The Goodbye Place

Dearest Sophia,

After you died I locked away my grief into different rooms in my heart.  Some of the doors I could easily open and I could enter the rooms without fear.  Other rooms stayed shut for longer, and only after time was I able to go in.  Then there were the rooms that were tucked the deepest into my heart, with the strongest locks.  They were the rooms where I put the memories of the day you died, and the memories of singing our song (How He Loves) to you. 

With only two letters left to write to you, I have decided it’s finally time to enter into those rooms.  I always knew I wanted to write about your last days, even if just for a record of those memories, but I’ve never had the strength to do so.  This week I feel God is giving me the strength to unlock the doors of the scariest rooms of my grief, and enter.

So here is an account of your last days and moments on this Earth, my precious daughter.

On July 19th (day 44 of your life) we were told that your heart condition had worsened, and that you only had perhaps a week left to live.  One of the three holes in your heart had gotten bigger and there was fluid filling the space around your heart and your lungs.  I remember standing there, listening to the doctors, but barely being able to fully understand what they were saying.  I think I just stood silently for awhile, as tears fell down my face, until I was able to muster up enough words to ask if we could stay with you around the clock.  Even though they had never let another family have 24 access to the PICU before, they said we could.  So that Friday we essentially moved into the hospital.

While we were in the hospital the nurses were all very gracious and let us hold you as often and as long as we wanted.  This was quite a change from the norm, when we would go days without even being able to hold you for a few minutes.  Your dad and I took turns sitting with you throughout the night, while the other got a few hours of sleep in a family sleeping room.  When it was my turn to be with you I just held your hand, stroked your face, sang to you, and read to you from your Jesus Bible.

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Your precious body was so swollen from all the fluid.  It broke my heart to see you so uncomfortable.

On Saturday, July 20th (day 45 of your life) your daddy and I went home in the morning to take showers and change clothes.  Your grandma and grandpa had come to the hospital to be with you, so we felt comfortable leaving for an hour.  However, as soon as we got home (about 20 minutes after leaving the hospital) we got a call saying that we should get back as soon as possible.

When we got back to the hospital they said your heart was suffering from arrhythmia (irregular heart beats) and your oxygen saturation levels were falling quickly.  As soon as we got into the room I sat in a chair and they placed you in my arms.  I had wanted our song to be playing when you passed away, so we started playing it and your daddy, grandma, and grandpa all knelt around you and sobbed.  We told you how much we loved you and how proud of you we were.  I remember my eyes constantly shifting from the monitors to you.  I was watching your oxygen levels drop lower and lower, and was just waiting for the moment that you would be gone.  I felt a sense of panic as it dipped down and couldn’t stop saying that I loved you, over and over.  I was almost hyperventilating as I repeated over and over how much you meant to me.  It was not a calm moment, but one filled with fear and desperation. 

But then, by the grace of God, your heartbeat started to stabilize and your oxygen levels started to rise.  You went from being completely critical to relatively stable in the matter of 5-10 minutes.

When your levels stabilized we were all in a kind of emotional shock.  We had just gone through the motions of losing you, yet you were still here.  We had said goodbye, and still you remained.

Little did I know that we would have four more of those experiences throughout the next 48 hours.

For the rest of Saturday you remained stable, but we made the decision to discontinue most of your IV medications.  Because your body was so swollen, and you were not urinating, we didn’t want to put any more liquid in your body than we needed to.  We weren’t sure if your vital signs would crash again, so we had many of your aunties and uncles, and your grandma and grandpa Ly, Skype in to see you and to tell you how much they loved you.  Even your precious doctor came to hold you (for the first time!).

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Saturday night daddy and I took turns, again, staying up with you all night.   I remember that night was harder because you seemed even more uncomfortable.  I think it was all the edema that kept you crying.  Watching you in pain, I just told you over and over that it was ok for you to let go.  I let you know that you would be with Jesus so, so soon and that you didn’t have to fight anymore.

But you still had more fight in you.  And we would have you for 29 more hours.

Sunday (your 46th day of life) was an extremely difficult day for us, emotionally, and for you, physically.  On Sunday morning we ordered some sedation for you since we knew how uncomfortable your were.  The doctors warned us that the sedation could cause your heart to slow down, but at this point we knew that you were not going to live.  Our priorities at that point were to make the last hours of your life as painless as possible.  By this time your oxygen saturation levels never got above 85%, and would periodically dip down into the 60’s.  We knew that your fight was coming to an end.

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Throughout the day your heartbeat would drop dramatically and so would your oxygen saturation.  We (me, daddy, grandma, and grandpa) would gather around you and tell you goodbye.  But each time you would pull your heart rate up on your own and we were able to keep you for a little longer.  Saying goodbye to you, over and over, was by far the hardest thing that I have ever had to do in my life.  I remember one of the times we thought you were going I was holding you, and your body made a sharp jerking motion.  It scared me so much and I was so afraid that you were in pain, and that pain would be your last memory.  After a few times of almost losing you it felt like God was playing a cruel joke on us.  I didn’t understand why He would make it seem like He was taking you to Heaven, and then would just give you back to this Earth.  Later, it would all make sense.

