Tuesday, September 29, 2009

Back Home

Today is my first day of "daily life" since Samuel was born. It's just me and Caleb and Joel. We're back from the beach, Bryan is back at work, and my mom is back in Texas. And I am Mom once again -- responsible for my children, in charge, and running the household. It feels a bit overwhelming at moments, but some times it just feels like life again.

Caleb went off to preschool this morning, and for the first time ever, I had a morning with just me and Joel. We went for a walk, and the whole time I was pushing the stroller, I was fighting this inner voice of panic. I couldn't wrap my head around the fact that I was only responsible for one child -- and that the one child was Joel. Back in July when I would picture the future, it always held a degree of craziness. Trying to care for three little boys, juggling a baby's schedule with Caleb and Joel's, figuring out how to do preschool pick-ups and drop-offs with Samuel and Joel in tow, etc. It never held an image of me and Joel alone and on a walk. So this morning I kept thinking I was forgetting someone, had neglected to care for someone, and was seriously dropping the ball. It was the first time I had the "where's the baby?!?" panic. I keep feeling like our family is incomplete, like 4 people is too small, and we're missing someone. The truth is we ARE incomplete. Our family of 5 is separated, and we feel too small because we are.

Today, for the first time, I got the question I've been dreading since Samuel's health turned really south. The cleaning crew was here, thanks to our many friends at North Point Community Church, and one of the ladies asked me, "So how's the baby?" I had to answer the words I've been so afraid to utter: "He died." She clapped her hand to her mouth and looked truly horrified. I welled up big time and tried to think of where I could run away to, but there was no escape since Joel was sitting at the table eating lunch, and there were two other ladies upstairs cleaning the bedrooms. So, I had to control the wave of emotion swelling up in me and continue on in the chit-chat that followed. I did it, which makes me think I can do it again the next time I'm asked. I'm glad the inevitable first time is behind me.

Tonight will mark the point at which more time has passed since Samuel died than the time he spent alive. Somehow that feels significant to me and Bryan. It's a sad marker for me and makes Samuel and the time we had with him feel farther away. It's already ebbing away from me, and I hate that. I know no matter how much time has passed since he was here, the time we had with him was precious and eternal, but it's still a difficult thing to watch time lope by at its quick, unfeeling pace.

While we were at the beach (again, a wonderful time to be together as a family and a MUCH needed reprieve from daily life), we found out the results of Samuel's genetic tests. Everything came back "absolutely normal." This was a big relief to me as I was afraid (and still am, to be honest) about future children enduring the same things our sweet Samuel did. And I'm pretty close to terrified of enduring them again myself. But whenever I think about what's ahead and whether or not we'll have another unhealthy child, I am reminded that I never thought I could survive losing Samuel, and God surprised me. He was everything I needed to walk through the month of August, and He's been everything I need to walk through each day since. So whatever path is ahead, I can trust He will be enough. However, I still have my fearful moments, and these results helped to ease them.

Caleb and Joel continue to process the loss of their baby brother. This morning I was changing the crib sheet in Samuel's room because I needed the mattress pad under it. Joel was crestfallen to see me disturbing Samuel's crib: "That's Samuel's, Momma! Why you do that? That's Samuel's!" And last night when I tucked Caleb into bed, he burst into tears out of the blue. As I pulled him into my lap, he said, "I am sad about Samuel. I'm sad he died. I miss him." He sobbed in my arms for a long while. It's so heartbreaking to see my kids' hearts break. I am praying for God's great wisdom to help us shepherd Caleb and Joel's hearts, to enable them to feel free to mourn and be sad but never make them feel like they're "supposed" to be sad, to point them to Jesus and His goodness and trustworthiness, and to draw them into God's comfort and presence. It would take scores of wisdom I don't have to shepherd Caleb and Joel well through their grief even if I wasn't blinded by my own sorrow. It will take the Lord's supernatural presence to do so in the midst of our grief.

Once again I find myself at the feet of Jesus, depending on Him for the strength, joy, and courage to move forward and to face what this day holds. He continues to be my portion, my rock, and my good, good God. Is it weird that I am amazed -- truly -- at His goodness as I navigate the paths of grief? He is so very real, so very present, so very strong, and so very tender with me. Can I say yet again, IT IS A GOOD GOD WE SERVE!

Monday, September 28, 2009

Photos from our Beach Trip

We had a wonderful time at the beach. Thanks Moores! It was just beautiful there, and we had some good time as a family. We were able to talk about Samuel, grieve him, and still rejoice in the time the 4 of us had together. It was a much needed time away from daily life tasks and just being able to focus on our family. Thanks, God, for providing us this time.

Caleb is terrified of the alligator statue.

Joel, on the other hand, has no fear.

Silly lemon-loving brothers

I love that these two are friends. It's one of our nightly family prayers -- that "Caleb and Joel would be great friends always."

Thursday, September 24, 2009

What is Doing Well?

This morning as Bryan and I were lying in bed and trying to gear up to get Caleb and Joel (who were already wide awake and chatting loudly down the hall with each other), we were talking about the question we often get these days: "How are you doing?" Everyone always wants to hear "well" as the answer, but I was realizing that "well" probably means something very different to me and Bryan than it does to the one posing the question.

I started thinking about what "well" would mean to the person asking me or Bryan how I'm doing. Does it mean I'm not sad anymore? That I'm not hurting? That I've gone 24 hours without crying? That I'm moving on with my life and don't think about Samuel very much anymore? That I don't miss him? None of those things are true. None of those things may ever be true.

So how can I honestly answer "well" when asked?

Last week when my mom was still here, Bryan and I went out for dinner together and a movie. It was our first time to try a regular date night, and we were both a little apprehensive about it -- especially the movie part. While we were strolling and waiting for our movie time, I told Bryan, "I think I am doing so much better than I thought I'd be doing after losing Samuel." Bryan very quickly agreed with me, and I asked him to explain. He said that while we were at Egleston and he would project forward to Samuel dying, he wondered if "I would ever get my Kathryn back."

Then he asked me to explain what I meant. I told him that despite being very, very sad and tearful and fairly unable to take care of ordinary life tasks, I have a constant and steady peace underneath it all. I know in no uncertain terms that God is good. He is trustworthy. He is worthy of my praise, and I find I can praise Him even in my darkest moments. Though the world around me seems dark, and I feel burdened and literally weighed down -- sometimes to the point of suffocation -- the ground beneath me is firm and unchanging. I know the bottom can't fall out from under me because my foundation is Christ, and He is always the same. There is a safety underneath my grief, a sense of being held and kept on firm footing. As long as I make my home on the rock of God, I am safe and peaceful. I never would have thought there could be such peace in grieving, such confidence in my God, such assurance of His sovereignty. But He has shown Himself good and loving even here, in the death of my baby boy.

