Thursday, December 31, 2009

Conflicting Emotions on New Year's Eve

Tomorrow marks the start of a new year and a new decade.  I feel a lot of conflicting emotions as I contemplate the past year and think about a coming one.  This past year I got to spend 8 months preparing for our new baby and one blessed month by his side, kissing and loving him in a way I've never loved anyone else.  2009 is the year that gave me Samuel.  But it is also the year that took him away.  2009 is the year I held my son as he died, the year with an agonizing month full of fear and uncertainty, the year I had to attend my son's funeral and visit his gravesite.  It is a year of deep grief and pain and heartbreak unlike any I've felt before. 

So, I feel confused about looking back and looking ahead.  In some ways I am grateful to move out of this year I will always remember as heartbreaking, but in other ways, it pains me to move farther past the month in which I got to touch and kiss my Samuel.  I both appreciate that every day means breathing a little deeper and resent that every day gets a smidge easier.  I don't want to move away from Samuel, but at the same time I know it's part of healing, and I can't stay in this place of intense suffering forever.  And I recognize that the turning of a new year doesn't in any way mandate a change in my grief.  But it is a significant date nonetheless. 

I also find myself dwelling on what this decade has held.  My life has changed drastically from that of a youth to that of an adult.  The 2000's have held a plethora of milestones: graduating from college, marrying Bryan, having my first fulltime job, moving from Texas to Georgia, teaching high school for 4 years, seeing my parents' marriage of over 33 years come to a devastating end, buying our first house, having our first child, having our second child, having a miscarriage, selling our first house, buying our second house, having another miscarriage, having our third son, and losing a child.  That is a lot!  So much of it has been wonderful, and it's certainly held the most dear times of my life thus far.  But a lot of it has been truly difficult as well.  It's a little overwhelming to look back and realize this decade is nearly behind me, and there is so much of it I would love to live over again.

Today also marks 4 months since Samuel died, and tomorrow he would have turned 5 months old.  This day holds a swarm of memories and thoughts and questions.  I don't know what's ahead.  Do I have the courage to walk forward into another year and another decade and have hope and joy?  Can I be peaceful and trust God completely to meet every need and care for every wound?  I pray that I can and that I do.  May 2010 be a year full of trust, of healing, of grace, a year I look back on and see God's provision and kindness and presence.  And may it be a year where I become more fully the woman God wants me to be.

Sunday, December 27, 2009

Christmas without Samuel

Christmas has been a continual, confusing juxtaposition of joy and sorrow.  It's been impossible to avoid the contagious joy of Caleb and Joel this season -- their excitement about traveling to Texas (asking 15 minutes into our 13 hour drive, "are we in Texas yet?"), playing with their cousins, staying at Gab'm's house, looking at the Christmas tree, talking about Baby Jesus, camping out in our living room the night before opening presents, watching the snowfall on Christmas Eve, and enjoying their new bounty of toys.  Their wonder and enthusiasm has certainly spread and infected us all.  And I am grateful for that.  It's been refreshing to have moments of such joy and laughter and togetherness.






At the same time, there has been a palpable incompletion this Christmas.  As Christmas hinges on a tiny baby boy, I am so very aware of my tiny baby boy's absence.  Samuel's absence is tangible and painful.  Being at my mom's house and having only 5 grandkids seems....well, incomplete.  Where is the 6th child?  Where is my baby boy to hold through Christmas morning while we open presents?  Where is my sweet Samuel when we all gather for a big family photo shoot?  Why are we all having professional photos made when Samuel's not here?  In so many ways, this Christmas feels wrong.

One of the most momentous parts of this Christmas has been meeting my niece, June, for the first time.  She is 16 hours younger than Samuel.  I have been nervous about seeing her ever since I knew Samuel was going to die.  I have known that one of two paths was open before me: June could be a special niece to me with a very special place in my heart because of her close age with Samuel, or she could be a very painful reminder of our loss and someone I avoid and resent.  I desperately wanted the first to be true, but I couldn't predict my emotions.  I knew I would choose to love her, but I didn't know if that would be an uphill battle or a natural outpouring of love.

Being with June for the last few days has been....wonderful.  She is adorable and entirely loveable.  She's beautiful and happy and so right in my arms.  A couple of days after Samuel's funeral I asked my brother, June's dad, what God was thinking when he gave us children so close in age and took one away.  Matthew said he'd wondered the same thing, but maybe part of why June is here is to keep Samuel close to our hearts -- to give us a picture of Samuel and what he would be up to.  I found that to be so very true this trip.  And I can imagine it holding true for the rest of my life.

One of my friends, Wendy, wrote something to me about seeing June this Christmas, and it's been a real comfort and source of peace:

"I pray that seeing June, while it will surely be acutely painful in some ways and a reminder of how  much you miss your son, would also be wonderfully like your dream, in which you got to hold a lively, growing, smiling Samuel. I pray that holding your niece would give you a small glimpse of the healthy, whole Samuel who celebrates Jesus' birth in his presence this Christmas!"

This is what I was pondering the entire Christmas Eve service at Matthew and Ashley's church.  I held June the whole time, and I wept silently for most of the service.   It was a gift to hold June and feel her wriggle in my arms, to see her big, brown eyes and her endless offering of smiles.  To cuddle close a baby whom I love and to think of my baby as happy as June and celebrating Christmas in Jesus' very presence...it was a beautiful and comforting picture.  For all the joy we experience here on earth at Christmas time, Samuel's joy far surpasses it.  I love that.




And then at Christmas dinner, my 5 1/2 year old niece, Vivian, prayed for Samuel -- for him to be happy with Jesus in Heaven.  This, too, brought tears to my eyes.  As did a text from one of Bryan's friends and co-workers, saying his 6 year old daughter had just prayed for Samuel and for us.  God is putting our family on the hearts of children!  What a humbling and awe-inspiring thing!

I think the most heartbreaking thing this Christmas has been seeing how very much and very deeply my children love June.  Joel asked for her moments after we first walked in the door of my mom's house, and later he sat beside her and kissed and stroked and hugged and cuddled her endlessly.  He couldn't stop staring at her and being so sweet to her.  He held her for a long time, and I don't think he ever would have volunteered to give her up.  He kept bending his head forward to see her face and to kiss her cheek.  Numerous times since then he has spontaneously piped, "I'nna hold June!" (I'nna is Joel's shorthand way of saying "I wanna".)  And Caleb asked to hold her during Christmas Eve service and was beaming with joy and pride with her in his lap.  He was sad to give her back to me when she started fussing and later told me that holding June was his favorite part of going to church.  It has broken my heart to see my kids love on their baby cousin so tenderly and to know they want to be loving on Samuel, they miss him, they wonder about him, and they are sad to miss the chance to be a big brother to Samuel.  I am deeply thankful that they have been able to hold and love June, and I am sure it's part of their healing as it has been part of mine, but how I wish I could offer them their own baby brother to hold and love and care for.



 


This morning at my mom's church, we sang "Great is Thy Faithfulness," a song we sang to Samuel on occasion.  I often pondered and prayed a line from that song during the month of August.  In fact, I am pretty sure it was a status update on facebook. "Strength for today and bright hope for tomorrow" meant something very different in August than it does now, and that realization lead to a torrent of tears.  In August, I was desperate for God's strength to make it through the day, to trust Him, and to hope for Samuel's future.  I needed Him to face every piece of good news and bad, every fear and uncertainty, every question about his health and how to proceed.  And I needed God to give me hope that Samuel would come home, live a full life, and be in my arms someday.  Now, however, I need strength to face each day without Samuel and bright hope for the "tomorrow" in which I get to spend eternity with my son.  It's an entirely different prayer now, though no less relevant or true.  And singing it was sorrowful, overwhelming, and refreshing all at once.

This Christmas is one I will not forget.  I didn't have my baby boy to hold and care for, but I have a new picture of him celebrating Jesus in Heaven.  I didn't have Samuel to kiss and stare at, but I have June to soak up and treasure.  I didn't get to scold Caleb and Joel for being rough with their baby brother, but I got to witness their shear joy in holding and loving their baby cousin.  I didn't get to tuck my newest son in on Christmas Eve, but I have a new appreciation for Christ coming as a baby and for Mary and Joseph's wonder at His birth.  God continually gives me gifts of grace, peace, hope, and strength, and I continue to experience Him in ways I never would have if Samuel hadn't been born the way he was.  My God amazes me, and this Christmas I celebrate Him more sincerely than ever before.  What a gift we have in Jesus!