Despite the fact that you had several episodes of your heart failing throughout the day, you were kept very comfortable through sedation.  You slept much of the day, always in someone’s arms, and were completely surrounded by love.  In the last 48 hours of your life we had soft worship music playing non-stop, had the lights dimmed so you might open your eyes, and had the door to your room closed with your sound machine humming all in an effort to keep you as calm and comfortable as possible.

On Sunday you had many wet diapers, which was good in that your body was free of some of the fluid, but the nurses said it was a sign that your body was shutting down.  Your oxygen saturation had been low for many hours, and your body was starting to let go.

Late Sunday night your grandma and grandpa went home to get some rest.  Daddy and I knew that this would most likely be our last night with you, so we both decided to stay up all night with you.

We had been sitting in a chair and holding your all day, but that night we both wanted just to be able to lay down next to you.  We had the nurse lay you back in your bed and daddy and I took turns snuggling with you.

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From about midnight (officially July 22nd, your 47th and last day of life) on your heartbeat and oxygen levels slowly started to decline.  This last night things were very different than they had been in the two days prior.  There were not sudden drops that sent up into a fearful panic, everything was slowly and steadily slipping away.  I know that this was a gift from God.

We knew the end was so near, yet we were given lots of time to process it in a meaningful and healthy way.

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After snuggling with you in the bed, I picked you up and held you for a few hours.  That was the last time that I would ever hold you that long.  I remember while I was holding you your face seemed to change.  You looked so incredibly peaceful and beautiful in those last few hours, which was such a contrast to the pain we had seen you in just 24 hours prior.  As I gazed at you, my precious daughter, I felt such a sense of pride in your life.  I knew that you were such an amazing, strong, fighting little girl, and I was so grateful that I had been given the privilege to carry you for 9 months and to be called your mommy for 47 days.

After I held you it was daddy’s turn to lie next to you.  He had always told me that all he ever wanted was the chance to bring you home and to be able to curl up with you on the couch.  He didn’t get to take you home, but he did get to curl up with you in your hospital bed.  It was then that we made the last video of your life, just two hours before you went to Heaven.

By 4:00 AM your heartbeat had been in the low 20’s for several hours, and your oxygen saturation levels had been holding in the 50-60%.  There was no hope for you living, and in many senses you were already gone.  We were tired, and more importantly we knew that you were tired of fighting.  We knew it was time for you to go.

We told the doctors that we didn’t want you to suffer any longer.  So at a little after 4:40 AM on July 22nd, a nurse came into your room and removed your breathing tube.   She placed you in my arms and quietly left the room.  Even though you were no longer connected to the ventilator, you managed to breathe on your own for several minutes.  You were a fighter until your last breath.

I held you and your daddy sat next to you.  This time there was no feeling of panic or anxiousness. I know now that’s why God had us say so many goodbye’s to you before.  It was so that at our final goodbye we wouldn’t have to tell you too many things—we’d just be able to savor your last seconds.  I remember calmly telling you that I loved you and that you would be seeing Jesus very soon.  We watched as the numbers on the monitors slowly fell to zero. 

Zero.  No more heart beats.  No more breaths.  You were gone.

The doctor had been watching from the window and as soon as he saw you were gone he came in and said “I’m sorry to tell you that at 4:53 AM, Sophia went to Heaven.”  The nurses then came in and unhooked you from all of your wires and cables.  We told them to take out your intubation tube so we could hold you the ways we had always wanted to.

I called grandma and grandpa and told them that you were gone, and they quickly came back to the hospital.

In the meantime daddy and I took turns holding you against our shoulder, held tight against our chests, they ways we had never been able to do before.

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Then your grandma and grandpa came and got to hold you in the ways they had never been able to before.

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A nurse came back in after we had held you for around 30 minutes, and said that they would give you a bath.  We helped her wash your precious swollen body, and then we dressed you in a beautiful pink dress that I had brought for you to wear after you died.  We held you some more and just tried to savor the last moments that we would have to spend with your physical body.

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Then, about an hour after you had passed away, I carried you for the last time.  I carried you out of the PICU walls, into an elevator, and down to the basement of the hospital where we would leave your forever. 

Looking back on your last days and moments I realize just how much I miss you.  Opening up this room of grief in my heart has completely broken it again.  Oh, how I wish we had had more time together. Oh, how I wish you had not had to die at all.  But oh, the grace of God I see in those last days and moments.  

I look back at the pictures and want to tell myself (then) that your next year is going to be your hardest yet, but you will survive.  You will be ok.  You will heal.  You will feel safe to love again, and to love deeply.

