through the wait until I see her again.
 

I set out on a great adventure
The day my Father started leading me home
Said there’s gonna be some mountains to climb
And some valleys we’re gonna go through

But I had no way of knowing
Just how hard this journey could be
Cause the valleys are deeper
And the mountains are steeper
Than I ever would’ve dreamed

Not all the songs have to be sad or melancholy!  This song is catchier and more upbeat than almost all the others on my list.  Heck, it has a ukulele in it!  As Chapman said, “you can’t frown and play a ukulele.“  I don’t think you can listen to one while frowning either!  That it’s upbeat certainly doesn’t take anything away from the message.  We are all just pilgrims on our way home to the Father.  It’s just that some journeys are longer and harder than others.  We have to trust that we’ll make it, even if “we’re taking the long way home.”
 
This song is much more poignant when you realize that Chapman lost a daughter (whom he and his wife adopted) to a tragic accident a few years back.  When your child dies, you want to get to Heaven that much quicker, if only to see her again.  The hard parts are the wait and the journey YOU still have to take even when your child’s journey is done.  [Chapman’s song “Heaven Is The Face”…oh, it says so much, too.]
 
 
Oh, for the love of pete, do you really need a reason to blast an honest to goodness, foot stomping, play it loud and sing it louder kind of song?!  This one gets played in the car with the volume set at 15.  Crank it.  Yell the lyrics.  ENJOY.  And then when you’re done listening to that one, listen to this one.  Fantastic and fun!
 
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 Forgive the pun, but listening to music has been very instrumental in helping me through the grieving process.  It has given me words to sing, say and pray when my own have failed me, and it has given me an emotional outlet like no other resource has.  I truly believe that God used my love of and need for music in my life to reach me even when I felt completely unreachable.  He spoke His words of comfort and peace and love to me through the lyrics of the songs I heard when I finally let the noise in again.  I’m grateful for that because I cannot imagine what kind of head space I’d be in today if I hadn’t had those songs.  Music has absolutely been among the most valuable of all the cheap therapies I’ve relied on over the past year.
 
And if nothing else, perhaps by writing this post and providing some links for you to click on, I’ve introduced you to some new sounds or reacquainted you with some old ones.  Who knows?  Maybe you’ll come across some cheap therapy that you didn’t even know you needed.  ;)
 
 
St. Ella, pray for us!

Saturday, January 5, 2013

My Fiat

I try to post a picture of Ella on my blog every week, my “MABOP Monday” posts that always showcase the Most Awesome Baby On the Planet but aren’t always posted by Monday.  I post Ella’s pictures not just because I love to share her beauty and awesomeness but because they give a face to the name in all my stories and the reason for this blog.  Those pictures help me keep her memory alive.  So each week, if I don’t already have an idea of which picture I’m going to post, I search through the photos we have on our computers.  Yes, computers.

We have a finite number of pictures of Ella, but they're spread out over three computers and a memory card or two.  Some are on our old computer, and some are on the laptop I had at the hospital.  Where we stored them depended upon where and when we took the pictures and where we were when we needed to make more room on the camera’s memory card.  Thankfully, though, most of the pictures ended up on my husband’s work computer.  After Ella died, we did our best to consolidate the photos onto one computer.  Even knowing that, though, I have moments of panic when looking for a particular shot.  I panic because I can’t find it.  I panic because it’s not where I think it should be.  I panic because I need to see it; I need to reassure myself that the picture is still there.  God forbid I’ve lost it or it’s somehow been accidentally deleted because I can never get it back.  Those pictures can never be replaced.

My husband - God love him and his patience with me - bought a thumb drive this week that has A LOT of memory.  He bought it so that I could have everything Ella related from his computer here at home, no longer having to rely on his work computer for access to those pictures and videos.  He transferred not only Ella items but also all the old pictures he had of our boys.  It took a while because there was quite a bit to transfer, thank God.  When all was said and done, I was able to sit down and take a long walk down memory lane.  The older pictures of our boys cracked me up!  They were as cute and goofy back then as they are now.  The early pictures of Ella…those broke my heart and opened my eyes.  She was so small when we first brought her home!  The pictures we have out on the fridge are from when she was a little bit older, so I think I’d forgotten just how tiny she was.  She was just a wee little thing swaddled up in her crib, my sweet little burrito of love.  And then to see her so small in a hospital bed with lines and tubes coming out of her…wow.

Ella was six days old when she was first hospitalized, still a newborn really.  We have a picture of her from the first (local) children’s hospital after she was admitted but before she was flown to a different children’s hospital where she would spend over half her life.  She was still in her “I’d rather be in the womb than out here” mode – legs pulled up, hands balled into fists, face scrunched up, just so wee.  Her pacifier seemed to take up half her face, it was so big!




Because she was a heart baby, she was not only smaller than other babies but she also grew slower.  Her chances of making a big splash on the baby growth charts weren’t helped by the fact that, for the first part of her hospital stay, she wasn’t allowed to eat.  Because of the variety of congenital heart defects that Ella had and the problems each caused, the doctors had to make sure enough blood was perfusing to the lower half of her body, including her stomach.  Inadequate blood flow to her stomach would have caused serious problems, including lack of proper digestion and possible tissue death.  Even when feeds were started, they were very slow and of very small amounts.  So my wee girl stayed wee.  She was feisty and awesome and strong, but she was wee.