Sunday, December 20, 2009

A Trip to Egleston

On Friday Bryan and I headed down to Egleston with 17 dozen cookies I baked, some yummy baked goods from a few friends (thanks Tracy, Kristen, and Melanie!), dozens of pretzel treats, and a few small gifts for some particular people who blessed us while we were at Egleston with Samuel. I was nervous about going -- about what being there would stir up -- but I knew I really wanted to say thank you to the people who made August a bearable and, in many ways, wonderful month.







On the drive there, I kept thinking about our final drive home from the hospital -- when Samuel had died a few hours before, and we knew we weren't ever going to bring him home. I remember getting to the car in the parking garage and popping the trunk to put our overnight bags in. When the trunk flew open, there sat the infant carseat, waiting to be installed in the backseat when Samuel would finally be cleared to come home. How pointless it seemed sitting in our trunk, and how cruel. And about 10 minutes into our drive I recall asking out loud, "What day is today?" I wondered what the date was of our son's death. I was surprised to learn it was August 31, and Samuel had only seen the month of August -- though every day of it.

Once we arrived at Egleston, Bryan and I loaded the cookies on a wagon and headed up to the CICU. Of every parent we passed I thought, "are you living the nightmare we endured?" Once out of the elevator and walking down the very familiar hallways, I heard a sound I hadn't anticipated. There were some sounds I was prepared to encounter -- like the beeping of the machines hooked up to every baby and child in the CICU -- but I had never considered the loud click and release of the automatic doors guarding the CICU and Step-Down Unit. We were still two turns away from Samuel's old quarters when I first heard it, but that sound stopped my heart for a few seconds. I got really shaky and felt my heart racing away after its pause. I looked at Bryan and said, "the doors. I never thought about the sound of the doors." I realized later that I associate the opening of the thick doors with the fear I felt every time we went back into the CICU -- the anticipation of something having changed for the worst since we'd left for lunch or to sleep at night or even just to go to the bathroom or pump breastmilk. We never knew what we were walking back into. Would a hoard of doctors be huddled around Samuel's bed in a crisis? Would his numbers be dropping into dangerous zones? Would he look more swollen than the last time I saw him? All these fears bombarded me every time I stepped foot into the unit. Even when I would go back inside just for a moment because I'd forgotten something or had to give the nurse breastmilk for the freezer, I would glance over my shoulder at Samuel's station to be sure there was no commotion around him. It was so terrifying to know something horrible could happen at any moment. And those doors opening with their clank brought it all flooding back.

When we got into the CICU on Friday, we saw Richard almost immediately. It was great to give him a hug. He rounded up a few people, and we spent 15-20 minutes talking in the entry way. Dr. Kim came out to see us, and so did Dr. Brown (who we call Jen), Sherese, Jennifer, and Lucrecia.



It was wonderful to be able to say thank you to people who served us in immeasurable ways. We felt blessed by the chance to talk to them, to hug them, to try to express what a role they've played in our story. I could see Samuel's dock, 2112, through the doorway into the actual unit. There was a baby boy there with his parents on either side of him, looking up to see who was causing a commotion in the entryway. I clearly remember being in their shoes, wondering if we'd ever come back to Egleston with smiles on our faces and wondering what the story was of those who returned. Their baby will now be on the list of heart childen I pray for every night. We walked out of the CICU teary and feeling so glad we'd come.

Then we went to visit Sarah Beth and her parents. She is doing really well after her second heart surgery, and it was kind of miraculous to see her in person, her beautiful face, her incision, her big blue eyes. We watched as Rachel and Don are still living the life we faced in August -- the hope, the fear, the concern at every cough or increase in heartrate. They are accustomed to this life and have found a way to live it in relative calm, but we remember the internal panic whenever Samuel's monitors suggested a potential problem. It's exhausting, and we felt both joy and heartbreak for them as they continue in this journey with their precious daughter.

As we walked the halls past the sleep pods where we slept the last 8 days of Samuel's life, past the garden we loved, and past the cafeteria where we ate I don't know how many meals, I felt surprised by how familiar it all was. I had expected the hallways to be filled with memories and for my stomach to be in knots, but I think because we were living in those halls so recently, it just felt normal to be walking them. I wonder if another year from now would be drastically different -- more emotional and memory-rich. This time those halls were just halls I had walked a hundred times over.

On the rainy, cold drive home, I told Bryan there was something good about being back, about being in the place where Samuel lived his days. There was something so good in being acknowledged as part of that place. Having walked away from Egleston hours after Samuel's death, it felt a little like we were moving out of the reality in which he lived and like we could never come back to that place and belong to it. I can't explain it really, but knowing that the people there -- Richard, Dr. Kim, and Jen -- acknowledge Samuel's part and place in the story of Egleston...it gives credence to his life. It gives weight to his 30 days. It gives truth to his existence. And it gives healing to my soul and heart. It makes me even more grateful for those people we love and who served us so wonderfully during Samuel's life. So, thank you all of you nurses, doctors, and RT's who cared for Samuel and for us in August. We are eternally grateful, truly.

Tuesday, December 15, 2009

A Week of Reminders

A year ago today I found out I was pregnant with Samuel.  I vividly remember wondering if I should take the pregnancy test or wait, knowing that once I found out I was pregnant I would start to worry since I had miscarried just 6 weeks before and had miscarried a couple of months before that.  But I recall sitting on the floor of our room, wrapping presents, I think, and realizing I already knew I was pregnant.  My body was already telling me that a baby was growing in my womb, and I was already thinking and behaving like I was pregnant.  So I decided to take the test, for what difference was it going to make?  And I was right.  There was a baby beginning to form in me.  That began two of the most anxious weeks of my life, frought with fear and worry and constant trips to the bathroom to see if I was miscarrying.  And two weeks later, I was spotting and thought for sure I was losing yet another pregnancy.  As I lay in bed and wept, I thought I was facing the worst -- three miscarriages in a row.  And I found myself turning to God, letting Him cradle me, letting Him ease the weight in my chest.  I was surprised at how easy I found it was to trust Him.  And the next day a trip to the OB showed me a brand new heartbeat and calmed my concerns.  Little did I know what was ahead, that I had nowhere near faced the worst.  But even in the very worst, God has met me, loved me, comforted me, and granted me what I needed to trust Him.  He has showered me with grace upon grace.

Today is the day one of Samuel's friends from the CICU has her second heart surgery.  I can begin to imagine what Sarah Beth's parents are feeling today.  This is the time of year we expected for Samuel to have his open heart surgery.  When I was 24 weeks pregnant, we got our third diagnosis for Samuel, and that diagnosis lasted until his birth.  Although we had spent a month preparing for Samuel to need surgery within a few days of birth, we spent three times as long expecting him to have something called AV Canal defect, the heart defect most commonly associated with Down Syndrome.  We were told Samuel would need surgery at 4-6 months of age and that it would be a fairly straight forward procedure as far as heart surgeries go.  So Bryan and I had pictured this time of year as being pretty scary with lots of trips to the cardiologists -- being otherwise sequestered at home to keep Samuel as protected from germs as possible -- and heading to Egleston for the first and only time.  Honestly, I spent far more of my pregnancy preparing for a Down Syndrome child than I did preparing for a child with heart problems.  All of that changed in a blink of an eye when Samuel was born.  So the last few days, all last night, and all today I have been praying for Sarah Beth and for her parents, Rachel and Don.  I can't quit thinking about them and lifting them before the Lord.

This morning when I went into Joel's room to get him up, he was playing in bed as usual.  He sleeps with a whole counsel of animals.  All of them were laying face-down on his pillow.  As I walked in, he gestured toward them and said, "Look, Momma.  Samuel died."  I have no idea why he associated being face-down with death.  I gave him a perplexed look and asked some questions to try and understand, but nothing he said clued me in to what he is thinking or why he's thinking it.  He did say that Samuel dying meant Gab'm was coming.  At least that was a happy thought.  Otherwise it was a kind of morbid start to the day.  And on our way home from Caleb's preschool today, we saw a major car accident just minutes after it happened.  An SUV was completely flipped in the middle of the intersection, and it rattled me pretty deeply.  I was driving in tears and just thinking about how life changes in a moment, and you don't know when that moment is coming.  I don't know if everyone was alright from the car crash, and I keep praying for those people, too.