Sophia, thank you for letting my hold you in my arms when you went to Jesus.  I’m so glad that all you felt in those last moments was love and then Love.

I love you, Super girl.

Love,

Mommy

Loving and Letting Go (50 weeks)

Sophia,

Well, we have made it to 50 letters.  50 letters full of mommy’s heart and love all for you.  I hope you know how much I have enjoyed writing to you each week.  I know that you can’t read these, but I also know that one day I will be able to tell you all about them. I’ll get to tell you how these letters helped me process my grief and how they helped me fully see the importance of your life and death.  Some weeks these letters have been my lifeline to sanity, and some weeks they have just been a fun way to stay connected to you.  But they all have been a joy to write.

Yesterday Daddy and I were talking about how our lives have been so different than we expected them to be.  We talked about all that’s happened to us in the last few years, and daddy said “I feel like our life has just been full of loving things and then having to let them go.”  When he said this it really caused me to stop and reflect.

Did you know that before we moved to Taiwan we had a dog named Lily?  She was a stray dog that had been found on the street and put in a shelter.  When we saw her at the shelter we immediately fell in love with her, and took her home that day.  We helped Lily get back to a normal weight, helped her trust people, and helped her know love.  Then, when we decided to move to Taiwan we had to make the hard decision to give her up.  We knew she wouldn’t be happy in the Taiwan heat, cooped up in an apartment (she loved to run!), so we had to look for a new family for her.  Thankfully God was so good and provided the best new owner for her.  But it was still heartbreaking to have to say goodbye to her.  We loved Lily like she was our actual human daughter, so giving her away caused our hearts to hurt so bad.  The night we brought her to her new owner your daddy and I just sat in bed and cried for hours.  Lily was our first experience with loving and letting go.

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(You were in my tummy in this picture!)

Then, precious girl, we found out we were pregnant with you.  As you know, we were beyond thrilled, and couldn’t wait to meet you.  When we heard that you were going to be very sick, we had to begin preparing ourselves for your possible death, but we truly believed that God was going to heal you.  Then you were born, and you were not healed, but you were alive!  We got 47 days to fall in love you.  For those 47 days (and the nine months prior for me) we got to know each part of you.  We bonded with you, and knew the feeling and smell of your skin.  We got to grow our love for you more than we ever thought we could, and it was amazing.  But then, on July 22nd, we lost you.  We had been given a taste of the sweetest love of our lives, and then it was taken away from us.  Loved and then lost.

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(Your grandma and grandpa loved you so much, too)

Four months after you died your foster brother Champ found his way into our lives.  We took home this tiny little shell of a baby, and over the past 8 months we have watched him blossom.  We have sacrificed more time and more energy then we ever thought we would have to.  We have spent more sleepless nights and more time in the hospital than we ever thought was possible.  But through all the hardships with Champ, we have fallen in love with him. We have grown the kind of love that only comes from daily sacrifice and daily care.  He has become a part of who daddy and I are at this moment, and we truly want him to have the best life possible.  But, Sophia, Champ is not our son.  He is not ours to keep.  And one day we are going to have to put him in the arms of his forever family and we are going to have to say goodbye to him.  We are going to have to let him go just like we had to do with Lily and with you.  He will be just another on the list of those we have loved and had to let go.

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I think it’s easy to think about Lily, you, and Champ, and to get really angry.  It’s easy to feel that we have been cheated in some way, or that we have been on a never-stopping conveyor belt of pain.  It’s so easy to focus on the letting go and the loss.  It’s so easy to forget the love.

Because, Sophia, what a privilege it has been to take care of our three little babies (Lily, you, and Champ).  What a joy it has been to watch three distinct lives (one animal and two human) grow and thrive right in front of our eyes.  We have been able to see the Hand of God at work so many times in the past few years, and that is something that not everyone can say.

I hate that I had to let you go.  But I love that I got to love you.

My prayer is that one day God will give us another little one that we will not have to let go.  My heart pleads for the chance to just love, without the fear of letting go on the horizon. 

Love,

Mommy

49 Weeks

Dear Sophia,

This week I just want to take a little walk down memory lane, and think about your life last year.  This time, last year, you were just turning 4 weeks old—just 2 days shy of one month old.  Your Auntie Josephine flew all the way from Seattle to visit you, and was here to see you in your new (bigger and private) room.  I guess I just want to look back and remember you this week, because I know that after your fourth week you started to get really sick.  I know what is coming in 19 days.  I know how the story ends.  But for now I just want to remember you before the edema and all the heart breaking news.

 

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Each day of your life was  precious.  I loved you for each and everyone.  But it was these days, before the worst came, that it is easiest to remember you.  I can’t believe that I only have 3 more letters to write to you, and then it will be a year that I’ve been without you—my dearest girl.

You were so beautiful.  You were such a joy to mother.  You changed my life forever.

I love you.

