Thursday, August 12, 2010
From My Journal Aug. 11, 2009
The last few days have marked the year anniversary of a series of bad news. August 10-12 Bryan and I got repeated discouraging news that really changed the direction of our expectations for Samuel. It was a year ago today that the doctors first told us they didn't think surgery would be an option, and Samuel ended up on the oscillator and a paralytic for the first time. I just found a 10 second video from when Samuel was on the oscillator, and I'd forgotten how incredibly loud it was. They were extremely hard days for us -- a time when our upbeat hope really started to turn into a continually gnawing fear. We still had indescribable peace much of the time, but underneath it all there was the very real possibility that Samuel would die. And I guess peace wouldn't be true peace if we were only peaceful because we thought God would do just what we wanted instead of trusting Him to be God and good no matter what.
Here is what I wrote in my journal on August 11, 2009:
"Samuel is still in the CICU at Egleston, and doctors still don't really know what's going on. Yesterday was a very discouraging day. Dr. Kirshbom and Dr. Videlefsky came to see us after the Cath Conference (14 doctors, 3 surgeons), and their news was disheartening. They don't understand why Samuel is a as sick as he is. Everything doesn't add up. His lungs should be better than they are, and they are concerned about his liver. Plus the heart issues he has don't seem to add up to the trouble he's having. Dr. Kirshbom doesn't want to do surgery if he's not sure it will help Samuel -- and he's not sure it will. He feels confident he can close the PDA which is shrinking (but slowly), and he thinks he can take care of the large fistula. However, there are several small fistulae going to the left side of Samuel's heart, and he doesn't think he can do anything about those. Mostly he's not convinced surgery will truly help Samuel. This is heartbreaking news to me. In the last 18 hours, I've come face-to-face with the reality that I very well may lose Samuel. He may never get to come home, I may never get to feed him, he may never know his brothers, I may never have all 3 of my boys together. It's been a dark time for me and terrifying. I love little Samuel so much, and I don't know how I'll go forward if I lose him. I know I won't have to walk that path alone, but it's a horrifying path I can hardly stand to ponder.
Last night I shut myself in our dark bathroom, sat on the side of the tub, and just bawled. I wonder how we can survive this. I know in my mind that God will carry us through whatever is ahead, and that whatever He asks, His grace will provide, but my heart feels so broken, and my hope is so thin and brittle. Last night's info was hardly the final word, but it felt crushing.
Grant me faith, Lord, trust and hope. Grant me an utter dependence on You. Help me cling to You, and help me honor You in this process. Help my life to bring You glory. Give me feet that are firm on Your foundation and a heart that sings Your praise in the darkness as well as the light. Buoy me up on Your truth, goodness, faithfulness, and kindness. Sustain me. And do the same for Bryan. Carry Caleb and Joel through these days. Fill in our gaps. Where we can't be enough for any of our sons, I know You can. Grant them joy, peace, and security. And encourage my mom. Give her places to be broken and hurt. Give her energy to keep the boys. Help Bryan and I be able to love Caleb and Joel as they need it in this time.
And heal Samuel, Jesus. Touch his heart and heal it. Close the PDA, prevent a coarc from forming. Fix the fistulae. Heal his lungs and liver. If there's something the doctors are missing, help them to find and see it. Keep Samuel safe in the Cath. lab. Grant Samuel a long and healthy life, and help us to trust him into Your care. Carry us day by day.
I trust You, Lord, and I love You. Help me to submit to You in all of this. Amen."
Here is what I wrote in my journal on August 11, 2009:
"Samuel is still in the CICU at Egleston, and doctors still don't really know what's going on. Yesterday was a very discouraging day. Dr. Kirshbom and Dr. Videlefsky came to see us after the Cath Conference (14 doctors, 3 surgeons), and their news was disheartening. They don't understand why Samuel is a as sick as he is. Everything doesn't add up. His lungs should be better than they are, and they are concerned about his liver. Plus the heart issues he has don't seem to add up to the trouble he's having. Dr. Kirshbom doesn't want to do surgery if he's not sure it will help Samuel -- and he's not sure it will. He feels confident he can close the PDA which is shrinking (but slowly), and he thinks he can take care of the large fistula. However, there are several small fistulae going to the left side of Samuel's heart, and he doesn't think he can do anything about those. Mostly he's not convinced surgery will truly help Samuel. This is heartbreaking news to me. In the last 18 hours, I've come face-to-face with the reality that I very well may lose Samuel. He may never get to come home, I may never get to feed him, he may never know his brothers, I may never have all 3 of my boys together. It's been a dark time for me and terrifying. I love little Samuel so much, and I don't know how I'll go forward if I lose him. I know I won't have to walk that path alone, but it's a horrifying path I can hardly stand to ponder.
Last night I shut myself in our dark bathroom, sat on the side of the tub, and just bawled. I wonder how we can survive this. I know in my mind that God will carry us through whatever is ahead, and that whatever He asks, His grace will provide, but my heart feels so broken, and my hope is so thin and brittle. Last night's info was hardly the final word, but it felt crushing.
Grant me faith, Lord, trust and hope. Grant me an utter dependence on You. Help me cling to You, and help me honor You in this process. Help my life to bring You glory. Give me feet that are firm on Your foundation and a heart that sings Your praise in the darkness as well as the light. Buoy me up on Your truth, goodness, faithfulness, and kindness. Sustain me. And do the same for Bryan. Carry Caleb and Joel through these days. Fill in our gaps. Where we can't be enough for any of our sons, I know You can. Grant them joy, peace, and security. And encourage my mom. Give her places to be broken and hurt. Give her energy to keep the boys. Help Bryan and I be able to love Caleb and Joel as they need it in this time.
And heal Samuel, Jesus. Touch his heart and heal it. Close the PDA, prevent a coarc from forming. Fix the fistulae. Heal his lungs and liver. If there's something the doctors are missing, help them to find and see it. Keep Samuel safe in the Cath. lab. Grant Samuel a long and healthy life, and help us to trust him into Your care. Carry us day by day.
I trust You, Lord, and I love You. Help me to submit to You in all of this. Amen."
Tuesday, August 10, 2010
Caleb's First Day of Kindergarten
Today our Caleb-bear started kindergarten. Last night we went out for frozen yogurt to celebrate, and this morning the four of us went to McDonald's for pancakes before heading to school. When we walked in the classroom, Caleb (who is shy and introverted and takes a long while to feel at ease somewhere) immediately grew reserved and quiet, and I could tell he was uneasy. But he was brave, and he gave us all goodbye hugs with a smile. I barely made it out the door of his room before I burst into tears. Joel was utterly baffled by my crying and couldn't for the world figure out why I would be sad. Thankfully Bryan was there to reassure Joel as I couldn't get any words out.
All day long I thought about Caleb and prayed for his day. I could hardly wait to pick him up. But as soon as he started walking to the car at the pick-up line, I could tell he wasn't doing well. He was on the brink of tears. When I got him in the car, he wouldn't say a word about his day, and I could tell his tears were growing closer to the surface with every question I asked. So I told him to close his eyes and rest, and I sat quietly the rest of the drive home. Once we got home, he crumpled on the floor upstairs and said he couldn't move. He also said he was freezing, and today it was 96 out, and our upstairs was 81 degrees -- so I knew something was off. Turns out he had a fever (which was actually a relief to me because it explained his sorrow. I was afraid he had hated his first day) and a bad headache. I tucked him in to bed to rest, and he was asleep in no time. He woke up with more perk and was willing to tell me a little about his day, and it was a pretty good day until the headache set in.
He told me that his table buddy, Will, thought Caleb's snack looked yummy, so Caleb gave him three pieces. When Will proclaimed how much he liked the snack, Caleb gave him more. As Caleb was telling me the story, I thought, "That's my Caleb! Generous to his core." He has such a naturally kind and good heart. I don't know where he got that generosity from as it certainly isn't me. My gut reaction as a child (and I'm ashamed to admit it, but even as an adult!) would have been to pull my bag of popcorn closer to myself and to shield it from my neighbor's hungry eyes. Caleb puts me to shame and teaches me so much. I love that about him!
Tomorrow we will do our first day of homeschool. We chose to send Caleb to a school that is a homeschool hybrid. He goes to class two days a week, and I homeschool him the other three days with curriculum provided by the school. I'm excited about it, and Bryan and I are both convinced we made the best decision for Caleb. I shudder when I think about what this week would have been for him if he was going five days a week for 8 hours a day!
A year ago, we were sending Caleb off for his first day of preschool. Bryan and I worked our day around taking Caleb to McDonald's for pancakes and then to preschool ourselves. Afterwards we headed to Egleston to spend the rest of the day with Samuel. I remember after dropping Caleb off, we came back to the car, and I bawled my eyes out. I couldn't stop crying. Mostly I was sobbing about Samuel, but I was also crying about saying goodbye to another of my children. With the drain of a nightly goodbye to Samuel (the worst part of everyday), it was excruciating to say goodbye to Caleb too. I can't explain it, but that cry session in the car stands out to me as one of the biggest cries I had while Samuel was alive.
Here are some pictures of this year's rite of passage as well as last year's:
All day long I thought about Caleb and prayed for his day. I could hardly wait to pick him up. But as soon as he started walking to the car at the pick-up line, I could tell he wasn't doing well. He was on the brink of tears. When I got him in the car, he wouldn't say a word about his day, and I could tell his tears were growing closer to the surface with every question I asked. So I told him to close his eyes and rest, and I sat quietly the rest of the drive home. Once we got home, he crumpled on the floor upstairs and said he couldn't move. He also said he was freezing, and today it was 96 out, and our upstairs was 81 degrees -- so I knew something was off. Turns out he had a fever (which was actually a relief to me because it explained his sorrow. I was afraid he had hated his first day) and a bad headache. I tucked him in to bed to rest, and he was asleep in no time. He woke up with more perk and was willing to tell me a little about his day, and it was a pretty good day until the headache set in.
He told me that his table buddy, Will, thought Caleb's snack looked yummy, so Caleb gave him three pieces. When Will proclaimed how much he liked the snack, Caleb gave him more. As Caleb was telling me the story, I thought, "That's my Caleb! Generous to his core." He has such a naturally kind and good heart. I don't know where he got that generosity from as it certainly isn't me. My gut reaction as a child (and I'm ashamed to admit it, but even as an adult!) would have been to pull my bag of popcorn closer to myself and to shield it from my neighbor's hungry eyes. Caleb puts me to shame and teaches me so much. I love that about him!
