Into the Arms of
Jesus
Wednesday, March 20,
2013 1:00 PM CDT
I know I stopped writing rather
abruptly but my intent was not to leave you hanging. I had started to write
about our last day and hours nearly a week ago but wasn’t able to finish it.
I’m going to try to do so now.
"My thoughts are nothing like your thoughts," says the LORD. "And my ways are far beyond anything you could imagine.” Isaiah 55:8
Obviously, if you read my journal entry from Sunday, March 11, you know that our perspective of what would bring God the most glory was obviously not the same as God’s. So in our intense grief, we are trusting that his ways are in fact “far beyond anything we could imagine” though we may never, in this lifetime, come to understand them. I can tell you one thing- a place that has always seemed a bit like a concept has suddenly become very personal and real. Prior to this, I always wanted to go to heaven and looked forward to meeting Jesus face-to-face, but to be honest, the idea of “standing around singing for the rest of eternity” never has appealed much to me (even though I love to sing☺). I cannot tell you what heaven actually looks like, and even if some of us think we have an idea, I doubt that any of us here on earth really have an inkling of an idea what it looks like. I do know that it is the most spectacular place we could ever imagine or experience. And as of this moment, the most spectacular thing I could experience, is entering the gates of heaven and seeing Benji walking with Jesus until he sees me; then running painlessly toward me (without the slightest bit of breathlessness) to greet me, with a body void of one scar, one bruise, one cut or other mark of pain. One day I will go there, but now, I not only want to go, I have a longing to get there. And, I don’t believe I will get there because of anything I have ever done- (I could NEVER, in my wildest dreams, EVER do enough good things to get me there because Jesus/God is the standard, which is perfection). I will go there someday because Jesus took the punishment I deserved when he died on the cross; and I have accepted that same free gift of salvation that Benji did; this is what has reserved a place in heaven for me, right next to Benji and I am looking forward to it! He was and is “inChrist”.
I posted Sunday night’s CB journal entry around 3:00 in the morning and I had been describing Benji’s restlessness to you; that only got worse as the night wore on. It was about 3:00 a.m., that I decided I needed to call Allen to tell him I wasn’t sure how much more time we had with Benji and that if he still wanted to spend some time with him; he may want to come now. I KNEW Benji was VERY sick and in a different way than he had been in the past and I believe God led me to do something that was completely out of the ordinary. (Typically, the one who slept at the apartment didn’t come in the next day till at least noon and we really tried to respect each other’s time away from the hospital.) Allen said he would come over and arrived by 4:00; three hours later Benji was intubated and never spoke to us again after that.
When Allen arrived, I was exhausted and weary from Benji’s extreme restlessness and so he took over while I laid down and tried to sleep a little. During the time from then until intubation, Benji’s ammonia continued to climb and his misery, pain and restlessness got steadily worse. One good thing through all this was that as far as we know, he recognized us up to the end, even though as the night wore on he appeared to have some more jumbled thinking. However, when we kissed him and told him we loved him just before we left the room when they were ready to intubate- though he was sitting up, he didn’t respond.
At 5:00 a.m. (CT), I sent out the following text to some family,
“Things have not gone very well overnight. Benji’s ammonia is back up to 159. He is VERY sick & very restless... Hopefully we'll be able to tell better by morning which way we're going but we really don't know how much longer he can hang on”.
It was at this time that my parent decided to drive down on Monday and after speaking with Aaron and Cory, we decided they would come with Grandma and Grandpa. Tyler, however was in Florida with some friends, so we told him to hang in there for now and we’d let him know if we felt he needed to come.
Around 7:00 a.m., Dr. Linn, who has had quite a bit of history with Benji, came into the room. We were very glad to see him because we’d had a new doctor over the weekend and as sick as Benji was, it felt really good to see a doctor that knew him well! It didn’t take him long to see that Benji didn’t look good and after some discussion with some other doctors, came back into the room to tell us that they felt it was time to intubate Benji. We had been told the day prior that there was a good chance this could happen soon, so we weren’t surprised. In fact, from our past experiences, we felt a sense of relief. Previously, being intubated was what Benji appeared to have needed in order for his body to recover from whatever the current issue was; and Dr. Linn told us he felt intubating would again give his body more resources to fight off the ammonia and other issues he was having. Ahhhh, a glimmer of renewed hope!
