February

February looms. Time marches inexorably into February. How are we going to get through February? Already a hard month to endure in the endless winter of Winnipeg. It seems doubly so this year.

We passed a threshold last Sunday. Sunday January 25th. Well not the 25th in particular, rather the celebration of Henry's mother's birthday - Harry and Lydia's Beppe's birthday. Her actual birthday is the 24th. Last year we celebrated it on Sunday the 27th. This year we celebrated her birthday together as a family by going out for dinner. We always end up sitting in these little protective groupings, together but not 100% together. A nested holarchy of family? We were seated at a big round table in a nook at the back of the Chinese restaurant in the strip mall out in the suburbs. Sandy and Gary sat like protective sentinels around Gwyn. Grace, then Dave on Sandy's left. Kathleen then Gareth on Gary's right. Three spots, only ever three spots now, for our family of four. I looked at those three spots waiting for us at the table and inwardly sighed, Harry’s absence a huge unspoken presence.

I try to joke with myself, “Angel Harry will have to sit on his Dad's head again”.

It is the weirdest feeling of back to the future. We were a family of three for 3 years, 4 months and 4 days. Then Harry came and we were a family of four. His life passed so quickly, over the threshold of life, over the threshold of cancer, through the spinning door of death, and boom, here we are again, the three of us our heads spinning, the doors whirling behind us. Back to being a family of three. But not ever again a family of three.

But back to last year, last year we had everyone, including several of Grace's siblings, over to our house for tea and cake. Henry and I recall it so clearly: for us this marks the last family event where we remember Harry as truly being healthy.

You might remember, the very first picture of Harry Gareth put up on the blog, was taken on that day. Harry was standing in our living room, holding onto our big wooden chair, with his trademark huge grin on his face. His laughter echoes in my memory. Harry in his world of delight, showing off for all the rellies, pushing around his "hippo car", so close to walking on his own.

For us, it now marks a door. It is the door between two of our worlds - on one side is the world where Harry was just Happy Harry, a healthy, thriving 10 months old baby boy. The other side of the world is the world of cancer. The world where our baby has cancer. It still seems so surreal that we ever walked through that door.

Although Harry had not really been displaying any overt outward signs of illness yet, when I look back at the photo from that day I notice that he looks pale, his skin has a slight yellow tinge, jaundice I suppose. We didn't notice it then. Who isn't pale in Winnipeg in January?

I have gone over and over and over in my mind, wondering what kind of mother doesn't notice that her baby boy is getting sick. Not just sick, but actually, as we would find out, on the very edge of death. How can the rarest and most aggressive of all childhood cancers have been growing in my son and yet he was never sick, never even had a cold?

So how does one get through a day like last Sunday?

The milestone. It is the first thing you think of when you wake up. You know the way your child comes into your room when you are still sleeping and stands right beside your head, trying not to be too noisy, but in the effort ends up breathing heavy in your ear as they whisper, "Mummy, are you awake?". You actually are awake, you awoke the first moment you heard the thud of their feet leaving their bed and hitting the bedroom floor …

… In the way that only a mother wakes up, it starts when your newborn is first placed in your arms, something that gets switched on in your head during childbirth. Doesn't matter how deep of a sleeper you were before you had kids (and I could sleep through an alarm blaring right beside my head for half an hour, minimum, much to the frustration of my housemates in University) you now wake up the instant your baby sighs too heavily, or grunts too deeply - even if they are sleeping down the hall two doors away. In fact, the connection goes so deep, you often find yourself waking up in the middle of the night, not quite sure why you have woken up, but in a moment you know why, because you hear your baby cry for you. Your body knew they needed you even before your brain did ...

… You followed the patter of their feet across their bedroom floor, waited for the sound of their door opening, their movement down the hall, opening your door ... it’s the same thing with the milestone. Something wakes you up, in the first instant you are not quite sure what it was, then in the second instant you know, and there it is, standing beside your bed, whispering in your ear, "A year ago today was the last day that you remember Harry being truly well".

With your child, you reach over and pull them into the middle of the bed, to nestle in between you and your partner, to get a few more minutes of sleep before they realize they are fully awake and demand to be taken downstairs to start their day. With the milestone, you reach over, pull it over your head, and prepare to wear it, a weight around your neck, all day long.

You feel it next to your chest, rubbing. Not entirely uncomfortable, but annoying nonetheless. You resign yourself to it being there all day. Sometimes as you go through your day you don’t even feel it or notice it. You are absorbed in the moment with whatever little thing you are doing. Other times it is so heavy, it takes all of your energy not to sit down on the spot and dissolve into a sobbing, shuddering heap of tears. Some times you do just dissolve into that heap.

That’s usually when a shadow passes over Lydia’s face, anxiety, concern, worry, but something else too. The, “what the heck is your problem Mummy” look that only a child can give their Mum. Lydia will ask, “Why are you crying Mummy (Daddy)?” and we’ll answer, “Sometimes Mummy(Daddy) just feels so sad about Harry and needs to cry”. And Lydia will say, “Don’t cry Mummy, Harry is here with us right now, don’t you see him? Come on Harres-sa-bears-sa, let’s go play in the living room”. Her blond head turns and she skips away.