So, I think I am doing well. Does that mean I am not grieving anymore? Absolutely not. Does it mean I am the same person I was before Samuel died? Not at all. Does it mean I have stopped crying at unexpected moments? Nope. Does it mean I don't feel sorrow pushing down on me and taking my breath away from me? Sadly, no. But it does mean I am trusting God. I am leaning on Him. I am finding comfort in His character and presence. I am depending on Him to carry me through this season of heartache. He is my shelter, the rock that is higher than I, the cleft in which I hide. And because He is beneath me, I am doing well.

Monday, September 21, 2009

A Quick Thanks

I have way too many things I want to write about and need to process, so rather than tackle what would surely be a several hour writing session and the longest blog post ever, I am going to say thanks to the many people who continue to bless us.

Today I ran several errands in an effort to get ready for a trip to the beach, and do you know how much money it cost me? Nothing, thanks to you guys. I went to Barnes and Noble to get three books for our time away -- thanks, Hambricks, for the gift card! Then I went to Toys R Us to get some things to occupy the boys while on the road -- thanks, Tomberlins and Tappans, for the gift cards! And on my way home, I stopped at Chick-Fil-A for a wrap for lunch -- thanks to the many people who have given us CFA gift cards. I think we can eat there every week for many months and still have money to spare. :) And do you know how much money the beach trip is going to cost? Nothing, again thanks to you guys. One of Bryan's co-workers offered us their place for free (as did two other families), and quite a few of you have given us gas cards that will surely cover the trip there and back. So our family is going to get some much needed time together and at the beach for virtually nothing. THANK YOU to our AMAZING friends who continue to serve and love us in this time. I am humbled day after day at your great compassion and kindness. We are blessed by you. We thank God for you, and we love you very much.

Saturday, September 19, 2009

The Drain of Ordinary Tasks

It's amazing how much effort the ordinary things of life take these days. Bryan has been back at work full time for a week now, and he's been completely exhausted each night when he's arrived at home. He has his own stories of how hard normal stuff is when you're in the midst of grief, so I will let him share his if he so wishes. For me, it takes most of my energy just to live a day of life, so I can't even imagine how he's managing to be a functioning part of North Point's staff.

Each day when I wake up, I immediately start praying -- for the grace to make it through that day, for patience with Caleb and Joel, for peace in my heart, for God's comfort to be real and present, for me to depend on God in each moment, for courage to grieve when the waves come, for the freedom to rejoice when joy sneaks up on me, and for the strength to do whatever needs to be done in that day. Though for awhile now it's been my practice to pray as soon as I wake up, these days I do it out of sheer necessity. I am more aware of my need for God than I have ever been -- though in truth I need Him no more now than I always have. It's just that I can see it clearly now -- how incapable I am of honoring God on my own in each day. I can't possibly honor Him without His stores of grace, love, strength, patience, and kindness dwelling richly in me. I need God to honor God, and in grief I need Him to accomplish even the smallest of tasks.

The last few days have held more "to-dos" for me than the previous couple of weeks. I have been working to donate my pumped breast milk to a milk bank for sick babies since the day Samuel died, but my mom has really headed up the charge on it. There have only been a few parts of the process that I have had to do on my own. One of them was to get a blood test. So, on Thursday I headed to a lab for a blood draw. It didn't seem like that big of deal to me, but it took more energy than I expected. After getting lost for about 45 minutes (which surprisingly didn't bother me in the least -- I guess it's the little stuff staying little), I then had to endure my first bout of small talk. I had no idea how draining that would be. It was painful to listen to the woman who drew my blood talk about how she wished she could donate her milk -- how I wish I couldn't donate mine because Samuel would be drinking it! -- and about her baby and what he's up to. She didn't know my circumstances, so she wasn't being insensitive, but I felt frozen -- unable to respond in any normal kind of way. I think I just sat in silence and tried to offer a grin, which I imagine looked more like a grimace.

Then yesterday I tackled getting my haircut. You wouldn't think this would be hard, but I have been putting it off since Samuel died. What happens when you get a haircut? Either small talk (exhausting!) or personal divulgences. I haven't been up for either. Finally I decided to bite the bullet, so I could do it while Mom is still here and getting away is easy. I braced myself for what I expected to be a rough hour. And it was. Moments into sitting on the chair, I got the question I had been praying she wouldn't ask: "So, how many kids do you have?" Thankfully I had thought of my answer ahead of time. Since I didn't want to tell my sob story and end up bawling in the salon, I replied, "I have a 4 year old and 2 year old at home." Somehow answering "two" would have felt like a betrayal to Samuel, and answering "three" would have lead to more questions: "how old are they?", "you have a baby?", "who's watching him now?", etc.

Unfortunately, I wasn't able to skirt more questions about kids. "Do you want more?" came next. I don't know exactly why that question was painful because I definitely do want more -- and did even when Samuel was seconds old and his future looked promising. But something about being asked that just two and half weeks after my baby has died felt unsacred...like any child I would want would be in an effort to replace Samuel, who can't possibly be replaced. What I want is Samuel -- not some phantom other baby. I simply answered, "yes." Next came, "So how many do you want?" All I could think was, "when is this going to end?"

Even once we got off the topic of children, I found small talk beyond my grasp. She was asking me about books -- something I love -- and I could barely find it in me to answer. At some point, I realized I was clasping my hands in my lap so tightly that they were aching. I am sure my knuckles were bone-white under the drape. I was working so hard to hold in all the pain, all the memories, all the love I have for my son -- so that it wouldn't come spilling out in a flood of tears-- that my body was physically spent from the effort. When it finally came time for the blow dryer, I spent my energy praying fervently for one of my best friends who was in labor with her first child. (Welcome to life, little Simon Peter Lee!) I think I slumped out of there once my haircut was done.

Truly, it takes tremendous amounts of energy to do the simplest of tasks (which is one of the reasons I am so thankful for the continued meals friends are bringing us!). I have to gear up to pull together the boys' lunches -- we're talking pb&j's here!, to clean up a meal, to do laundry, to get in the car and drive somewhere, and to make any sort of phone call. Phone calls seem to be the very worst. I feel the most prone to unexpected tears when I'm on the phone (maybe because I loathe talking on the phone even under normal circumstances). In fact, I still haven't spoken to one of my best friends since Samuel was born because it seems so daunting and so likely to dissolve into sobbing (we email, never fear!).

