As we approach the one year anniversary of Connor’s passing, I find myself more and more wanting to write down what happened during that time. While part of me thinks there is absolutely no way I could forget the worst day of my life, I also know that some of the memories are starting to blur. Whether that is due to time or my brain trying to protect me, I’m not sure. This blog post is mostly for me so I can ensure I have a written record...as you can see it is extremely detailed and long.
Let me start off with a few things that may seem odd. In reflecting back on Connor’s passing, I can’t help but be thankful. Not because he is no longer with us (obviously), but for many different reasons. One, we couldn’t have been in a better place. Connor was in the PICU and there was a nurse and respiratory therapist in the room when things went south. While part of me still wishes I had noticed something before they did, I am thankful we were where we were. Two, I’m thankful both Matt and I were there. This goes along with reason three. Matt and I knew that the odds were we would outlive Connor. One of my greatest fears was something happening to us while he was still alive. Connor required 100% care and while we do have family members and people in our lives who helped with Connor, no one knew the ins and outs of everything like we did. That being said, we knew that Connor’s life would likely be short. If I was ever at a funeral, I always thought about what Connor’s would look like. While that may sound incredibly morbid, it was a reality for us. While Matt and I rarely spoke about this...I couldn’t without crying, it was something that we likely knew we would one day encounter. I am thankful that we were both there. Connor wasn’t at school, he wasn’t with our family while we went out on a date, etc. We were both able to be there to support one another and to be with him in his last moments.
Leading up to his PICU stay, Connor attended his first day of first grade on Wednesday, August 21. Matt dropped him off and took some pictures (which we will forever be grateful for) and I picked him up from school. If I remember correctly, he had a great first day. Later that evening, it was Matt’s turn to stay up. [We had a system in order to help guarantee some sleep for one of us every other night. While Connor himself would typically fall asleep before 8:00, he had a last feed of the day that would usually start at 9:00. One of us would stay up and run this feed and go to bed later while the other would go to sleep early. If it was your day to go to sleep early, that meant you were on “Connor Duty” that night. So whenever he woke up, I would get up. Sometimes that would be 2:00, sometimes not at all.] Matt said Connor woke up coughing that evening. The following morning he was coughing a lot and we made the decision to keep him home. This was day 2 of school so Matt took on staying home with him (as a teacher, there’s never a good time to not be at work, but the first few weeks of school are really tough).
Cuddles with Daddy
Connor ended up staying home on Thursday, August 22. Connor had a pretty good day without a fever (his highest temperature that day was 99.8). We kept him home the following day (Friday, August 23) and Matt took him to the pediatrician (he had a fever at this point of 102.2). Typically, we were those parents that would take him to the doctor if he had a fever. He was incredibly susceptible to pneumonia and would often get ear infections as well. At the appointment, his lungs sounded good and his ears looked good, but they started him on antibiotics just to be safe (again, highly susceptible to pneumonia). They also did a viral swab as well. Connor’s fever continued that day and he wasn’t a happy kid. On Saturday, we were both home and noticed a lack of urination. His fever was improving, but this was (of course) a new symptom. We ended up taking him to MUSC After Hours on Sunday. If I remember correctly, he got a chest x-ray to rule out pneumonia and Connor seemed in okay spirits. We got some smiles out of him and were sent on our way. I ended up emailing my principal that evening to tell him that Connor had been sick and Matt had been staying home with him. I wanted to let him know that if it continued throughout the week, I would need to stay home and let Matt go to work. I knew it wasn’t an ideal time to be out of work (the first week of school), but it is what it is.