Tomorrow we will do our first day of homeschool. We chose to send Caleb to a school that is a homeschool hybrid. He goes to class two days a week, and I homeschool him the other three days with curriculum provided by the school. I'm excited about it, and Bryan and I are both convinced we made the best decision for Caleb. I shudder when I think about what this week would have been for him if he was going five days a week for 8 hours a day!
A year ago, we were sending Caleb off for his first day of preschool. Bryan and I worked our day around taking Caleb to McDonald's for pancakes and then to preschool ourselves. Afterwards we headed to Egleston to spend the rest of the day with Samuel. I remember after dropping Caleb off, we came back to the car, and I bawled my eyes out. I couldn't stop crying. Mostly I was sobbing about Samuel, but I was also crying about saying goodbye to another of my children. With the drain of a nightly goodbye to Samuel (the worst part of everyday), it was excruciating to say goodbye to Caleb too. I can't explain it, but that cry session in the car stands out to me as one of the biggest cries I had while Samuel was alive.
Here are some pictures of this year's rite of passage as well as last year's:
At Yogli Mogli's celebrating Caleb's start of school the next day
Giggling boys at Yogli Mogli
Caleb, the very-almost kindergartener
(Caleb said he wasn't a kindergartener until he walked in his classroom.)
Getting ready to go to McDonald's for pancakes
First morning of school pancake breakfast
Bryan and Caleb at Caleb's desk -- an official kindergartener now!
Caleb with his teachers
He said of his lead teacher, "I liked her right from when I very first saw her." :)
Me and Caleb last year before heading to preschool and the hospital
I see in this picture how much Caleb wanted me near him -- how hard it was that B and I had been gone for the majority of the last 11 days
Again last year before starting preschool
Sunday, August 8, 2010
Video of Open-eyed Samuel
After trying to upload this video to blogger for two days, I have finally relented and uploaded it to YouTube instead. It's from August 7, 2009. In some ways, August 6-9 were the most joyful days we had with Samuel. He was awake and open-eyed some of the time, we were in the rhythm of hospital life, and we hadn't yet gotten any terrible news about the future. We expected to some day bring home a healthy Samuel, and we felt hopeful about his condition and the doctors' abilities to help him. They are days I am so glad we had.
The First Week of August 2010
This past week has continued to be gentler than I anticipated -- at least for me. It's been a difficult start to August for Bryan, though. My brother and his family decided last minute to drive out and spend a few days with us, so their presence certainly helped lighten the burden of this first week. The five cousins had a grand time together: playing, swimming, going to the Aquarium, wrestling, and having their first ever cousin sleepover. Joel and Colin are both three, and they slept on a pallet one night at the Thiels' house while the 4 parents went out to dinner. When we got home after 11:00pm, they were still chatting away -- about Silly Bandz, Star Wars characters, and silly pizza toppings. It was hilarious and adorable. The grown-ups meanwhile went to Veni Vidi Vici, an upscale Italian restaurant in Atlanta. Bryan knows the head chef, Jamie, through his job at our church, and Jamie took away our menus and prepared us an amazing 8 course meal of food just for us. It was incredible! And a really wonderful evening with Matthew and Ashley.
Bryan and I both loved seeing our niece June, who Bryan called "our June." She is a day younger than Samuel, and seeing what she was up to was precious and in some ways shocking. She is so big now and crawling all over, climbing the stairs, saying "hi June," and generally being the most content baby ever. Bryan and I both feel so deeply endeared to her, and it did us both good to cuddle her and kiss her and carry her around a little. I am so glad she's a friendly soul and was perfectly happy for us to hold and smooch on her. We can hardly believe Samuel would be that big. I am so thankful that June is in all of our lives and can be a joyful picture of what might be in Heaven. She is one cute one year old!
People have been continually gracious and kind to us. Four times today I teared up over the kindness and thoughtfulness of others. The teachers in Joel's Sunday school class gave us a card with a donation to Children's Health Care of Atlanta in it, and I didn't even know that they knew about Samuel. I started crying in the middle of a room full of people when I opened it because it took me by such surprise and was so thoughtful. A few minutes later a woman I barely know told me that last year when Samuel was alive she didn't know about him and what was going on, but she was praying for us. Why in the world we would even have been on her mind is baffling to me as she was a teacher in Caleb's Sunday school class a several of years ago, but Bryan and I didn't know her personally. It reminded me that the way God cares for us is so personal, so much bigger than we can fathom, and so miraculous. And this evening our friend, Laura (who has served us in absolutely AMAZING ways over the last year -- too numerous to count), brought over printed pages of our blog -- just in case. :) Over the course of this past week, people have sent cards, flowers, a necklace, a meal, a pie, a plant that blooms in August, donations in Samuel's memory, a Starbucks gift card, and free babysitting. I feel so cared for and so blessed. Thank you, friends, for loving us through this past year and for continuing to love and encourage us, and most especially thank you for praying. We feel it!
And here are pictures from the cards Caleb and Joel made for Samuel:
Bryan and I both loved seeing our niece June, who Bryan called "our June." She is a day younger than Samuel, and seeing what she was up to was precious and in some ways shocking. She is so big now and crawling all over, climbing the stairs, saying "hi June," and generally being the most content baby ever. Bryan and I both feel so deeply endeared to her, and it did us both good to cuddle her and kiss her and carry her around a little. I am so glad she's a friendly soul and was perfectly happy for us to hold and smooch on her. We can hardly believe Samuel would be that big. I am so thankful that June is in all of our lives and can be a joyful picture of what might be in Heaven. She is one cute one year old!
People have been continually gracious and kind to us. Four times today I teared up over the kindness and thoughtfulness of others. The teachers in Joel's Sunday school class gave us a card with a donation to Children's Health Care of Atlanta in it, and I didn't even know that they knew about Samuel. I started crying in the middle of a room full of people when I opened it because it took me by such surprise and was so thoughtful. A few minutes later a woman I barely know told me that last year when Samuel was alive she didn't know about him and what was going on, but she was praying for us. Why in the world we would even have been on her mind is baffling to me as she was a teacher in Caleb's Sunday school class a several of years ago, but Bryan and I didn't know her personally. It reminded me that the way God cares for us is so personal, so much bigger than we can fathom, and so miraculous. And this evening our friend, Laura (who has served us in absolutely AMAZING ways over the last year -- too numerous to count), brought over printed pages of our blog -- just in case. :) Over the course of this past week, people have sent cards, flowers, a necklace, a meal, a pie, a plant that blooms in August, donations in Samuel's memory, a Starbucks gift card, and free babysitting. I feel so cared for and so blessed. Thank you, friends, for loving us through this past year and for continuing to love and encourage us, and most especially thank you for praying. We feel it!
And here are pictures from the cards Caleb and Joel made for Samuel:
Friday, August 6, 2010
Remembering Samuel's First Few Days
August 3, 2009 -- Samuel being transported to Egleston with Bryan in the passenger's seat
Aug. 4 -- Samuel under the bilirubin lights and Bryan basking in their glow
Aug. 5 -- Samuel's first real open eyes. We LOVED this time with our baby boy looking at us.
In this month of August (2010), I've decided to go back every day and read our blog entry from that day a year ago. We didn't start the blog until Aug. 6 -- a year ago today, so the past few days I've hunted our email records for emails we sent out and looked through iphoto for pictures from those days. Above are some of the pictures I found from August 3-August 5, 2009. I sure miss that little fellow, but I am so incredibly thankful for the 31 days we had him with us.
The first week of August was definitely the most hopeful time for us, and in some ways it's hard to look back and read about and see the hope we felt. But again I am grateful for time with Samuel that wasn't weighed down by the probability of death. I remember looking around the hospital at other parents and feeling almost guilty that our situation seemed so hopeful, and someday hospital life would be behind us, and we'd have a totally healthy Samuel. Later I looked at parents and prayed they weren't in our shoes and facing the future that loomed ahead of us -- a future without our dear son.
Here are some excerpts from emails Bryan and I wrote in those first days:
"We had some time w/ our pediatric cardiologist today, and the diagnosis was different yet again. He thinks that this time he discovered a right coronary fistula that could be confirmed and potentially fixed with a heart catheterization. He also thought that he saw as many as 7 other potential issues. Some related and others not. His hope for the catheterization is that it would either confirm or rule out most of the other 7 issues. As a result of this, he wanted to expedite Samuel's transfer to Egleston. We made the transfer at about noon today, and I rode in the transport vehicle with Samuel, a paramedic, a nurse, and a respiratory therapist. What an undertaking! Kathryn was discharged and her mom arrived in town all at about the same time.
"...We will be talking to our pediatric cardiologist again tonight after he and 14 other doctors and 3 surgeons have their "conference" in which they review all of the cases. We are hoping that Samuel's will be reviewed, but it was a late entry and we are not sure. In short, our pediatric cardiologist said that the results of the discussion were favorable to us, but it is hard when you have had six different diagnoses and when so many questions remain unanswered to have confidence in the most recent conclusions. Our little Samuel's heart remains a mystery. Our pediatric cardiologist told us before Samuel was born that the echo that he received after he was born would give us 100% confidence in the diagnosis. Especially with that in mind, it has been so interesting to see a gathering of experts be so confounded." (email Bryan wrote on Aug. 3)
"We would sure appreciate your prayers over the coming days and weeks. We don't know what is ahead of us, and we know that the outcomes for which we pray are not guaranteed. That said, we do know that God is with us. We know that He is good, gracious, and kind, that He loves and cares for us and Samuel, and that He never fails. Thanks for your prayers and support along the way. They are greatly appreciated." (email Bryan wrote on Aug. 4)
"We are doing alright. Samuel is in the CICU at Egleston and has been here since Monday. The doctors (I think we've seen 12 of them so far) are scratching their chins over Samuel's heart and don't really know exactly what's going on. We learn a little each day, but there are still some things that elude them. Most likely surgery is on the horizon next week, but they're not sure. We have had many diagnoses. He is also having trouble with his lungs and is on a ventilator -- one doc said they look like a baby born at 27 weeks. Good thing Samuel didn't come at 35 weeks like we feared he might! I feel like it's been 2 weeks since Samuel was born; it's hard to believe he's not even 4 days old yet. Thanks for checking in. We are hanging in there and have plenty of laughs in our days sitting by Samuel's bedside. Again, we are thankful for a God who knows our son's heart even when doctors don't and for His peace and faithfulness." (email I wrote to my OB on Aug. 5)
"We're at the hospital now, sitting with our Samuel. Today we found out a bit more. We spoke with the surgeon, and he said, 'Samuel's case has proven to be more complicated than we expected. Lots of doctors are scratching their heads about him. His case is very unusual, so I can't give you any specific course of action or outcome, but we want to be cautious and "check twice and cut once" so we're going to continue waiting a bit longer.' We appreciate his approach. Their best guess is that Samuel will need surgery in the middle to end of next week. It looks like he will probably have a coarctation (narrowing of the aorta) which will have to be surgically repaired before he can come home. We are praying this does not happen. And he has a fistula which is very rare in newborns that probably needs fixing. In all likelihood, it would be one surgery but two places to enter -- in the side for the coarctation and from the front for the fistula. And they still don't know about the VSD (hole in the ventricle of his heart). His breathing is a bit better today. Part of his lung is collapsed, but it seems to be improving. Tomorrow they plan to take the lines out of his belly button and put them in his arm. This will allow them to start giving him breastmilk through a feeding tube instead of the mountain dew looking stuff he's on now.