Though each day I find I am able to do more things and care for my boys more, it still takes reserves of strength I didn't have to tap into before Samuel died. I am nervous for life once Mom leaves. It will soon be time for me to be the sole adult in the house Monday through Friday from 8am-5:30pm, but I am apprehensive about it. The Lord will have to fill in even more gaps than He already does. And I will have to depend on Him in new ways yet again. In many ways this is good for me. I have perhaps been too proud of my ability to parent my sons and enjoy them fully. I won't be able to "do life" on my own; I will need God every moment. And, oh so thankfully, He will be here every moment I think to ask for Him and every moment I don't. He has shown up again and again in these days of grieving, and He will continue to show up. How do people do this without Jesus? I have no idea.

Another of my best friends, Kiley, sent me a couple of verses from Psalm 84, and I have found great comfort and peace in them. Verses 5-6 say:

"Happy are those who are strong in the Lord,...
When they walk through the Valley of Weeping,
it will become a place of refreshing springs,
where pools of blessing collect after the rains!"

I take comfort in knowing that someday I will find that this Valley of Weeping is full of refreshing springs and pools of blessing. Though I can't see them in the depth of this grief, they are coming. I must be strong in the Lord, not in my own might, and the refreshment and blessing will abound. Many of you already are the refreshment and blessing our spirits need. Thank you! And hooray for a God who has walked His own Valley of Weeping and is showing us day by day the refreshing springs of His son Jesus and the pools of blessing we find in life with Christ!

Wednesday, September 16, 2009

Our Little Joy Bringers

Caleb getting a little cuddle time with his Momma. This is from Sept. 1, 2009.

Matthew, my brother, took this picture about 8 hours after Samuel died. Even then, Caleb and Joel had the magic of bringing joy to our hearts and faces.

Matthew took this picture as well. You can see what little healers these guys are.
Who can resist a smile when you're looking at these precious faces?

Monday, September 14, 2009

Resting in God's Plan

I've put off posting on here for several days now because my thoughts have been all jumbled up, and I haven't been able to figure out a clear idea that I want to communicate. But since the clarity is still not coming, and I have a slew of things I want to process, I will just post a random collection of thoughts and occurrences.

Over the weekend I had an intense few days of emotions and grief. On Friday Bryan and I attended a funeral for the father and brother of a good friend of ours. It was a beautiful service and an honoring tribute to the two men. It reminded me how unnatural death is and how broken our world is. Evan, our friend and son-in-law/brother-in-law to the deceased, spoke about the parallel tracks of grief and blessing. He talked about how grief and blessing go hand in hand, and I could resonate with that on so many levels. We have experienced immeasurable grief in the last 6 weeks, but we have also been the recipients of more abundant blessings and outpourings of love than I have ever witnessed (and that's saying something!).

After the service, Bryan and I visited Samuel's grave for the first time since his burial. It was harder than I had expected it to be. We couldn't find his plot right away because we haven't ordered a stone yet, and the spot was unmarked. Somehow that was a little hard for me -- for Samuel to be in an unmarked grave. We finally identified his place by the newly churned dirt in a small area -- too small to hold the casket of an adult -- and by the stick on the ground that Caleb had been playing with at the burial. (We later went to the office and asked them to make a temporary marker until we can get a gravestone.)

Bryan and I stood there for a long time feeling pretty lost. What are you supposed to do at the grave of your child when you don't believe your child is truly there? I kept looking at the dirt thinking, "I know Samuel's body is under there in that little white box we saw, but I don't think that's really him. I know he's in Heaven and happy and whole. So what am I doing here? I don't want to talk to the ground like it's really my son. God, I guess I'll talk to You. I miss Samuel. Terribly. Please hold him close for me. Tell him how much I love him and miss him and wish I could hold him. And please hold me close and comfort me. I am so very sad..." I couldn't believe we were really standing on the grave of our baby. How could it be true? I never, ever imagined, in all the uncertainty we faced and all the fear of losing Samuel, that we'd be standing at a mound of dirt to "visit" our son. It's all just too horrible.

That night I ended up with severe pain in my back and neck and had the most dreadful night's sleep. I am used to back pain, but this was all together different. I would have called it an 8 or 9 on a scale of 1-10, 10 being the worst pain I've ever felt -- and I've had scoliosis surgery and delivered 3 children unmedicated. I am no stranger to pain. I felt so overwhelmed -- having lost Samuel, being in pain, and not sleeping. I was honestly pretty panicky in the night. I couldn't stop thinking about Samuel when he was on the paralytic and wondering if he was in horrible pain under the medicine and couldn't let us know he was hurting. I kept wondering if he was afraid and we didn't know it, and I couldn't get the images of his final days out of my mind. In an effort to calm myself down, I sang in my head all the songs we would sing to Samuel. Eventually I woke Bryan up and asked him to pray for me. In trying to tell him my despair, I broke down into gut wrenching sobs. In the words of Bryan, I "wept bitterly." It was a dark night for me, and a dark day followed it.

Caleb and Joel seem pretty in tune to what's going on. On Saturday at dinner I was sitting quietly at the table and not saying much. I was burdened with sorrow but wasn't crying. Joel looked at me and said, "Why you sad, Momma?" I asked with surprise, "Do you think I'm sad?" And he replied, "Yes. Why you sad, Momma?" "I miss Samuel, Joel." This led to the start of tears and ultimately a retreat to my room to cry alone.

Yeterday Joel started carrying around Cookie Monster, his beloved animal, and calling him Samuel. He would say, "This is Samuel. I wanna cuddle Samuel. He's my Samuel." And he'd hold Cookie Monster close and love on him. Caleb, likewise, has had Samuel on his mind. When my mom announced that she was going to the grave, Caleb asked her to please blow Samuel kisses and cuddles and to blow some to Pooh too. (Caleb picked out one of his animals to go in the casket with Samuel, and Pooh was his choice.) It hurts my heart to see my kids hurting too. I so wish they had their baby brother here to love and play with and to be jealous of. I especially hurt for Joel who was SO PROUD to be Samuel's big brother and so happy to see and kiss him, and he doesn't get the experience of being a big brother. I want that for him.

A week or so ago, Bryan asked Caleb, "What do you think of Heaven? Do you think it's a cool place?" Caleb's answer made my heart happy: "It's like Disney World!!" I love that in Caleb's mind, Samuel is in a fun place, the happiest place Caleb can think of. It brings me joy to think that Samuel is enjoying himself and is full of smiles and laughter. I realized just this morning that a good deal of my sorrow is about what Samuel endured in his month of life, but I recognize how backwards that is because Samuel is in Jesus' presence, which washes away all the hurt, pain, and brokeness of his earthly life. Jesus makes it all beautiful and right and good, and it's silly for me to be upset about those days and circumstances when Samuel can look back on them with clear eyes and see, instead of pain, God's grace, presence, and love covering each moment. No matter how awful they were when Samuel lived them, they are redeemed and beautiful now, blanketed in God's redemption.