Love,

Mommy

Choosing Joy (48 Weeks)

 

My dearest Sophia,

A week after you died I was full of so much emotion—sadness, disbelief, numbness, confusion—that I had to sit down and write out what I was feeling.  That became your first letter.  At that time I had no plan to weekly write you a letter, but another week passed and I had more to say, so it just kind of started.  After the fourth or fifth week I decided that I would commit to writing you a letter a week for first year after your death.  Each week God placed different things on my heart to share, and here I am writing my 48th letter to you.  Only 4 more letters left.

4 more letters until it will be a year’s worth of letters, 52 of them, and 4 more letters until it will be a year without you. 

Throughout this past year God has been there for me, He has been completely faithful.  However, I have not been faithful to Him for much of the time.  I have not trusted Him, relied on Him, and truly believed in His promises to me.  However, in the past month of so He has been transforming my heart and mind in some serious ways.  I feel like I can really feel Him and see Him clearly, and because of this I have been convicted of some major sins in my heart. 

Some of the biggest things I have struggled with this past year are lack of contentment, envy, and joylessness.  And most of those sins come straight from one act of the mind and heart: comparison.

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This quote by Theodor Roosevelt is so simple, yet so true.  I have robbed myself of so much joy this past year because of the major amount of comparison I have been doing.

After you lose a child, and then seem unable to have another one, it is such an easy thing to do.

I look at other couples and wonder why fertility is such an easy thing for them.  They are able to plan pregnancies, like planning for a vacation.  I look at couples who have healthy children, yet seem to be unappreciative, and I think “I could love them better.”  I have even found myself envying families that have lost a child, but have other children as well.  I think “at least you have other kids to fill your arms.”

It is so wrong.  It is so hurtful.  It is all a thief of joy.

There are many Bible verses on the topic of joy, and it’s very clear that God is the source of all joy.

You have given me greater joy than those who have abundant harvests of grain and new wine. Psalms 4:7

I will be filled with joy because of you.  I will sing praises to your name, O Most High.                  Psalms 9:2

You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy.   Psalms 30:11

I have told you these things so that you will be filled with my joy. Yes, your joy will overflow!         John 15:11

 

But the verses that have been getting my attention lately—the one’s that God has been laying on my heart—are the ones that command us to be joyful in all situations.

Be joyful in all things.

Even in baby loss.  Even in infertility.  Even in heartache.  Even in fear.  Be joyful.

Philippians 4:4 tells us to “Rejoice in the Lord always. I will say it again: Rejoice!”

It says to rejoice in the Lord always.  It doesn’t say “rejoice in the Lord when He gives you what you want.”  And it doesn’t say “rejoice in the Lord when life is going the way you think it should.”  But to rejoice always. 

These words are coming from Paul.  A man who did not, by anyone’s standards, have an easy life.  And yet he tells us to rejoice.

I think I spent so much of this last year focusing on what I had lost that I missed so much of what I had gained.   Yes, I lost my daughter.  Yes, I lost the hopes and dreams that come with a precious little baby.  Yes, I lost a lot.

But I gained so much too.  I gained a deeper understanding of God’s Sovereignty.  I more deeply realized the amazingness of the Cross, because now I understand what’s it’s like to watch your child die.  I gained a precious foster son who has taught me patience and selflessness and hope.  I have gained so much.

Unfortunately I’m just realizing all this now, because I’m just now focusing on being joyful.

Mind you, joyful is not the same as happy.  God doesn’t expect us to be  happy all the time.  But He does ask that we chose joy in all situations.

So, Sophia, that’s what I’m choosing for this next year.  I choose joy.  I choose to find that joy in the fact that God loves me, and has my best planned for me.  I choose joy because no matter the trials and tribulations that this world throws at me, Christ has suffered more, and because of that suffering, He has allowed me to have the hope of Heaven.

No matter what life throws at me, and it seems to have been hurtling things lately, I will try my hardest to live in joy.

Love you, baby girl.

Love,

Mommy

Becoming Real (47 Weeks)

Dear Sophia,

A few months ago I wrote you a letter telling you about the ways I have changed since your life and subsequent death.  Shortly after writing you that letter, your grandma wrote me an email.  She shared with me a portion of dialogue from the book The Velveteen Rabbit that had once been shared with her by a friend who had lost her husband. 

It touched me so deeply at the time, and I told your grandma how much it had meant to me.  Then, this past Sunday she handed me a belated birthday gift.  I had no idea what it was, and wasn’t able to open it till later when I got home.  I carefully peeled away at the pink and red paper and reveled a soft beige-colored book with the illustration of a small child sleeping while clutching a raggedy stuffed animal—the Velveteen Rabbit. 

I quickly opened the book and proceeded to read the whole story, from cover to cover, and realized that I had not read this story in it’s entirety for a very long time.  I came to the passage that your grandma had previously shared with me, and my eyes welled up with tears. 

"Real isn’t how you are made," said the Skin Horse. "It’s a thing that happens to you.