It often isn’t quite as bad as you imagine it will be in your head, in the days leading up to it. Though sometimes it is worse. Like New Years was, or Christmas. I’ll tell you about them another time.

And so all through Sunday, off and on I thought about that Sunday a year ago. Wondered, what was going through my head that day? Did I hold Harry close enough? Did I give him enough hugs and kisses that day? There was another picture on the blog, of me holding Harry, him nestled in my left arm, perfectly balanced on my hip. I know I hugged and loved him that day.

Struggling through church in the morning. One day, I swear, Henry and I will make it through a church service without one or both of us reduced to tears, just not yet. So struggling through church again, trying not to look at the baby boys (why are there so many baby boys at our church?) bouncing in their mum’s lap, peering over their dad’s shoulder, crying to be nursed, snuggled into a warm breast, their wee body melded to their mum’s, the sound of the rhythmic sucking tugging at my heart. Through coffee hour. Watching the toddler boys chase their older siblings through the forest of adult legs in the Junction at coffee hour. I look in vain for a blond head of curls that should be chasing his big sister off to play at the ‘hidden door’ that leads from the hallway / secret passage into the front of the church. Listen for a giggle I won’t ever hear except in my memory. Put on a brave face as kind friends ask how we are doing.

Home again for lunch. I try to recall, what did we eat for lunch a year ago? I can’t remember. I didn’t know then I would feel such a need to remember now. To try to trace out each step, catch each whisper, each faint ghost. I go and play soccer at 15:30.

I had almost forgotten how much I love playing soccer. I joined a women’s recreational team back in October. One of the mum’s from my mum’s group, has played on the team for years. I’ve wanted to join for a while but never had the time; now I have the time. The first few games I nearly keeled over, I was sucking wind so bad. Didn’t get much exercise in the past year, sitting beside a hospital bed, or holding Harry all day long at home. But it really is incredible what the body does remember. I’ve played for so much of my life that being on the pitch really is second nature. I know how to move, where to run, how to pass, without really thinking about it. I scored my first goal the first time I touched the ball the first game. A nice gift of encouragement from the universe. My attitude has changed, since Harry died. I used to get anxious, was I going to be good enough in the game? Would I let my team down? Would I be benched for not performing well enough?

Some of the anxiety is senseless – in a rec. league where everyone plays – but I am filled with the thrill of the game, love the rush as I go for the ball. The moment I feel tired I remind myself, “remember how much you love doing this, enjoy every minute of this game”. And I do, do in a way I haven’t for years. A gift of learning from Harry. In that hour I am simply in that game. I don’t think of Harry for an hour. I just think of playing and winning.

Well that isn’t quite true. I don’t think of Harry when I am on the pitch. When I am on the pitch I am completely in the game. But as soon as I am on the bench for my breather, Harry jumps back into my head. No one on the team, except my friend, as far as I know, knows anything about Harry. I’m just a woman who comes out and plays for 50 minutes every week. No one asks me about my story. But I play it in my head, especially during breaks.

It is the same story I play in my head when I walk down the street. Or when I know I am going to be meeting someone new. Something I practice saying a million and one different ways in my head. So that when I am asked, it will come out sounding natural, not all rushed, halting, and awkward. That question I am sure someone will ask one of these day. It always comes up in any group of women. “Do you have any kids?” “How many kids do you have?”

I cannot, will not, answer, “One”. To do so would be to deny Harry. Judas-like. To deny that he was born, lived, laughed, loved for sixteen incredible months. He was my son, is my son, always will be my son.

So I practice saying it, over and over in my head, “Oh, two, my daughter Lydia is five, my son, Harry, would be 21 months old, but he died in August of cancer when he was 16 months old”. Or maybe, “Two, Lydia is five and my son, Harry, he is an angel now. He died when he was 16 months old in August”. Does that sound right? How about, “Two, one living, she’s five, and her baby brother died a few months ago, he was 16 months.”

No one on the team has asked yet. So I just run scenarios through my head as I sit on the bench. Different ways it may be asked and different ways I might answer. So that in that moment, the moment I am sure will come, I’ll be able to say it and not break down in tears.

But that moment is not today. We win our game (3-1. I scored one goal and assisted on the other two). Off the pitch, back to the dressing room. Casual chatter. This time about the goalie on the other team that injured herself going up for a header against one of our players in the last minute of the game. Smile on face, pulling on my clothes. The script running through my head, “I have two children, Lydia and Harry, but Harry is an angel now”. Walk to my car by myself. Phew, a mixture of frustration and relief. No one asked ‘the question’. I half want someone to ask it to me, so I can hear how it sounds when I finally say it. But not today.

Today it is back home, to Henry and Lydia. To our house, the house where Harry lived. Time to shower, then head out for dinner. I’ve almost made it through the day.