"I am praying that he gets off the ventilator soon, that no coarctation develops, that there is no VSD, and that the fistula doesn't need surgery. In short, I am praying that he doesn't need surgery and that he can come home SOON! I am dying to hold him. When I think of another baby -- June (Matthew and Ashley's baby girl born on Aug. 2) or my friend's baby who is 2 weeks old, I start to cry when I imagine seeing their parents holding them. How I wish I could hold my son. In time, in time. I trust God, and most moments, I am peaceful and calm-hearted and even-keeled. THANK YOU for praying. There is no greater thing you could be doing. " (email I wrote to my friend Kristen on Aug. 5)
Looking back is a bit surreal, but everyday I am grateful for a record of Samuel's life, for something tangible to keep, and a way to remember. Though there were times I wanted to curse this blog, I am so glad we have it. I am thankful for remembering.
Tuesday, August 3, 2010
Samuel's First Birthday
Sunday was a pretty huge day for us, marking what would have been Samuel's first birthday. Over the last 11 months, I worried a good deal about August 1st, 2010 and how it would go, how we would feel, and if I would have any dry-eyed moments. I have to say, I was rather surprised by how the day passed in reality. I knew what the day would look like as far as events were concerned, but I couldn't predict the emotions that would accompany the day, and that part made me downright nervous. I feared a day of unstoppable tears and gut-wrenching churning in my stomach, the constant gnawing of grief in my insides. But that's not really how I felt at all. The day was bathed in peace, had many moments of joy, and included quite a few tears. It was a blessed day, a quietly peaceful day where I could celebrate the birth of our Samuel and thank God for bringing him into our lives albeit it briefly.
The night before we decided to skip church on Samuel's birthday morning. We went back on forth on whether we should go, but in the end we thought it would make the day easier to stay home. I'm glad we made that choice. It enabled me to start my day peacefully, laying in bed and praying God's grace over the day, thinking about what the day would hold, remembering the start of August 1, 2009, and simply thanking God for our Samuel and asking Him to carry us through the day ahead. If we'd been going to church, my day would have started with a flurry -- scampering out of bed to get in the shower before Bryan, so we could get the boys up, dressed, breakfasted, and out the door by 8:20. I would have had to start my day by steeling myself for the gauntlet of sympathy and compassion, "I'm sorry's," and looks of pity. Don't get me wrong, I so, so appreciate the love and support we get from our friends and acquaintances. I wouldn't trade it for the world. But it's hard to remain composed through all the hugs and sympathy, and I was so afraid that once I started crying, I wouldn't be able to stop. Instead, Bryan went out and got us bagels for breakfast, a rare treat -- and the first gift from my mom's envelopes. And we had a calm and quiet start to our day.
At 11:15 we headed to my aunt and uncle's house for Samuel's little party they were throwing. We walked in their door to hugs and smiles and joy. They had planned a pirate party for Caleb and Joel, hoping to make the day a fun and happy one for Samuel's brothers. They had costumes waiting for the boys and a treasure hunt all set up with burnt-edged clues and all. It was precious, and the boys loved it, of course. We played "pin the treasure chest on the island" and found hidden treasure.
After lunch, we had Samuel's birthday cake that I baked and Bryan decorated. Bryan chose to do a Pooh scene because we put a Pooh in the coffin with Samuel's body. We didn't sing or blow out candles, but we ate Samuel's cake with smiles and joy.
Colleen had bought helium balloons and had sharpies out for us to each decorate a balloon to send to Samuel in Heaven. It was a great idea. We each had a balloon and either drew pictures or wrote a letter to our sweet boy. Once we were all finished with our messages, we went outside and released them. We watched them float up in the sky until the dots became so tiny our eyes hurt from straining so. Somehow it was a comforting thing to do -- letting those balloons go. I can't explain it and didn't expect it, but I think it was calming and soothing to all of us. The Thiels were so kind to plan the party for us and to work so hard to make sure Caleb and Joel had a joyous time celebrating their little brother. Bryan and I felt tremendously blessed by their effort and care.
We came home for the boys' naps, and I spent the next two hours reading my journal from last year, journaling about the day, and copying Samuel's birth story on to here. It was good to spend that time remembering and thinking.
Once the boys woke up, we opened the presents my wives' group brought for them -- labeled "To Samuel's brother, Caleb" and "To Samuel's brother, Joel." They loved doing that. And then as a family we sat down at the computer and picked which World Vision projects to give Samuel's birthday money to. Joel immediately wanted to give his portion of the money to help the children in Haiti, and Caleb chose to give his to help the vulnerable children in India. I didn't lead them to either of those choices, but those are the two countries continually on my heart and in my prayers. A friend with whom I used to teach sent us some money to add to Samuel's birthday funds, so we got to give even more to places we feel God has laid on our hearts. The boys have loved giving Samuel's birthday and Christmas money to help those in need, and I love their enthusiasm and joy in doing it.
Then we ordered in pizza (part two of the day's envelope activity from my mom), and we spent a quiet evening at home. When I tucked Caleb in, I asked him about his day, and he said, "It was good, Momma. I had a good day." The night before when I had tucked him in, I had started to cry and had said, "Caleb, I think tomorrow is going to be a hard day." He worked so hard to comfort me. He held me tight and rubbed and rubbed my arm, patting my cheek occasionally, doing everything he knew to soothe my heart and calm my tears. When I pulled myself together and sat up, he burst into tears and sobbed and sobbed for a long time. I scooped him up and did everything for him that he'd just done for me. He told me how sad he was about Samuel and how much he missed him, and I just held him close. I went and got one of Samuel's stuffed animals from his month in the hospital and gave it to Caleb to cuddle, and I moved his picture of him and Samuel on to his bedside table so he could see it easily. He brightened up immediately to have those two tangible things by him. So it was kind of a big deal that Caleb's assessment of the day was joyful and good. In the end, it was my assessment too.
By the time I went to bed, I felt so thankful for a day that held mostly joy and a lot of peace. The day was far gentler than I had expected, and it was very blessed. Of course it was sad and had hard moments and many tears, but it was also genuinely joyful. It was easy to celebrate Samuel's birth, for I am so glad he was born. I am so thankful for how he has blessed and changed us, drawn us closer to God, deepened our hearts and our faith, and given us an appreciation for the simple blessings of life. And I am so thankful for the month I had by his side. Though the month was heartbreaking, it was also full of miracles and God's abundant presence, grace, faithfulness, and peace. It was a holy month, and I would never trade even a moment of it for something else. And so far this August I have felt buoyed up by the prayers of many -- just as I felt last August. So...thank you, prayer warriors, and thank you, Jesus.
The night before we decided to skip church on Samuel's birthday morning. We went back on forth on whether we should go, but in the end we thought it would make the day easier to stay home. I'm glad we made that choice. It enabled me to start my day peacefully, laying in bed and praying God's grace over the day, thinking about what the day would hold, remembering the start of August 1, 2009, and simply thanking God for our Samuel and asking Him to carry us through the day ahead. If we'd been going to church, my day would have started with a flurry -- scampering out of bed to get in the shower before Bryan, so we could get the boys up, dressed, breakfasted, and out the door by 8:20. I would have had to start my day by steeling myself for the gauntlet of sympathy and compassion, "I'm sorry's," and looks of pity. Don't get me wrong, I so, so appreciate the love and support we get from our friends and acquaintances. I wouldn't trade it for the world. But it's hard to remain composed through all the hugs and sympathy, and I was so afraid that once I started crying, I wouldn't be able to stop. Instead, Bryan went out and got us bagels for breakfast, a rare treat -- and the first gift from my mom's envelopes. And we had a calm and quiet start to our day.
At 11:15 we headed to my aunt and uncle's house for Samuel's little party they were throwing. We walked in their door to hugs and smiles and joy. They had planned a pirate party for Caleb and Joel, hoping to make the day a fun and happy one for Samuel's brothers. They had costumes waiting for the boys and a treasure hunt all set up with burnt-edged clues and all. It was precious, and the boys loved it, of course. We played "pin the treasure chest on the island" and found hidden treasure.
After lunch, we had Samuel's birthday cake that I baked and Bryan decorated. Bryan chose to do a Pooh scene because we put a Pooh in the coffin with Samuel's body. We didn't sing or blow out candles, but we ate Samuel's cake with smiles and joy.
Colleen had bought helium balloons and had sharpies out for us to each decorate a balloon to send to Samuel in Heaven. It was a great idea. We each had a balloon and either drew pictures or wrote a letter to our sweet boy. Once we were all finished with our messages, we went outside and released them. We watched them float up in the sky until the dots became so tiny our eyes hurt from straining so. Somehow it was a comforting thing to do -- letting those balloons go. I can't explain it and didn't expect it, but I think it was calming and soothing to all of us. The Thiels were so kind to plan the party for us and to work so hard to make sure Caleb and Joel had a joyous time celebrating their little brother. Bryan and I felt tremendously blessed by their effort and care.