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don’t mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn’t happen all at once," said the Skin Horse. "You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand."

 

"Real isn’t how you are made," said the Skin Horse. "It’s a thing that happens to you.

Before we found out about your diagnosis, we lived a much more simple life.  It was simpler in the literal ways (we didn’t have to spend days in the PICU or make major medical decisions) but also simpler in an emotional way.  We had never had to go through something like this before.  Then 1 1/2 years ago, we heard “there is a problem…” and all of a sudden this Realness started to transform us. 

"It doesn’t happen all at once," said the Skin Horse. "You become. It takes a long time.

I have gone through that life-changing process that only comes from great love and great loss, and have come out something different on the other side. 

It has taken a long time.  I was stuck in a dark space for what seemed like such a long time, and I wasn’t even aware of all the changes that were taking place in me.  Because of the darkness I felt inside of me, I wasn’t able to see the Light that was transforming me.

But I feel like I am now Real.

I feel like now, because of you, I truly “get” so many more things than I did before.  I experience life deeper and wider, and feel Realer than I ever did before. 

Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.

I was a mess this past year.  I fell apart in pieces, and had to be put back together again.  Some of the pieces came back together the same way they always had, but some of them just didn’t fit like they used to.  And because of this I was forced to sort of mod-podge myself back together, trying to make the new me, the Real me, as close to the Old me as possible.  But, I look different now.  I am not as shiny and new as before, I have so many more scars and tears.  However, I like to think (now) that this new me, this Real me, can’t be ugly.  It simply is just different.  Real.

I like to think of you as the precious boy in this book who loved the Velveteen Rabbit so much that one day he was able to become Real.  He was only able to be Real because of the love that had occurred—love that was not always the happy and good kind, but love that stood through the test of trials. 

Sophia, it was because of the love that you and I had, and the love of God, that I was able to survive this past year and not simply cease to exist.  I was able to survive, and to become Real.

I feel like I will never run out of reasons to keep thanking you for all you have given, and will continue to give to me.

I love you, my beautiful daughter.

Love,

Mommy

Waiting for the Sun (46 Weeks)

 

Precious Sophia,

For so long I’ve felt as if I’ve been in a storm.  When you died it was a hurricane—merciless, intense, and completely devastating.

Then as months passed the hurricane lessened in it’s intensity and it became a heavy thunderstorm.  The rain was constant and every so often the lightning would strike or thunder would roll and I’d be hit with another bad day. 

In the last few months I’d say that the storm has passed, but the rain hasn’t stopped pouring.  The darkness of the rain clouds hasn’t lifted completely, and I’m still left here soaking wet and shaking.

The rain remains in the fact that I still miss you.  It remains in the fact that I still have no child to call my own.  It remains in the fact that Champ has gone through trial after trial after trial with little to no rest in between.

I read once “if it never rained, then how could we ever grow?”  Well, I feel like I’ve been flooded for over a year.

Today it hit me just how tired I am of all this rain.  I’m ready for the sun to shine.

In this storm Christ has been my umbrella.  He has protected me from the worst of the downpour, but that doesn’t mean that there’s still not a deluge around me.

It’s so hard to not get mad at God in times like these.  I know that He is in control of everything, so why can’t He just take away the rain?  Why can’t He allow the sun to shine, even if it’s just for a short season?  How does it make sense for us to go through all this pain?  Each day that I go another night without sleep, or see Champ suffer through another medical problem I think, “Where is the sun? Why is the Lord hiding it from me?” 

Sophia, I know the answer to all these questions.  I know it’s to wait on Him and trust Him.  But sometimes when it seems like your prayers are going unheard and you’ve been forgotten in the midst of the squall it’s hard to do those two things.  Wait and trust.

So, here I stand—under my little rain cloud, hands clutching tight to my Savior umbrella, praying for the rain to stop. 

Waiting for the sun.

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Love,

Mommy

Happy Birthday (45 Weeks)

 

My baby Sophia,

Today is your first birthday, and you are celebrating it in Heaven. 

This week I was thinking a lot about how I wanted to treat this day.  Would I want it to be feel joyous or somber?  Would I want to pour into your photographs, or avoid them altogether? 

Today your daddy and I decided to spend the day remembering you, and honoring your life in ways that were simple yet meaningful to us.

I knew a few weeks ago that I wanted to bring some birthday treats to the staff at the PICU…or should I call them your aunties and uncles?  They spent more time with you than even daddy and I did, so it felt right that they should be a part of your birthday.  It turned out that Champ had a doctor’s appointment today, so I got to bring cookies and a note to the hospital.  The note said:

On this day, on year ago, we welcomed our beautiful daughter, Sophia, into this world. On that day we also welcomed so many of you into our lives as well. On her birthday we want to remember and celebrate her life, as well as thank those of you who cared for her. We are so grateful for you caring for our daughter when we couldn’t, and being her “family” for her 47 days of life.

