How do I say goodbye to my beautiful wolverine baby that I grew in my body for 9 months? Who I rocked to sleep suckling at my breast for 12 months? Held his tiny fingers as I taught him how to stand, to walk to eventually run. Who I comforted in times of sadness and shared in joys of accomplishments. Who I tucked in every-night with a kiss and bad singing of a You Are My Sunshine. Who I fought for 4 years side by side to find a cure and give the best possible memories and quality of life too? I don’t think I ever can….
Aiden taught me so much in his short 11 years. He was always the first to speak his mind. He had such an intelligent dry humour. I remember in Kindergarten Parent Teacher the teacher said Aiden was very intelligent and strong willed quoting “If Aiden was a 30 year old executive he would be top of his company, unfortunately those skills are not sought after in Kindergarten.” Aiden loved hearing this story! He loved white chocolate chips and peach juice like no other. He loved his iPad, all kids of music, making up experiments and YouTube videos. Most of all he loved his Dad, his brothers, step-sisters, Jay, cousins, Aunts and uncles, grandparents and just such a love for his family and friends.
Last night, Saturday April 25th, 2020 at 11:45 am Aiden took his last breath wrapped in my loving arms at home and surrounded by his Father Josh, Step-Father Jay and an amazingly loving nurse.
The previous week Aiden had been essentially unresponsive. His heart rate had increased to 170-180 and breathing pattern had changed significantly. We knew it would not be long but as we were told also no one knows the exact timing. Rogers House has been amazing setting us up with night nursing at home to help us through the difficult nights of very little sleep and keeping Aiden comfortable. On Friday, Aiden woke up and opened his eyes! It was shocking and amazing! He was able to point and say a couple words through whisper. One word was “Scared” My heart broke and I could only imagine how he must feel awake from essentially a 3 day coma unable to walk or really talk once again and feeling his body shutting down. I comforted him with honest words that his Cancer was growing making it hard to move and that he would fall asleep and wake up a beautiful angel soon enough and finally be free. He pointed to the bathroom and I was able to sit with him in the bath. He watched Onward with his Dad and brothers in my bed for the afternoon and then joined Jay, my Dad and me downstairs on the couch in the evening as he had some peach juice and white chipits. It was such an amazing gift to see his beautiful brown eyes open and alert for just one more day.
Friday night I fell asleep to Aiden watching How to Train your Dragon nuzzled next to me in bed. The night nurse monitored him closely as his heart rate had now increased to 200 and OT saturation lowering to 89. Around 8:30 am I woke Saturday morning nuzzled to Aiden and I could once again tell his breath pattern had changed. Three deep breaths and 10 second pause on repeat. I tried to wake Aiden but he was deep in coma like state. There was no more moving his arms as his body lay continually lifeless. I held him close listening to every breath afraid to even leave to go to the washroom. I messaged Josh to tell him to come over early with the boys and just nuzzled Aiden safe into my body falling in and out of sleep to the sound of uncertain breaths. My brother had stopped in and I could hear voices downstairs I cried for someone to come upstairs, by this point I could not hold it and I had to untangle my body from Aidens to go to the washroom. “I don’t want him to be alone” and tears poured from my eyes. I am so thankful for having such an amazing supportive family. My brother sat with Aiden and I quickly peed and got back into bed, Aiden once again safely nuzzled into my body and wrapped tight in my arms. Aiden still so unresponsive to anything around him and his breath once again changing this time to consist of short fast breaths. Josh arrived at 10 and we called Rogers House together. They Zoom videod and I set the camera to Aidens chest so they could watched his breathing pattern. Our worst fears were confirmed as we were told “this will be a very long day, to make sure we still eat and drink” and they recommend at this point Josh stay at my house to be by Aiden side as his time was drawing near.
The afternoon was spent with Aiden alternating between our loving arms and whispering words of comfort and security. Words of allowing him to be free that he did not have to fight any longer, that Mom and Dad are ok. We had a quick nursing visit again at noon to ensure we had any medication we may need already drew up to keep Aiden comfortable. Again Aidens breath changed to the long pauses.