On Monday, August 26 Matt kept Connor home. Matt texted me around 8:00 and told me Connor briefly woke up and fell back asleep. This was VERY unlike him. Connor is usually up and ready to start his day early. Matt was able to get a 9:45 appointment with Connor’s pediatrician. However, he realized something just wasn’t right. He was trying to get Connor to wake up to go to the pediatrician and he really just wouldn’t wake up. Matt called me and I left work (thank you to my amazing coworkers who basically kicked my crying self out and took care of everything for me). Matt decided against the pediatrician’s office and instead planned to take him straight to the ER. I beat them down there and was waiting on Connor at the entrance. When I checked in with him, they took us straight back and a team of probably 8-10 doctors and nurses came flooding into Connor’s room. They asked the standard questions that we were used to answering. One question was about whether he was having bloody stools. We told them that his BM’s had been darker, but that we attributed it to the antibiotic. They took a sample and it showed up as having blood immediately. Basically, Connor was losing blood in his stools. They ordered a blood transfusion which seemed to take forever. Connor finally got hooked up for the transfusion and we were admitted to the Pediatric Intensive Care Unit (PICU)...our 2nd time in this unit in Connor’s 6.5 years. Before, Connor was in an open bay, but this time we were in a room. Once Connor got some blood in him, his color started to improve and we were getting more of a response out of him. The plan was to do a colonoscopy and endoscopy in the next few days to determine where the blood was coming from. We stayed the night down there and I am extremely thankful for our nighttime PICU nurse who allowed me to stay in the room with him (generally, parents are not allowed to sleep in the PICU). It turns out it was my last night with Connor. Connor didn’t really sleep at all and his breathing started to get worse. It was reminiscent of our hospital stay in June 2019 where Connor could only seem to breathe in one position (perched up against my cheek). I even tried crawling in bed with him and laying like that, but he was just so uncomfortable.
On Tuesday, August 27 the doctors came around for rounds. During rounds, Connor was not happy and honestly seemed in pain. The breathing issues were new and troublesome. They no longer felt comfortable cleaning him out for the colonoscopy and endoscopy as they didn’t want to sedate him if he was already having trouble breathing. I suggested Afrin and a racemic epinephrine to help with his breathing. This is what we used back in June and it helped immensely. The doctors agreed and once the orders were in, the respiratory therapist came in to give the racemic epi. Connor had finally seemed to settle down and I thought he was resting comfortably (after all, he hadn’t really slept well the night before). The respiratory therapist was using a very small suction tube to suction his mouth and nose. Connor didn’t seem to be disturbed by it, and again, I chalked it up to him finally settling down to rest. In hindsight, Connor was slipping away before my eyes. While the respiratory therapist was doing that, the nurse was trying to find a good place for his pulse-ox monitor. She kept trying it in different places and just thought it wasn’t picking up.
Before I knew it, there were all sorts of doctors, nurses, etc. in the room. Matt was in the parent room checking in with work when I texted him to get in here now. The chaos started around 10:50. The next 40-50 minutes were an absolute blur. I overheard phrases such as “Get the chaplain,” and "We need to all stop talking so we can hear Dr._____." Matt and I were moved out into the hallway to watch on as the PICU staff tried for the next 40-50 minutes to revive Connor, doing CPR the whole time. Connor was intubated at some point as well. There are a few things from that time period that will forever be etched in my memory. Looking Matt in the eyes as we both understood what was happening. Texting our families to come down since they were doing CPR. Seeing the PICU shutoff for parents and families to enter (we were the very first room on the left as you walked in). Watching in sheer awe at this well run machine tried desperately to save Connor’s life. One doctor was in charge, someone was prescribed to take notes. Connor was given another blood transfusion as well as plasma. Doctors were constantly rotating who was giving CPR. He was given many doses of a drug to shock his heart back into working (I can’t remember the name, but I want to say epinephrine). At one point, Matt asked the doctor who was in charge how bad it was on a scale of 1-10. She said a 99. She said if he were able to recover, he would most likely be on life support. We didn’t want him to suffer anymore and told them to stop. They allowed us in the room and I remember hearing this scream of emotion as I hugged Connor. I assumed it was the hospital staff, but Matt’s parents had just arrived. My parents were still on the way down there and I called them to tell them he didn’t make it. I did the same with my sister who was trying to park. All of our families came down. We were given as much time in the room as we wanted and someone from Child Life came to see what we wanted. We chose to get two sets of hand and footprints on canvas as well as an imprint of his hands and feet. It was awful and I felt absolutely numb.
This brings me to one of the most unpleasant parts of this (aside from the death of our sweet boy). We were informed that anytime a child dies, the coroner has to come and investigate. We thought it was odd, considering he died in a hospital and doctors had done everything in their power to revive him. It took forever for the coroner to arrive. When she did, there was a detective as well. We were not allowed to be in the room with Connor while they did their “investigation.” I also would like to note that Connor couldn’t be disturbed. His breathing tube had to remain in place, his g-tube connector, which was filled with blood, had to remain connected, and the probes on his body had to stay until the coroner came and the autopsy was done. After their time with Connor, they met with us in a small room and interviewed us. We had to go through the days leading up to what brought us into the hospital and review what happened earlier in the day. Both the coroner and detective were very understanding, but we just felt so violated. The coroner also asked for our blessing to do an autopsy. We did not want one, but were told we didn’t have a choice and that she hoped we would give her our blessing. It was already the worst day of our lives, and we didn’t understand the in depth investigation. Not to mention, it was like as soon as he passed away, he was no longer ours to make decisions about and for. Shortly after they left, we got a phone call that the coroner had to come and visit our house. Instead of staying to support us, Matt’s parents had to go and let this stranger into our house for her to take pictures of things. Again, she was very nice and compassionate, but to say we felt violated is a huge understatement.
