A Peaceful Goodbye

Blogging throughout this journey has created a wonderful outlet for me to not only keep many friends and family updated on Conley's condition, but has also gave me an immense amount of comfort and peace with what we were facing. Never would I imagine how much this blog, and Conley's life, would create the most powerful human connection I have ever known. His life spoke through my words and allowed others to connect on a whole different level. I am so honored to have been his mother and share his story with the world. With that said, I felt it was only appropriate that I share the beautiful and peaceful end to Conley's journey in this life.

While I could discuss at length the conversation Jonathan and I had to face when we decided not to pursue further medical intervention for Conley and surrender to the fact that we had reached a point the it was only hurting him more than saving his life, that decision would only truly make sense in our world and in our hearts. And by no means do we feel the need for acceptance with our decision. However, I will say that we were blessed to have been on the exact same page with every ounce of our decision, and our hearts joined in understanding the magnitude of what we had concluded. We had always asked one of our doctors, whose opinion we value immensely, to tell us when he thought we had reached a point that we were doing too much. And as we all sat together to talk about Conley's journey on Monday morning, it was without a doubt we all agreed we had reached that point. We didn't even need to say it out loud. We just knew.

During this conversation, we were told that a "good" thing about kidney failure was that the easiest decision moving forward was to refuse dialysis. Parents have the right to not pursue dialysis even though it is life sustaining. We did not have to make many decisions, and withdrawing dialysis was the most straightforward approach so we coulf be at peace. We were also told that this would simply mean Conley would accumulate fluid, his electrolytes would alter, and he would simply become "sleepy." From then on, the plan was the make sure that Conley would also be comfortable while "sleepy," as his lungs would start to fill with fluid and he would no longer be able to breathe.

Once we decided that we no longer wanted to pursue medical intervention, we met with a range of people including the palliative care team, a psychologist and a chaplain. We were fortunate enough to have people in this meeting that have known Conley intimately and through all walks of life. This meeting was to talk about "what now?" How do you make your child's transition peaceful and comfortable? And all I can say is Wow. This group of people lifted us up to a place I never thought we could be during such a traumatic time. While the conversation was definitely painful and unfathomable, I somehow found a huge sense of relief. I finally had some control. I could control how my son died. I wasn't leaving that up to a surgery, an ER visit, or a medication. I was now planning how to keep him safe, comfortable and alive in my heart rather than advocating for him to be hooked up to machines, or asking for more tests to make more scars on his tiny body. It was as if we were set free, and so was he. Finally. Free from decisions, free from having to be so strong and free from any schedule or appointment. Conley could do it however he wanted and we were just going to make that as comfortable as possible for him. As I said before, there was a shift in our hearts to a place of pure surrender as we made a choice to transition to an intervention that involves love, peace and sacrifice, so that Conley would no longer suffer.

The first thing we did was get him out of the ICU and off all of the machines. We had several options including staying at the hospital, taking Conley home on hospice care or going to another location. We felt it was best for our family to remain at the hospital so his medication could be closely watched due to previous difficulties with sedation. We were allowed to spend his remaining days on the 4th floor (oncology unit) that had treated us so well many times before.

I wish I could say it all went according to plan, but let's be serious, we are talking about Conley. He is a science project that has never been studied. One doctor even said to me, "I think everyone missed the day in school when they presented Conley's case." Meaning, there has never been one quite like it. It took several days to find the right medication combination that would put Conley's mind and body at ease, and to say waiting for that process to settle was torture would be an understatement. But, so worth it, just like many times befote. He had just built up such a tolerance to any and all drugs that we had a hard time finding a peaceful, numbing effect while not causing respiratory distress. But, the doctors were relentless and determined to help us put Conley at ease. We finally found a combination of medications that put Conley in a deep, comfortable sleep for his remaining days. He wasn't alert or awake, but he also wasn't suffering anymore. We were lucky to have an amazing doctor who guided us through each part of this process, down to every minor detail by coming in at 3am to relieve my breaking heart. He even walked me through the awkward questions such as what Conley would look like when his body started shutting down. I had advocated for Conley every day and even down to the last minute, that I finally told the doctor I wanted to relinquish all care to him. I told him what I wanted, and he made it happen. I wanted to spend the last few days being Conley's mother and that's it. Not his doctor, nurse, caseworker, social worker, etc. Just his mother. Our team of doctors accepted that decision and supported us with no question. They gave us guidance on things we never ever wanted to know, including services, what do with Conley after he was gone, and how to celebrate his life. They provided a room for people to visit Conley (basically a viewing) with an additional room close by that provided coffee, drinks and snacks donated by the cafeteria at Dell.

For the next four days, we extended an invitation to those who loved Conley to come say goodbye. Family flew in from all over the country and many people were blessed to come hold, kiss and talk to Conley. I had said so many times that I was fortunate enough to hear all the amazing things people say about Conley,  but he hadn't, and this was the time for everyone to tell him how much of an impact he has had on the world. Doctors, nurses, therapists, residents, interns, security guards, you name it, and they came. Literally, a revolving door. But, man what a treat to hear and see the love in his room. THIS was the ending we wanted. Not during surgery, not in the ER, and surely not during an attempt at a life saving intervention. The intervention we chose was known, planned and peaceful, unlike so many other times in his life. We were even able to bring Choice up many times to cuddle with "sleeping" Conley and cousin Victor came to "throw kisses" at him. We took several walks out to the healing garden with family and friends, feeding the fishes and playing music. Even mommy took Conley on our typical hospital route we had walked so many times, as we would go get coffee and then cuddle together on a bench of the healing garden. Mommy got to lay with Conley all night long in a big boy bed as we waited for him to tell us when he was ready. We got a large bed (for bariatric patients actually) so we could cuddle and hold hands. I could hug him, kiss him, cry for him, laugh, tell him stories, watch videos of him, and just stare at the peaceful sleep he was in. I pretty much stared at him for the majority of the night because I didnt want to forget what he smelled like or how his face fell. While I was overjoyed to have all the visitors during the day, I was even happier when it was nighttime and I could have Conley all to myself. All this with no machines beeping, wires attached or tubes in his mouth. What a treat for me. This is kind of how the story started, with Conley and I laying in a hospital bed together just waiting patiently for what came next. And this is how it ended. The staff pulled all the strings for us so we could give Conley the ending he deserved.

Conley decided to leave this world on Friday, March 17th at 3:26am while laying in mommy's arms. I had been cuddling with him all night and usually just stared at him. But, I had drifted off to sleep and something urged me to wake back up. I looked at him and gave him a kiss on the forehead. He hadn't been really responsive to touch the past few days due to sedation, but this time, he turned his head toward me. He let out a huge sigh. The type of sighs that you make when you are at ease. When you have accepted. Over the past few days, his breathing pattern had changed. He'd let out a big breath, and then stop breathing, quickly to go to shirt spastic breaths. But this time, the breath was different. So I waited and watched. That ended up being his last breath. I put my hand on his chest and could still feel his heart beating, but the pounding became more faint over time. I picked him up so I could hold him as he finally stopped suffering. I held him for hours after. It was impossible to put him down knowing that I'd be walking out of the hospital without him this time, and not coming back in the early morning. He laid there so peacefully though, and I knew this was perfect. Painful, but perfect. I am so glad he waited to share this moment with just me. I couldn't have imagined sharing this moment with a bunch of people. He was mine, and I was his for so long. I will miss him so very much.

Conley Duke Weems
January 26, 2015 - March 18, 2016.