As I said, Allen and I kissed Benji and left the room to sit in the parent’s lounge during the intubation. There, despite the glimmer of hope we had, we both knew Benji was in very bad shape and we spent much of that time crying and praying. We were so happy when Dr. Spanella came to tell us that they were finished and Benji was doing great! We returned to the room and awaited Benji waking up. Based on his recent experiences with fentanyl, we weren’t surprised that it took several hours to wake up; but when he began to awake, he was quite fidgety and began pulling at his covers. When asked if he was hot, he nodded yes. Because of his fidgeting, he was given some adivan and he soon fell back to sleep; little did we suspect that nod was the last time Benji would ever communicate with us.
While Benji was sleeping, I called the liver transplant coordinator, wanting to see what was happening on the list and wondering if being on the vent qualified Benji to be moved higher on the list. It was at that time that I discovered Benji had been upgraded to a status 1B on Friday. The coordinator was unfamiliar with this process and could only tell me that the surgeon had told her on Friday she should classify him as that and so she did. I immediately got online and started doing some research. What I discovered again gave me some fresh hope but also caused concern. I discovered that being qualified 1A or 1B immediately put you to the top of the list regionally. The way the system typically works is, if there is are one or more “matches” in a local hospital, the person with the highest MELD score will receive the offer; if there is no match locally, it then goes to the closest match/highest MELD score in the region. St. Louis is in region 8, which includes MO, KS, IA, NE, WY and part or all of CO. If there is a 1A or 1B candidate in the region, all matching donor organs are first offered to these candidates, before going to the highest MELD score locally. According to what I read, at any given time, there are fewer than 10 people listed nationally, in the 1A or 1B category for liver transplant, My thoughts when reading this? “Yessss! Maybe now, Benji can get his liver TODAY!” The other side of this coin came when I read that in order to be listed 1A or 1B, the life expectancy is less than seven days. No one had mentioned that to us in regard to Benji but I thought I might have to ask some questions later on.
In the afternoon, they took Benji to get a full body CT scan. He was still sleeping (after the adivan) when they took him but I wasn’t really concerned because I expected him to awake again and the main thing we’d discussed with the docs was that high ammonia levels could cause swelling in the brain, which would typically causes disorientation. Benji had been very oriented or orient-able nearly the entire night. However, the look on Dr. Spinella’s face when he walked into the room after the CT scan was my first clue it wasn’t good. He told me we needed to have an immediate meeting in the conference room with all the docs. My first question was, “Is it bad?” He reluctantly told me yes but that we needed to meet in the conference room with all the docs to discuss it. I got up to go with him but on the way out of the room I got a couple more questions asked and answered. “Does he have swelling on the brain?”- “No”. “Is he off the list?” – “Yes.” (My heart dropped to my toes!) Allen wasn’t in the room right at that moment but as I was walking out, he came to the door. I told him the news as we walked arm-in-arm towards the conference room, where we knew more horrible news awaited us. It was there we were told that all or most of Benji’s organs were now so badly damaged that transplant was no longer possible. The dysfunctional liver had caused the damage to the other organs. The doctors were all devastated to have to tell us this, but they told us at that time that he might only have 2 to 3 days to live. We asked if they thought he would wake up again and could be taken off the vent so that we could say our goodbyes before he goes. They said that was their goal, but they couldn’t say for sure. They also said if we have family or friends who want to see/talk to him yet, they should probably get there yet Monday night or by Tuesday morning.
It was amazing how God’s grace again covered us and gave us strength in that moment; while this news was a kick in the gut and the worst news we could possibly have gotten and we were devastated and heartbroken; we were calm. I wasn’t hysterical nor did I feel the desperation I had felt when I thought Benji wasn’t going to get listed for liver transplant. We knew we had reached the end of the line and unless God chose to perform some incredible miracle soon, our time with Benji was critically short. (As I’m writing this a week later, I find myself feeling way more anxious then I was then and wonder how in the world I didn’t fall apart! I believe I know- it was because at that moment, God poured out his grace on us- and the grace he gave us to deal with that moment is not the kind we need today. Of course, we are relying heavily on his grace now, but I believe from day to day, he only gives us what we need at that moment. This is why it looks bigger now than it did at the time.) By now, it was 5:30 (St. Louis time), and since we had been given all the crucial information we needed at that moment, when the doctors opened it up for questions, I asked if it would be okay if we came back to them later if we had questions. We felt it was critical we get on the phone with family to make sure they could get there in time, if they wanted to come. Fortunately, Grandma, Grandpa, Dale, Aaron and Cory were only about a half hour away and we decided to wait to tell them until they got there. Tyler was our biggest concern- how quickly could we get him there from Florida. I called Tyler to tell him and Allen called Sylvan to ask him to see if he could get Tyler a flight out ASAP. I find it quite miraculous that within two hours of that phone call, Tyler was boarding a plane in Tampa, Florida; and despite having to fly through Atlanta, he arrived in St. Louis 5 ½ hours later. Thank you Lord for allowing Tyler to get there so quickly!