This Friday Bryan and I are headed back to Egleston for the first time since Samuel's death.  We are taking a bunch of baked goods to say thank you to the wonderful people who cared for Samuel and for us while we were there.  I am anxious about this trip.  In just about everything else, the anticipation of something has been worse than the reality of that thing.  Going back to Egleston....I think it will be the reverse; I think actually being there will be far harder than I can anticipate.  I very much want to thank the people who blessed us so in August, but I am scared to go back, to walk down that hall to CICU, to see dock 2112 where Samuel died, to make the last 15 minutes of the drive that Bryan and I almost always passed in silence.  It will be hard to be there again -- and to be there without our sweet Samuel.

Last week the phone rang, and I picked it up thinking it was Bryan calling, but immediately I discerned the beautiful South African accent that belongs to Dr. Videlefsky, Samuel's pediatric cardiologist.  My heart went into my throat as he so kindly said, "I was just sitting here thinking of Sam and of your family, and I just wanted to check on you and see how you're doing a few months later."  How very, very kind of him.  We spoke for awhile, and he told me of his brother who died of leukemia at 16 and how it never really gets easier, how it is always hard, especially at important times of the year.  I was more grateful than I can say for his phone call and his kindness.  I have been so amazed by people's gentleness with and sincere concern for us.  We have been so blessed.

All in all, it feels like a big week for me.  With the anniversary of learning I was pregnant with Samuel, Sarah Beth's surgery, a trip to Egleston, and a call from Dr. V, it's a lot of very present reminders of what we have lost.  We have lost so much.  But we have also gained so much.  I understand God in a new way.  I appreciate people in a deeper way.  I cherish kindness and compassion like never before.  And I trust God more fully than I ever knew I could.  These are all beautiful things, and I am thankful for them.  Would I trade them all in a heartbeat to have Samuel back in my arms?  Absolutely.  But since that's not possible, I cling to what I've learned, to how I've grown, and to how big my God is in the face of sorrow and heartbreak.

Sunday, December 13, 2009

Giving to Others in Honor of Samuel

In the months since Samuel died, many of you have asked about making donations in Samuel's name.  Bryan and I have spent a lot of time thinking and praying about what we'd like to do and how we'd like to continually bless others through Samuel's life.  We have come up with a number of options.

1) You could help us raise enough money to fly a child and one parent from a third world country to the United States for life-saving heart surgery through Samaritan's Purse Children's Heart Project.
I love the idea of raising the $2200 needed to bring a child to the US and granting them life.  Something about life coming from death is so powerful and healing to me.
Watch a video (though be prepared to shed tears) and donate to Children's Heart Project here.  (It's Gift 3 --Buy an Airline Ticket to Save a Child's Life.)

2) You could donate to a ministry for orphaned street children in India.
Bryan and I both became very burdened for the street children of India after watching Slumdog Millionaire in March.  A couple of weeks later, we learned about Samuel's heart defects.  We both associate Samuel with this passion God has placed in our hearts, and we are hoping to have a life-long involvement in helping street children.
Donate to street children here. Type in "North India High Risk Children" for the Missionary or Project Name.

3) You could give blood in honor of Samuel.
One way in which Samuel really benefited from the generosity of others was through donated blood.  He received I don't know how many pints of blood products, and we became convinced of just how valuable the gift of blood is. 

4) You could donate to Children's Healthcare of Atlanta.
Egleston Children's Hospital is part of CHOA and is where Samuel spent his life.
Donate to CHOA here.

Doing any of these things would bless us richly.  If you do decide to give in one of these ways (And there is no obligation to do so.  We recognize that there are many, many quality ways to give your money and time and to bless others this holiday season), we would love to hear about it.  It brings us joy to know that good comes from Samuel's life and death.  It is healing every time we hear about Samuel's life touching and changing someone.  So please, let us know if you donate in any of these ways.

This Christmas our family has decided to remember and honor Samuel in numerous ways.  We decided to use the money we would have spent on Samuel's Christmas present to put something in his stocking.  We let Caleb and Joel each choose something through World Vision to give the Christmas money to.  Caleb chose to donate money to the Orphans and Widows fund, and Joel chose to buy 5 ducks for a needy family.  On Christmas morning, we will put a duck and something to symbolize orphans (any brilliant ideas??) in Samuel's stocking.  We have also decided to give to the orphans' home in India and toward a flight for a child's heart surgery.  (Notice we aren't planning to give blood.  Bryan has lots of stories as to why he will be refraining.  At one point he was even told not to donate again -- and it has nothing to do with the quality of his blood.  Sometime you should hear the stories.  They still make me laugh, and I've heard them many, many times. :) )  I am excited about these ways of blessing others through Samuel's life.  It is renewing to me to know that we can use our sorrow to help others and to bring something beautiful out of our brokenness.  I love that it's a small picture of what God has done over and over again in our lives.

Thank you for caring about our son.  Thank you for praying for our family.  Thank you for giving so kindly to us in these past few months.  We are grateful in more ways than we can express. 

Thursday, December 10, 2009

Blessed Be Your Name

Today I had to go to my OB's office for a shot.  Dr. Siegel has two offices, and I have almost always gone to one location.  The only time I've had to go to the other location was for ultrasounds.  But today I had to venture up there.  In the waiting room I was doing fine and wasn't thinking too much about my pregnancy with Samuel, but then the door to the hall opened, and the ultrasound tech who first detected Samuel's heart defect was standing there calling someone's name.  My heart skipped a beat.  I remembered how terrified I was before the appointment the morning of our 19 week ultrasound.  I woke up feeling sick with dread.  Nothing had previously indicated that something would be wrong, but I was so anxious, so ill-at-ease.  I recall walking over to Bryan in the playroom and putting his head on my chest.  He said, "Wow!  You really are nervous.  Your heart is beating like crazy."  Somehow that morning I knew we were going to get bad news.  I recall spending the whole drive to the office praying and praying and praying, beseeching God for peace, for faith in Him, for a heart that could rest in Him.

And I remember being in the ultrasound room with Bryan and hearing Shelley, the tech, say, "There's something wrong.  I will let a doctor know, and he will talk with you."  And most amazingly, I vividly remember the peace that flooded me in those moments.  Though I had been beyond anxious the whole morning leading up to those words, once I knew something was wrong, I was as calm as could be -- no fear, no tears...just peace.

Today Joel and I were led back to an exam room to await my shot, and we were put in the very room where Bryan and I waited to consult a doctor about the ultrasound findings.  As I recall, about 30 minutes passed from the time we knew something was wrong with our third son until we spoke with Dr. Siegel and heard what it was.  Dr. Siegel wasn't supposed to be in that morning.  He was supposed to be in surgery, but he just happened to be in the hall when Shelley was telling his partner about Samuel.  I had told Bryan once we knew something was amiss, "I only wish Dr. Siegel was here to talk with us."  It felt like grace from God when my doctor was the one who walked through the door to break the news.

Dr. Siegel was so kind that morning.  He spent a long time with us explaining what they saw, what they thought it was, what we could expect the next week to hold as far as appointments, and about the pediatric cardiologist we would see.  He described Dr. Videlefsky as "a prince of a man."  He couldn't have been more right.  I felt very cared for that day, and I was so remarkably peaceful.

In the moments when Dr. Siegel was explaining Samuel's defects, I had a groundbreaking realization.  Previously I had always said that the one area where I didn't know if I could truly trust and honor God was the well-being of my children.  I thought just about any other struggle would leave me standing firm in my faith, confident of the goodness of my God, ready to sing His praises.  But with my kids, I always feared I would not honor Him if I found myself losing one of them.  I feared I wouldn't be able to say, "Blessed be Your Name when I'm found in the desert place, though I walk through the wilderness, Blessed be Your Name."  I didn't think I would turn my back on God, but I did fear I wouldn't be able to praise Him.  In that moment, I knew I was wrong.  I knew BY THE GRACE OF GOD that I could open my hands and praise Him -- even if my son was to die.  It was a moment of utter confidence in my good God.   And that truth -- that God is good regardless of whether or not my baby lived -- carried me through the rest of the pregnancy and Samuel's brief life.

As Joel and I left the building today, Joel wanted to stop and sit on a bench in the lobby.  I'm sure it was no coincidence that he pointed to the very place where Bryan and I sat down to pause, to pray, to talk about what we had just heard upstairs on April 2, 2009.  There Bryan and I uttered our first words to each other about our third son: "I know God is good.  I know He is with us.  I know He made our son, and He didn't make a mistake.  I know we can trust Him."  And how true that has held.