I wasn’t able to actually go into the PICU to bring them the cookies, but I left them with your doctor (and Champ’s doctor now).  It seemed so fitting that exactly a year ago we met Dr. Chen and today I was spending yet another doctor’s visit with her.  You know, she is not only Champ’s doctor now, but she is my friend.  You, my precious Sophia girl, allowed us to meet and now she is one of my dearest friends in Taiwan.

This afternoon I dropped Champ off at your grandma and grandpa’s, and then I went to meet daddy.  We drove to my favorite bakery and bought you a small birthday cake.  It was actually a fruit tart, but it looked so dainty and sweet, that I knew it would be perfect for you.  We also bought three balloons, all light pink, and all representative of our love for you.

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Daddy and I came back home and released two of the three balloons from our roof top.  We watched them float high into the sky, and were able to watch one for several minutes.  I like to imagine they floated all the way up to Heaven and you got to have them at your birthday celebration there.  Then, after we released the balloons, we came back inside and had your birthday cake.  We lit a candle and sang “Happy Birthday”, but it wasn’t very pretty since daddy and I were both choking back sobs.  There is something so wrong about having to sing “Happy Birthday” to a person who isn’t there.  I think sitting there, blowing out your candle for you, was the saddest part of this day.

birthday treat

Next we had plans to eat at the last restaurant we had eaten at before you were born, it was actually on my due date.  But unfortunately we got a call from your grandma and grandpa telling us that Champ’s NG tube had come out.  We were going to have to take him to the hospital to have it put back in, which meant no special dinner in your honor.

It was hard not to get mad at God in that moment. 

We had wanted just one evening away from Champ, where we could focus just on you, and we weren’t even able to have that.

As we drove him to the hospital I realized that God was putting us back in the PICU…that sacred place of your life and death…back to the same place we first met you, exactly a year ago.  I thought that maybe God wanted us back there to run into some of your old nurses, or old doctors, but actually the nurse that helped Champ was probably one of the only nurses I had never seen before. 

As we drove back home, daddy and I talked a lot about how the night had turned out, and how hard it is sometimes to live with joy in all situations.  I think we were both a little sad and angry that we had not been able to spend your birthday exactly how we had wanted to.

But then a passage from Ecclesiastes that I had thought about all week came back into my mind:

For everything there is a season,
a time for every activity under heaven.
A time to be born and a time to die.
A time to plant and a time to harvest.
A time to kill and a time to heal.
A time to tear down and a time to build up.
A time to cry and a time to laugh.
A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
A time to search and a time to quit searching.
A time to keep and a time to throw away.
A time to tear and a time to mend.
A time to be quiet and a time to speak.
A time to love and a time to hate.
A time for war and a time for peace.

What do people really get for all their hard work? I have seen the burden God has placed on us all. Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.

When I read through those different seasons, I see how many of them we have been through in just this past year.  And I remember that sometimes these “seasons” last only for a few days or even hours. 

The last two verses really spoke to me.

I have seen the burden God has placed on us all. Yes, this year we have felt the weight of a thousand burdens, and we felt many of them tonight.

Yet God has made everything beautiful for its own time. So I wait to see the beauty in this current season, and I hold on to hope that it indeed will come.

People cannot see the whole scope of God’s work from beginning to end. We may never fully know why you had to die, or why even today we didn’t get to celebrate your life the way we wanted, but I have to believe the truth of this verse and trust that God is working all things together for our good.

So I guess, Sophia, there is not more fitting way to end your birthday letter than the way we began your birthday one year ago…trusting in the Lord.  In this last year He has shown Himself to be compassionate, forgiving, comforting, grace-giving, and good.  I’m so glad that you are celebrating this first birthday with the Heavenly Father who loves you so much.

Here are some pictures of you exactly one year ago, just a few hours old.

sophia first day

I loved you from your beginning, and I’ll love you till my end.

Happy birthday, baby.

Love,

Mommy

Broken (44 Weeks)

 

My darling Sophia,

Another week has passed, and somehow your birthday is next week.  How did a year pass by so quickly?  How could it be that we’ve already been apart for so long?

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Your birthday is next Friday, and I’m still not sure how we will celebrate it.  I’ve gone through different scenarios in my head, and I’m still waiting to see which one feels right.  But I’ll be honest, just the thought of having your first birthday pass without you here is more than I can bare right now.  I pray that God will give me more and more strength as this week passes.

Tonight your daddy asked me, “Are you happy with your life?”  I answered, “I’m happy with my life with you…” and then I paused and said “…but life sure has turned out to be a lot harder than I imagined it would.”

That short conversation really summed up what I’ve been thinking this week.  I know last week I told you it had been one of the hardest weeks I’d had in a long time, well this week was just as hard.  Champ was discharged from the PICU to a normal room, which meant daddy and I had to take turns being there 24 hours a day.  For five days we both got little to no sleep every other night (we took turns staying overnight at the hospital), and then during the day I had to care for Champ by myself, and daddy had to go to work.  Exhausting wouldn’t even begin to describe it.

