An unseen beauty in the ordinary

There are times in our lives when something that seems so very ordinary contains an unseen beauty. A beauty that may not be seen by the naked eye but that beats in someone’s heart, that is felt deep within a mother’s soul.

Recently I had such a moment. From the outside it may have seemed like nothing special but if you looked closely you would have noticed the twinkle in my eye, you would have felt the pride emanating from my heart and known the smile that spread across my face was expressing an unknown delight.

It wasn’t a huge event. We were sitting at story time during our family birthday trip to Great Wolf Lodge. The wonderful animated story-teller was engaging all the kids sitting on the floor in front of her and asked everyone to scream out their names. She counted down 1…2…3 and pointed to the kids. A loud, enthusiastic burst of names echoed through the lodge. You could barely make out syllables through the deafening noise of these wired children. I clearly heard Mr. T. scream out his name, because he was sitting right beside me or so I thought. The story-teller congratulated all the little ones on a job well done and said “I heard a ‘aaaahhhhrrrrrrr’ from one side of the room and a great big ‘Mr T!!!’ from the other side of the room.” All the parents in the room giggled and looked at Mr. T. smiling and agreeing with each other. A mother sitting right near him patted him on the back while she confirmed “it’s true all I heard was a thundering MRRRR TTTTTTT”. Mr. T looked at me with a shy smile, slightly embarrassed for being singled out but just that little bit proud as well. His eyes searched mine wondering “am I going to get in trouble for screaming” Most likely cause at home I’m constantly telling him to please lower his voice, stop screaming, use your indoor voice.

Chastising him for doing exactly as he was asked was the last thing on my mind. I beamed with pride as my mind replayed a scene from shortly after he was born. As clear as day I could put myself back in that NICU exactly 5 years before. Standing beside his little incubator listening to Mr. T’s surgeon explain what she was going to do the following day. My mind was fuzzy, I was exhausted, my eyes burned from what seemed like an endless flow of tears. I tried to concentrate as she explained the procedure and recovery. It was hard to focus I must say but I know she was confident that she would be able to fix this. She explained what this would mean for Mr.T’s future, the complications he may face in the years to come and somewhere near the end of the list she told us that Mr.T was probably going to be very quiet. She explained his voice may be raspy. She assured us he would be able to speak but that his voice just may not get very loud. I remember Mr. C. saying “I guess he’s never going to be an Opera singer” and she chuckled “No I doubt that will happen”

In those first weeks I didn’t think much of it. We were just so focused on Mr. T. making it through his surgery and then healing, learning to eat, gaining weight and finally coming home. Him being quiet was the last on our list on things to worry about. We did notice he was a bit on the quiet side from the very beginning. It was actually the first thing I noticed when he was born. His cry sounded muffled. It wasn’t loud and angry at all as I had imagined it would be. It was soft and quiet and sounded pained.

Here we are 5 years later and his beautiful voice echoed through the lobby of the Great Wolf Lodge singing loudly above the cacophony of giggling children all screaming their names. My heart swelled with pride as our eyes met and it was like we were silently, secretly giving each other a high five. I was trying somehow to convey to him that not only was it ok for him to be loud in that moment but that he has made me ridiculously proud. 

No one around us knew our journey. No one understood the significance of his little voice being heard above all others. No one knew just how far he has come. To everyone around us he was a perfectly healthy rambunctious little boy. No one but me saw the tiny little baby laying helpless in his incubator bruised and tubed fighting the strong fight.

The beauty of the moment was felt deep within my heart, right down where I store all of the memories of our emotional start. I pulled Mr T close to me, gave him a great big hug and kiss, tears filling my eyes. Mr. T looked at me a little confused and concerned, why was I crying he wondered. I pulled Ms. J into our little family hug (Mr. C. was icing his sprained ankle..another story in itself!) To the outside world this was just a regular everyday moment. A normal child being loud. To us this was a beautiful moment shared as a family. A wonderful reminder of how far we’ve come and of how strong we are as a family.

5 years my beautiful loud little boy and you have already come so far.

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Adventures with Mr. T.