Dinner. Henry, Lydia and I take our seats at the big round table. Lydia sits between us, me beside Gareth, Henry beside his Dad. We complete the circle of the family. But the circle will never again really be complete. The food comes and I am consumed, as a mother always is, with managing Lydia eat. “Watch your glass” (pull it away from the edge of the table). “Try your broccoli. You love broccoli. No, there are no funny little bits on your broccoli, it is just like home.” (Help her with a spoonful). “Try the chicken. You love chicken. No it is not spicy. Yes, Mummy is telling the truth.” (Help her with a forkful). “How about some rice, you love rice.” “Okay, let me just finish a bite of my food and I’ll take you to the bathroom”. “Lydia, please be careful as you run through the restaurant, watch out for waiters and trays of hot food”. “No, we don’t know those people.” “No, I don’t know what they are talking about.” “NO, I am not going to go over to them and ask them what they are talking about; it is none of our business.” “No, I don’t know who is the oldest in the restaurant.” “Yes that man over there very well could be the oldest in the restaurant”. Sigh. “Yes, I think both of our waitresses are Chinese.” “No, I don’t know if they are 100% Chinese. They could be half-Chinese. No, I don’t know 100% for certain that they are only half-Chinese, and NO, I am not going to ask them. They are Canadian Just Like You”. “YES, I do think we have the biggest family group here”. “No, I don’t know why they seated us at the big table at the back of the restaurant instead of the big table at the front of the restaurant”. …

Would you believe that through all of that I do still have time to wonder what finger foods Harry would be enjoying, were he here with us? Where would his high-chair be? How long would he sit still before we had two kids running through the restaurant and we gave up, gobbled up the rest of our food, called it a night and headed back home?

Home late for Lydia. 20:30. Past her bed time, so it’s straight upstairs to bed. Harry’s room an open door at the end of the hall, matching the open wound in my heart. The bedtime ritual. PJs, pee try, the three of us snuggle in bed for a story or two, Lydia drinks her milk (we’re FINALLY done with bottles with her, her New Year’s resolution). Wipe face, brush teeth, second pee try. (A few months ago she had a very rare accident in the night, hasn’t happened in at least a year, but as a consequence, we now have to do ‘second pee try’ every bloody night. It’s what she needs to feel secure, I tell myself, be patient, smile, breathe). Lights out. Cuddles with Mum and Dad. We say prayers, two prayers one in English, one in Friese. We ask Lydia what was the most beautiful thing in her day. We share with her the most beautiful thing in ours. Then Henry says, as he always says, “Mummy loves you. Daddy loves you. Harry loves you. Good night Lydia.”

And always, in my head, “Good night sweet Prince Harry”. We lie in bed with Lydia till she falls asleep, and every night I think of Harry. What would our bedtime routine be like if he were still here with us? Would I still nurse him to sleep? Would he have weaned himself by now? He and Lydia would be sharing a room by now (or so Lydia wanted). Stop thinking so much.

We tuck Lydia in, and creep out of her room. Downstairs. Henry and I talk about the day. Was it as bad for you as you thought it might be? No, it was okay. Phew. We made it through.

Now the next milestone. February. The whole bloody month of February. It starts in two days.

Walking On

There are so many things we want to write to all of you, our dear friends. So many times over the past months I have composed blog postings in my head. But have never found the energy to actually put fingers to the keyboard. There is so much of Harry's story, of our story, that I feel I need to get down, into actual record. One just has to start.

So here we go.

We have had a good fall. The days passed. Many in tears. But many in laughter too. Milestones (1 month since Harry died, 2 months, 3 months, 4 months, 5 months, Thanksgiving, Christmas, Lydia's birthday, New Years ...) loomed, were feared, endured, breathed a sigh of sadness and bittersweet relief when they had passed.

Henry is back at work. I have started my postdoctoral fellowship at U of M. Lydia is thriving in Kindergarten. Not a day goes by that we don't think of our sweet Prince Harry. If I am not actively engaged in thinking of something else, my default mode of existence is to think about him. I wonder if that will ever change?

Grief is an odd thing. It can be so huge, all-consuming. It is something living and breathing on its own, or so it seems. It shrinks and expands all the time. Sometimes it threatens to overwhelm us. Sometimes it is small, manageable, fits comfortably in my pocket.

It is always there, somewhere, hanging around. But I can say with much certainty. I would rather have this grief, than to never have had Harry at all. If fate should offer, "Here, I will take away your grief, but in return, I take away all memory of Harry". I would turn away, reject the offer outright.

The old saying IS true. "It is better to have loved and lost than to never have loved at all."

I need to get back to work. But I wanted to at least start, today. So that tomorrow, I've started up the hill of writing down our story with Harry.

We know with certainty that love never dies. Harry no longer wears "his little overcoat of a body" as my teacher Kimberly says. But he is near, always, just around the corner. Maybe you have felt him too?

Love and light,
Cynthia