Eventually, Connor was ready to be wheeled down to where the autopsy would take place the next day. Matt and I (as well as the nurse we had for the day) walked him down as far as we were allowed to go. We were assured the autopsy would take place the next day. Matt and I numbly packed up the room. It was incredibly surreal to wheel his empty wheelchair out of that hospital. Matt and I drove seperately to the hospital, so we were alone on our drives home. My music in the car was already off and I cried basically the whole way to my parent’s house. My Aunt Deloris and cousin Angela brought food over for us. Neither of us were hungry, but I knew we needed to eat something to take care of ourselves. We spent some time at my parent’s house along with my sister and then drove home separately. Again, it was a grueling car ride home. One of the hardest things was walking into our house. It was SO empty. We no longer had Pandora’s Toddler Radio blasting. We both wandered around aimlessly with no idea of what to do. We eventually showered and managed to fall asleep. I was so emotionally drained it wasn’t hard. I woke up early on the morning of August 28 and just cried. My internal alarm clock hadn’t gotten the message that Connor would/should be waking up any minute now. Matt and I decided to get up for the day. We ate breakfast and then went down to MUSC. Even though we couldn’t be present for the autopsy, we just wanted to be near Connor. Interestingly enough, we saw a couple of the doctors from the PICU who I’m sure thought we were odd for being down there. We also were sitting on the benches in the MUSC Horseshoe when a familiar face hopped out of a car. It was Mrs. Washington from the Webb Center. We hugged her and I still can’t quite believe we saw her. We spent most of the day wandering around aimlessly. We took a few walks around the route we used to take when Connor was in the NICU. We also may have stalked the autopsy area. We saw a vehicle for Miracles in Sight. We had been contacted by them to see if we would be open to donating Connor’s eyes for research and we had agreed. Finally, we received a call that the initial autopsy was completed. As for the results, there were a lot of things that we were told, but none of which pointed to why Connor lost his life. Due to his neurological issues, we were told his brain would be saved to be examined. Again, this was not something wanted to happen, but it appeared we had no say so anymore. We also were in touch with family that day and knew they would want to see us and be around us. I asked my mom if her and Matt’s mom could just handle it. We didn’t care where we were, who was there, or what we ate. After we received the report from the coroner, we went to Matt’s parent’s house. There, we were surrounded by family. It was nice to have people around us, to let us talk about him when we wanted, to support us as we cried, and to help take our mind off our new reality. It was more helpful than they probably realized. On our way home, I got a call from a number I didn’t recognize. It was the doctor we saw at After Hours on Sunday. She actually used to work at Connor’s pediatrician’s office and she had heard what happened. I wish I could remember the specifics of our conversation, but it truly meant so much that she called to talk to us.
On Thursday, August 29 we met with Stuhr’s Funeral Home to determine what we would be doing in terms of Connor’s body, a service, etc. For our meeting, we took some clothes for him to wear during the open casket viewing. We knew we wanted him cremated so he could be at home with us (we also planned to get some jewelry that would allow us to keep some of his ashes with us). We also planned to do a Celebration of Life service and we wanted Connor there for that. This meant he would need to be embalmed as well. We picked out the urn we wanted (we also got 2 small urns for our parents to have as well). We picked out some bright, beautiful flowers to go on his casket and also picked out a small casket for his sweet body. We decided on a visitation and service time as well. After we left the funeral home, we went to Matt’s parent’s house. My parents met us over there and we met with the minister at the church where the service would be held. We discussed what we wanted and the main things that we cared about: us speaking, a video slideshow, it being considered a celebration of life instead of a funeral, and singing one of Connor’s favorite songs (ironically the last song we ever got a smile to on August 26). A picture from the obituary was selected as the cover, but I wanted more, so I created a collage to go on the front cover of the program.