And someday I, too, will look back on the 10 months I spent with Samuel -- in my womb and out of it -- and on the months of heartbreak following his death, and I will see it clearly. I will see God carrying me when I felt abandoned; I will see Him wiping away my tears when I felt alone; I will see Him standing over me and crying with me when I was weeping at Samuel's bedside, and I will see all the good and wonderful things that He brought out of those days and all this pain. I will see what He made new through Samuel and through me, and I will rejoice in His perfect plan and how He let me be a part of His story. Someday I will see clearly, and until then, I will trust Him, and I will find joy in knowing that His plan is good even though I don't understand it... yet.

"Now we see things imperfectly as in a poor mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God knows me now" (I Corinthians 13:12).

Sunday, September 13, 2009

The Dangerous Escape

Some of you know that both of my parents have passed away. My mom died just before I turned 15 and entered high school. My dad died when I was 21 and in my junior year of college. I did not grieve their deaths well. I have since been able to identify the lie (or at least one of the lies) that kept me from responding to these losses in a healthy way. I felt that I needed to be strong for others – for my dad, my sister, my brother, etc. I don’t think that anyone ever told me that I needed to be strong for others; somehow I just adopted that as my philosophy. It worked well for a while, but it caught up with me.

I can’t say that I never fall into those patterns anymore, but for several years now I have been trying to be more attentive to my emotions – identifying them, understanding them, etc. Just days before Samuel was born I had been encouraged by someone close to me to “pay attention to my soul” as I continued to grow in this area. The circumstances around Samuel’s life and death have given me far more opportunity to do so than I ever would have wanted. At the same time, I am grateful for the timeliness of that counsel because from the first hours and days of Samuel’s life it became a mantra that I frequently turned to and a prayer that I often uttered. Many a time that thought or prayer alone – pay attention to your soul – helped me to identify what was going on in my heart. Sometimes it was anxiety or fear or anger. Other times it was peace or joy. Either way, what I identified gave me the opportunity to respond, usually in prayer. For the former, they were “prayers and petitions with thanksgiving,” casting my anxieties on God, and pleas to grant me the grace to trust Him. For the latter, they were prayers of gratitude for the inexplicable and undeserved grace of God. Thank you, John, for that counsel!

I want to continue to “pay attention to my soul” and to grieve Samuel’s death well, but I am finding it much harder in these days since his passing. Our 4 weeks in the CICU were desperate times. We read a NY Times article that described how parents who have spent extended periods of time in an ICU with their child are often diagnosed with or show symptoms of Post-Traumatic Stress Disorder. I can totally understand why; we lived those days in survival mode. But traumatic circumstances seem to lend themselves to vigilance. It was natural to pay attention in those days since our surroundings were new, everything was uncertain, and the stakes were so high.

Now that we are home and the current of life is pulling us into routine, paying attention to my soul requires much more effort. First of all, we are no longer living with the sense of urgency that we had in the CICU. The drama is over; Samuel has died. We are not waiting for another test result or “Cath conference.” We are slowly and uncomfortably slipping back into routine. Secondly, there are the distractions that I’ve written about before. These are the things, by my definition, that are necessary – paying bills, mowing the lawn, preparing or cleaning up from meals, picking up toys, going to work, etc. Sometimes these things are a welcome diversion, other times I resent them, and at others times still I'm energized and healed by them. While the label “distraction” suggests that I slip into these tasks effortlessly, the reality is that they are all significantly harder than normal (but that may be a post for another day). That said, I think of them as “distractions” because they take my mind from grieving Samuel’s death, from paying attention to my soul.

I have recently observed a third reason that paying attention to my soul is harder these days, and it is particularly troubling to me. I have noticed that in my quiet and in-between moments, I quickly fill my world with noise. I don’t necessarily mean noise in the literal sense but rather that I am prone to flee from stillness to busyness, from thoughtfulness to mindlessness. I am prone to escape. This propensity is strong enough that it has me wondering how long I’ve been doing it, how deeply engrained this habit is. It looks different at different times. Sometimes it is reading up on sports on the internet or watching it on TV. Sometimes it is feeding my appetite for order and organization by tidying up. Sometimes it is checking email or Facebook or this blog. Clearly, none of these things are bad things, but this is troubling because these still moments are my greatest opportunity to pay attention to my soul. In fact, I think the reason that I turn up the noise is that in the silence I begin to hear my own hurt, in the stillness I feel the heaviness of my own heart, and in the thoughtful moments, I am mindful of the gap that has forever been opened in our family by Samuel’s absence.

I don’t fully understand how to grieve well. I can definitely tell you a couple of ways not to do it, but little by little I’m learning. For starters, permit me to state the obvious. If I want to grieve well, then I have to actually grieve. That makes running from these quiet moments particularly dangerous. How can I grieve if I’m escaping the hurt? So this is what grieving well and paying attention to my soul looks like for me right now. Find the quiet moments and remain in them, still and thoughtful. Allow myself to hurt, feel my heavy heart, acknowledge my loss, and remember my son.

I have a lot more thoughts and a whole lot more to learn. I am sure that I will uncover another dozen or so unhealthy patterns along the way, but I am committed to doing this well. That means doing it honestly. That means not doing it alone. I need my family and trusted friends. Most of all, I need my God.

Thursday, September 10, 2009

Thank you, Dr. Kim

Since Samuel passed away and Bryan and I have come home again, we have commented several times on the utter disconnect our life at the hospital has from our life at home. Bryan mentioned in an earlier post about the fear of forgetting parts of Samuel because his whole life existed away from our house and in a hospital. We don't have memories of Samuel here -- in his crib, in the glider, in the playroom, on the changing table. All of our time with Samuel was spent at Northside or Egleston, sitting in an ICU, surrounded by medical equipment, and more or less physically isolated from the people in our lives. While at Egleston, new people entered our lives in very significant ways. I can't think of another time in life where this has happened to me -- where in a short period of time, I gained an entire new world of existence -- a new dwelling place as well as a new community.

Bryan and I aren't really people who seek out new friendships. We enjoy the close friends we have and generally feel content with those relationships. We're both introverts and find that staying at home is usually preferable to going out. As a result, our circle of friendships and relationships stays pretty consistent. It rarely expands to include new faces. The month of August was therefore quite an anomaly in our lives. Not only did we meet some wonderful parents, we forged some bonds with nurses and doctors that I wouldn't have predicted. In truth, these bonds are more significant to me and Bryan than they are to the staff at Egleston. The doctors, nurses, and RT's see new patients every day, and all those patients (and their parents) eventually leave the hospital. So the changing faces in their world are a matter of normalcy.