My brother Jerry and his family had already been planning to come down Monday evening, before we got the news, so they were already on their way when they found out. I know that most of both of our families would have liked to come, but not all were able to; the ones that were able to, followed each other down and arrived about 2:00 a.m. on Tuesday. It was Sylvan and Connie, Allen’s sister Rose, my sister Rose, her husband Jason and their family, and my brother Jim, his wife Shirley and daughter.
From the moment we heard the news, I wanted to spend every minute I still had with Benji- we all did. Once Tyler arrived, Allen, the three boys and I never left the room for any length of time until he was gone. Although Benji was not responding in any way, we encouraged everyone to speak to him as if he could hear us, and I sat down by his bed and began reading “Jesus Calling” to him again; stroking his head while I did so. Every moment was so special! At one point I had thought that some time, when the room cleared, I was going to climb into bed with Benji, and just hold him. I was so glad when one of the nurses asked if I’d like to crawl into bed with him, I said I absolutely would so she and a couple other nurses slid Benji over and got all of his tubes and wires out of the way, so I could get in. It turned out we all wanted to do that- Allen, the boys and I, and we each took our turn crawling into bed with him to get close to him and tell him how much we love him. For about the last 1 to 1 ½ hours of his life, I was in bed with him, up till just a few minutes before he went to be with Jesus. I never would have thought a couple days prior to this, that I would be telling my son to take Jesus’ hand and go with him when Jesus comes for him; but this is what I whispered to him numerous times throughout that night. I encouraged him not to be afraid and told him he could trust Jesus. I loved some of the things I was able to read him from “Jesus Calling” again. There were many comforting passages in there.
Once everyone had arrived, we all went into the room with Benji to sing and say our goodbyes. Once again, we sang Great is the Faithfulness and When Peace Like a River. These were not particularly Benji’s favorite songs; it’s just that the first time he had gotten so sick from the ammonia, I had sung to him in an attempt to calm his extreme restlessness. At that time, it seemed to be the only thing that soothed him. Because of his altered state of mind during that time, he didn’t recall the singing later; however, after I read to him my Caringbridge journal entry from that night, from that point on whenever he began to feel anxious, he would ask me to sing; these were the first songs I would sing. They did seem to soothe him. (If you’ve read my entry following his second bout with respiratory failure- from I think January 25, you may recall how he had conveyed to me that he wanted me to sing to him. Because he had been re-intubated he couldn’t speak, so he used his hands to pantomime a choir director leading a choir. I thought it was so cute!)☺ These hymns and are now so precious to me and will always hold a special place in my heart!
Benji never woke from his coma throughout the night, and he took his last breath at 7:30 a.m. Tuesday morning. He went in the same way most of us probably would like to go- he simply went to sleep and never woke up. At that moment, we were ready to let him go; his last ammonia level was up to 415 and he was so sick and had been so miserable. Many of us were there with him when he left this world, and it was very comforting for us to have so many family members with us at that moment.
If prior to this I had been asked if I would want to help bathe Benji’s body after he died, I think I would have said no. However, once Benji soul had left his body, the nurses asked if I would like to help bathe him and I said I did; suddenly it just seemed like a natural thing for me to do. I guess it felt like this was my final act of love for Benji and by helping to clean him up and prepare his body for others to view, I was “finishing” my job. It felt so right to remove all those bandages from his body and wash the adhesives and other things that had been so hard to wash off before, because his skin was so tender. It felt right to brush his teeth that we hadn’t been able to brush for so long and wash his hair. And I was able to lotion his arms and hands that had become so scaly and dry. I was able to put a real shirt on him and a real pair of pants.