Through the months that followed, the changing diagnoses, the myriad of doctor visits, the ever-altering picture of what was ahead, the very real possibility of Samuel having Down Syndrome, God sustained us.  Through the very short and yet scary labor three and half weeks before Samuel's due date, the unexpected news that his lungs were sick and he needed to go to the NICU, the new diagnosis that meant an almost immediate trip to Egleston, and then the following month of hope... and fear... and death, God granted us everything we needed to praise Him, to trust Him, to face each moment.  He showered us with grace and kindness and love.  And here I am to say, "Blessed be Your Name on the road marked with suffering, though there's pain in the offering, Blessed Be Your Name."

Sunday, December 6, 2009

Two Births, Two Deaths, and a Hope

Multiple times over the last couple months while anticipating the holiday season, I have thought that Christmas would have a new and deeper meaning for me because of Samuel and his birth and death. At some point Kathryn and I were talking about this, and she asked me to explain. At the time the only explanation that I could find was that I have a greater appreciation for the fragility of the human condition, especially for the manner in which we enter the world. All babies are born completely dependent. Samuel’s condition was so tenuous that not only was he unable to help himself, no one else was able to help him. The thought that God would send His Son into this world in such a state is astounding to me. Honestly, it seems crazy, beautiful, unfathomable, absurd. I love Bono’s perspective on this: “…I believe in the poetic genius of a creator who would choose to express such unfathomable power as a child born in ‘straw poverty’; i.e., the story of Christ makes sense to me. As an artist, I see the poetry of it. It’s so brilliant. That this scale of creation, and the unfathomable universe, should describe itself in such vulnerability, as a child. That is mind-blowing to me.”

At the North Point staff Christmas party this last week, I wept while singing the Christmas carol “O Holy Night.” It was the first time in a while that I’d really cried. I was grateful for it. Over and over throughout the song I thought of broken parallels between the birth, life, and death of Samuel, and the birth, life, death, and resurrection of Jesus. I was playing the two stories simultaneously in my mind.

As I reflect on my few minutes weeping to a Christmas carol, the reason for my anticipation of the Christmas season is clearer. In the story and message of the Advent merge the two things that are most present on my heart and mind these days: my son and my Savior. They are the stories of the birth of a son. For me, both are births of great anticipation. Jesus was born into this world weak, frail, and dependent just like Samuel. Jesus was the Son of God and Samuel a child of God. Both lives end in tragic deaths that highlight for me, in the most personal of ways, the brokenness of this world.

For all of the parallels, however, they are very different stories. For that I am extremely grateful because one story gives meaning and hope to the other. Jesus was born to save Samuel from sin and death and pulmonary hypertension and coronary fistulae and heartbreak. Both have died, but Jesus lives. The fact that Jesus lives, that He was resurrected from the dead, is the basis for hope. There is no hope for Samuel apart from a resurrected Jesus, and there is no resurrected Jesus apart from him being born – as both the Son of God and the Son of Man – on this earth.

Since Samuel’s birth I have regularly felt stretched to my limits in two directions. On one hand I am pulled toward heartache and weariness. I miss Samuel, and I am tired of the brokenness of this world. On the other hand, I hope more than I can ever remember hoping. The hope that I have as a follower of Jesus – a hope for an eternity with no pain, tears, or death – has moved from an occasional pleasant sentiment to a consistent longing. More and more I feel that the Christmas story echoes this tension, and that the gap between the two is filled with God’s grace.

Friday, December 4, 2009

Caleb and Joel Mourning for Samuel

Caleb and Joel continue to talk about and mourn for their baby brother.  It both blesses and breaks my heart to watch them.  At least once a day Joel says, "I'm sad Samuel's not here," and he often spends the day pretending to be Baby Samuel.  He will tell me, "I'm Baby Samuel.  You can take care of me."  Or Joel will announce that Cookie Monster is Samuel, and he'll say, "This is Samuel.  You can help me take care of him."  It's precious to see him want to cuddle and care for his baby brother.  The other day he told me, "I wish Samuel was here.  I want to play with him."  Every day it makes me sad to see how much Joel treasured being a big brother and how he misses his baby brother. 

Yesterday Joel and I went to CVS to print a few pictures of Samuel.  As we were paying for them, the saleswoman asked, "Are the pictures of your baby?"  "Yes."  "Is he at home?" "No, he died."  I was remarkably composed in the store, but the moment we stepped outside, I started crying.  Little Joel was in my arms and was immediately concerned: "Are you happy now, Momma?"  I continually try to explain to him that it's ok to be sad, and we can even be happy and sad at the same time -- I can be sad Samuel is not with us at the same time I'm happy to be with Joel.  On the drive home, Joel told me, "I don't like Jesus, Momma."  After some questions, I discerned that he is upset Samuel is with Jesus instead of with us.  When I told him how happy Samuel is and what a happy place Heaven is, he seemed comforted and more ok with Samuel being there.

When we got home, I took Joel in his room and put a picture of him kissing Samuel in a frame.  I explained that I was putting it in Joel's room so he could see a picture of himself being a big brother to Samuel, that he could see his baby brother and remember what a wonderful big brother he is to Baby Samuel.  Joel smiled and said, "It's good.  I like it, Momma."

Caleb still cries about Samuel and missing him, and he often talks to Joel about it.  I regularly overhear them discussing Samuel and Heaven during roomtime or over the lunch table.  I am glad they are talking about it and treasure that they talk to each other about it.  I hope it's the start of a lifelong close friendship between them.  One lunch this is what I heard:

Caleb: "Why are you sad, Joel?"
Joel: "Because I miss Samuel."
Caleb: "I miss Samuel too."
Joel: "I want to hold him.  Maybe Baby June can come." (Baby June is my brother's daughter who was born 16 hours after Samuel.  Joel talks about her a lot and often makes one of his Cookie Monster's Samuel and the other one June.)
Caleb: "HERE?!  Baby June can't come here!  She can't drive!!"
Joel: "Maybe.  Yeah, maybe."

And yesterday Caleb told us another one of his preschool buddies knows about Samuel.   Apparently when the kids were cleaning up, Caleb and Nicholas crossed paths.  Nicholas said something about Samuel and told Caleb he was sorry.  Caleb thanked them, and they both continuing picking up.  Caleb again expressed how very happy it made him to hear his friends talk about his baby brother.

I do love hearing Caleb and Joel's hearts, and I do love that I get to shepherd them through life and comfort them, point them to Jesus, and listen to their thoughts and feelings.  It is a privilege beyond almost all others to be "Momma" to Caleb and Joel, and I pray daily for the wisdom to do it well.  I pray for the Lord to heal their broken hearts and to draw my sons to Himself.  I pray the same for me and for Bryan.  May we as a family be who He wants us to be, may we learn what He wants us to learn, and may we honor Him as we mourn for our beloved Samuel.

Monday, November 30, 2009

August Photos from My Mom's Camera

Here are some of the pictures from my mom's camera when she was here in August and September. 

This is Samuel's dock number where he spent most of his life.


This is in Egleston's cafeteria.  Caleb just saw this picture and told me that he would pretend to be sick when he was at the hospital.  I didn't know that was what he was doing.  I do know most of the time at the hospital he was emphatic about being held.  I can tell by looking at this picture that Bryan and I were weary and anxious to get up to Samuel's side.


Can't you tell how happy they are to see each other?  This was Bryan's birthday, and I don't think we'd seen Caleb and Joel in 4 days.  The last time we'd seen them was when they finally got to go in and see Samuel and when we told them he was dying.


Here we are for Bryan's birthday celebration in the hospital cafeteria with my mom (left) and the Thiels (Dave, Colleen, Jonathan, and Emily).  I remember how hard this "party" was for me.  It took so much effort just to smile.  I was always so much more relaxed and at ease when I was beside Samuel -- even when things looked bad. 


More of Bryan enjoying his two healthy sons.  I don't think I will ever take healthy children for granted again.


This is in Egleston's beautiful garden.  I can see Caleb's need for us in this picture.  At this point, we had taken the boys back up to see Samuel for a second and final time, and my mom and the Thiels had gone to spend a little time with Samuel.  It was the last time my mom saw him alive, and the last time the Thiels saw him.  Samuel died less than 2 days later.

Tomorrow marks 4 months since Samuel's birth and about 3 months since his death.  (He died on the 31st, so there's no exact month marker this month.)  I miss him so much.