I am so incredibly thankful for all the people who sent music requests in! Music was one of Aidens favourite things and we were told that he was still able to hear. The afternoon was spent with “Alexa please play…” we filled the room with music for the rest of the afternoon sent to us from all his loving followers on MamaOutpost. It took my mind from listening to every breath and just changed the whole air in the room to help us through this last part of the voyage. I am going to make Aidens ultimate playlist with all the songs that had been sent to us. This gives me such a peace that I am incredibly grateful for and as I type this tears form in my eyes.
At 5:30 pm Aidens breath once again changed to almost non existence. I asked Jay to call Rogers House as I knew it would take some time for them to get to our home and I thought for sure this was now the end. I will give my boy credit he has more fight in him then anyone I will ever meet. My family ordered Chinese from the famous Canadian Cafe in Almonte and Josh’s parents and my family all held strong together filling our house with such a love for Aiden and such a support system. The doctor arrived around 7 pm and Aiden was still gripping to every last breath, heart beat at 220. We joked that Aiden never wanted to miss out on anything and told that it could happen as the doctor was on the way back to Cheo but could also be by the morning. This unknown timeframe, so many unknowns cause my whole body to shiver. We were told that his breaths would go from the pauses to short breaths and his heart rate would begin to fall at which point we would know the time was closer. Finally we said goodbye to our family, Declan and Lynkon went with Joshes parents to his house and Jay, Josh and I bunkered down with Aiden in my room. Aidens breathing again changed and he sounded in distress with a gurgle in his throat. Josh administered Aidens medication to help him breath as I held him in my arms like a new born baby, trying to keep him upright to help with the secreations in his throat and clear his airways. the fear filled my pours, I felt helpless in all I knew what to do was hold my baby in my arms and whisper I love you. The night nurse called at 10 pm and the flood gates opened as she asked if I wanted her to come early. Crackle in my voice “yes please”. We tried our best to keep Aiden comfortable through gurgled and spastic breaths. Josh administer morphine and Medazaline to try to help with the breathing and lower his heart rate as it looked so difficult as Aiden chest punched forward working so hard for something so-many take for granted. We had been told that Aiden is quite comfortable and unaware of what is going on that this is just extreme difficult for us standing by.
Finally the nurse came, we had had her the previous weekend and she just encompassed the love of a mother. Jay had even joked before Aiden had turned that if he or Josh were not there she would have most likely cuddled right up beside me in bed and held me and Aiden in her arms to walk us through this, something I would not have had an issue with either. She immediately brought a calm to the room as she helped me situate Aiden, comfortably in pillows and administered more medication to bring Aidens heart rate down. I could finally breath as I looked at my sweet sweet boy who just looked so comfortable once again. His breathing settled and exhaustion overtook my body. I cuddled beside Aiden, my head nuzzled against his. Jay held me in his arms behind me and Josh lay at the end of the bed rubbing Aiden’s legs. It was around 11:30 at that point and sleep overtook me next to Aiden. It felt like I had fell into a deep sleep but woke to Aiden coughing, sounding like he was choking. I rolled him to his side as I heard the nurse say “This is it”. His sweet face eye to eye with mine and one more cough and his face changed, his lips parted and checks relaxed. I could feel the warmth of his body but I knew that that was his last breath and I could not help but smile as I saw the peace grace over his beautiful face. I heard Joshs mornful cry as he fell onto Aiden trying to grab every last moment with his son and my heart broke for him as I could see he was not ready.