(He’d been wearing partial shirts that I had created so his upper half didn’t need to be totally unclothed. Because of lines and ports and needles and wounds and leaking scars, etc, etc, he wasn’t able to wear a full shirt. So, I bought a few shirts for a couple bucks a piece and cut the bodies out of them, leaving the necks and sleeves attached. I had had to cut pants down the outside of the right leg- from the waistband to under the knee, so one of his IVs could be accessed. I had closed the pants with a large snap. One that I had cut was a pair of CCS sweats (from his school), which he really liked. His response when he saw I was going to cut them was to tell me he didn’t want me to use that pair; I told him it was ok, I would get him new ones later. It is heartbreaking to think that I won’t need to do that now!)
As I write this, I can scarcely believe what I just wrote; it is still all just so surreal! Benji is actually dead!?!? He’s never coming back?!?! Last week, while going through pictures to use for the viewing and memorial service, the pain I felt when looking at the pictures of Benji when he felt so much better, was indescribable! Seriously, I do not have words to describe that kind of pain. That pain is just as intense now, though it is also laced with joy and laughter at times, and an understanding that now that Benji is gone, we could never wish him back! I know we have a lot of very difficult days ahead of us and despite the fact that I will continue to trust God whether it makes sense to me or not, I do ask him sometimes what in the world he was thinking! (Yes, I ask him that and I’m quite sure he’s able to handle my weak moments and questions.) In the end, I really don’t have any expectation of ever understanding what God was thinking, because as Isaiah 55:8 says, his ways are far beyond anything I could imagine…. So, we continue on, hour by hour, day by day, resting (most of the time) in the fact that though we will never understand, there is a good purpose for this, and we will continue to walk in total dependence on him to carry us through the most painful times. We won’t be able to do it alone!
Quite a few of you have asked if I’m going to continue journaling here; I’m not sure…. I do plan on writing again regarding more of what has happened over the past week and sharing my thoughts about that and the memorial service; however, after that we’ll have to see where God leads me.
Until next time…???
What “next time”? The future looks like it spreads out before me like a desert; barren and empty- nothing to write about. However, until whatever that “next time” is, I know we’ll badly need your prayers! We believe the worst is still to come and it would be so incredibly difficult to walk this alone! I know, from the way you have supported us so overwhelming up to this point that you will continue to keep us in your prayers. God bless you all for your diligence in prayer! Love to you all!!!
Oh, and I apologize to any of you who tried to stream the memorial service live online!! Due to technical difficulties, they were not able to do it. :(
"My thoughts are nothing like your thoughts," says the LORD. "And my ways are far beyond anything you could imagine.” Isaiah 55:8
Obviously, if you read my journal entry from Sunday, March 11, you know that our perspective of what would bring God the most glory was obviously not the same as God’s. So in our intense grief, we are trusting that his ways are in fact “far beyond anything we could imagine” though we may never, in this lifetime, come to understand them. I can tell you one thing- a place that has always seemed a bit like a concept has suddenly become very personal and real. Prior to this, I always wanted to go to heaven and looked forward to meeting Jesus face-to-face, but to be honest, the idea of “standing around singing for the rest of eternity” never has appealed much to me (even though I love to sing☺). I cannot tell you what heaven actually looks like, and even if some of us think we have an idea, I doubt that any of us here on earth really have an inkling of an idea what it looks like. I do know that it is the most spectacular place we could ever imagine or experience. And as of this moment, the most spectacular thing I could experience, is entering the gates of heaven and seeing Benji walking with Jesus until he sees me; then running painlessly toward me (without the slightest bit of breathlessness) to greet me, with a body void of one scar, one bruise, one cut or other mark of pain. One day I will go there, but now, I not only want to go, I have a longing to get there. And, I don’t believe I will get there because of anything I have ever done- (I could NEVER, in my wildest dreams, EVER do enough good things to get me there because Jesus/God is the standard, which is perfection). I will go there someday because Jesus took the punishment I deserved when he died on the cross; and I have accepted that same free gift of salvation that Benji did; this is what has reserved a place in heaven for me, right next to Benji and I am looking forward to it! He was and is “inChrist”.
I posted Sunday night’s CB journal entry around 3:00 in the morning and I had been describing Benji’s restlessness to you; that only got worse as the night wore on. It was about 3:00 a.m., that I decided I needed to call Allen to tell him I wasn’t sure how much more time we had with Benji and that if he still wanted to spend some time with him; he may want to come now. I KNEW Benji was VERY sick and in a different way than he had been in the past and I believe God led me to do something that was completely out of the ordinary. (Typically, the one who slept at the apartment didn’t come in the next day till at least noon and we really tried to respect each other’s time away from the hospital.) Allen said he would come over and arrived by 4:00; three hours later Benji was intubated and never spoke to us again after that.