Thursday, November 26, 2009

Thankful

This Thanksgiving there is much to be thankful for, but two things stand out to me.  The first is Samuel.  I am so deeply grateful for the 30 days we had with our son.  I wouldn't give up one single minute I spent with him.  What a privilege and joy it was to sit by his side, to tell him about His Creator, to rub his head and stroke his hand, to hold his foot, to sing praises to Jesus, to tell him again and again how much I love him, to read the Chronicles of Narnia out loud to him, and to pray to God with him.  Those were moments of true joy and blessing.  And what an honor and gift it was to hold Samuel in his last hours and to hand him over to our God, to gently walk Him to Jesus' throne and to trust my sweet son into the arms of my God's perfect son.  I am so thankful for Samuel.  I'm thankful for how Samuel showed me my God in new, deeper, more real ways.  How I understand grace in a whole new way.  How I am changed because of the life of my third son. 

And I am so grateful for the many, many people who have stood by our side in our grief.  We have been lavished with kindness, with love, and with prayers.  Family and friends have served us in amazing and creative ways.  From housecleaning, to meals in abundance, to gift cards, to grocery runs, to tangible ways to remember and honor Samuel like pictures, jewelry, a painting, and a tree, to sincerely kind and touching letters and emails, to books and music that point us to Jesus, we have been humbled by the love and kindness of others.  We are thankful for those who have mourned with us and who continue to walk this path of grief by our side.  We could not ask for better friends, a better church community, or a more loving family. 

We are truly thankful this Thanksgiving.  Our family has been richly blessed.  And though I wish Samuel had been with us today to celebrate his daddy's favorite holiday alongside the wonderful Thiels, I am still thankful.  God has been gracious, gentle, loving, and kind.  And He continues to heal our hearts.  Part of that healing is giving Him thanks for who He is, what He's done, and what He's given us.  So, God, THANK YOU for Samuel, for the month of August with him, and THANK YOU for the friends and family who have cared for us so faithfully.  Thank You!

Monday, November 23, 2009

Surprised by Grief

Lately I have found myself surprised by grief.  I think after two and half months without Samuel, the pain and ache in my soul has softened into a settled kind of existence.  It's always there; I'm always aware of his absence; Samuel is actively missed at every turn.  But, the pain is more even-keeled.  It's more predictable, more constant, less poignant.  Or so I thought.  The past few days, however, have held numerous moments of grief rising up and taking me unawares.  It crashes over me and leaves me breathless, clutching at my chest, gasping for air and a reprieve.

For more than a week, Joel has struggled with being sick.  He's finally on the mend and almost his normal self.  But Friday he started hacking and hacking and was having trouble getting all the breath he needed between coughs.  At one point he laid down on the floor and just held his beloved Cookie Monster and waited for the fit to pass.  I scooped him up and held him in my lap and put my hand on his chest.  I was overwhelmed by the sorrow that swept over me as I felt Joel's heart pound under my hand.  It brought back so many memories of Samuel working for every breath of his little life and of how we could always see his heart fluttering under his skin because it was working so hard to pump blood to his body.  Sometimes I would gently lay my hand over his heart just to feel it beating, and having Joel's heart under my hand....it just brought back a wave of grief and sadness.  After Joel's coughing subsided, I ended up going to another room and sobbing.  How I miss my Samuel.

This weekend we also did a little shopping to get some things for a project we need to do and to buy a few Christmas presents before the rush of people flood the stores.  I was caught off guard by another wave of grief in Home Depot.  I was walking through the Christmas section, and suddenly the thought of Christmas and no Samuel was more than I could take.  Again, my hand was pulling at my chest, and the pain was sharp and shooting.  The same thing happened when I was grocery shopping at Walmart and looked up at the Christmas decorations.  Somehow the juxtaposition of such joy in celebrating Christmas with Bryan, Caleb, and Joel and such sorrow in life without my third son knocked me off balance.  I found myself breathing deeply and trying to ease the weight on my chest.

And after dinner one night we all had pudding cups for dessert.  The expiration date on mine was August 31, 2010 -- what will be the 1 year anniversary of Samuel's death.   Another unexpected moment of sadness.  One minute I'm eating my vanilla pudding and laughing at Caleb and Joel, and the next I'm in a daze, thinking about the day Samuel died.

And then last night I loaded on to my computer a disk my mom sent me of all the pictures she took while she was here in August and September.  They were new pictures to me.  There are some of Samuel when he was a couple of days old -- beautiful and relatively well -- and at least one of him two days before he died -- swollen and so sick.  There are photos from days when I never pulled out my camera and therefore didn't have a record of how that day looked.  Mostly they are photos of Caleb and Joel or of me and Bryan at the hospital.  And even those are heartbreaking to see.  I see in our eyes the pain we were experiencing.  I see, in nearly every shot from Bryan's birthday, the way Caleb is draped over one of us, suggesting how scared and lonely he was for his Momma and Dadda.  I see in my face the torn state of my soul -- wanting desperately to run back up to the CICU to be by Samuel's side but also knowing how much Caleb and Joel needed to hold my hand or rest their heads on my chest.  And then there are pictures of the hospital that I never thought to take -- pictures of parts of the garden where Bryan and I spent many anxious hours waiting to hear a procedure was over and we could come back up to be by our son, pictures of the different medicines and machines that sustained Samuel's life, pictures of our dock number, 2112, where Samuel spent most of his life and where his life came to an end.  All of these are heartbreaking in some way or another.  And, though I'm more grateful than I can say to have the pictures, looking at them was so hard and meant another flood of grief and wave of sobs.

Honestly, I'm kind of surprised that I haven't yet learned how grief is ever-changing, how it is unpredictable, how it swells and ebbs but not in any kind of rhythm.  Grief is grief.  It does its own thing, and I cannot control it.  I cannot chart out a map for it.  I can only pray for the wisdom and courage to respond willingly and honestly when it catches me by surprise, for the wherewithall to identify it when it shows up and to let it wash over me and therefore boulster me up for the next wave and the next plunge.  Each time I follow where grief leads, I find I am grateful for the journey, and I am a little less broken and a little less afraid.  Clearly God knew what He was doing when He designed grief.  I would never have dreamed it up or made it just this way, but I am thankful for it.  As weird as that sounds, it's true.  It's a healing journey.

Saturday, November 21, 2009

Pancake Masterpieces

I thought I'd post some of Bryan's amazing pancake art on here.  I have a whole album of his pancake masterpieces on Facebook, but I will just post the ones from the last couple of Saturdays.  Our Saturday morning tradition is that the boys each pick a shape, character, picture, etc that they want Bryan to make a pancake of.  Then, regardless of difficulty, Bryan somehow manages to make a pancake that looks like what they've chosen.  It's remarkable every time.  You will soon see what I mean....


Pretty impressive, right?  This is Joel's pick -- Boo from Monster's, Inc.


This is Caleb's pick -- the house from the movie Up.


Here is Joel's pick from this morning -- Leakless from the movie Cars.

And Caleb's pick, Frank, from Cars as well.  You have to admit it: Bryan is good!  I think it's his artistic outlet.  Too bad they're edible and can't stick around.  :)

And just because, here are a couple of cute pictures of Caleb and Joel from the last couple of weeks.  I am so crazy about these boys, and they do so much to heal my soul as I miss their baby brother.  They miss Samuel too.  In fact, yesterday Bryan overheard Caleb talking to Joel about Heaven and how he can't wait to go there and see Samuel.  He kept saying, "I CAN'T WAIT to get to Heaven!  It's a wonderful place!"





I am grateful for this family.  God has blessed me so, and I want to treasure each moment He gives me with Bryan, Caleb, and Joel.  I am learning to live in the moment, soak up each day for what it is and not miss today by longing for yesterday or by worrying about tomorrow.  I have hardly mastered it yet, but it is something on my mind.  So, God, thank you for today and all that it holds.  Thank you for granting me another day to praise You and know You and love You.  Thanks.

Tuesday, November 17, 2009

A Day Without Tears

Saturday marked a rather momentous day for me.  It was the first day since before Samuel's death that I didn't cry.  By my recollection, I cried 83 days in a row.  That has certainly never happened in my life before.  I can't remember a day when I didn't cry while Samuel was at Egleston, but I wasn't really paying attention, so I counted from the day Samuel went downhill, and we knew death was on the horizon if God didn't intervene.  I definitely cried those last nine days. 

For some time now, I've wondered how I would feel when the day came without tears.  Would I feel guilty?  Like I was stuffing my grief? Sad that I was able to go a day without shedding tears over my son?  I worried that it would bother me to be dry-eyed.  But it didn't.  At about 11pm that night, I thought, "Huh.  I haven't cried any today.  I don't think I'm going to cry before I climb in bed.  It's been a good day, and I'm grateful for that.  I still miss Samuel tremendously.  I still wish he was in my arms and in this house, but today has been a easier day than many, and that's a good thing.  Thanks, God, for a good day." 

