The questions have started…and how do I answer?

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Recently Mr. T. was rubbing his hands along his throat and his little fingers ran across his surgery scar. I noticed him stop and rub his fingers back and forth over the spot. He turned to me and asked “mummy what happened to my neck?”.

I froze. I’m not sure why I froze. Maybe I just wasn’t expecting these questions so soon?

Mr. T. is used to going to Sick Kids for his doctors appointments and check ups and tests. He’s so used to being poked and prodded that on a recent trip to the ER for a chest infection the doctor said “oh he does really well with doctors doesn’t he? He must be used to us by now” because he just sat still and let the doctors check him out with no fuss. That being said, his doctors visits are just a part of life for him. He doesn’t yet understand why he has those visits or have any knowledge of how his life began. I guess I figured that eventually he would ask why he had to go and what happened but I didn’t think it was so soon.

Maybe I froze because I truly didn’t know how to answer him. How do I begin to tell him what happened? How do I explain to him how the start of his life was both the best time of my life and the worst time of my life at the same time? How do I possibly begin to put to words the terrible pain I felt? How I would sit over him in his little incubator, loaded with tubes and with the beep beep of the machines going I would whisper to God, or whoever was listening, that I would do anything…ANYTHING if He would just let me switch places with my son. If He would just let my son be ok then I would take his place in the hospital bed. I would suffer any amount of pain if it meant Mr. T. wouldn’t have to.

Somehow I quickly came up with something that would ease the curiosity of a three-year old…”When  you were a brand new baby, the doctors saved you and they left that little mark on your neck to remind you just how special you are.” It was enough. When his Daddy got to the table he told him, very matter of factly “Daddy the doctors saved me…see?” and proudly pointed to his war wound, as we refer to it.

My eyes filled with tears. It hurt my heart. To remember that day. Through the whole ordeal I think one of the worst days was the day of his actual surgery.

Mr. T. arrived at Sick Kids of a Saturday. The doctors went over his condition with us. Explained to us, trying their best to put their medical jargon into our terms, what it meant, what needed to be done, what his recovery would be, what it meant for his life. They prepared us for the risks, it was a surgery, but by all accounts it was something they could fix. One doctor put it best by saying “I know to you this is the end of the world, but for us this is a good one, we can fix him.” They told us his surgery would be the next day. Sunday. The plan was for his surgery to be at 8am but they warned us, if an emergency came up it may be pushed back.

We arrived to the hospital bright and early that morning. I sat beside him and held his hand and rubbed him. I sung to him and whispered my prayers to him. I wasn’t allowed to hold him but I perched myself above his incubator and I put my face right beside his and just breathed in his air. He has a smell. He still has that smell. I just wanted to breathe as much of it in as I could. I whispered to him that I was here. That I was sorry. That if I could take his place I would. I told him that he had to be strong. I sat there and I whispered to my Nana, who had passed away a few years earlier. I asked her to stay with him. I said “I can’t be with him Nana, please stay with him when he’s in there. Don’t leave him alone for one second. Just stay with him”

As a side story, something strange happened about 18 months later. One day we were at my parents home and they had a picture of my Nana when she was much younger on their table. Mr. T. saw the picture and smiled. He pointed to it and said “Nana”! My heart skipped a beat and I thought I’d imagined it…I asked him “Mr. T. who is that?” and I pointed at the picture, “Nana!” he exclaimed. My Nana passed away years before Mr. T. was even born. He had never seen a picture of her, old or young. He had no idea who she was.  I started crying because I realized that she had heard me that day. It brought me peace because I understood that for those hours that he was in the operating room, he wasn’t alone at all. My Nana was with him.

Just as they had warned us, his surgery was in fact delayed due to an emergency. I grew more and more anxious as the hours went by but I reminded myself that another child was having a life saving surgery and another family was living through a life changing ordeal as we waited. I prayed that whatever emergency they were dealing with that they were able to save this child.