When Allen arrived, I was exhausted and weary from Benji’s extreme restlessness and so he took over while I laid down and tried to sleep a little. During the time from then until intubation, Benji’s ammonia continued to climb and his misery, pain and restlessness got steadily worse. One good thing through all this was that as far as we know, he recognized us up to the end, even though as the night wore on he appeared to have some more jumbled thinking. However, when we kissed him and told him we loved him just before we left the room when they were ready to intubate- though he was sitting up, he didn’t respond.
At 5:00 a.m. (CT), I sent out the following text to some family,
“Things have not gone very well overnight. Benji’s ammonia is back up to 159. He is VERY sick & very restless... Hopefully we'll be able to tell better by morning which way we're going but we really don't know how much longer he can hang on”.
It was at this time that my parent decided to drive down on Monday and after speaking with Aaron and Cory, we decided they would come with Grandma and Grandpa. Tyler, however was in Florida with some friends, so we told him to hang in there for now and we’d let him know if we felt he needed to come.
Around 7:00 a.m., Dr. Linn, who has had quite a bit of history with Benji, came into the room. We were very glad to see him because we’d had a new doctor over the weekend and as sick as Benji was, it felt really good to see a doctor that knew him well! It didn’t take him long to see that Benji didn’t look good and after some discussion with some other doctors, came back into the room to tell us that they felt it was time to intubate Benji. We had been told the day prior that there was a good chance this could happen soon, so we weren’t surprised. In fact, from our past experiences, we felt a sense of relief. Previously, being intubated was what Benji appeared to have needed in order for his body to recover from whatever the current issue was; and Dr. Linn told us he felt intubating would again give his body more resources to fight off the ammonia and other issues he was having. Ahhhh, a glimmer of renewed hope!
As I said, Allen and I kissed Benji and left the room to sit in the parent’s lounge during the intubation. There, despite the glimmer of hope we had, we both knew Benji was in very bad shape and we spent much of that time crying and praying. We were so happy when Dr. Spanella came to tell us that they were finished and Benji was doing great! We returned to the room and awaited Benji waking up. Based on his recent experiences with fentanyl, we weren’t surprised that it took several hours to wake up; but when he began to awake, he was quite fidgety and began pulling at his covers. When asked if he was hot, he nodded yes. Because of his fidgeting, he was given some adivan and he soon fell back to sleep; little did we suspect that nod was the last time Benji would ever communicate with us.
While Benji was sleeping, I called the liver transplant coordinator, wanting to see what was happening on the list and wondering if being on the vent qualified Benji to be moved higher on the list. It was at that time that I discovered Benji had been upgraded to a status 1B on Friday. The coordinator was unfamiliar with this process and could only tell me that the surgeon had told her on Friday she should classify him as that and so she did. I immediately got online and started doing some research. What I discovered again gave me some fresh hope but also caused concern. I discovered that being qualified 1A or 1B immediately put you to the top of the list regionally. The way the system typically works is, if there is are one or more “matches” in a local hospital, the person with the highest MELD score will receive the offer; if there is no match locally, it then goes to the closest match/highest MELD score in the region. St. Louis is in region 8, which includes MO, KS, IA, NE, WY and part or all of CO. If there is a 1A or 1B candidate in the region, all matching donor organs are first offered to these candidates, before going to the highest MELD score locally. According to what I read, at any given time, there are fewer than 10 people listed nationally, in the 1A or 1B category for liver transplant, My thoughts when reading this? “Yessss! Maybe now, Benji can get his liver TODAY!” The other side of this coin came when I read that in order to be listed 1A or 1B, the life expectancy is less than seven days. No one had mentioned that to us in regard to Benji but I thought I might have to ask some questions later on.