The days since Saturday have held plenty of tears, and that's reassuring in some way.  It's good to have good days, and it's probably good to have bad days.  It means I'm still ackonwledging my loss and sorrow.  I'm not pretending life is better, and I'm over it and ready to move on.  That's a ridiculous thought.  As time goes by, I am more and more convinced that I will never "get over" Samuel's death.  His life and death have changed me unalterably.  I am different because of loving and losing him.  I will never be the person I was before Samuel entered my life, and I don't want to be.  I will be grieving my son in some fashion or another for the rest of my life, and that's as it should be. 

So a day without tears is simply that...a day without tears.  Am I any less of Samuel's mom because of it?  Any less a changed person?  Any less aware of my son's absence?  No.  But I did have a better day, and that's something to note.  Personally, I think it's because I had a Chick-Fil-A peppermint chocolate chip milkshake on Saturday, and who can avoid being cheered up by that?  :)

Friday, November 13, 2009

Growing, Trusting, and Remembering

God is growing me and growing my heart.  He is revealing to me the ways in which I am not fully surrendered to Him, the ways in which I still cling to my own desires and resist giving Him my hopes.  It is painful to see that there are still parts of my heart that I withhold from Him, that I haven't been trusting Him as completely as I thought.  I have so much to learn still, so many ways in which I need to grow, and I need God's grace to cover over my failures and shortcomings.

As I sit here and listen to Caleb and Joel talk about Samuel in the other room, I ask myself the same question I've been asking for a couple of weeks now: "Can I trust God?"  The last few months have taught me that I can't trust Him to do what I ask.  I can't trust Him to answer my prayer the way I ask Him to.  So despite the deep heartbreak of losing Samuel, can I willingly walk forward in life and trust God with whatever is ahead?  Can I trust that His answers to my prayers are good?  If He never answers another prayer the way I ask Him to, can I still trust Him?  Is He enough for me if everything else in my life is stripped away?  I am working my way toward a solid "yes," but the journey is taking me longer than I thought it would.  The one thing I am confident of is this: though I can't trust God to do what I want, I can trust God to be God.  I want that truth to be enough for me.  I want to be able to move forward in life without fear -- without fearing what heartbreak may be around the next corner -- instead, resting peacefully in the truth that God is God, and I can trust Him no matter what comes my way.  I am working on this, but it is a slow and painful process.

This past week Bryan and I ordered a Christmas stocking for Samuel.  It arrived on Wednesday and has his name embroidered on it.  It was bittersweet to get in the mail.  We want to make Samuel a permanent part of our family, and so we want him to have stocking and to be celebrated on his birthday every year and at Christmas.  We don't yet know how we will do these things, but we are talking about traditions we can start that will help us remember Samuel, rejoice in the time we had with him, and bless others in the process.  We are trying to come up with ways we can serve and bless others through Samuel's life -- be it gifts of time or money or love.  We don't know yet what traditions we will create, but we know we want Caleb and Joel to think of Samuel as their brother always, and Bryan and I want to remember him in ways that are honoring and life-giving.  So this is on our hearts a lot lately.

This past week held a couple of other memorable moments as well.  Bryan and I started looking at gravestones for Samuel -- horrible -- and spent some time remembering Samuel's last hours.  I have found great comfort in knowing that Bryan shared my memories of that August morning -- that I wasn't the only one carrying around the weight of that day -- but we had never talked about Samuel's actual death together.  It was good for me to be able to talk about that morning with Bryan and not have to try and describe the horror of those hours because he already knows just how awful they were.  We talked about how, despite the blessing and peace of that time with Samuel in our arms, it really was just horrific.  I won't go into details because it's not something for others to enter into lightly or without a reason to enter that pain, but holding our son while he died was...indescribably awful.  And it was healing for me to relive that morning with my husband, to know he saw the same things I saw, he heard the same words and sounds, he held the same precious but broken son in his arms and felt all the ways in which Samuel was unwell like I did.  He lived those dreadful hours with me, and I don't have to carry them by myself.  I am so, so grateful for my Bryan and how he has journeyed with me through Samuel's life and death.  What a gift.

The other significant moment in this week was me holding a baby for the first time since Samuel died in my arms.  Our small group friends, David and Beth, let me hold their beautiful daughter, Chloe, who was born 10 or 11 days before Samuel.  I was scared to reach out for her and take her, but I also really wanted to hold her.  I have always loved, loved, loved babies and holding them, and I have found that when I see a baby, I still want to scoop the little bundle up.  When we were at Egleston and knew Samuel was dying, I feared that I would lose this love for newborns, and I am grateful to find I haven't.  Holding Chloe was emotional and hard for me, but it was also precious and healing.  It was good to have the weight of a baby in my arms, and though I wish I could have held and cradled and comforted Samuel everyday for the last three and half months since his birth, it was healing to rejoice in the miraculous life of Chloe (and she is especially miraculous, but that's not my story to tell).  It is good for the soul to rejoice with those who rejoice, and I am so thankful for those who have mourned with us as we mourn.  I see once again the blessing of community and walking through life together.

As God grows my heart, both for Him and for others, I find again how much I need Him.  I need Him for each moment of every day, and I am repeatedly humbled by His care for me, His love of me, and the people He has placed in my life.  Can I say yet again, it is a good God we serve.

Monday, November 9, 2009

Obstacles to Mourning

Healing is painful. Growing is painful. Healing and growing at the same time is very painful. That is what I am finding out these days. Little by little God is healing my broken heart. At the same time that He is mending me with His comfort, He is growing me. While I knew that my need for healing was great, I was ignorant that the room for growth was great as well. I hadn’t planned on this. It is necessary and good, but it is hard. Harder than I expected. Through all of this I am becoming increasingly aware of the obstacles that I face as I seek to grieve well, to pay attention to my soul.

One of the things that I am discovering about myself is an old, bad, and deeply-engrained habit: ignoring my emotions. Somewhere along the way I picked up and/or developed some faulty assumptions and unhealthy perceptions about emotions, and I think that I am on the front end of a long process of identifying and mending my perspective. I have had multiple situations in recent weeks while intentionally trying to pay attention to my soul in which an emotion, usually heartache, has been stirred up. Strangely, in the same moment that I am trying to pay attention to that emotion – What is it? What triggered it? Why do I feel that way? – a competing reflex disposes of it. Apparently after 15-20 years of practice, I am remarkably efficient at mindlessly repressing my emotions. One moment I am on the verge of tears, and the next moment I feel close to nothing. I am troubled by this. Because of this I think that grieving well requires a lot of intentionality from me.

Recently I have thought of choosing to pay attention to my soul as analogous to choosing to exercise. At least for me, choosing to exercise is always hard. It is even harder when I am tired. It is harder still when I don’t have much time. But when the exercise is physical therapy, motivation is particularly elusive because choosing to exercise is choosing to enter pain. It is always hard for me to pay attention to my soul because the assumptions and habits that I just described are at work against me. It is even harder than usual these days because I consistently feel weary. When 8pm comes and the boys are in bed, everything in me wants to check out and crash and then ride the snooze button in the morning. With work, sleep, household responsibilities, and the fact that everything seems harder these days, my margin seems really narrow also. Most of all, however, it is difficult for me to choose to pay attention to my soul when I know that it means entering into deep pain. I have a hard time getting motivated for that.

The analogy of exercise is helpful for me in identifying yet another challenge to paying attention to my soul. The benefits of individual choices to exercise are not immediately evident, but are cumulative. No one sheds all the weight that they want to lose in one workout. No one achieves their time or distance goals in their initial run. No one’s energy level and alertness is permanently boosted after the first trip to the gym. In the same way, any comfort felt in any one conversation, any rest experienced in any one time of prayer, any healing received in any moments of reflection are incremental and nearly imperceptible. Like the short-term benefits of smart choices, the short-term costs of not exercising and not paying attention to my soul are also incremental and nearly imperceptible.