When the time finally came they allowed us to walk down with the orderly who came to transport Mr. T. to the operating room. We walked beside Mr. T’s crib as they rolled it through the NICU, to the elevator. We stood quietly beside each other in the elevator down one floor from floor 3 to floor 2.  I held onto the crib as we walked through the back halls of the surgical floor and silently my tears were falling to the floor. We finally arrived to the big doors that said “Operating Rooms” above it. The orderly stopped and told us this was the end for us. She told us to say goodbye. How do I say goodbye??? What do I say? I felt like screaming that at her…what do you think I should say to my son right now??? I held it in. I kissed him, my lips shaking and my tears soaking his little tiny face. He slept peacefully and had no idea the turmoil his parents were going through in that moment. Then we stood there, in the middle of the hall as the orderly wheeled him through the doors and we stayed there after the doors closed behind her. I’m not sure how long we stood there to be honest. At some point I almost collapsed on the floor. I began sobbing. Loudly. Hysterically. The kind of noise that would draw attention to yourself. Looking back I wonder if people stared at me, or if because it was Sick Kids they understood. Mr. C. pulled me off to the side, into a little side hall and wrapped his arms around me. He was hugging me trying to comfort me but at the same time he was actually holding me up. If he wasn’t there at that moment I would have been on the floor. My legs felt like jelly. THey felt like they were going to give out any second.

We then had to just wait. We went into the waiting room on the second floor. Where all of our family was there to wait with us. They had couches and tables and a big TV screen on the wall that had a list of all the children in surgery. Once your child went into surgery their name showed up on the screen. Once they were out their name came off the list, and dropped down to recovery. Mr. T. was the last name to come off the list. At first I could chat with people. It helped take my mind off of it. Then as the time went by I was less and less able to concentrate. They told us the surgery was going to take about 4 hours, in reality it took longer than that. At the 4 hour mark my heart started to beat a little faster. I kept checking the screen..his name was still there. I mindlessly flipped through magazines. I closed my eyes. I prayed.

At one point during the wait I heard from across the room another family’s anguish. A grandparent came rushing into the room, her voice shaking and breaking she asked “what happened? I don’t understand what happened?” another voice, a male voice,  answered with tears “I don’t know..they say she had a seizure but I don’t know” and then the male voice started crying. I cried with him. My heart was breaking just as his was. Our babies were back there in the hands of strangers and we sat there helpless. Mr. C. had been trying to nap and when he opened his eyes he saw all of us crying because of the pain we were overhearing. He panicked and sat up and said “what’s wrong? What’s wrong??” I couldn’t sit there anymore. I was in too much pain at that moment to listen in on another family’s pain. I couldn’t process my own feelings and needed to be by myself. I walked out of the waiting room across the hall to the chapel and just sat there in the quiet. It didn’t feel like a hospital for just a moment. Mr. C. came in and sat beside me. We sat there silently together until we both felt ready to go back and face our reality.

For the last hour of Mr. T’s surgery it felt like my eyes were permanently glued to the door. Finally…finally after what felt like forever, Mr. T’s surgeon came through the door. She still had her scrubs on. She sat down with us and asked if she could talk in front of everyone. We shook our heads yes…then the most amazing words came out of her mouth “the surgery went well”. I let out a sigh of relief. Mr. C. let out everything I think he’d been holding in all day and he started crying. He hunched over on the couch and shook and cried. The surgeon went through everything with us. I knew that I had to keep it together because Mr. C. couldn’t at that point so I had to be strong and listen to everything the doctor was saying. She explained what they did. She drew pictures (which I still have) she explained how she sewed him up and that she stitched in a breathing tube. I asked some questions but mostly just listened to her. When she was done I wanted to hug her. I wanted to grab her and ask her if she had any idea how important she was??? If she had any clue that she not only saved Mr. T’s life but she saved my life too. I would have died if anything happened to him. In saving my son she saved me too.