But for me and Bryan, those doctors, nurses, and RT's are forever a part of our story. They are the people who saw Samuel every day, who cared for him, who knew him in some way. Only a handful of people in our life outside Egleston ever got to meet Samuel, much less spend any significant time with him. We are grateful for each person who did get to see and touch our sweet son, but the reality is very few people were able to do so. That fact makes all the Egleston folks more important to us.

Our life with Samuel was limited to two days in the NICU at Northside and 4 weeks in the CICU at Egleston. Once we left the CICU without Samuel, we left behind so much that tied us to him; we left behind almost all the tangible things that connected our lives to Samuel. That was hard to do. It took us a few days to realize it, but even harder than leaving behind the physical connections to Samuel was leaving behind all the people who knew us in the hospital. We walked away, cold turkey, from every person who cared for our baby boy, and every face we saw and depended on each day of Samuel's life. I don't think we realized the impact of that separation when Samuel died.

I was trying to explain it to Bryan on our walk yesterday, and the best I could come up with is that our life is a big puzzle, and all the pieces fit together and connect in some way. Our pasts link us to the present, and the edges of those puzzle pieces touch and connect. People and places from the past overlap into the present. But the puzzle piece that is Samuel's life doesn't rub up against the rest of our pieces. His piece is disconnected -- way over in the margins of the puzzle without any bordering pieces. He didn't live in our house, go to our church, know all the people in our lives, come to our small group, or ride in our car. Because of that, we feel the risk of his life being too removed from us and our daily thoughts.

I told Bryan that I was trying to find ways to create a web that links our "normal life" to Samuel's life. I want to have as many threads as possible that keep us tied to the time we spent at Samuel's side in Egleston. Thanks to facebook, I have "friended" a few people from our holy month of August. I found a couple of nurses, an RT, and a couple of fellow parents. For each of these connections, I am grateful. They give us a sense of continued contact with a world we left behind. And any time I hear from someone we met in the hospital, it is life-giving and refreshing -- a reminder that that life was real, that our time with Samuel was precious, that Samuel's life mattered, and that our presence was somehow noted. I can't explain it because I don't understand it myself, but the words of those we encountered at Egleston carry such weight and mean so much to us.

Today we received a real gift in this regard. Dr. Dennis Kim, one of the cardiologists we had numerous interactions with at Egleston, found our blog and commented on it. Apparently he spent some time today reading our blog and watching Samuel's service. I can't tell you how much this means to me. He said some truly kind and encouraging things, and I suspect I will revisit his words many times in the years to come. Once again, someone who didn't have to enter into our pain chose to do so and blessed us immeasurably in the process.

So, thank you, Dr. Kim, for taking the time to read our words and to watch the memorial service. I am deeply touched that you would choose to do such a thing, and I am humbled by your words. Thank you for writing to us. I can't explain what a gift that is and how healing it is to our hearts. Thank you, thank you.

And thank you, Lord, for little glimpses of Your work and continued redemption of our baby's life. And thank You for each strand of connection You grant us to sweet Samuel and the time we spent with Him in Egleston. Thank You.

Tuesday, September 8, 2009

Seeking the Courage to Embrace Grief

Today has been our first day without company (my mom doesn't count -- she is here for another week or so), and I can already feel the difference. I think with so many people in and out of our house, there have been distractions upon distractions, and there hasn't been a chance for Samuel's death to really sink in. There was always something ahead of me to get through (like the funeral) or someone who was coming to see us, and it wasn't normal life at all, so Samuel's absence didn't seem so real. At every quiet moment, there was someone to sit down and keep company (which I enjoyed since it was my family who I love dearly and one of my best friends, Mandie), but it meant that I never dwelled in the truth that Samuel is gone. I didn't have to think about it for long because there was something else to focus on. That is starting to change.

I can feel grief beginning to close in on me. I can feel it approaching. The air in my house is heavier today that it was last week (with the exception of August 31 -- the day on which Samuel died). Grief's presence is almost audible for me -- it's no longer lurking in outer corners but creeping ever closer and starting to surround me. Sorrow is in my throat and tugging on my heart. It's waiting patiently (or perhaps not so patiently) for me to face it and embrace it.

But the truth is, I've been hiding from grief pretty actively the last week. I know this is all still brand new in the grand scheme of things, and I need to give myself time and grace to feel all the sadness of Samuel's death, but I also know I've been trying to cheat this past week. I've sought distraction in company and in the computer. I've been looking on our blog, my inbox, and facebook for someone to say something that could tide me over until the next person's comment -- for some sort of solace that would protect me from engaging the sorrow. And instead of letting God be my comfort and my rock, I have looked for people to fill my void. But I know this is an empty pursuit, and I have already seen the exhaustion of chasing comfort instead of turning in to the grief and allowing God to meet me there.

And honestly, even in my efforts to ameliorate this pain, I haven't been able to escape it. Late at night when I finally lay my head on my pillow, all the memories come flooding in, and sleep eludes me. When I want to close my eyes and find the peace of forgetfulness in sleep, that is when I can't stop thinking about Samuel -- about all he suffered and endured in his short life, about watching him die a slow death, about holding his synthetically paralyzed body while he faded away, about how his body was unrecognizeable from the beautiful boy he was when he came out of my womb, about the smell of death that clung to him his last week of life, about the constant beeps and dings and alarms that would make our hearts jump. In the still moments, I am bombarded by the pain we witnessed and endured.

I look back on that month in the hospital, and I cannot believe we survived it. There is no way we could have done so without the grace of God. And we not only survived it, we had unspeakable peace through it. How I see God's grace and presence when I replay all the stress-inducing elements of hospital life. I am in awe of how the Lord carried us through. I am amazed that He even granted us joy in those days -- that mostly when I think of my time by Samuel's bed, I think of ENJOYING him. That is a gift from God, for it would have been so natural to spend the whole month in anxiety and fear, with our stomachs in constant knots and unceasing tears streaming down our faces. And though we certainly experienced fear and tears, the predominate emotion I remember is joy. Thank you, Jesus, for blessing us with Your peace and Your joy! Bryan and I can take no credit for that -- You alone are the giver of such gifts.

I guess the short of it is this: I know I will have to walk through grief if I hope to come out of this pain as a whole and well person, sincerely trusting God and praising Him. But it will take incredible courage to truly embrace what is before me. I can see the temptation to try and just tiptoe around the periphery of grief and only dip my finger in the waters when I am willing to shed a few tears and then keep on my merry way. But I need to submerge myself in this new life and experience it fully, without shame, and let GOD be my rescuer and comfort. I need to let Him wash over me with His grace in this new part of my journey, and I need to do so again and again. This won't be a short jaunt. I can't spend a night in misery and then think I've faced it all and can now start about my life as usual. I have to be patient with myself and with God, with my sons and with my husband, and I have to let God heal me in His perfect time, with me a willing follower of His perfect leading.

