Written by parents Ameer and Natasha
He looked on the outside like he was almost normal. They reminded us he was only living because he was in Intensive Care. Although we knew it, it was hard to accept. Still is.
We had to make a choice. Something I wish no one ever would have to make: an impossible choice. We chose to stop the aggressive medical intervention and to focus on enjoying the time we had left with Lucas. We were presented with some options…. It was such an uncertainty how long he would live.
Emily’s House is a children’s hospice: a place to be free with Lucas in a non-hospital environment: a place where we could actually enjoy him. At the same time, there were doctors and nurses that work there in case anything went wrong. The goal was to get him to Emily’s House for December 24th.
When we arrived at Emily‘s House, it was a big change. No monitors, no two-step check-in, no alarms and emergency situations. It was just us and Lucas in a room with a bed, a crib, a chair, even a washroom and TV! All these little things we did not even think about missing before. The staff made us feel right at home, and they were so helpful and un-intrusive. It was Christmas Eve.
We got a few hours to hang with Lucas and it was amazing. We could pick him up and walk around with him…. That was such a big thing for us it’s hard to explain. We took in all the moments we could get, and got to see how he reacted outside of a hospital setting: He loved it.
That was the first night out of the hospital for all three of us. It was … bittersweet. These moments were the best we had with him, but every moment was just one closer to saying goodbye. If we had to say “goodbye,” we wanted to make sure he knew and felt the love all around him. We wanted him to experience a Christmas with his family.
We could not have asked for a better present on Christmas day. I know he felt the love from everyone around him, and he honestly never seemed happier to me.
That night was bittersweet. The next day, he was to have his special mask removed, and would then be truly disconnected from all life supports. What would happen after was an unknown. He could live only minutes, or in a best-case scenario, maybe days.
When the mask came off, … he looked so different to us. I think he was more in shock than anyone else. He was making all these faces we had not seen before, and being just a little more expressive overall. We did as much as we possibly could with him that day. Everything we could think of.
The next day he got a few more visitors, but we didn’t do too much. We just tried to enjoy his company. We started to notice he was slowing down a little, and we just wanted to keep holding him.
The next day was Friday, December 28th. That day, Lucas turned very quickly. Knowing it is coming does not help or prepare you for it. We wished he had a little more time, but we remind ourselves we would always wish for more no matter how much we had.
His deterioration was difficult to witness, and it does not go anything like you think it should. On Saturday morning, December 29th, Lucas left us behind. We hope he is now in a place where there is no more pain, and no more suffering. He left a huge impact on our lives and we miss him. Every single minute of every single day. Your memory will live on with us and all the people whose lives you touched.
We love you, forever.