We came home for the boys' naps, and I spent the next two hours reading my journal from last year, journaling about the day, and copying Samuel's birth story on to here. It was good to spend that time remembering and thinking.
Once the boys woke up, we opened the presents my wives' group brought for them -- labeled "To Samuel's brother, Caleb" and "To Samuel's brother, Joel." They loved doing that. And then as a family we sat down at the computer and picked which World Vision projects to give Samuel's birthday money to. Joel immediately wanted to give his portion of the money to help the children in Haiti, and Caleb chose to give his to help the vulnerable children in India. I didn't lead them to either of those choices, but those are the two countries continually on my heart and in my prayers. A friend with whom I used to teach sent us some money to add to Samuel's birthday funds, so we got to give even more to places we feel God has laid on our hearts. The boys have loved giving Samuel's birthday and Christmas money to help those in need, and I love their enthusiasm and joy in doing it.
Then we ordered in pizza (part two of the day's envelope activity from my mom), and we spent a quiet evening at home. When I tucked Caleb in, I asked him about his day, and he said, "It was good, Momma. I had a good day." The night before when I had tucked him in, I had started to cry and had said, "Caleb, I think tomorrow is going to be a hard day." He worked so hard to comfort me. He held me tight and rubbed and rubbed my arm, patting my cheek occasionally, doing everything he knew to soothe my heart and calm my tears. When I pulled myself together and sat up, he burst into tears and sobbed and sobbed for a long time. I scooped him up and did everything for him that he'd just done for me. He told me how sad he was about Samuel and how much he missed him, and I just held him close. I went and got one of Samuel's stuffed animals from his month in the hospital and gave it to Caleb to cuddle, and I moved his picture of him and Samuel on to his bedside table so he could see it easily. He brightened up immediately to have those two tangible things by him. So it was kind of a big deal that Caleb's assessment of the day was joyful and good. In the end, it was my assessment too.
By the time I went to bed, I felt so thankful for a day that held mostly joy and a lot of peace. The day was far gentler than I had expected, and it was very blessed. Of course it was sad and had hard moments and many tears, but it was also genuinely joyful. It was easy to celebrate Samuel's birth, for I am so glad he was born. I am so thankful for how he has blessed and changed us, drawn us closer to God, deepened our hearts and our faith, and given us an appreciation for the simple blessings of life. And I am so thankful for the month I had by his side. Though the month was heartbreaking, it was also full of miracles and God's abundant presence, grace, faithfulness, and peace. It was a holy month, and I would never trade even a moment of it for something else. And so far this August I have felt buoyed up by the prayers of many -- just as I felt last August. So...thank you, prayer warriors, and thank you, Jesus.
Some Favorite Pictures of Samuel's First Days of Life
About an hour after Samuel was born
When we finally got to see Samuel around 4am on August 2 in the NICU
August 2nd at Northside Hospital
August 2nd -- Caleb meeting Samuel for the first time
My favorite picture of Samuel -- August 2nd
August 3rd -- Just before being transported to Egleston in the CHOA ambulance
Sunday, August 1, 2010
Samuel's Birth Story -- as taken (and edited :) ) from my journal
On Friday, July 31, three and half weeks before my due date, Bryan, the boys, and very pregnant me headed to Lake Hartwell in Anderson, SC to spend 26 hours with our husbands and wives group. We deliberated and deliberated about going and were super undecided. We just could not figure out what was best and finally decided, based on Dr. Siegel's thumbs up, to go ahead and go. But when I woke up Friday am, I was leaking some fluid. So we were back to indecision. But a phone call to Dr. Siegel gave us the go-ahead, and we headed north with some mild-to-moderate misgivings.
We had a great time at the lake. I went on a slow and gentle boat ride with Caleb, and he even got to drive the boat -- adorable. That night the adults had a great time laughing and telling stories. I laughed so hard numerous people told me, jokingly, that they thought I'd go into labor.
In the middle of the night, I had to go to the bathroom like always, and I discovered I was still leaking something -- and in significant amounts. I got pretty frightened, considering how far away we were from the hospital. I called the OB office, and Dr. Lambert was on-call. He said it sounded like I had lost my mucus plug (I know that's a gross phrase -- sorry), but the concerning factor was that I'd been leaking it for nearly 24 hours. Since I wasn't having contractions, he told me to sit tight an hour and see what happened.
I started to have contractions in my back -- radiating pain -- definitely not Braxton-Hicks, and I was pretty uneasy. But when I went to the bathroom an hour later, I wasn't leaking anymore (which suggested it was not amniotic fluid -- phew!), and soon my contractions died down. I told Bryan that as soon as it was a reasonable hour, we were going home! He agreed.
In the morning, we got up, breakfasted, said our goodbyes, and headed home just to be safe. We got home around 12:30/1:00, and after lunch (Sonic, as I recall), we all laid down for naps. I was thoroughly exhausted from a terrible night's sleep, and Bryan wasn't much better off. I had called Dr. Lambert around 2:00 to tell him I was leaking fluid again and that we were back in town. He said it sounded like I was definitely threatening labor, and I should lay down, put my feet up, and take it easy.
Once we got up, I told Samuel to go ahead and come because I wanted an August 1st birthday. I had prayed for August 1. So I decided to vaccuum up the little spider webs that were driving me crazy, and I remember patting my belly and saying, "You can come anytime you like now, Samuel." I figured if I didn't start labor by 7:00 pm, I was in trouble because it would be an even birthday. :)
Around 6:00 pm, I was feeling a little yucky. My tummy was unhappy. When we went to put the boys to bed, I had a strong contraction that made me take slow breaths. I decided to lay down while Bry put the boys to bed. Caleb wanted to stay with me, but he went to get ready for bed after much coaxing from Bryan.
I started timing contractions at 7:43 pm, and they were six minutes apart. I got up to smooch the boys goodnight and to tell them Samuel might be coming. At 8:15 Bryan called Colleen to see if she was home. He said he'd call her back in 20 minutes to let her know if she should come, and she said, "That's ridiculous! I'm coming now!" We pulled our stuff together and called Dr. Siegel -- who happened to be filling in for Dr. Lambert for a few hours because Dr. Lambert had a wedding to go to. Dr. Siegel said I should go on in just to be safe, and if it was a false alarm, all my complications warranted it.
So, despite being a bit unsure if I was truly in labor, we decided to head to Northside Hospital. Matthew happened to call to say that he and Ashley were being induced in the morning, and Bryan said, "We think Kathryn might be in labor, so let's call it a race."
Bryan and I hopped in the car aound 8:45 or so. The gas light came on, and we stopped for a few gallons at my request. Contractions continued to be six minutes apart, but they were getting stronger, and I was pretty convinced it was labor. Bryan walked me to admissions at the hospital around 9:15, and he parked the car and came in. At 9:35, we were in a room, and our nurse, Katie, got the run down: he has a heart defect, I have fast labors, I have too much amniotic fluid so I need a sonogram to see if he's head down, and I have Group B Strep. She got straight to work and called Dr. Siegel who said he was 20 minutes away.
Katie hooked me up to the monitors and noticed that Samuel's heart rate was 215 and then 145, back to 212, down to the 140's, etc. She checked me and said I was a good 3-4 cm. At this point my contractions were two minutes apart. In fact, it seemed like as soon as I got to the room, they went from six minutes to two minutes and seriously increased in intensity.
Dr. Siegel got there shortly after 10:00 pm and checked me. I was 7 cm. In about 15-20 minutes, I had progressed 3 cm. Katie said, "Oh my gosh! You weren't kidding about fast labors!" Dr. Siegel broke my water, and I told him we were on the clock -- I wanted to deliver before midnight.
Things got intense quickly. I got in the shower for some relief but had to get out almost as soon as I stepped in because I felt the urge to push. They got me out and on the table very quickly. I was 9 1/2 cm. Two contractions later I was 10 cm and pushing. I think I pushed through two or three contractions, and out came Samuel at 10:42pm. They laid him on my belly pretty blue and then whisked him to the corner with the resuscitation team. Bryan got woozie at this point and had to sit down.
I kept asking if Samuel looked ok, and I would get "yeah, he looks alright" from Bryan who was sitting near the resuscitation team. I asked Dr. Siegel if he looked like he had Down Syndrome, and he went over to check. No, he didn't look like it! Phew! I felt very relieved. The doctors worked and worked on Samuel while Dr. Siegel stitched me up. I was super shaky and remember having a hard time being calm without Samuel in my arms. I felt so empty without my just delivered baby with me and kept saying, "This is so much harder without holding him!" I vividly remembered the minutes after delivering Caleb and Joel and not caring about the stitching and cleaning going on around me because I was enthralled with my newborn son. I longed to have Samuel in my arms.
Eventually the docs brought me Samuel for about one minute of holding -- long enough to snap 3 quick pictures. His breathing was really raspy, and they hurriedly snatched him away and took him up to the NICU. They were admitting him which meant he wouldn't be in our room like we had expected. The summary report was that his heart seemed fine, but his lungs were giving him some trouble. We expected to hear something in a couple of hours. Three hours later, we were still in the dark. We called three times to see if we could come see him yet.
Finally the neonatologist came to our room and told us Samuel had a hard time breathing. He was on a ventilator. They had tried CPAP at 60% (our air is 21% oxygenated), but it wasn't enough. With the ventilator, he was able to breathe 30% oxygenated air. He said the pediatric cardiologist who was on call was still looking at Samuel and would be down soon.
An hour later, Dr. Balfour came in looking very uneasy. He said Samuel has something different from what they expected -- probably Double Outlet Right Ventricle. Before he could tell us what this meant -- what the course of action was, how hopeful, how soon, etc, he was called out of our room because Samuel's heartrate had skyrocketed. So, we were left in the dark once again.
An hour later we called the NICU again, and they said we could finally see him. It had been over five hours and was now around 4:00am. He was BEAUTIFUL! It was wonderful to finally see him. Of course, he was covered in wires, but it was so nice to touch and see him.
Lord, protect our littlest love. Put him in our arms soon. Amen. I dream of holding Samuel. I just can't wait, and I'm not sure I'll put him down once I do finally get to cuddle him. My arms ache for my Samuel.
Birth stats: August 1st, 2009
6 lbs, 13 oz.