It will take courage to evaluate how honestly I am walking the road of grief, but I am asking God to grant me the eyes to see clearly and not be deceived. I am asking God to give me discernment into my own heart and how fully I am depending on Him. I am asking Him to give my friends the clarity to identify my evasion tactics and the boldness to ask the questions I need to hear. I want to be the woman God wants me to be both through this process and years down the road as I tell my story that is part of His story. May God do in me whatever it is He wants to do. Lord, grant me the heart to accept Your will and Your refinement; "create in me a pure heart, O God, and renew a steadfast spirit within me" (Psalm 51:10).

Links to Samuel's Memorial Service

Hooray! North Point sent us links to the Memorial Service. You can watch the whole service if you're interested, or you can link to just the video of Samuel's life, or you can watch the email and blog excerpts that were playing before the service. Here are the links:

Just the video of Samuel's life:

The entire service (songs, Bryan's talk, John Woodall's talk, video of Samuel's life, etc.)

Monday, September 7, 2009

Some more pictures from Cami

Since I can't seem to upload the video my brother made, I thought I'd upload a few more pictures instead.

Kathryn's hand on Samuel's head,
loving and enjoying Samuel,
Caleb's hand on Samuel's tummy,
and our family in masks. :)

A Broken World and a Greater Grace

Late this morning as Kathryn and I were with her family and one of Kathryn’s best friends who is visiting from out of town, we found out that some close friends of ours lost two members of their immediate family yesterday. The circumstances are particularly dark, tragic, broken, and painful. We hurt so much for them. There was no way for them to foresee the pit into which they have been hurled, and there is no fast or easy way out. They have a long, hard, and painful road ahead of them. What a broken world we live in!

The more that I thought about and prayed for my friend, the more I wanted to see him, to talk with him, to pray with him, to be with him. He graciously allowed his grieving friend (me) to come over to his house though it was already full of friends and family and sorrow. I got to spend an hour with him. We have spent a good deal of time together, but I suspect that years from now I will remember our hour today more than any of the others.

I had not seen him since Samuel died. Our embrace was a meaningful one – few words, many tears, full of meaning. It was so hard to see a good friend and his family in such pain. I’m sure that this is how many of you have felt about Kathryn and I over these last five weeks (thank you again for your compassion!). It was a unique experience for me to be talking to a trusted friend who is walking with me in my dark valley while I am also walking with him in his. There was a comfort to it that I’m not sure that I can explain. Friendship is a remarkable thing.

We talked and prayed and reflected and wondered about many things. One thought that stands out was our shared observation about how light shines most brightly in the dark. In what are some of the darkest times in both our lives, we find ourselves more aware than ever of God’s presence and His grace. We know that we need Him for our next step and breath and conversation and decision. But we also know and are experiencing moment-by-moment that His grace will be sufficient for all of those things.

As we spoke further into one another’s grief I was reminded how scandalous the grace of God can seem. When it touches the dark, ugly, painful, and unspeakable circumstances of our lives, something happens. From the dark comes light, from the ugly comes beauty, from the pain comes healing, and from the unspeakable comes an utterance. It is because of this offensive, beautiful, powerful, and transformative grace that my friend says, “I find that in some way I’m grateful for Samuel’s death.” And it is by the grace of God that, instead of punching him in the kisser, I nod my head. How else could you talk about such a thing as the death of a one-month old child in such a way? I know what he means. I know that he prayed desperately with us for our son’s healing. I know that if there was anything that he could do to get Samuel back, he would. I also understand that my friend is seeing the Lord use Samuel’s life and death in his life, even to prepare him for the valley that he didn’t know he would be in. My friend is participating with us in God’s gracious redemption of the life and death of Samuel Erik. For that I am grateful.

I returned the favor. I had just heard about the circumstances of his family members’ deaths, about the agony that he and his family are in, and about the unimaginable decisions and conversations that they face. In the midst of all of that, as we were about to part I said to my friend, “Interestingly, our time together has been healing for me.” He didn’t punch me. We both knew that it was the grace of God. The Lord allowed me to comfort a friend from my story and my pain, which is further redemption of Samuel’s life and death. The fact that the encounter was healing for me was a tiny window into how God is already transforming the tragic deaths of my friend’s family members for His purposes. Thank you, God, for your grace and for graciously allowing us to catch glimpses of it at work in our lives.

As you continue to pray for us, please pray for this family as well. We all need God’s grace: peace, rest, comfort, strength, help, hope, faith, and more. Thank you.

Saturday, September 5, 2009

The Relentlessness of Grief

Over the last several days I have repeatedly experienced a strong tension between contradictory thoughts. They seem to happen in rapid succession, each with full conviction.

The first thought abruptly ends stretches of time in which I do not feel heavy-hearted. Sometimes I experience these moments of relative light-heartedness because of exhaustion (too tired to feel or, at least, feel deeply), sometimes it is because I am busy or distracted (it’s amazing how quickly we are back into some of the mundane things of life), and sometimes it is because of joy (as today when I spent the day enjoying my family). Usually these moments are a welcome respite… until I am cognizant of them. Then, however, my mind quickly shifts to the realization that my son died 4 days ago and that we laid him in the ground yesterday. In that moment it hurts my heart to realize that thoughts of him are not always present. I am afraid that I will not remember him, that we will “move on” too quickly.

Leaving the hospital on Monday was very hard for me. Samuel had been dead for several hours, and I knew that the body that lay in front of me was not him. It was his earthly body, but he wasn’t there. At the same time, I had the hardest time walking away from Samuel’s body and out of our CICU dock, 2112. I understand better now than I did then that much of the reason the parting was so hard for me was because the hospital was the only context in which we knew Samuel. We never knew him apart from ventilators, medicine trees, cerebral oximeters, vitals monitors, nurses, hand sanitizer, syringes, warming lights, constant beeps and dings, respiratory therapists, blood gas tests, blood, plasma, and hemoglobin transfusions, doctors, etc. I think that I was afraid that when I walked out, I would be leaving memories behind. In reality, I think that I did. That is hard.

The departure from that world (the hospital) and re-entry into this one (home) has only amplified this challenge. Now that we are home and there are two bedrooms filled and two car seats occupied in the mini van, everything is the way it was just 36 days ago. Honestly, I am frightened by how easy I can already slip back into the old routines, how easy it is at times to miss the significance of the empty nursery, the car seat sitting pointlessly on the floor of the garage, and the new photos all over our house. My awareness of this tendency makes it hard not to resent everything that does not remind me of Samuel. I do not want to forget him. I do not want the old normal back. I want Samuel back. Short of that, I want to remember him. I want to feel the loss, mourn his death, and leave the gap.