In the afternoon, they took Benji to get a full body CT scan. He was still sleeping (after the adivan) when they took him but I wasn’t really concerned because I expected him to awake again and the main thing we’d discussed with the docs was that high ammonia levels could cause swelling in the brain, which would typically causes disorientation. Benji had been very oriented or orient-able nearly the entire night. However, the look on Dr. Spinella’s face when he walked into the room after the CT scan was my first clue it wasn’t good. He told me we needed to have an immediate meeting in the conference room with all the docs. My first question was, “Is it bad?” He reluctantly told me yes but that we needed to meet in the conference room with all the docs to discuss it. I got up to go with him but on the way out of the room I got a couple more questions asked and answered. “Does he have swelling on the brain?”- “No”. “Is he off the list?” – “Yes.” (My heart dropped to my toes!) Allen wasn’t in the room right at that moment but as I was walking out, he came to the door. I told him the news as we walked arm-in-arm towards the conference room, where we knew more horrible news awaited us. It was there we were told that all or most of Benji’s organs were now so badly damaged that transplant was no longer possible. The dysfunctional liver had caused the damage to the other organs. The doctors were all devastated to have to tell us this, but they told us at that time that he might only have 2 to 3 days to live. We asked if they thought he would wake up again and could be taken off the vent so that we could say our goodbyes before he goes. They said that was their goal, but they couldn’t say for sure. They also said if we have family or friends who want to see/talk to him yet, they should probably get there yet Monday night or by Tuesday morning.
It was amazing how God’s grace again covered us and gave us strength in that moment; while this news was a kick in the gut and the worst news we could possibly have gotten and we were devastated and heartbroken; we were calm. I wasn’t hysterical nor did I feel the desperation I had felt when I thought Benji wasn’t going to get listed for liver transplant. We knew we had reached the end of the line and unless God chose to perform some incredible miracle soon, our time with Benji was critically short. (As I’m writing this a week later, I find myself feeling way more anxious then I was then and wonder how in the world I didn’t fall apart! I believe I know- it was because at that moment, God poured out his grace on us- and the grace he gave us to deal with that moment is not the kind we need today. Of course, we are relying heavily on his grace now, but I believe from day to day, he only gives us what we need at that moment. This is why it looks bigger now than it did at the time.) By now, it was 5:30 (St. Louis time), and since we had been given all the crucial information we needed at that moment, when the doctors opened it up for questions, I asked if it would be okay if we came back to them later if we had questions. We felt it was critical we get on the phone with family to make sure they could get there in time, if they wanted to come. Fortunately, Grandma, Grandpa, Dale, Aaron and Cory were only about a half hour away and we decided to wait to tell them until they got there. Tyler was our biggest concern- how quickly could we get him there from Florida. I called Tyler to tell him and Allen called Sylvan to ask him to see if he could get Tyler a flight out ASAP. I find it quite miraculous that within two hours of that phone call, Tyler was boarding a plane in Tampa, Florida; and despite having to fly through Atlanta, he arrived in St. Louis 5 ½ hours later. Thank you Lord for allowing Tyler to get there so quickly!
My brother Jerry and his family had already been planning to come down Monday evening, before we got the news, so they were already on their way when they found out. I know that most of both of our families would have liked to come, but not all were able to; the ones that were able to, followed each other down and arrived about 2:00 a.m. on Tuesday. It was Sylvan and Connie, Allen’s sister Rose, my sister Rose, her husband Jason and their family, and my brother Jim, his wife Shirley and daughter.
From the moment we heard the news, I wanted to spend every minute I still had with Benji- we all did. Once Tyler arrived, Allen, the three boys and I never left the room for any length of time until he was gone. Although Benji was not responding in any way, we encouraged everyone to speak to him as if he could hear us, and I sat down by his bed and began reading “Jesus Calling” to him again; stroking his head while I did so. Every moment was so special! At one point I had thought that some time, when the room cleared, I was going to climb into bed with Benji, and just hold him. I was so glad when one of the nurses asked if I’d like to crawl into bed with him, I said I absolutely would so she and a couple other nurses slid Benji over and got all of his tubes and wires out of the way, so I could get in. It turned out we all wanted to do that- Allen, the boys and I, and we each took our turn crawling into bed with him to get close to him and tell him how much we love him. For about the last 1 to 1 ½ hours of his life, I was in bed with him, up till just a few minutes before he went to be with Jesus. I never would have thought a couple days prior to this, that I would be telling my son to take Jesus’ hand and go with him when Jesus comes for him; but this is what I whispered to him numerous times throughout that night. I encouraged him not to be afraid and told him he could trust Jesus. I loved some of the things I was able to read him from “Jesus Calling” again. There were many comforting passages in there.