When it comes to my few windows of margin these days, I find myself considering two primary options: paying attention to my soul and checking out. Checking out (i.e. TV, surfing the web, video games, etc.) is a particularly compelling option because it provides an immediate and tangible respite from both busyness and heavy-heartedness. Unfortunately, the benefits of choosing to check out are fleeting. No one touts the long-term benefits of watching hours of primetime sitcoms. There is, however, a long-term cumulative cost to constantly choosing to check out and a long-term cumulative benefit to regularly choosing to pay attention to my soul. I’m still trying to figure out how to manage the tension between the two in a healthy way, but I am confident that I want to choose to prioritize long-term benefits of paying attention to my soul (i.e. rest, comfort, healing, hope, joy, etc.) even with their short-term costs (i.e. remaining under the weight of my grief) over the short-term benefits of checking out (i.e. a respite from my heavy-heartedness) with their long-term costs (i.e. a wounded and neglected soul). While this is more important than ever for me to do because the stakes are higher, it is also more difficult than ever because the pain is deep, and I am working against faulty assumptions and old habits.

In short, I am realizing that for me in these days, choosing to pay attention to my soul is an exercise of discipline, courage, and wisdom: discipline because my default is to ignore my emotions, courage to choose to enter pain, and wisdom because the benefits of doing so are not immediately evident. Thankfully, I don’t need to muster these on my own. I am known and loved by the God whose Spirit bears the fruit of self-discipline in the lives of those He indwells, who gives courage with His constant presence, and who liberally grants wisdom to those who ask. The choice that I must make is to come to Him and walk with Him. Of course, as simple and obvious as it sounds, this too is hard.

Friday, November 6, 2009

A Soul that is Well

Last night Bryan and I joined our dear small group in attending Night of Worship and Communion at our church, North Point Community Church.  It has been a really long time since I've been to something like it, and I am so glad I went.  It was such a needed reminder of my relationship with God, of His love for me, of His redemption of me, of just how good and great He is.  How I needed to proclaim out loud my love for Him and His faithfulness to me.  It renewed my spirit to sing God's praises and to join a crowd of people in declaring His Lordship and trustworthiness.

The second song of the night, "Breathe on Me," was very emotional for me.  One line in particular was moving: "You are the God of my story.  Write every line for Your glory."  How I long to live this -- to know in every moment that God is writing my story and for HIS glory.  How I want for Samuel's life and death to be for God's glory, and how I want to willingly open my hands and offer my life for Him to use as He pleases and as He knows is best.  I pray every day that God would use Samuel's story -- and therefore ours -- to draw people to Him. 

A few songs later, we sang "It is Well," which we also sang at Samuel's memorial service.  As I was singing, I asked myself, "Is it well with my soul?"  And I found the answer was a resounding "YES!  It is well with my soul!"  It was so comforting to realize how truly well my soul is, that despite my sorrow and daily tears, despite missing Samuel more than words can ever say, despite the continual feeling of emptiness in my heart and my house, my soul is truly well.  My soul is confident in God's goodness to me and His presence with me.  My soul can swell with joy in singing to my very good God.  What a healing and peaceful realization that was!

I've taken communion I don't know how many times in my life, but last night was different.  Last night I knew the very personal pain of losing a son.  As I sat with the bread and juice in my hands, I kept thinking about how God gave up His son -- a sorrow I can intimately relate to -- and how He did so by choice and for me.  God willingly endured the suffering I'm facing because He loves us, and He wants to offer us forgiveness, freedom, and redemption.  I am a recipient of that matchless love of God, and I am so grateful for His sacrifice -- a sacrifice I am far from truly understanding but that I grasp better than ever before.  I cannot fathom the depth of pain God suffered to give up His blameless son for very blameworthy people. 

About half way through the service, Bryan noticed one of Samuel's doctors a few rows away from us.  I was really surprised that our lives would overlap, outside of the hospital, with one of the Egleston doctors, and immediately I felt this deep gratitude and joy in my heart that God would allow us to see someone who cared for our sweet son.  We found Dr. Kuo after the service and spent awhile talking to him and thanking him for his work and for being a gentle doctor back in August, talking to us about how sick Samuel was.  Seeing him was another glimpse of God's grace.  It was so good for us to be able to see and talk to and hug a man who was a very real part of Samuel's life and story.  It was very healing to me to be able to say thank you in person -- and with a smile on my face instead of fear in my eyes.  I walked away feeling very loved by my good God.  It was another tangible gift from Him.

So, last night was a beautiful reminder that I am a beloved child of God, that He is a loving, gentle, kind, GOOD Father, and that my soul -- as battered as it has been -- is truly and deeply well.  I am so very grateful for a God I can worship and to whom I can proclaim with full confidence of His worthiness, "Glory to God!"  What a blessed woman am I!

Monday, November 2, 2009

Halloween and Birthday


The four of us on my birthday.  Bryan and I went out on a date, which was really nice.  We spent a lot of time talking about Samuel and how we're grieving him.  We needed the time to connect and grieve together.  I am so very grateful for my husband.

My two big boys giving me a kiss sandwich.  These moments make some of the frustrating stuff (like potty training!) worth it.  :)  They blessed me a lot on my birthday -- probably my record teariest day so far.  It was a hard day, but I would say it was a hard day that was good.  My tears were healing, and  someone I don't know came up to me and asked if I was "Samuel's mom."   That phrase, though it immediately triggered tears, was so wonderful to hear because I don't get to think of myself as Samuel's mom very often, and very few people in our lives actually say Samuel's name.  It was beautiful to hear it spoken and in connection with me.  So, thank you, Seal, for finding me and for calling me by a title I want to be known as forever. 






Caleb was Bumblebee for Halloween, and he LOVED dressing up.  Joel was a candy corn.  They were pretty hilarious about it all.

Saturday, October 31, 2009

Marking Time

Today marks 2 months since Samuel died.  Tomorrow marks 3 months since he was born.  Tomorrow also marks Joel's half birthday and my birthday.  I don't want it to be my birthday; I don't feel like celebrating anything, and I don't want to move on without Samuel.  There is something cruel about time marching on when it feels for me like time has stopped, and I'm frozen in this place of grief and heartbreak.  I know the passage of time will ultimately lessen the pain I feel, but as we move farther and farther from the month we had with Samuel, it hurts my heart to see those days grow more distant -- to see the time when I was holding his hand, singing to him, stroking his head, or whispering my love into his ear move farther into the past.  These marker days seem particularly trying for me.

Today has been a heavy hearted one for me.  I have followed the life of another baby boy who struggled with a heart defect and something called CDH -- congenital diaphragmatic hernia.  He was born on Oct. 1, and he passed away yesterday afternoon.  I have never met his parents, but I am continually thinking of them and their new, fresh pain.  I woke up thinking about what this day is for them -- their first without Andrew.  It breaks my heart afresh to know others are experiencing this horrible grief of losing a newborn son.

In the dark days, when I find mysef crying into the peanut butter and jelly sandwiches I'm making, it's hard to believe I had some good days.  I know I did, and I know I will again, but they feel like faint memories, and I feel like I'm back where I was 6 weeks ago.  It's another reminder that this grief will be a long road, and I need the courage to walk it well, to trust in my God, and to face the ache in my soul.  Lord, grant me all that I need to honor You in this journey.  And hold and heal my broken heart. Amen.

Thursday, October 29, 2009

The Weight of Bad Days

After a succession of quite a few good days, I've been caught by surprise by a series of bad ones.  I know grief is an unpredictable beast, and the sadness creeps up unexpectedly sometimes, but knowing that didn't seem to make me any less surprised when yesterday was just a down right bad, hard day.  I cried and cried and cried.  I couldn't stop.  And today I feel constantly on the brink of tears.  The weight of grief has come crashing back down on me, and I feel almost crushed underneath it.  I know this is "normal," but can I just say it sucks?  I miss Samuel so, so very much.  I don't like looking ahead and seeing an interminable barren land of life without Samuel.

As much as I trust God and know He is good (and I do!), I wish I had Samuel.  I wish He had written my story differently.  I wish He had swooped in and saved the day and healed my sweet son.  I wish I could have brought Samuel home with us and put him in his crib and woken up multiple times a night to feed and soothe him.  Instead of sitting at the lunch table typing this entry while waiting for my pokey Joel to finish his lunch so we can go pick up his big brother from preschool, I wish that I was frazzled from trying to get Joel his lunch and also feed Samuel while trying to get a few bites in for myself as well.  I wish I knew what it was like to have 3 boys in the same house, trying to be the mom that they each need.

Instead of the harriedness of having three sons 4 and under, I have to watch the three people I care for most in the world wrestle with their grief.  Not only do I have my own pain to face, I have three very dear, precious souls hurting around me too.  I never thought about how hard it would be to watch Bryan in so much pain much less Caleb and Joel, who continue to struggle with the death of their baby brother.  Joel still doesn't understand that Samuel is never coming home, and Caleb continues to burst into tears out of nowhere, saying, "I miss Samuel!"  It is heartbreaking to watch my husband and sons hurting.  And my heart was already broken before witnessing their suffering.