18 3/4 inches
10:42 pm
We had a great time at the lake. I went on a slow and gentle boat ride with Caleb, and he even got to drive the boat -- adorable. That night the adults had a great time laughing and telling stories. I laughed so hard numerous people told me, jokingly, that they thought I'd go into labor.
In the middle of the night, I had to go to the bathroom like always, and I discovered I was still leaking something -- and in significant amounts. I got pretty frightened, considering how far away we were from the hospital. I called the OB office, and Dr. Lambert was on-call. He said it sounded like I had lost my mucus plug (I know that's a gross phrase -- sorry), but the concerning factor was that I'd been leaking it for nearly 24 hours. Since I wasn't having contractions, he told me to sit tight an hour and see what happened.
I started to have contractions in my back -- radiating pain -- definitely not Braxton-Hicks, and I was pretty uneasy. But when I went to the bathroom an hour later, I wasn't leaking anymore (which suggested it was not amniotic fluid -- phew!), and soon my contractions died down. I told Bryan that as soon as it was a reasonable hour, we were going home! He agreed.
In the morning, we got up, breakfasted, said our goodbyes, and headed home just to be safe. We got home around 12:30/1:00, and after lunch (Sonic, as I recall), we all laid down for naps. I was thoroughly exhausted from a terrible night's sleep, and Bryan wasn't much better off. I had called Dr. Lambert around 2:00 to tell him I was leaking fluid again and that we were back in town. He said it sounded like I was definitely threatening labor, and I should lay down, put my feet up, and take it easy.
Once we got up, I told Samuel to go ahead and come because I wanted an August 1st birthday. I had prayed for August 1. So I decided to vaccuum up the little spider webs that were driving me crazy, and I remember patting my belly and saying, "You can come anytime you like now, Samuel." I figured if I didn't start labor by 7:00 pm, I was in trouble because it would be an even birthday. :)
Around 6:00 pm, I was feeling a little yucky. My tummy was unhappy. When we went to put the boys to bed, I had a strong contraction that made me take slow breaths. I decided to lay down while Bry put the boys to bed. Caleb wanted to stay with me, but he went to get ready for bed after much coaxing from Bryan.
I started timing contractions at 7:43 pm, and they were six minutes apart. I got up to smooch the boys goodnight and to tell them Samuel might be coming. At 8:15 Bryan called Colleen to see if she was home. He said he'd call her back in 20 minutes to let her know if she should come, and she said, "That's ridiculous! I'm coming now!" We pulled our stuff together and called Dr. Siegel -- who happened to be filling in for Dr. Lambert for a few hours because Dr. Lambert had a wedding to go to. Dr. Siegel said I should go on in just to be safe, and if it was a false alarm, all my complications warranted it.
So, despite being a bit unsure if I was truly in labor, we decided to head to Northside Hospital. Matthew happened to call to say that he and Ashley were being induced in the morning, and Bryan said, "We think Kathryn might be in labor, so let's call it a race."
Bryan and I hopped in the car aound 8:45 or so. The gas light came on, and we stopped for a few gallons at my request. Contractions continued to be six minutes apart, but they were getting stronger, and I was pretty convinced it was labor. Bryan walked me to admissions at the hospital around 9:15, and he parked the car and came in. At 9:35, we were in a room, and our nurse, Katie, got the run down: he has a heart defect, I have fast labors, I have too much amniotic fluid so I need a sonogram to see if he's head down, and I have Group B Strep. She got straight to work and called Dr. Siegel who said he was 20 minutes away.
Katie hooked me up to the monitors and noticed that Samuel's heart rate was 215 and then 145, back to 212, down to the 140's, etc. She checked me and said I was a good 3-4 cm. At this point my contractions were two minutes apart. In fact, it seemed like as soon as I got to the room, they went from six minutes to two minutes and seriously increased in intensity.
Dr. Siegel got there shortly after 10:00 pm and checked me. I was 7 cm. In about 15-20 minutes, I had progressed 3 cm. Katie said, "Oh my gosh! You weren't kidding about fast labors!" Dr. Siegel broke my water, and I told him we were on the clock -- I wanted to deliver before midnight.
Things got intense quickly. I got in the shower for some relief but had to get out almost as soon as I stepped in because I felt the urge to push. They got me out and on the table very quickly. I was 9 1/2 cm. Two contractions later I was 10 cm and pushing. I think I pushed through two or three contractions, and out came Samuel at 10:42pm. They laid him on my belly pretty blue and then whisked him to the corner with the resuscitation team. Bryan got woozie at this point and had to sit down.
I kept asking if Samuel looked ok, and I would get "yeah, he looks alright" from Bryan who was sitting near the resuscitation team. I asked Dr. Siegel if he looked like he had Down Syndrome, and he went over to check. No, he didn't look like it! Phew! I felt very relieved. The doctors worked and worked on Samuel while Dr. Siegel stitched me up. I was super shaky and remember having a hard time being calm without Samuel in my arms. I felt so empty without my just delivered baby with me and kept saying, "This is so much harder without holding him!" I vividly remembered the minutes after delivering Caleb and Joel and not caring about the stitching and cleaning going on around me because I was enthralled with my newborn son. I longed to have Samuel in my arms.
Eventually the docs brought me Samuel for about one minute of holding -- long enough to snap 3 quick pictures. His breathing was really raspy, and they hurriedly snatched him away and took him up to the NICU. They were admitting him which meant he wouldn't be in our room like we had expected. The summary report was that his heart seemed fine, but his lungs were giving him some trouble. We expected to hear something in a couple of hours. Three hours later, we were still in the dark. We called three times to see if we could come see him yet.
Finally the neonatologist came to our room and told us Samuel had a hard time breathing. He was on a ventilator. They had tried CPAP at 60% (our air is 21% oxygenated), but it wasn't enough. With the ventilator, he was able to breathe 30% oxygenated air. He said the pediatric cardiologist who was on call was still looking at Samuel and would be down soon.
An hour later, Dr. Balfour came in looking very uneasy. He said Samuel has something different from what they expected -- probably Double Outlet Right Ventricle. Before he could tell us what this meant -- what the course of action was, how hopeful, how soon, etc, he was called out of our room because Samuel's heartrate had skyrocketed. So, we were left in the dark once again.
An hour later we called the NICU again, and they said we could finally see him. It had been over five hours and was now around 4:00am. He was BEAUTIFUL! It was wonderful to finally see him. Of course, he was covered in wires, but it was so nice to touch and see him.
Lord, protect our littlest love. Put him in our arms soon. Amen. I dream of holding Samuel. I just can't wait, and I'm not sure I'll put him down once I do finally get to cuddle him. My arms ache for my Samuel.
Birth stats: August 1st, 2009
6 lbs, 13 oz.
18 3/4 inches
10:42 pm
Friday, July 30, 2010
A New Birthday Tradition
Today we went to Dr. Videlefsky's office and to Egleston. It is the start of our tradition to honor Samuel's birthday by taking goodies to the people who served us and cared for our son. It was a good trip, and Bryan and I are both really glad we did it. Dr. Videlefsky was kind as ever and sat down with us for a few minutes, asking how we're doing, mentioning how much he was touched by Samuel's memorial service, and asking us about our efforts to have another child. He was compassionate and gracious as always. It was good to see him.
At Egleston we went straight to the CICU with lots of cookies for the staff and a big bowl full of prepackaged munchies for the parents of patients. We got to see some familiar faces and give hugs. One doctor, Shri Deshpande, came up to us and said that just recently another baby was diagnosed with coronary fistulae (something they hadn't seen in a baby before Samuel), and he was in the exact same dock as Samuel was when he was first diagnosed. He said he thought of us.
As soon as we walked through the CICU doors, Caleb headed straight for Samuel's old dock. He was completely honed in on 2112, Samuel's spot. It was clear that he remembered being there. We introduced everyone to him by saying that they took great care of Samuel, and that seemed to really matter to Caleb. When we left the floor, Caleb told Bryan that he felt sad and "tears dripping." He laid his head on Bryan's shoulder and cried a little.
On the way to the hospital, Bryan and I talked about how important we felt like the trip would be for Caleb and Joel. Since they're so young, their memories of Samuel will mostly be from what we tell them and from pictures more than from remembering the actual times they spent with their baby brother. We really wanted today to spark some personal memories for them, to remind them that they really did get to see Samuel and be with him -- that what feels like a vague recollection really, truly did happen. I think the trip did just that -- especially for Caleb. We purposefully visited all the places where they spent time last year: the library, the lobby, the garden, and the gift shop. We let them do all the things they'd done before -- pick a book to read from the library shelves, push the buttons on a huge wall screen in the lobby showing different sea creatures, play hide-and-seek outside in the garden, and check out the cars and trucks in the shop. They had fun being there, and it was familiar to them both.
In the days leading up to today, we had talked to the boys about Egleston and going there, and Joel on more than one occasion said he was excited to go see Samuel. Even on the car ride this morning, he said it. When we addressed it again -- telling him once more that Samuel isn't there; he's in Heaven -- he said, "It wasn't me saying that. It was Mace." Mace was his Star Wars toy he brought in the car. Whenever we asked Joel questions about Samuel and where Samuel is, he always got them right, but clearly something in his mind must not have completely clicked. Thankfully he didn't seem at all distressed that Samuel wasn't at Egleston today.
On the ride home, we asked Caleb and Joel about our time there, and they both said they felt sad at some points. We asked them what they remembered from last year, and they listed off numerous things they could recall. I think it was good for them to feel more connected to their baby brother and to be sure his life was real.
Overall, I think today was the hardest for Bryan. He was visibly having a hard time, and on several occasions I saw him on the verge of tears. But we both think that having a hard time was probably a good thing for him, and he is really happy we went. We're both satisfied with our new tradition, this way of remembering Samuel and blessing others. We count ourselves so blessed to be Samuel's parents, to have had a month with him alive, and to have grown so deeply because of how he touched our lives. We want to share that blessing, and we are grateful for this small way to do that.
Here are some pictures of what we took (and of the mess I made baking it!):
This is the basket we put together for the parents. We wrote a letter to go with it. In case you're interested, here's what it says:
At Egleston we went straight to the CICU with lots of cookies for the staff and a big bowl full of prepackaged munchies for the parents of patients. We got to see some familiar faces and give hugs. One doctor, Shri Deshpande, came up to us and said that just recently another baby was diagnosed with coronary fistulae (something they hadn't seen in a baby before Samuel), and he was in the exact same dock as Samuel was when he was first diagnosed. He said he thought of us.