Afterwards, we came home and I started working furiously on pictures for the slideshow that would be rolling through at the visitation on Friday. It was towards the end of me accumulating pictures that our hard drive stalled out on us. This contained pretty much ALL of our Connor pictures and videos. I finished up and we took the flash drive with all of the pictures up to the funeral home. From there, I started working on Connor’s Celebration of Life video. Due to the hard drive going out, I was limited to Facebook pictures (thank goodness for FB!) which still took forever to accumulate. I went through my pictures, Matt’s pictures, and other family member’s pictures. I created collages to fit as many pictures as I could. We had already decided on the songs we were going to use: Borrowed Angels by Kristin Chenoweth, One More Day by Diamond Rio, Keep Me In Your Heart by Warren Zevon, and Live Till I Die by Frank Sinatra (this upbeat tune was probably a surprising choice, but my goodness did it fit him to a T). I stayed up until 2 or 3 in the morning working on the slideshow, but it was almost therapeutic.
On Friday, August 30 was the visitation from 4-7. Prior to that, Matt and I took the slideshow up to the church to verify that it worked. We got to the funeral home early and had some time with Connor and family. We weren’t sure if we would have an open casket, but he looked good, so we knew we wanted people to see him. We were incredibly humbled by the turnout. We saw family and friends, some of which we hadn’t seen in years (some even since high school!). We appreciated everyone who came out to pay their respects. Afterwards, the immediate family went over to my parent’s house for dinner. Again, it was so helpful to be around others.
Saturday, August 31 was Connor’s Celebration of Life. Prior to the service, we made sure everything was staged the way we wanted (his empty wheelchair a reminder of our lost boy). We were also able to see him again in his casket. One thing I will never forget about that day is the feeling of waiting to walk into the church, hand in hand with Matt, at the front of the line of family. I’ve been to many funerals in my life and have walked in this very line many times. However, I’ve never been in the front like we were. Just knowing that people would have their eyes on us and feel sorrow was a feeling I can’t quite describe. Again, we were incredibly humbled by the turnout (we both had college friends who made the trip to Charleston which was so kind). Matt and I both spoke which took a great deal of strength. Initially, I always thought there was NO WAY I could speak at Connor’s service. I mean, I couldn’t even talk about the potential of losing him without crying. But, we channeled our inner Connor strength and both managed to speak (Matt did much more than I). After the hearse drove away, Matt and I made our way through the crowd to thank everyone who had shown up. There were so many surprise visitors, including high school, college, and work friends, therapists and teachers, and even people from his pediatrician’s office. We were truly blown away. Once the crowd had dispersed, we again went over to my parent’s house to spend time with loved ones.
The following week consisted of waiting. Waiting for the analysis of Connor’s brain to take place (it was maddening to us that Connor wasn’t “whole” during his visitation and service...instead, a crucial part of him was missing). We also had to contend with Hurricane Dorian who threw a wrench into things. Luckily it didn’t affect our service or visitation, but it did delay the analysis and ultimately the cremation. It was almost good to have a storm to help take our minds off of our new reality. The further analysis of Connor’s brain did not yield any answers (not a huge surprise to us), but we still had to wait for toxicology results to come back for his final autopsy results. Connor was cremated on Saturday, September 7. His urn had not yet arrived, neither had the jewelry that we ordered so we were given Connor in a temporary container to bring home. Once everything came in, we took him back up to be placed in his final home. We also were able to put some of his ashes in bracelets for us.
Eventually we did get the final autopsy results. It was inconclusive. We know there was an internal bleed, but the source couldn't be found. There were other things the autopsy found that were troubling, but none of which would have caused his death. Basically, Connor was a medical mystery up until he passed away.
This past year has been...I don’t even have words. I am proud of the strength Matt and I have had. We have our moments, and the big holidays were the most difficult (Connor’s birthday, Mother’s/Father’s Day, and the upcoming 1 year “anniversary”). We do try to take comfort in knowing that Connor will no longer suffer, but it doesn’t mean we miss him any less. Before I close this out, I just want to say thank you. Thank you to Connor for being the best kid ever. We know your life wasn’t easy, and we really tried our best to be great parents to you. We were beyond blessed to call you our son. Thank you to our family and friends who were there for us during Connor’s whole life, and especially after he passed away. To those who brought us food, who passed along the word that he had passed away, who came to show us your love and support. We cannot thank you enough.
Connor, we love and miss you so much.
