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.