Because of my surgery, I am not allowed to pick up Caleb and Joel for several weeks.  Since I can't lift Joel, we have been forced to move him out of his crib and into the big bed in his room.  I wasn't prepared for this, and it's been surprisingly sad for me.  Yesterday morning when I went to get Joel up, I looked at his empty crib, and it hit me: we have two cribs in this house and no children sleeping in them.  This was devastating to me.  As Joel hits new milestones marking his growth and graduation into "big boy" status, Samuel's absence becomes more and more noticeable and real to me.  I miss him in new ways.

I woke up this morning reminded yet again of how dependent on God I am.  I really can't do this on my own.  It's disappointing how that lesson had already faded after a few good, manageable days.  I am sad that I haven't been able to better hold onto what He has taught me.  I need Jesus.  Desperately.  And that's always been true, but in my brokenness and sorrow, it's just more tangible to me.  I am grateful that yesterday and today have resurfaced my deep awareness of this truth, but I am hoping I can hold on to this truth even in the good days...'cause I can't do a lifetime of these bad days.  Help me, Lord!

Sunday, October 25, 2009

Dreaming of Samuel

I've spent the last 2 days in bed, recovering from surgery to repair an intestinal problem I got from pregnancy with Samuel.  It's been kind of nice to stay in bed all day.  Since Samuel died, I've kind of wanted to just stay in bed, and now I have a reason.  Poor Bryan has had to play nurse and be the solo parent on his weekend, but he has been a trooper.

In fact, Caleb and Bryan just made a menu of all the stuff in our fridge, and Caleb brought it up to me to take my order.  They named the restaurant "Joely Loving Orange Restaurant" because Joel does REALLY love orange.  He announces it daily: "Orange! Orange my favorite color!!!"  Caleb has been a very proud server, and when I compliment him by saying, "You're the best server ever!" he replies with, "I know."  He has been beaming every time he's come up to check on me and see if I need anything else.  Leave it to Bryan to think of making a game out of lunch and caring for me.  He is a GREAT dad!

This past week one of my best friends, Kiley, came to visit with her 21 month old daughter.  It was really wonderful to have her here.  We were able to enjoy time together and cry together.  I realized how good it is for me to talk about Samuel and our time in the hospital.  I obviously have lots of opportunities to write about what we've experienced, but I don't get as many chances to talk about it and share some of the parts I wouldn't want to post.  It was healing for me to have such a precious friend here.

Shortly after Samuel died, Kiley told me she was praying I would have dreams about Samuel.  I was a little nervous about this because I thought dreams of him would only be heartbreaking.  But I was wrong.  Last night I had my first Samuel dream.  In it Samuel was at home with us (it was a different house than our actual one -- as is often the case in my dreams).  I was aware in my dream that Samuel was supposed to be dead, and I think for part of my dream he was.  I was holding him, and he was very, very cold.  I kept searching for a blanket to warm him up while Bryan was talking to a neighbor.  At one point I looked down at Samuel, and his eyes were open.  He was looking at me and looking all around at the room.  He was perfectly alert, and he knew who I was.  I was stunned and couldn't stop staring at him and smiling.  I got Bryan's attention, and we both just looked at Samuel and talked to him.  He was about 3 months old -- which is how old he would be next weekend -- and he was beautiful.  Actually, he reminded me of Joel at about 5 months.  His eyes were a blue-green color (I never really could tell Samuel's eye color because the lighting in the hospital wasn't very bright, and later the whites of his eyes turned electric yellow from the jaundice, and I couldn't tell his iris color next to it), and he was so happy.  I kept soaking in his little face because it was the first time I got a chance to really study him without all the tape and tubes on him.  He had a few bruises and scratches from where the tape and tubes had been, but he was gorgeous.  No puffiness, no yellow skin.  Just Samuel as he would have been as a 3 month old baby.  It was such a happy dream, and I woke up feeling that way -- happy for a glimpse of Samuel well and growing, happy for the moments when he looked at me and knew I was his momma, happy to be holding him when he was squirming and not on a paralytic, happy to see his face and his eyes without all the medical things impeding my vision, happy to have a few moments with my Samuel.  It was a good dream!

When I think about Samuel and what I would have dreamed for him if he had lived, it would be simply this: a life walking with Jesus.  And isn't that what he has?  He gets to spend eternity with God, and he got to skip all the parts where he would drift away or make poor decisions or reject His God.  He gets to live out the verse that was on his prayer blanket and that we put on his memorial program: "Samuel grew up in the presence of the Lord" (I Samuel 2:21b).  What better thing could I wish for my son?  I am thankful for a dream of holding Samuel, and I am so thankful that my sweet son is living the greatest dream of all -- life with Jesus.

Wednesday, October 21, 2009

Happy 9th Anniversay, Bryan!


Today, October 21st, is our 9th anniversary.  It's really, really hard to believe we've been married for nine years.  Nine seems like a big number.  And yet, at the same time, I can hardly remember life without Bryan.  We've known each other for 13 years -- first as acquaintances, then big group friends, then small group friends, then as best friends, and finally as the person with whom we knew we'd spend the rest of our lives.  Our journey together has had quite a few significant trials -- Bryan's dad's death, my parents' divorce, and now the loss of Samuel, to name a few.  I can say with all the confidence in the world, there is no other person with whom I would rather face the heartbreaks and heart-swells of life!

Our freshman year of college, when Bryan and I were purely friends, I remember thinking, "Bryan Apinis is one of the most honorable, respectable guys at Wheaton."  I was right.  I think in marriage you get to know someone's character in ways others don't.  My 9 years with Bryan have taught me that he is indeed a man of character, honor, integrity, fidelity, truth, grace, humility, kindness, wisdom, selflessness, enouragement, faith, and generosity.  I have never met another man who inspires me like Bryan does, who leads me to Jesus like he does, and who can serve in such continuously unselfish ways.

Bryan loves me in ways that still amaze me.  He is the most complimentary person I know, telling me many times a day how beautiful he thinks I am (though he gets exasperated with my inability to receive this compliment to his satisfaction), how much he loves me, how blessed he is, and how he loves coming home to me and our boys.  And Bryan is so intentional about our marriage -- about spending time together, talking about the real stuff of life, asking me questions to get to know me better, praying for me, and showing me love in the ways I best receive it.

Just one anecdote that shows what a wonderful man I have married... 9 days before Samuel died, Bryan and I got a very poor report from the night nurse.  We climbed in the car that morning, both wondering if it would be our last day with our 3rd son.  We were quiet and heavy-laden on the drive down to the hospital, both thinking we might be headed to the worst day of our lives.  About 15 minutes from Egleston, Bryan started waving down a homeless man on the other side of a very busy intersection.  I was so absorbed in my own thoughts, I hadn't noticed anything outside of myself, but here was Bryan trying desperately to get the attention of a dirty, scrawny man.  The man came to our car, and Bryan handed him some money.  About 20 feet later, as we were driving away, I heard the man yell as loud as he could, "Hah!  Thank you!"  It turns out Bryan had given him $20.  The homeless man was surprised and grateful, and I just kept thinking, "If he only knew!  That man has no idea that Bryan is headed to the death of his son.  What selflessness to be thinking of others at a time like this."  Bryan then told me, "I've been praying for him for 2 weeks without knowing it.  When I was fasting for Samuel, I asked God to help me love others and see others' needs in this time.  I was praying for that man."  I spent the rest of the drive to the hospital thanking God for Bryan, for a man who can see past himself even in the most dire of circumstances, who can be generous even when life seems to be sucking us dry.  (Incidentally, we never went back home again until after Samuel's death.  It was the beginning of the end.)

I am a ridiculously blessed woman.  I have not deserved my husband.  I am not generous like Bryan is; in fact, so many of his strengths are my exact weaknesses.  Bryan challenges me to be a better woman just by being who he is.  I am so very grateful for my love, Bryan Christopher Apinis, and for a lifetime together as husband and wife.  Thank you, Jesus, for giving me the most admirable man I know!  And, Bryan, Happy Anniversary!  I LOVE YOU!

Sunday, October 18, 2009


We went to Berry Patch Farms today and had a great time.  We were grateful for the sunshine after what feels like a month of rain, rain, rain.  Though the rain was wonderful in its own way, the sunshine is a bit more cheerful.  It's our annual tradition to go to the pumpkin patch, and we enjoyed the time together.