As soon as we walked through the CICU doors, Caleb headed straight for Samuel's old dock. He was completely honed in on 2112, Samuel's spot. It was clear that he remembered being there. We introduced everyone to him by saying that they took great care of Samuel, and that seemed to really matter to Caleb. When we left the floor, Caleb told Bryan that he felt sad and "tears dripping." He laid his head on Bryan's shoulder and cried a little.
On the way to the hospital, Bryan and I talked about how important we felt like the trip would be for Caleb and Joel. Since they're so young, their memories of Samuel will mostly be from what we tell them and from pictures more than from remembering the actual times they spent with their baby brother. We really wanted today to spark some personal memories for them, to remind them that they really did get to see Samuel and be with him -- that what feels like a vague recollection really, truly did happen. I think the trip did just that -- especially for Caleb. We purposefully visited all the places where they spent time last year: the library, the lobby, the garden, and the gift shop. We let them do all the things they'd done before -- pick a book to read from the library shelves, push the buttons on a huge wall screen in the lobby showing different sea creatures, play hide-and-seek outside in the garden, and check out the cars and trucks in the shop. They had fun being there, and it was familiar to them both.
In the days leading up to today, we had talked to the boys about Egleston and going there, and Joel on more than one occasion said he was excited to go see Samuel. Even on the car ride this morning, he said it. When we addressed it again -- telling him once more that Samuel isn't there; he's in Heaven -- he said, "It wasn't me saying that. It was Mace." Mace was his Star Wars toy he brought in the car. Whenever we asked Joel questions about Samuel and where Samuel is, he always got them right, but clearly something in his mind must not have completely clicked. Thankfully he didn't seem at all distressed that Samuel wasn't at Egleston today.
On the ride home, we asked Caleb and Joel about our time there, and they both said they felt sad at some points. We asked them what they remembered from last year, and they listed off numerous things they could recall. I think it was good for them to feel more connected to their baby brother and to be sure his life was real.
Overall, I think today was the hardest for Bryan. He was visibly having a hard time, and on several occasions I saw him on the verge of tears. But we both think that having a hard time was probably a good thing for him, and he is really happy we went. We're both satisfied with our new tradition, this way of remembering Samuel and blessing others. We count ourselves so blessed to be Samuel's parents, to have had a month with him alive, and to have grown so deeply because of how he touched our lives. We want to share that blessing, and we are grateful for this small way to do that.
Here are some pictures of what we took (and of the mess I made baking it!):
This was around 11:00 am. Caleb was my amazing helper. He really did offer me some incredible assistance!
This was after the heart cookies (seemed appropriate for the cardiac wing) were finally frosted.
All ready to go -- at 10:30 pm.
This is the basket we put together for the parents. We wrote a letter to go with it. In case you're interested, here's what it says:
Dear CICU parents and loved ones,
Last year we spent an agonizing month in the CICU here at Egleston, and we wanted to do something small for those of you who are here now. We know the unbelievable ups and downs of having a child in the CICU, the moments of great hope and the moments of great fear. We know how hard it is to leave your son or daughter for shift change or to grab a few bites to eat in the cafeteria. And we know the long, gut-clenching walk down the hall back to the CICU when you wonder if you're walking into bad news and a crowd of doctors and nurses around your child. Everyone's story is different, of course, and we are praying for you in yours. We pray regularly for the children in the CICU and for their doctors and nurses to have wisdom, vigilance, compassion, and attentiveness. And we pray for you, the parents of those children, who are facing such uncertainty, such powerlessness, and such fear. We pray for you to have peace as you sit by your child's side, for you to be able to sleep soundly at night when your head finally gets to touch a pillow, for your marriages and families to grow closer and stronger through this tribulation, and for you to even experience joy in these days at Egleston. We want you to know that you and your child are being prayed for.
With much care,
Bryan and Kathryn
In loving memory of
Samuel Erik Apinis
August 1, 2009 - August 31, 2009
And here is what we wrote to the CICU staff:
Dear CICU Doctors, Nurses, RT’s, and Staff,
Thank you for what you do everyday. You touch families’ lives in a way no one else can as you care for their children in ways they cannot. You have the chance every day to be a bright spot in a dark road for these families, and so many of you did just that for us last year. Thank you!
We have decided to start an annual tradition celebrating Samuel’s birthday; we will come back to Egleston with goodies for the people who work so hard to give these precious children life. So, in memory of our sweet son and in celebration of what would have been his first birthday, we want to say thank you and give you some cookies from us.
You don’t know how much you’ve blessed us and how we will thank God for you all of our lives.
Many thanks,
Bryan and Kathryn Apinis
Samuel Erik Apinis’s dad and mom
(August 1, 2009-August 31, 2009)
Tuesday, July 27, 2010
I Have the Best.Mom.Ever.
Today my aunt Colleen came over to drop off something from my mom. Mom put together 11 envelopes with money in them to do something fun every day from August 1-August 11, when my mom gets here for a visit. Each envelope has a label on it saying what we should do with it: breakfast or dinner out, Sonic treats, a new toy for the boys, lunch out, some flowers, a Starbucks drink, pancakes out, a treat for Momma, some jelly beans (save the black ones for my mom :) ), a treat for Daddy, and lunch on our way to pick my mom up from the Marta stop. How kind and thoughtful of my mom. I shouldn't be surprised because that's who my mom is, but I am touched and blessed. I think it will be really helpful to have something everyday to look forward to. I am blessed! Thanks, Mom. I love you.
Sunday, July 25, 2010
August Approaching
As we are just a week from would have been Samuel's first birthday, I find myself thinking a lot about this time last year. I remember how on July 20th Bryan and I went on the NICU tour at our hospital, so we could get a glimpse of what to expect in the off-hand chance the doctors had Samuel's diagnosis wrong, and he would need to begin life there. The really funny part of that tour is that though I was 36 weeks pregnant (and measuring 43 weeks), I was pushing Bryan around in a wheelchair! He had hurt his back and just that morning had gotten some pretty heavy meds and shots to enable him to make the tour. I thought it was hilarious to be pushing him around on the tour, but I think he mostly felt emasculated. I know he would much rather have been pushing me. How I wish we had a picture of that day! We got a lot of funny looks from new moms and dads.
On July 21st, I had one of my bi-weekly appointments, and Samuel was not cooperative. He was not moving much, so my OB sent me to my perinatologist for another appointment. There, Samuel was completely uncooperative. He wouldn't move for the world, and my amniotic fluid was up even more. The ultrasound tech later told me that she was pretty scared. She absolutely could not elicit movement from Samuel. So, the doctor sent me to the hospital for overnight observation. We were prepared to meet Samuel 5 1/2 weeks early, which would have been much too early for a heart baby. I had about 3 hours of continual contractions while there, but nothing came of it. And Samuel was quietly moving again. The next morning, after another ultrasound, we were released and relieved to be going home. My OB told us that, in all likelihood, Samuel was going to make his appearance sooner rather than later.
I don't remember much about that next week. I know we continued to take our 2.7 mile hilly walks through the neighborhood, and I know I started praying for an August 1st birthday. I am quirky about numbers and love odd ones. I especially love birthdays on the first or thirty-first. My birthday falls on a first, as does Joel's, and I thought it would be so cool if Samuel's did too. In fact, both Caleb and Joel were born on my preferred birthdates. (They also both came on their due-dates.) I am often amazed that God has humored my quirkiness and given me something as silly and triffling as preferred birthdays. He did it again with Samuel. But I will save his birthday story for later, in case I feel like writing about it.
As a family we've been talking about what to do for Samuel's birthday. Caleb suggested making cards, having a cake, and spending Samuel's would-be birthday money on people in need. That's exactly what Bryan and I had been thinking. Sometime this week we will all shop together to bless others through Samuel's life. We're also planning on going to Egleston as a family on Friday. The boys and I will bake a lot of cookies to take to the doctors and nurses, and we're writing a letter to the CICU parents to go with a basket of prepackaged goodies for them. We will stop and drop off some cookies for Dr. Videlefsky, too. I am looking forward to going, but I am also nervous. We haven't been back since December, and going in the summer will be a pretty major flashback. I think it's a good thing for us to go -- and even wise, but part of me is certainly anxious about it.
Tonight as I was tucking Joel into bed, he asked me, "Momma, do you think Samuel will have a jumpy house birthday party in Heaven?" Joel's birthday party this year was at a Jump Zone with tons of inflatables, and he loved every minute of it. I love that Joel imagines Samuel having a party as fun and wonderful as his was.
Last week Caleb asked me, "Mommy, am I always going to miss Samuel? For my whole life?" I think that question sums up what I've been feeling lately. As we near the one year markers, I don't feel a sense of relief that this first year is nearly behind us. Instead I feel the vastness of a lifetime without Samuel still ahead. I told Bryan I wish I could skip August altogether and go straight to September, but more than having a tough month ahead of us, we have a lifetime of missing Samuel to go. Before Samuel's death, I never longed for Heaven, but now I do. I long to be made whole again, and I long to be with my almost 1 year old. I got choked up today rocking Joel in the glider after his nap -- something he hasn't let me do in a year and a half or more -- thinking that I would have spent this last year rocking Samuel in it if he had been healthy. And then I thought about how if Samuel was alive, I would have a 5 year old, a 3 year old, and a 1 year old. I wish I could say that sentence when introduced to someone new instead of fumbling around and wondering how to handle the situation, instead of acquaintances introducing me as "This is Kathryn. She has two boys" and me feeling a knife in my heart. I wish it was as wonderful as having three boys who are 5, 3, and 1. But that's not our story. And we have a hard month ahead of us. In a week, we will be in August. In a week I will be in the place I have dreaded for 11 1/2 months now. And somehow God will see us through it. I already know He will be faithful to carry us through August. It's a good thing because I definitely couldn't do it on my own.