I stared at Aiden’s angelic face, I was not scared which had been my fear as I had never seen death before. He was just beautiful. The sound of the room was quite, there was no more struggling to breath. Silence echoed in the air and left me unsure what to feel as I tried to grab onto the concept of this silence. He was just beautiful as I traced every feature into my mind. My boy really did have the most beautiful eyelashes. Josh mourned over Aiden and we called his father to come to comfort him. I looked to Jay as tears brimmed his eyes and I did just feel at peace. A sad, sad peace. I was so incredibly grateful to have this amazing partner in my life, a man who has slept on the floor bedside to Aiden and I for the last 5 weeks. Always there. Joshes Dad arrived as I just continued to memorize every millimiter of Aidens face. Josh stepped out with his father and the nurse asked if I wanted Aidens changed to different clothes. YES! it may seem silly but this was a thought that had entered my mind over and over the last couple days. I did not want him to be cold when they took him away. I asked Jay to get Aiden blue soft hoodie, I wanted him to be warm. I could not find the shirt I had glued in my mind as panic had set in as I riffled through the laundry. Finally the nurse told me its ok, to take my time, we will find it and she helped look. The pile I had already looked into seemed to open up as I took my breath and found the burgandy-peach coloured “WiFi No Panic t-shirt” for Aiden. I left the room as the nurse dressed Aiden and returned to him laying peaceful in his best dressed for school, dressed for everyday. comfortable, warm, soft and safe. I could not ask for anything more. I cuddled beside him his body still warm which surprised me. The doctor had just arrived and I watch as she put her stethispoce to his chest. no breath although I swear I still saw movement. The nurse and doctor talked and I don’t remember her leaving or much about her. I once again cuddled next to Aidens still warm body, my hand on his chest and Josh lay to the other side. The door was closed and I fell asleep for the last time with Aidens body next to mine. Time passed and we heard a knock, the time was here. I knew Aiden had to go but I was not ready. I did not want him cold and alone. I knew he would just be down the street at the home that Declans friend also lived at and this gave me comfort but this still stung as the reality settled in. A young man in full dress uniform entered. It was now around 3am yet here was a young man fully dressing in grey suit and long dress coat asking if we had questions. I asked how they would take him if they had a stretcher, I confirmed he would just be down the street, I confirmed they would keep his safe Minecraft blanket with him and his three stuffies so he would not be scared. All to which I was assured. I kissed his now cooling face and told him I loved him and I stepped out of the room, not wanted to see them move him from the comfort of my bed that had been his home consistently for the last 6 weeks. And that was it. I sat in the garage with my dad and Jay and I heard the noise of Aiden coming down the stairs. The nurse popped her head in to ask if I wanted to see him be put in the vehicle, “sometime people find peace in it” no I was ok. and then that was it. Josh came downstairs and said goodby with plans to bring to boys over in the morning to talk to the and let them know their big brother passed away. As Jay and I returned inside, my dad Called, “it may be hard going back to your room!” Thanks Dad. Jay and I went back upstairs. Our amazing nurse was still there, she had changed the sheets and pillows and comforted us. I asked her if this was the only care she did, end of life. Yes. I asked her how many?, the look in her eyes told me so many. Then I ask how many kids? Aiden was her first! I was in disbelief. I told her I could not believe this in how natural she had been with Aiden. She told me she never had biological kids of her own so she never felt she could properly care for children. I told her she was so mothering and loving right from the start she was just so comfortable with Aiden the weekend before. It was so incredibly beautiful and I felt almost surreal that of all the years AIDEN was her first child she walked through death. (If your reading this I am so thankful for you during this time.)
And then the time came for everyone to leave and it was just Jay in I, looking at a bed that had not been our own since Aiden’s seizure in June. How do we look at this bed and not hear the witty comments from Aiden or think about the struggles of the last 6 weeks. But as I nuzzled into the warmth of Jays body I felt safe. We put on a show but within minutes both fell asleep.
I know the next couple days will be… well I really don’t even know. Josh came this morning with our boys and we told them Aiden is now free and they seemed ok. After some controversy this morning we will see our girls tomorrow and we will just go from there. I know we will get though this and I know we have so much love and support around us. And I know Aiden is free and at peace and all we can do now is just live and learn what this new life will look like.
Thank you to everyone for all the words of support and condolence, I will not be able to answer to all but I will read them. If you are able to help financially a go fund has been set up to offset costs I have incurred, funeral arrangements and really just help give us the time we need to mourn. Thank you and lots of love.
Aidens passing has been incredibly difficult but a lot less difficult because of the love and support we have receive from family, friend and community. Thank you to everyone who has sent meals, condolences, and donations so I can take this time I need now to grieve and take care of myself and beautiful blended family. I am so incredible grateful for the support we have received.
Stephanie (aka MamaOutpost)