Finally she got up and let us know that we would be able to see him in an hour or so. Once she left Mr. C. was able to pull himself together and everything that I had been holding in came out. I collapsed on Mr. C. and again let out loud, uninhibited sobs. I shook. I wailed. My emotion was so much so that our family left us with our parents. I think they felt that we needed to be alone with our grief. I didn’t notice they were gone until I was done. I don’t know how long I cried. I do know that when I was finally done and I quieted down I heard cries coming from beside me and I looked up to see my Dad crying. My Dad who I’ve only seen cry a handful of times in my life sat there out in the open and cried. My parents later explained to me how the pain they felt was two-fold. They were in pain watching their grandchild go through such an ordeal but the pain for them also came in the fact that they were watching their child hurt as well.

We sat there quietly together while our tears came to a stop. Another doctor in scrubs came to us and asked if we could come with her. She took us to a back room. I felt relieved because we had just heard that MR. T. was doing ok but I felt afraid because this doctor was taking us to a private room. This couldn’t be good. She explained to us in a long drawn out process that Mr. T had some complications due to the anaesthetic. In a long round about way she told us that his heart had stopped. That they had to manually compress his heart to start beating again. That he was ok now and that they were watching him but that they needed to advise us that this had happened. I think at the time I didn’t really even realize the gravity of this, I was just so focused on the “he’s ok now” part. It was only much later, days later that I sat back and said to myself…wait a minute…his heart stopped. His heart stopped beating! A whole new panick set in.

When we were finally able to see Mr. T. he looked like he’d been through hell. He was bruised. Especially around his mouth. He had a breathing tube in that was firmly taped to his face. On the tape the doctor’s/nurses had written “DO NOT REMOVE”. They explained to us that moving that tube could cause damage to his surgery site and it needed to stay in place until his wounds had healed. ALthough he looked like he had been through 12 hard rounds he was here, with us, and his healing was beginning.

Later that day we sat with family in the cafeteria of Sick Kids. I was mostly silent. Firstly because of exhaustion. I don’t think one knows how much emotional trauma exhausts you until it happens. Also because I really hadn’t slept much. Lastly because I had just given birth 4 days earlier. My body was trying to heal but how could it heal when my heart was literally breaking? It would take quite a while for my body to heal from Mr. T’s birth. I think now that it took such a long time because emotionally I was dying inside. My body couldn’t put all its energy into healing me physically when it was trying to keep me emotionally alive at the same time.

Minutes turned into hours, hours turned into days and Mr. T. fought. He fought with such strength that he amazed us and the doctors. They told us that after a surgery it could take a few days for him to poop, but that we were looking for a poop because that meant he was getting all of the drugs out of his system. He pooped within a few hours of surgery. His breathing tube was supposed to stay in for at least 5 days they said, we came in one morning about 3 days after his surgery and his breathing tube was out. The nurse let us know that they had an incident overnight that night. Mr. T. had decided that he didn’t want his breathing tube in anymore and pulled it out himself! The doctor came in and said to us, well I guess he didn’t need it and we weren’t listening so he took matters into his own hands. Every aspect of MR. T.s recovery came faster than they said it would. He has proven himself a very strong boy.

As I stated before the beginning of Mr. T’s life was both the best and the worst time of my life. The day of his surgery is a day that I don’t ever want to relive. It changed me. Who I am. How I live my life. Where I want to go with my life. So tell me, how do I begin to explain that to Mr. T? When he asks what happened to my neck mummy? How am I supposed to convey how deeply that little scar on his throat affected our lives?

Truth is I don’t think I’ll ever be able to fully convey the depth of what I feel about that incident. How it changed to whole direction of my life. I will try my best to make sure Mr. T never forgets how lucky he is. That he always shows his gratitude to the Hospital for Sick Children and that lives his life giving back to people in need. People were there for us when we needed them and we can’t forget that. I will print this blog and keep it for Mr. T so that one day, when he’s old enough to understand, he can read it. Maybe when he’s a father himself. Maybe then he’ll be able to take in just how painful it was. Just how difficult it was. Just how strong he is.

All I know is that for now “The doctors saved you and left you a little mark on your neck to remind you how special you are” seems to be enough.  I will let that be enough, for now.

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