Several times throughout the visit, during those late late night moments when he was up crying I thought to myself, “Why are you doing this to him God?  Why are you doing this to me? Hasn’t he already been through enough?  Haven’t I?”

The second to last night we were in the hospital Champ slept almost a full night’s sleep.  His pneumonia was clearing up, and we were told we’d be able to go home in two days.  I was so thankful that God was answering our prayers for healing, and that the horrible 2 1/2 week ordeal was finally over.  The next day came and all of a sudden he started his constant head turning, without stopping.  For hours straight he pulled his head, cried, didn’t sleep…it was terrible.  We thought that maybe it was a new seizure that was constant and relentless.  Night came and he still couldn’t sleep and we had to beg for something that would allow him to rest.  I just kept thinking “God, why would you allow this to happen to him now, after all he’s already been through?  Why would you take away his ability to rest when all he needs right now is that precious sleep?” 

I was so angry and frustrated at God.  I was heartbroken for Champ.  I was feeling sorry for myself. 

That last night in the hospital I was alone with Champ, and alone with my thoughts.  During the times when he did sleep I kept going back to the same idea in my head—I am broken.

Physically and emotionally broken.

Since the day we found out about your possible condition, back in November of 2012, life has been stressful and challenging.  I’ve dealt with a very scary pregnancy, a heart-wrenching 47 days of your life where we had to endure so much separation from you and ride the rollercoaster of PICU life, then your death and the crippling grief that followed.  Then four months after you died we started fostering Champ, and it’s been non-stop with his care and various medical conditions.

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Broken.

Broken to the point where sometimes I don’t even know myself anymore.  Broken in ways that I never knew a person could break.

And do you know what came to mind next?  They were words from that still, small voice that said “I am breaking you down so I can build you up to be more like Me.”

Then these verses came to mind:

2 Corinthians 12:8-10

8 Three different times I begged the Lord to take it away. 9 Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. 10 That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.

In each and every single one of the toughest moments of these 1 1/2 past years, I have been guilty of the “why me’s?”  I’ve made my prayer that God would take away all the hardships of my life and keep any new ones from coming my way.  I’ve spent many moments in the dangerous game of comparison where I look at other people’s lives and wonder why things get to be so easy for them—why my life has had to be so hard.

But God has been trying to show me that it hasn’t all been in vein.  He has been trying to show me that in my weakness His power and strength shine through.  He’s been trying to show me that His grace is all that I need.  He’s been trying to get me to understand that even if I don’t have all the desires of my heart granted, He is still good and my life is still full because He is in it.

He’s been trying to get me to see that all these hardships and sufferings are shaping me to have more of the qualities of Christ: humility, empathy, love, selflessness, patience, and dependency of the Father.

Most importantly He has been trying to point out to me that this life will be hard, but my reward truly is in Heaven where one day the desperate longings of my hearts will finally be fulfilled.  And, Sophia, having you in Heaven waiting for me makes me treasure the idea of being there more than I ever did before.

This week it took breaking me to understand how much I needed to be built up. 

It took my most vulnerable weaknesses to showcase His infinite strength. 

My prayer is that I continually press on with a thankful heart and a true dependency on the Creator and Perfector of my life. 

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I love you Sophia.

Love,

Mommy

Near You Again (43 Weeks)

 

Sophia,

This past week was probably one of the hardest weeks I’ve had since the weeks shortly after your death.

It was physically and emotionally exhausting, full of moments that I hadn’t been prepared for, but was forced into.

You see, Champ continued to be really sick this past week.  He was much sicker than he was last, and so most nights I got little to no sleep.  At the tail end of 3 nearly sleepless nights we threw him a 1st birthday party with many of our friends, even though he wasn’t feeling well.

The party in and of itself was challenging to prepare for logistically, but it was also extremely emotionally demanding on me.  It forced me to think of you, and the fact that I will never throw you a 1st birthday party.  It also made me realize that this is probably the one and only birthday party I’ll be able to throw for Champ because, God willing, he will be with a forever family next year.  It was a party to celebrate his life, yes, but it was also a party that reminded me so much of what I have lost and what I will lose.

During the party Champ was really sick (with pneumonia) and having terrible seizures.  Thank God that his nurse and doctor were there, because they were able to see that he was in need of an NG tube, and were able to put one in him that night.

After the tube was on his face I was taken aback for a second…he looked so much like you did.

48 hours after his party I was bringing him to the hospital after a completely sleepless night due to his seizures.  When I brought him to the hospital I expected that he would be admitted.  What I wasn’t expecting was for him to be admitted to the PICU.

The same exact PICU where you lived and died.