He’s starting to ask questions. Our adventures to Sick Kids aren’t just him trailing along for the ride, waiting for the treats and surprises, dealing with the unpleasantness in stride. He’s remembering. He remembers last time he was here he had to have needles, blood drawn, tests that hurt him. This time, the entire drive, he asks “no needles this time right Mummy?” “No needles this time Mr. T.” I assure him.

He makes me proud. He smiles at the child in the wheelchair, he says hello to the bald child pushing the IV around, he doesn’t even flinch at the severely disfigured child in the elevator as they both peer out the window marvelling at how high they are going. He makes me proud.

We sit in the exam room waiting for the Doctor with the results of his xrays. The xrays we just had done down the hall. We play I spy. We tell stories, each of us taking turns telling one line of the story at a time. An hour goes by. I let him play with my phone and he teaches me the game on his leap pad.  Another hour goes by. He’s tired and bored. He lays on my lap and asks me to tickle his back. I don’t know when it happened but at some point his body has turned into the body of a little boy. No longer the chubby little baby or even toddler that fit quite snugly into my lap, his gangly legs now hang over the side while he tries to figure out what to do with his torso, eventually settling with arms around my neck as I rub his back. I’m in heaven as these moments don’t happen as often as they did when he was that chubby little baby. As the third hour approaches the first doctor comes in. She asks us questions, tells us things look good, assure us she’ll be back with the other doctor. The next doctor comes in, examines Mr. T. Again, I’m proud. He does as he’s asked. With no sign of fear. The doctor speaks to the intern. Showing her; “see minimal change, which is good” he says. I smile and breathe a little sigh of relief. He looks at me and says the same but then adds “there is quite a good chance he will need surgery again in the future” My ears ring, as though I’ve been slapped in the side of the head. My head spins as I watch his mouth moving but barely hear the words coming out of his mouth. I hear “we can’t know yet” “‘everything as is for now” but I’m stuck on “surgery in the future”.

We get up and I thank the wonderful doctors.  With an awkward smile on my face we shake hands. Mr. T gives them a high five.

As is our routine, we go for lunch, Mr. T. opting for a cheese bagel and cream cheese and a fruit smoothie. We chat. He asks questions. “What room was I in Mummy?” “That room right up there” I say pointing at that 3rd floor window that was my home for countless hours. “And I was very brave when I was a baby in that room wasn’t I Mummy?” “You were one of the bravest boys I ever knew” I respond watching the smile spread across his face.

As we eat I remember those hours spent in that room. I remember each night I had to leave him there and how horrible I felt doing it. I watch his little face oblivious to my memories or my fears for his future. I realize something sitting at that table. That every moment of those first 6 weeks of his life has shaped every decision I have made since where he’s concerned. Mr. T. is four and a half years old and has never slept anywhere without us. Not that there hasn’t been offers, the grandparents would love to have him. Mr. T. and Ms. J. just haven’t seemed to want to. What I realized sitting there in that hospital looking up at that room, is that I’m ok with that. After the pain that I felt leaving Mr. T. in that hospital every evening, my heart tells me his place at night is with us. Sometimes I would like to sleep in past 7:30am but it’s a sacrifice I agreed to make when I had children. If the time comes and either of them want to have a sleepover I will have a decision to make. Until then I will snuggle them goodnight every night that I have with them. For all those weeks I had no choice but to leave him all alone, and go home feeling an emptiness inside. If I don’t have to do that now why push it?

For now I hang on to each second of this beautiful ride. It’s flying by. Gone is my baby. He’s been replaced by this incredibly strong, intelligent, beautiful little boy and is morphing, as we speak, into a young man. What the future holds I don’t know. My heart wonders how I will get through another surgery but if that’s the path we are meant to take we will get through it together. He is strong and he makes me stronger.

Until we get there we will continue our adventures and I will answer his questions. “Which Doctor saved me Mummy?” “Dr. C. and she was amazing” I say. As his questions grow more complex so will my memories. They will intertwine with each other retelling him his own tale. Together we will put together the pieces of his puzzle.