Of course, when I fear moving on too quickly and resolve to grieve Samuel’s death, my soul is taken to a place that is very different from the respite where it began. I quickly and willingly re-enter the sorrow of the loss of our son. I seem to feel more alive here. The challenge, however, is that the weight of our anguish is such that I cannot remain under it for long before crying out to God, wondering if this will ever go away, wondering if we’ll ever feel whole again from the battering that our souls have taken in the last month. In this way grief is relentless. In one moment, I am concerned that we are moving on too quickly and in the next that we won’t make it through this.

I say all of this with full conviction that God is good and faithful. I love and believe the words of Jesus that tell us that those who mourn are blessed because they will be comforted (Matt 5:4). My family – Kathy, Erik, Jen, Charlie, Grady, Marta, and Adam – all spent the day with us; they go home tomorrow. I made an intentional effort this morning to give myself permission to be “distracted” and enjoy my family. I know that that may sound funny, but it actually wasn’t easy. As I look back at my time with them, I see evidence of the Lord’s grace, kindness, and comfort. He gave us fun memories and many moments of joy. Though my faculties are insufficient to resolve this tension that I feel, I was reminded today that the grace of God is sufficient to see me through. I will trust in Him and in that.

Thursday, September 3, 2009

Samuel's Funeral

Today was our sweet Samuel's funeral. I have now buried a child of mine. Almost 9 years ago when Bryan and I got married and we would picture the future, I never foresaw today. I think somewhere inside I assumed how God worked -- since Bryan had lost his mom to cancer when he was 14 and his dad when he was 21, I figured Bryan wouldn't possibly have to face the death of his son. But God is unpredictable, and He doesn't follow the patterns I set out for Him. He has ways that are (thankfully) higher than my ways. And sorrow and hardships don't get evenly spread among people. And that's ok. I don't want to walk someone else's path; I want to faithfully journey down the road the Lord has laid before me. I don't want a life different from the one He has for me. I trust that His ways are best even though I don't understand them. And I have to remember that losing Samuel does not make us immune to future heartbreak; it doesn't buy us a pass. We have to seek God's face and grace in each new day and trust Him with what that day holds. As Bryan often starts his days saying, "God, we don't know what today holds, but we know You hold today."

Today, though heartbreaking and painful, was a beautiful day in many regards. We did get to celebrate our precious boy, and we had many friends join us in that celebration. I didn't know many of the people who attended the funeral, and I felt so supported and cared for by the presence of those who came. And this morning I saw a glimpse of God's power and life-giving grace. My parents divorced very painfully over 7 years ago, and they haven't seen each other since the day my dad walked out. Though I knew it would be very difficult for everyone, I really wanted both my mom and dad to be here for Samuel's funeral, and all parties braved an uncomfortable experience to stand with us at Samuel's grave. To my shock and utter amazement, not only did my parents stand in the same room together, they embraced and shared tears. I never, ever thought I would see such a moment of grace. I was deeply touched by their courage and their selfless love for me that they would willingly enter into something so uncomfortable for my sake. Thank you, Mom, and thank you, Dad, for giving me a moment of true joy on one of the most heartbreaking and dark days of my life.

North Point put together excerpts from our email updates and blog, and they were hard to read -- to see our joy and hope back in April when we found out Samuel was a boy and that he had a heart defect, to read the difficult journey we've been on ever since, and to know how the story ends. It hurts to relive the excitement of anticipating his arrival when we know we will never be bringing that precious baby home. But, again, I would never undo this experience. I wouldn't trade my 30 days with Samuel for the world. I think Bryan and I will always look back on August 2009 as a holy time.

Bill Willitts and John Woodall both spoke at the service, and Todd Fields sang "Grace Upon Grace," Sandra McCracken's song that we sang to Samuel everyday. We all sang two of the other songs we'd daily sing to our little boy -- "Blessed Be Your Name" and "It Is Well." We watched Matthew's DVD of Samuel's life (which I am trying to upload to the blog), and Bryan spoke. He talked about hope and how our hope is in Christ -- the only sure thing. Permit me to sing my husband's praise: he did a great job. Some day I will just write a post about how remarkable Bryan is. This last month has proven to me yet again that I married the most amazing man. Blessed am I.

I think the hardest part of the day for me was walking up to the gravesite and seeing this tiny box waiting to be buried. Thinking of my baby inside there....well, there aren't words. My solace was in knowing that the real Samuel is alive and well in Heaven, and what's in that casket is nothing more than the imperfect body that couldn't hold his precious life. Last night when I was praying, I told God, "I don't know if I'm even allowed to ask this because I don't know how it works, but could you please give my Samuel extra cuddles from me and tell him how much I love him?" I like to think of God as filling in all the gaps we couldn't while Samuel was here -- of holding, kissing, and rocking my baby. It was hard to walk away from the casket today. To turn my back and leave. But again, I know Samuel is not really there. Last night when I was talking to Caleb about Samuel being in Heaven, Caleb said, "Samuel will grow up in Heaven!" That made me smile. I don't know how Heaven works, but it's a lovely thought, and it reminded me of one of the verses on Samuel's prayer blanket, "...the boy Samuel grew up in the presence of the Lord" (I Samuel 2:21b).

Anyway, that's enough rambling for the night. It's late, and I am exhausted from this day. It is good for me to record this journey. Thank you for journeying with us. You bless us more than you know.

Wednesday, September 2, 2009

Life and Love

Today, as I faced another day without Samuel, I was struck with how life goes on around me as though nothing has changed. I know this is a universal experience in hard times -- when we feel like time has stopped and nothing will ever be the same, we notice how everyone around us just carries on. Bills and catalogs still arrive in the mail, phone solicitors still call, people still post trivial tidbits as their status updates on facebook, and people still complain about the small stuff as though it was monumental. But for me and for Bryan and for those closest to us, life is forever altered. I know it won't always be this painful, and I won't always notice life's new wave length, but it won't ever be the same. A family picture of the four of us will never again be complete. Samuel's room will never just be the guest room. The answer to the question, "How many children do you have?" will never be a simple, "two." Life is simply different. And it's painful to watch everyone continue on as though nothing has changed. But this is the nature of life.

The last few days have held so many difficult tasks for us -- things parents should never have to do for their children. Like picking a grave plot, picking clothes for our baby to wear in his casket, shopping for clothes for my son's funeral, deciding whether or not to have a time to view our baby boy's body when the funeral home told us that he looks really bad and wouldn't recommend doing it. None of this is as it should be.