On July 21st, I had one of my bi-weekly appointments, and Samuel was not cooperative. He was not moving much, so my OB sent me to my perinatologist for another appointment. There, Samuel was completely uncooperative. He wouldn't move for the world, and my amniotic fluid was up even more. The ultrasound tech later told me that she was pretty scared. She absolutely could not elicit movement from Samuel. So, the doctor sent me to the hospital for overnight observation. We were prepared to meet Samuel 5 1/2 weeks early, which would have been much too early for a heart baby. I had about 3 hours of continual contractions while there, but nothing came of it. And Samuel was quietly moving again. The next morning, after another ultrasound, we were released and relieved to be going home. My OB told us that, in all likelihood, Samuel was going to make his appearance sooner rather than later.
I don't remember much about that next week. I know we continued to take our 2.7 mile hilly walks through the neighborhood, and I know I started praying for an August 1st birthday. I am quirky about numbers and love odd ones. I especially love birthdays on the first or thirty-first. My birthday falls on a first, as does Joel's, and I thought it would be so cool if Samuel's did too. In fact, both Caleb and Joel were born on my preferred birthdates. (They also both came on their due-dates.) I am often amazed that God has humored my quirkiness and given me something as silly and triffling as preferred birthdays. He did it again with Samuel. But I will save his birthday story for later, in case I feel like writing about it.
As a family we've been talking about what to do for Samuel's birthday. Caleb suggested making cards, having a cake, and spending Samuel's would-be birthday money on people in need. That's exactly what Bryan and I had been thinking. Sometime this week we will all shop together to bless others through Samuel's life. We're also planning on going to Egleston as a family on Friday. The boys and I will bake a lot of cookies to take to the doctors and nurses, and we're writing a letter to the CICU parents to go with a basket of prepackaged goodies for them. We will stop and drop off some cookies for Dr. Videlefsky, too. I am looking forward to going, but I am also nervous. We haven't been back since December, and going in the summer will be a pretty major flashback. I think it's a good thing for us to go -- and even wise, but part of me is certainly anxious about it.
Tonight as I was tucking Joel into bed, he asked me, "Momma, do you think Samuel will have a jumpy house birthday party in Heaven?" Joel's birthday party this year was at a Jump Zone with tons of inflatables, and he loved every minute of it. I love that Joel imagines Samuel having a party as fun and wonderful as his was.
Last week Caleb asked me, "Mommy, am I always going to miss Samuel? For my whole life?" I think that question sums up what I've been feeling lately. As we near the one year markers, I don't feel a sense of relief that this first year is nearly behind us. Instead I feel the vastness of a lifetime without Samuel still ahead. I told Bryan I wish I could skip August altogether and go straight to September, but more than having a tough month ahead of us, we have a lifetime of missing Samuel to go. Before Samuel's death, I never longed for Heaven, but now I do. I long to be made whole again, and I long to be with my almost 1 year old. I got choked up today rocking Joel in the glider after his nap -- something he hasn't let me do in a year and a half or more -- thinking that I would have spent this last year rocking Samuel in it if he had been healthy. And then I thought about how if Samuel was alive, I would have a 5 year old, a 3 year old, and a 1 year old. I wish I could say that sentence when introduced to someone new instead of fumbling around and wondering how to handle the situation, instead of acquaintances introducing me as "This is Kathryn. She has two boys" and me feeling a knife in my heart. I wish it was as wonderful as having three boys who are 5, 3, and 1. But that's not our story. And we have a hard month ahead of us. In a week, we will be in August. In a week I will be in the place I have dreaded for 11 1/2 months now. And somehow God will see us through it. I already know He will be faithful to carry us through August. It's a good thing because I definitely couldn't do it on my own.
Sunday, July 18, 2010
A Turbulent Week
It's been a hard week for us grief-wise. There have been a lot of factors, but for me the biggest one came Wednesday morning when I found out that I'm not pregnant this month. It was pretty devastating to me even though I had suspected it was the case. That morning I had plans with a friend and her boys, so thankfully the first half of the day passed without too much ache, but once we got home, I cried for several hours straight. I couldn't seem to stop the tears, and they just kept coming and coming. I think I had stored up a lot of hope in the months we were told to wait on getting pregnant, and when my hopes didn't come to fruition right away, a lot of the disappointment I had held at bay came swooping down on me. I kept thinking how very much I miss Samuel, how very much I wish he was here with us and trying to get pregnant with another baby wasn't even on our radar.
A major component of my sorrow is August's ever-growing proximity. Even the day Samuel died, I pictured August 2010, and I imagined myself pregnant. At the time I imagined myself very pregnant -- due in September. As time went by, that picture had to change, but always the tangible hope and comfort of the month was the baby growing in my womb. This week showed me that my picture will not come to pass. I will face Samuel's birthday, two weeks from today, with an empty womb and empty arms. I have never thought another baby would replace Samuel in any way, but it would be new hope, a tangible image of redemption. Knowing that August won't offer that picture of the future was nothing short of devastating.
Honestly, it was a wretched day. I cried sitting on the bed, typing on the computer, tucking my boys in for naps, cleaning the house, making dinner, eating dinner, driving to our counseling session, through our grief counseling, and everywhere in between. It was the worst day I've had in five months.
Since then I've asked myself why I am so deeply sad about not getting pregnant this month. I think the bottom line is that I'm truly scared God's answer isn't just, "Not this month" but, "Not ever." I've learned that God doesn't have to answer "yes" to my pleas for good things. He didn't save Samuel, and He doesn't owe me for that. He doesn't have to make it up to me by blessing us with a healthy child from my womb. If He ever does grant us another baby, it will be pure grace -- an undeserved blessing from His abundant love and care. I can't earn a baby. I can't endure enough heartbreak to tip the scales in my favor. There are no promises of more children for us. God could say no to our requests for another child, and that terrifies me.
I've been revisiting Psalm 86 this past week, and one verse keeps jumping out at me. Verse 12 says, "O Lord Almighty, happy are those who trust in you." I have not been happy in the past week and half as I've feared the onset of my period and then been crushed by its appearance. And I've been asking myself, "Am I trusting God?" I think the answer is yes, but I am not resigned to accepting His answer if it's, "No, Kathryn, I will not give you more healthy children from your womb." I trust Him to be good and faithful and present. I trust Him to give me what I need to face even the worst of outcomes -- even another baby who dies. But I don't want that. And I desperately want more children. I am having a hard time joyfully moving forward into the unknown when what's ahead could be more heartbreak. I will walk whatever road God gives us to travel, but I am having a horribly painful time surrendering my dream of another baby (babies!) to Him. I know He can say no, and I don't want to hear that.
I'm not really sure how to change things, but I know I cannot face an indefinite number of months with this intense of a rollercoaster and this deep of a pit when I don't get pregnant. Something has to change. Something in my heart has to be more willing to lay down my vision of our future. Something in me has to say, "Ok, God. WHATEVER it is that You will, I accept it." I'm not sure how to get there, but I am confident I cannot endure more months like this one without seriously taxing my own well-being and my family's. I covet prayers in this.
And as August approaches, I confess I find myself trembling in my boots. Its dark cloud has already cast a shadow over me, and I'm afraid I'll be sucked into its eddies and stay submerged for the duration of the month. I used to think that once people made it past the first year without a loved one, they could breath a sigh of relief. I would think, "Phew! The first year is over. I'm glad that's behind them. Now life can get easier." How absurd. Now that I am grieving, when I think about our one year anniversaries approaching, I don't feel like a significant amount of time has passed. Samuel still just died. It wasn't yesterday, but it was so recent. And so what if a year is nearly behind us. That just means I still have the rest of my life without him. It's no different than it was 6 months ago. Life is still devoid of Samuel. We are still grieving. It is still hard, so hard.
So, needless to say, it's been a tumultuous week. And I have a feeling harder weeks are yet ahead. Oh, Jesus, hold us close and comfort us as only You can. How we need You!
A major component of my sorrow is August's ever-growing proximity. Even the day Samuel died, I pictured August 2010, and I imagined myself pregnant. At the time I imagined myself very pregnant -- due in September. As time went by, that picture had to change, but always the tangible hope and comfort of the month was the baby growing in my womb. This week showed me that my picture will not come to pass. I will face Samuel's birthday, two weeks from today, with an empty womb and empty arms. I have never thought another baby would replace Samuel in any way, but it would be new hope, a tangible image of redemption. Knowing that August won't offer that picture of the future was nothing short of devastating.
Honestly, it was a wretched day. I cried sitting on the bed, typing on the computer, tucking my boys in for naps, cleaning the house, making dinner, eating dinner, driving to our counseling session, through our grief counseling, and everywhere in between. It was the worst day I've had in five months.
Since then I've asked myself why I am so deeply sad about not getting pregnant this month. I think the bottom line is that I'm truly scared God's answer isn't just, "Not this month" but, "Not ever." I've learned that God doesn't have to answer "yes" to my pleas for good things. He didn't save Samuel, and He doesn't owe me for that. He doesn't have to make it up to me by blessing us with a healthy child from my womb. If He ever does grant us another baby, it will be pure grace -- an undeserved blessing from His abundant love and care. I can't earn a baby. I can't endure enough heartbreak to tip the scales in my favor. There are no promises of more children for us. God could say no to our requests for another child, and that terrifies me.
I've been revisiting Psalm 86 this past week, and one verse keeps jumping out at me. Verse 12 says, "O Lord Almighty, happy are those who trust in you." I have not been happy in the past week and half as I've feared the onset of my period and then been crushed by its appearance. And I've been asking myself, "Am I trusting God?" I think the answer is yes, but I am not resigned to accepting His answer if it's, "No, Kathryn, I will not give you more healthy children from your womb." I trust Him to be good and faithful and present. I trust Him to give me what I need to face even the worst of outcomes -- even another baby who dies. But I don't want that. And I desperately want more children. I am having a hard time joyfully moving forward into the unknown when what's ahead could be more heartbreak. I will walk whatever road God gives us to travel, but I am having a horribly painful time surrendering my dream of another baby (babies!) to Him. I know He can say no, and I don't want to hear that.
I'm not really sure how to change things, but I know I cannot face an indefinite number of months with this intense of a rollercoaster and this deep of a pit when I don't get pregnant. Something has to change. Something in my heart has to be more willing to lay down my vision of our future. Something in me has to say, "Ok, God. WHATEVER it is that You will, I accept it." I'm not sure how to get there, but I am confident I cannot endure more months like this one without seriously taxing my own well-being and my family's. I covet prayers in this.