Looking through all of those early Ella pictures brought back so many memories and emotions.  They reminded me of how helpless I felt while Ella was hospitalized – helpless in my complete dependence upon God and His infuriatingly incomprehensible plan, helpless in my complete reliance upon all the nurses and doctors to keep me informed of everything that was going on, helpless in my complete inability to do anything to heal my daughter.

To feel completely helpless to do anything for your child is a horrible feeling.  I never felt more overwhelmed by the feeling of helplessness than I did one evening when my daughter needed to have her blood drawn.  Drawing blood from a person isn’t necessarily a difficult task for the average nurse, but when the patient is a small, newborn heart baby with perfusion issues who’s not only a difficult stick but is also clamping down [her already small veins seemed to shrink (clamp down) because it was more important for her vital organs to get blood than for her arms and legs], then that average everyday blood draw becomes decidedly un-average.  On this particular evening, several nurses had come into Ella’s room to try to help.  They tried to take blood from several locations on Ella’s body – hand, foot, scalp.  After quite a long time and numerous failed attempts, the fellow on duty came in to draw blood from the femoral artery.  An arterial blood draw is never the first option, but in this case after well over half an hour, several unsuccessful tries, and the angry cries of a very vocal, pissed off baby, it was the best option.

And all I could do while this was going on was watch, pace, pray, and cry silently.  I did my darndest to not just sob outright while this was going on, but it was very hard.  I could do absolutely nothing to help my daughter.  She was very angry and agitated.  She was screaming and crying, and I could do nothing to make all the pain and bother stop.  I rationally knew that the blood draw was for her own good and that it was medically necessary, but rational thought doesn’t mean jack when it comes to watching your baby experience pain.  A simple blood draw, yet it still makes me cry to think of it more than a year later.

In all of the emotion of that evening, I distinctly remember a thought I had that seemed to come from out of the blue:

If this is how I felt watching my baby girl have blood drawn, if I could feel so helpless as a witness to her helplessness, so overwhelmed by the desire to stop the pain and just hold her to me, so primal in my passion to protect her from all harm, then how much more did Mary feel while watching her Son, her sweet, innocent Boy, beaten, scourged, abused, taunted, tortured, and crucified, His own blood flowing down His brow, from His hands and feet, pouring forth from His side?

It used to sort of piss me off when people would say that I could look to Mary as an example, that she, too, was a mother who had to watch her Child suffer immeasurably, that I could learn not only how to say yes to God in all things but also that I could follow her example of grace-filled suffering.  I could trust God’s plan and say wholeheartedly, “May it be done unto me according to Thy word.”  In my grief, I would just scoff at that.  I would jump past the example of Mary to the make the point that this was different because her Son chose to suffer.  Her Son knew that He would have to suffer and still chose to go through all of it anyway.  My baby, born with a very sick heart, didn’t have a choice.

It took me months to calm down enough in my grief to remember Mary, His mother, who also must have felt helpless as a witness to her Son’s torture, so overwhelmed by the desire to stop the pain and just hold Him in her arms, so primal in her passion to protect Him from all who would harm Him.  How totally her heart must have been pierced by a sword with each and every scourge on His back, with each thorn in the crown He was forced to wear, with each hammer of the nails in His hands and feet, with each strangled breath He took while hanging on that cross.  The suffering I endured watching my sweet daughter experience pain was maybe one-one millionth of what Mary endured.  How humbling to realize how much pain and suffering her willing and unconditional “yes” to God, said with total obedience and trust in His word, brought into her own life!

Throughout my own journey with my children, most especially with my Ella, I’ve come to a certain realization:  when I said yes to the vocation of wife and mother and when I said yes to my children’s lives and their presence in mine, I opened myself up to the possibility of my own heart being pierced by a sword.  That’s all well and good when the only pain your children experience is the occasional scraped knee or bloody nose or when the only things that hurt are their feelings or their bruised egos.  What I hadn’t accounted for was the deep, soul-crushing piercing that happens when you spend day and night at the side of your critically ill baby, when you are powerless to help her, when even your mommy kisses aren’t enough to make the pain go away, and when you can do nothing more than hold her in your arms as she breathes her last breath, as her heart beats for the last time.  Nothing prepares you for the pain of such a piercing.  Nothing.

On January 1, the Catholic Church celebrated the Solemnity of Mary, the Mother of God, the woman whose unconditional yes to God changed the course of human and salvation history.  I thought that it was such an appropriate way to start off the new year – remembering Mary, my mother; contemplating what it means to say yes to God’s call and to His will in my life, no matter how hard that may be; really thinking about how many times I’ve said “no, not now, maybe later, it’s too hard” instead of “yes!”; and understanding that God will not leave me alone or abandon me after I do say yes, that the strength to do His will does not come from me but from Him, and that I will be strong enough to do His will if I trust Him to lead me through it.

I’m not making any new year’s resolutions this time around.  I guess I could work on being better organized or on eating healthier.  There’s always room for that kind of improvement in my life, that’s for sure!  Instead, though, I’m going to focus more on making Mary’s fiat my own.  I’m going to work on saying yes to God more.  I’m going to pray more honestly Jesus’ own words “not my will but Thy will be done.”  And I’m going to remember that the deepest pain I’ve experienced in my life thus far, the pain of Ella’s death, a pain that pierced my heart so deeply, came hand in hand with the most overwhelming joy – that of being the mother of the most awesome baby on the planet.


St. Ella, pray for us!