Once everyone had arrived, we all went into the room with Benji to sing and say our goodbyes. Once again, we sang Great is the Faithfulness and When Peace Like a River. These were not particularly Benji’s favorite songs; it’s just that the first time he had gotten so sick from the ammonia, I had sung to him in an attempt to calm his extreme restlessness. At that time, it seemed to be the only thing that soothed him. Because of his altered state of mind during that time, he didn’t recall the singing later; however, after I read to him my Caringbridge journal entry from that night, from that point on whenever he began to feel anxious, he would ask me to sing; these were the first songs I would sing. They did seem to soothe him. (If you’ve read my entry following his second bout with respiratory failure- from I think January 25, you may recall how he had conveyed to me that he wanted me to sing to him. Because he had been re-intubated he couldn’t speak, so he used his hands to pantomime a choir director leading a choir. I thought it was so cute!)☺ These hymns and are now so precious to me and will always hold a special place in my heart!
Benji never woke from his coma throughout the night, and he took his last breath at 7:30 a.m. Tuesday morning. He went in the same way most of us probably would like to go- he simply went to sleep and never woke up. At that moment, we were ready to let him go; his last ammonia level was up to 415 and he was so sick and had been so miserable. Many of us were there with him when he left this world, and it was very comforting for us to have so many family members with us at that moment.
If prior to this I had been asked if I would want to help bathe Benji’s body after he died, I think I would have said no. However, once Benji soul had left his body, the nurses asked if I would like to help bathe him and I said I did; suddenly it just seemed like a natural thing for me to do. I guess it felt like this was my final act of love for Benji and by helping to clean him up and prepare his body for others to view, I was “finishing” my job. It felt so right to remove all those bandages from his body and wash the adhesives and other things that had been so hard to wash off before, because his skin was so tender. It felt right to brush his teeth that we hadn’t been able to brush for so long and wash his hair. And I was able to lotion his arms and hands that had become so scaly and dry. I was able to put a real shirt on him and a real pair of pants.
(He’d been wearing partial shirts that I had created so his upper half didn’t need to be totally unclothed. Because of lines and ports and needles and wounds and leaking scars, etc, etc, he wasn’t able to wear a full shirt. So, I bought a few shirts for a couple bucks a piece and cut the bodies out of them, leaving the necks and sleeves attached. I had had to cut pants down the outside of the right leg- from the waistband to under the knee, so one of his IVs could be accessed. I had closed the pants with a large snap. One that I had cut was a pair of CCS sweats (from his school), which he really liked. His response when he saw I was going to cut them was to tell me he didn’t want me to use that pair; I told him it was ok, I would get him new ones later. It is heartbreaking to think that I won’t need to do that now!)
As I write this, I can scarcely believe what I just wrote; it is still all just so surreal! Benji is actually dead!?!? He’s never coming back?!?! Last week, while going through pictures to use for the viewing and memorial service, the pain I felt when looking at the pictures of Benji when he felt so much better, was indescribable! Seriously, I do not have words to describe that kind of pain. That pain is just as intense now, though it is also laced with joy and laughter at times, and an understanding that now that Benji is gone, we could never wish him back! I know we have a lot of very difficult days ahead of us and despite the fact that I will continue to trust God whether it makes sense to me or not, I do ask him sometimes what in the world he was thinking! (Yes, I ask him that and I’m quite sure he’s able to handle my weak moments and questions.) In the end, I really don’t have any expectation of ever understanding what God was thinking, because as Isaiah 55:8 says, his ways are far beyond anything I could imagine…. So, we continue on, hour by hour, day by day, resting (most of the time) in the fact that though we will never understand, there is a good purpose for this, and we will continue to walk in total dependence on him to carry us through the most painful times. We won’t be able to do it alone!
Quite a few of you have asked if I’m going to continue journaling here; I’m not sure…. I do plan on writing again regarding more of what has happened over the past week and sharing my thoughts about that and the memorial service; however, after that we’ll have to see where God leads me.
Until next time…???
What “next time”? The future looks like it spreads out before me like a desert; barren and empty- nothing to write about. However, until whatever that “next time” is, I know we’ll badly need your prayers! We believe the worst is still to come and it would be so incredibly difficult to walk this alone! I know, from the way you have supported us so overwhelming up to this point that you will continue to keep us in your prayers. God bless you all for your diligence in prayer! Love to you all!!!
Oh, and I apologize to any of you who tried to stream the memorial service live online!! Due to technical difficulties, they were not able to do it. :(