When the doctor uttered the words “PICU” it was almost as if time stood still.  There I was, practically in my pajamas, running on no sleep, and now I was going to have to go back to the one place that carries the weight of the world in emotions.  A place that I had hoped to go back to, one day, but not until I felt emotionally prepared.  On that day, I was not prepared, to say the least, but there I was.

Shorty after I was handing him off to a nurse, and watching the sliding door or the PICU close in front of me like I had so many times before.  I had to sit and wait on those same plastic chairs that had held me during the most important days of my life.  And all I could think was, “how am I back here again?”

Champ was admitted around 11:00 AM, and visiting hours are from 11:30-12:00, so I sat there and waited with your grandma (she graciously came with me knowing I was an emotional wreck).  As we waited a nurse came out to get basic information about Champ and I couldn’t control my tears.  In my lack-of-sleep state I was completely vulnerable to full-on emotional attacks, and I had no chance of fighting them off.  The nurse was one of the nurses who treated you, one we called “shy nurse.”  After a few minutes of her asking about Champ, I asked her “do you remember me?”  She said, “Yes, you’re Sophia’s mom.”

I can’t tell you how wonderful and devastating it was to hear her say that.  It was so good to be with one of the few people who ever knew you, and it broke my heart that the only reason we knew each other was because of your sickness and ultimate death.

11:30 came.  The sliding doors opened, and just like that I had to walk back into the only place that had held your life.

The second I walked into the sanitizing area that smell hit me first.  It is the smell that is you.  The smell that I associate with each and every moment we shared together, and it was so sweet to smell it again.  For a split second, as I washed my hands at that same sink with that same soap, I really believed that I could walk just a few feet more to what had been your room, and you’d be there in the bed sleeping.

But as I walked pass that room, there was someone else in the bed.  And it broke my heart.

Everything in the PICU felt as if no time had passed.  So many of the same smells, sounds, and people.  I walked past one room and heard “Wow, Sophia’s mommy!” as another one of your nurses smiled at me.  It was such a surreal moment.

Champ was in the PICU for 5 days. The first day or two it was so hard to go and see him in that place.  Your place.  But by the third day I began to see God’s kindness in this whole experience.  I realized how good it was to be back in that place, because it was your home.  I got to be back in the same walls that held the only cries you ever let out, and contained the only air you ever breathed.  I got to enjoy the company of the very few people who ever cared for you, and it all became a very sweet experience.  If Champ hadn’t gotten sick I might never had been able to go back to the PICU and to get something that I’ve been searching for for a long time…

Closure.

Being there gave me a sense of closure to a piece of my grief journey.  It gave me a chance to feel like I was near you again.  And there are very few chances that I get to feel that.

As I cried in that PICU it helped me release some things that I’ve been holding inside for a long time.  It helped me realize that life goes on, and we never know when beautiful, unexpected moments of grace will pop up in our life.

Sophia, this week it was so good to feel close to you.  It was so good to be with your people and to know that you are remembered.  I need you to know that you touched so many people’s lives, and that they still have not forgotten you.  None of us have.

I love you, my sweet baby girl.  Can’t wait to hold you again in Heaven.

Love,

Mommy

42 Weeks

My precious Sophia,

Here it is Thursday night and I’m just getting to your letter!  I’m sorry that mommy is writing to you so late this week, but things around here have been extremely hectic.  Your foster brother is sick again, and this time he’s really sick with a terrible cough.  Mommy has to hold him and help him almost 24 hours a day and I have almost no time to do anything else! On top of all that, he is supposed to have his first birthday party on Saturday, and not knowing whether or not he’ll be better by then, I’m also trying to prepare for that.  Phew!  Mommy is exhausted!

When Champ is sick like this I often think about what it would have been like to care for you at home.   You would have had a tracheostomy, and so I would have been caring for that on a daily basis.  You also would have had a feeding tube, and perhaps you would have been connected to a ventilator throughout the day.  There would have been medications to give, and who knows what else, but I know that it would have been a lot of work.  I wonder if it would have been overwhelming (probably) or if I would have just been so happy to have you home that it wouldn’t even bother me (I’d like to think that…) 

Living life with you would have been very, very hard, but I would still trade anything for just one chance to experience life with you outside of the hospital. 

I would do anything to be able to have you here and to be able to be planning your party right now.  You see, giving this party to Champ is a way for me to give a party to you (or at least in my mind I can).  Of course I couldn’t throw him a girl-themed party, but I chose a Superhero theme, since you were always known as our Supergirl.  And although we will be singing “happy birthday” to him this Saturday (if he feels better!) I will definitely be thinking of you.

In fact, your birthday is less than 3 weeks away.

It hardly seems possible that almost a year has gone by since that amazing day when you entered this world—just thinking about my labor and your delivery brings tears to my eyes. 

I’m still trying to decide what to do for your birthday this year, but I promise, it will be remembered and celebrated.  I promise that mommy and daddy will sing “happy birthday” to you, and your special day will not be forgotten.

I love you, baby girl.

Love,

Mommy