But in the midst of all this heartache and all these painful decisions, we have felt so cared for. Bryan's bosses have taken care of so many things for us so we wouldn't have to -- like choosing a casket. And they accompanied Bryan to the burial grounds along with Erik and Matthew, so he wouldn't have to pick a plot alone. The church has taken care of many details so we wouldn't even have to think about them, and they're covering many of our expenses as well. Our small group has provided breakfast for tomorrow morning as well as dinner for our family of 25 for after the services. People continue to bring us food and gas cards. Marta and Kathy, Bryan's sister and step-mom, made beautiful collages of our Samuel pictures, and Matthew, my brother, put together a lovely DVD of photos for the memorial service. We have been served in amazing ways. This is truly the body of Christ at work. I had no idea we could be so loved and in such wonderful ways. I am grateful beyond my ability to express thanks.

So, though we are only just beginning to navigate this life without our baby, we feel uplifted and surrounded by a community of people who will walk alongside us. I am not alone. I see the hands and feet of God in every person who lends a helping hand. And I see God's great pleasure in this community of believers who are acting as Christ designed the church to act. Thank you, friends, for showing me what it means to be the body of Christ.

And though I dread tomorrow and Samuel's funeral and burial, I know the people there with us are hurting alongside us. I know they are carrying some of our pain for us. And I am grateful. Again, we have much to thank our God for.

A Few More Details for Tomorrow

Just wanted to give a few more details regarding tomorrow. The memorial service is at 10am at North Point Community Church, which is at 4350 North Point Parkway in Alpharetta, GA (30022). It will be held in the Theater. You will want to park on the left side of the building and enter under the portico on that side. All are welcome to join us in celebrating the life and mourning the death of Samuel Erik Apinis.

Following the memorial service there will be a brief graveside service for family and close friends at Sawnee View Memorial Gardens at 1390 Dahlonega Hwy in Cumming, GA 30040.

Tuesday, September 1, 2009

Memorial Service

There will be a memorial service for Samuel at North Point Community Church on Thursday, September 3 at 10:00am. You are welcome to join us as we celebrate the short life of our son.

Samuel's Last Hours

I'm staring at the computer screen, not knowing how to write this entry or if any of you will want to read it. But for my own sake, I need to record how Samuel passed away.

Bryan's step-mom, Kathy, his brother, Erik, and his sister, Marta, all arrived in town the night before Samuel died. All of us were able to spend some time at Samuel's bedside that night. Samuel was looking really bad at that point, and because his stats had dropped when we tried to clean his little face, he was looking worse -- crusty stuff on his lips, bloody tape on his face, etc. We weren't excited about the family seeing him like that. To our surprise, when we got back in after shift change, Samuel was all cleaned up. Kim, our night nurse, had done an amazing job creating a peacful ambiance in our little dock. I don't know how she managed to clean Samuel without him plummeting, but she did. The tape on his face was all clean, the blankets were all neatly tucked around him, the lights were dim, lullaby hymn music was playing softly, and his stuffed animals were all lotioned so that there was at least a presence of clean smells. It was a little blessing that felt really big. Again, I felt so cared for.

Erik and Marta took the night shift, and Kim promised to call me if Samuel even started to trend downward, so we could be sure we were there when he passed away. So, Bryan and I went to the sleep pod and climbed in one of the twin cots together like we had done for the last 8 nights. Though every night was cramped with both of us in one twin cot, we needed each other, and it was too sad to sleep in different beds when we were so burdened and broken.

We got up at 5:45 as usual and headed back to the CICU. It was the first morning I walked the long hallway to Samuel without knots in my stomach. Since Kim had promised a phonecall, I felt really peaceful that I was not going to walk into a panicky situation. When we got there, Samuel's stats were pretty similar to when we'd headed to bed, and Erik and Marta left to get some sleep. As they were leaving, Samuel's blood oxygenation began to go down, and I got the report on the latest blood gas -- quite poor.

A doctor and PA came in to talk to us and said that they were between a rock and a hard place -- Samuel couldn't sustain life with his current blood gas results, but they couldn't treat the problem either because he needed higher ventilation settings, and that put him at great risk for a hole in his lungs which he wouldn't survive. They told us that if we left during shift change, they could not guarantee he would still be alive when we came back.

So, we asked them to put Samuel in our arms. He stayed hooked up to all the machines (without them he would have survived only minutes) and medicines, and I held him. We sang many songs, prayed, told him how precious he was, and talked about God, Jesus, Heaven, and who was waiting for him there. At shift change, Kim came in and told Samuel goodbye and that she loved him, and our RT, Suzie, gave him a kiss and told him she loved him too. And then Richard came on for the day shift. I couldn't have asked for better people to be with us. Having Kim, who had really blessed us 3 nights in a row, be there to hand us Samuel and then dear Richard was what I had hoped and prayed for.

After about 40 minutes in my arms, Bryan got to hold Samuel for about an hour, and then I held him again for the last hour of his life. He got lots of love in those hours, and though it wasn't nearly enough to fill in the month of not being able to hold him, it was a deep blessing and a time we will treasure in our hearts for all of our days. We stayed with Samuel for a long time after he passed away, but it was so evident to me that he was gone -- that the baby before us was an empty shell and the true Samuel was alive and well, celebrating in Heaven with his Maker.

Richard and Mary Beth (another nurse we love) gently cleaned up Samuel's body and removed all the tape, lines, etc and dressed him. He had never worn clothes before, and it was strange to see him in them. When I looked at Samuel without all the tape on his face and tubes in his nose, etc, I saw just how sick he was and how uncomfortable he must have been. In those moments, it was easier to rejoice in his death because I could so clearly see how much better off he is now.

Though I did not want to lose my son, I am thankful for the way in which it came to pass. The Lord graciously allowed it to happen when we were there from the start of the decline on, when the two nurses I felt most at ease with were on duty, when it was quieter on the floor because it was early morning and then shift change -- with no other parents around, when it was dark and rainy out and Samuel didn't look so sick as in the light of the sun, and when Bryan and I could have extended time holding our precious baby. And, not least of all, the Lord spared us from having to decide whether or not to remove care. He took Samuel home before we had to cross that road, and for that I am truly grateful.

I don't know what to do with the fact that God answered all my little requests but did not answer my big one. I am thankful for His faithfulness in the small things, and I continue to trust that He is good and loving. He is my comfort in this new day without Samuel. But I don't know why God didn't save the day and heal my son. I will probably never know. What I do know is this: what God asks of me is my trust in Him, my continued faith, my obedience to Him, and my heart. He wants me to come to Him in the dark times and continue to proclaim His goodness (He IS good!), and He wants me to love Him. Those things I will seek to do with all my heart, but I know on some days it will be harder to do than on others. I know I can rest in His unchanging grace, and I know on the harder days, He can handle my sorrow, anger, and lack of faith. I will strive to authentically walk this road of grief before me and let God, who did not heal Samuel's heart, now heal mine.