And as August approaches, I confess I find myself trembling in my boots. Its dark cloud has already cast a shadow over me, and I'm afraid I'll be sucked into its eddies and stay submerged for the duration of the month. I used to think that once people made it past the first year without a loved one, they could breath a sigh of relief. I would think, "Phew! The first year is over. I'm glad that's behind them. Now life can get easier." How absurd. Now that I am grieving, when I think about our one year anniversaries approaching, I don't feel like a significant amount of time has passed. Samuel still just died. It wasn't yesterday, but it was so recent. And so what if a year is nearly behind us. That just means I still have the rest of my life without him. It's no different than it was 6 months ago. Life is still devoid of Samuel. We are still grieving. It is still hard, so hard.
So, needless to say, it's been a tumultuous week. And I have a feeling harder weeks are yet ahead. Oh, Jesus, hold us close and comfort us as only You can. How we need You!
Monday, July 12, 2010
An Angel Story
A couple of weeks ago, the boys and I went to see my friend, Candice, and her daughter, Susan. We met in the CICU at Egleston last August. Susan has hypoplastic left heart syndrome (HLHS) and has had numerous surgeries in her two and half years of life. When our paths first crossed, Susan was having the final surgery (called the Fontan) in a series of three heart surgeries. Susan's bed was next to Samuel's for several days, and I think we first spoke to Candice and Mike in the hallway outside the showers late one night. Though we'd already been at the hospital for 3 weeks, we were newbies, and Candice and Mike were veterans. We became friends over the week our time at Egleston overlapped. Susan did quite well -- despite a few scares -- while Samuel was in the hospital, and a few days after we met, she moved out of the CICU and into Step-Down, where patients in less critical condition stay. Because parents can sleep in Step-Down rooms with their child, we didn't see Mike and Candice for a few days.
The night before Samuel died, a nurse came to our CICU dock and said that Susan was back in the CICU, and her parents wanted us to know. I immediately walked down to their dock, gave hugs, and talked for a little while. By the next morning, Susan was back in Step-Down, and I didn't see her or her parents again until February.
When I went to Candice's house a couple of weeks ago, she showed me a book that Susan loves to read. It's about guardian angels who surround and protect a baby throughout the day. In the book, the angels are babies too. After I read the story, Candice told me that she's had something to share with me since August, but she didn't want to do it over the phone.
Before Susan's Fontan procedure, she had worked hard to gain a lot of abilities like walking, sucking, and talking. Her parents didn't know how long it would take to regain those after surgery. One morning in Step-Down, Susan woke up, looked over her shoulder, and said, "Hi Baby!" -- her first words since before surgery. Candice looked where Susan's eyes were focused and didn't see anything, but she was grateful that Susan had spoken. A few days later, Candice learned that Samuel had died the very morning Susan woke up and said, "Hi Baby."
When Candice told me the story, I started crying immediately. I've only told the story once, and that was to Bryan. I could barely get the story out, I was crying so much. I don't know how angels work or what exactly happens upon death, but the thought of Susan seeing Samuel and greeting him with a smile is precious to me. At the moment I can barely see the computer screen through my tears. Far be it for me to say Susan didn't see Samuel on his way to Heaven. And Susan's picture of Samuel, of a baby who would elicit smiles and warrant a greeting, is so far better than the picture I will always carry of Samuel at 9:30 on Monday morning, August 31. The Samuel I held was bloated, distorted, decaying, and so clearly not the real Samuel. My attachment to his body ceased almost the moment he died. He was no longer my Samuel. It was utterly clear to me that he, the soul of my son, was no longer there. I was holding an empty shell. I love the thought that the real Samuel, the beautiful soul of my baby, was visible to another baby in the hospital, and that he was already looking whole and restored and redeemed.
When Candice showed me Susan's guardian angel book, she pointed out the baby angel that Susan always points to and says, "Baby." It's a little boy with light brown hair and brown eyes. I looked at him and thought, "Samuel could look like that. I wonder if that's what he would look like now, at 11 months old." Even that little illustrated picture of a guardian angel baby was a gift -- a little picture of what my Samuel would maybe look like. I am grateful for the little gifts along this journey of grief -- for the moments of hope, the glimpses of clarity, the breaths of joy, and the pictures of what might be. And I'm glad that there is so much we don't know and can't explain, for the mysteries of God that make us pause in wonder and adoration. I am thankful for Susan's, "Hi Baby."
The night before Samuel died, a nurse came to our CICU dock and said that Susan was back in the CICU, and her parents wanted us to know. I immediately walked down to their dock, gave hugs, and talked for a little while. By the next morning, Susan was back in Step-Down, and I didn't see her or her parents again until February.
When I went to Candice's house a couple of weeks ago, she showed me a book that Susan loves to read. It's about guardian angels who surround and protect a baby throughout the day. In the book, the angels are babies too. After I read the story, Candice told me that she's had something to share with me since August, but she didn't want to do it over the phone.
Before Susan's Fontan procedure, she had worked hard to gain a lot of abilities like walking, sucking, and talking. Her parents didn't know how long it would take to regain those after surgery. One morning in Step-Down, Susan woke up, looked over her shoulder, and said, "Hi Baby!" -- her first words since before surgery. Candice looked where Susan's eyes were focused and didn't see anything, but she was grateful that Susan had spoken. A few days later, Candice learned that Samuel had died the very morning Susan woke up and said, "Hi Baby."
When Candice told me the story, I started crying immediately. I've only told the story once, and that was to Bryan. I could barely get the story out, I was crying so much. I don't know how angels work or what exactly happens upon death, but the thought of Susan seeing Samuel and greeting him with a smile is precious to me. At the moment I can barely see the computer screen through my tears. Far be it for me to say Susan didn't see Samuel on his way to Heaven. And Susan's picture of Samuel, of a baby who would elicit smiles and warrant a greeting, is so far better than the picture I will always carry of Samuel at 9:30 on Monday morning, August 31. The Samuel I held was bloated, distorted, decaying, and so clearly not the real Samuel. My attachment to his body ceased almost the moment he died. He was no longer my Samuel. It was utterly clear to me that he, the soul of my son, was no longer there. I was holding an empty shell. I love the thought that the real Samuel, the beautiful soul of my baby, was visible to another baby in the hospital, and that he was already looking whole and restored and redeemed.
When Candice showed me Susan's guardian angel book, she pointed out the baby angel that Susan always points to and says, "Baby." It's a little boy with light brown hair and brown eyes. I looked at him and thought, "Samuel could look like that. I wonder if that's what he would look like now, at 11 months old." Even that little illustrated picture of a guardian angel baby was a gift -- a little picture of what my Samuel would maybe look like. I am grateful for the little gifts along this journey of grief -- for the moments of hope, the glimpses of clarity, the breaths of joy, and the pictures of what might be. And I'm glad that there is so much we don't know and can't explain, for the mysteries of God that make us pause in wonder and adoration. I am thankful for Susan's, "Hi Baby."
Wednesday, July 7, 2010
Shells and Souls
After I went to the cemetary with Caleb and Joel last week, and Joel expressed so much confusion about Samuel's body being buried but his soul being in Heaven, I decided to ask Judy, our grief counselor, for some wisdom. That was a good decision. She recommended we use a shelled peanut to help explain it.
So, the next night Bryan and I took Joel to eat at 5 Guys Burgers and Fries because they have bulk peanuts there. We got one of the peanuts (after Joel has already consumed an inordinate amount of them) and gave it to Joel. We told him to look at it and asked him if you eat the shell. He said, "No. It's yucky." We explained that the peanut shell is like our bodies. It's the outside of us, but inside is the really wonderful part, the part that really matters. We had him break open the shell and look inside and said that the inside of the peanut, the yummy part, is like our souls. It's the part of us that is precious. Our soul is the part of us that loves, laughs, grieves, rejoices, and feels. The shell, our bodies, is what dies. But it's just the part that covers our peanut, our souls. Our soul doesn't die. We put the shell in Joel's hand and said, "This part of Samuel, his body, is what's buried under the dirt in the white box." Then we put the peanut in his hand, "But this part, Samuel's soul, the really wonderful part of Samuel, is what is in Heaven with God and Jesus." He seemed to really get it. When we asked him questions about it, he was able to answer and seemed happy with our explanation. A few days later I went through it with Caleb too. He smiled through the explanation and seemed to appreciate the visual demonstration of Samuel's body and soul.
I am grateful for Judy's wisdom and counsel. I am so thankful for support in this season of our lives. There are so many things about grief that I don't understand, that I don't know how to approach or explain, and I am thankful for Judy's knowledge and help. And I am thankful for our church that gives us money to go to counseling. We are blessed indeed. Thank you, Jesus, for the care we have as we grieve Samuel and for grieving with us and we miss our baby boy.
So, the next night Bryan and I took Joel to eat at 5 Guys Burgers and Fries because they have bulk peanuts there. We got one of the peanuts (after Joel has already consumed an inordinate amount of them) and gave it to Joel. We told him to look at it and asked him if you eat the shell. He said, "No. It's yucky." We explained that the peanut shell is like our bodies. It's the outside of us, but inside is the really wonderful part, the part that really matters. We had him break open the shell and look inside and said that the inside of the peanut, the yummy part, is like our souls. It's the part of us that is precious. Our soul is the part of us that loves, laughs, grieves, rejoices, and feels. The shell, our bodies, is what dies. But it's just the part that covers our peanut, our souls. Our soul doesn't die. We put the shell in Joel's hand and said, "This part of Samuel, his body, is what's buried under the dirt in the white box." Then we put the peanut in his hand, "But this part, Samuel's soul, the really wonderful part of Samuel, is what is in Heaven with God and Jesus." He seemed to really get it. When we asked him questions about it, he was able to answer and seemed happy with our explanation. A few days later I went through it with Caleb too. He smiled through the explanation and seemed to appreciate the visual demonstration of Samuel's body and soul.
I am grateful for Judy's wisdom and counsel. I am so thankful for support in this season of our lives. There are so many things about grief that I don't understand, that I don't know how to approach or explain, and I am thankful for Judy's knowledge and help. And I am thankful for our church that gives us money to go to counseling. We are blessed indeed. Thank you, Jesus, for the care we have as we grieve Samuel and for grieving with us and we miss our baby boy.
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