April 2018

It was my birthday last Thursday, April 12th. 

I was born April 12th, 1972.
I’ve achieved Level 4.6

There is something about birthdays, anniversaries, special dates that weigh heavily on families who are bereaved. It’s a melancholy time for me. 

I sense these special days coming days before they are here, like a persistent pressure in the back of my mind, pressing on my soul, reminding me that time is passing and I am further from the life we lost. Keeping me awake at night and reflective during the day. Memories both flooding and simply ebbing and flowing across my mind’s eye.

These dates, which are supposed to be celebrated, aren’t fun for me. I simply want to turtle (see my Turtle Turtle post for context) and hide away from them. Let them pass with as little fanfare, recognition and drama as possible. I try to numb myself a little. It hurts to know that I am growing further away from where she and I existed together. The additional turn around the sun is as painful as a burn on my soul. It heals over the year, but I know it will come back around again.

At the same time, in a strange way – and not morbidly – I know I am closer to being with her. The passage of time is a comfort in a way. I am closer to a time when I’ll be reunited with her.
I don’t want that to sound strange to you. Or cause you to be scared or worried for me. It’s simply a feeling, but it is real and it brings me some peace to be honest, without wishing my life away.

I have always held my birthday a little sacred. My birthday is my personal day. I always booked the day off work and set my sights upon doing something I had never done before. It could be as simple as a new running route, a significant vacation, or something new to experience. I set that goal of a new experience to remind myself to try and ‘seize’ life as we are often counselled to do. To “live life to the fullest” (no pressure there). I wanted to remind myself that life is vast, and to remind myself to ‘experience’ it.

It’s amazing to me now how limited experiencing something new is. It really doesn’t matter, and it really didn’t make a difference for me.

 

My 43rd birthday was spent in isolation with my very sick child after her bone marrow transplant, separated from my 10 year old, far from home – scared and exhausted. That was an ‘experience’. Did it mean I was living life to the fullest? It made me realize that simple, same, routine were also valuable and something to be cherished.

To be honest, some days living life to the fullest for me is as simple as getting through the day.

Nonetheless, I have continued with that tradition of a day I devote to me, and I don’t feel any pressure that it has to be particularly spectacular. It’s just a day where I do what I feel like doing.

And I’ve continued with the tradition of doing something new. A challenge to myself to keep moving forward and to try and find a space where I can exist on these passing birth dates with a little bit of inspiration or maybe it is just habit. 

 

I’m an Aries – first sign of the Zodiac, described as “continuously looking for dynamic, speed and competition, always being the first in everything”. 

At least that’s what you find when you google Aries. I think I still carry some of those fire sign characteristics, but the edges have been worn down for me. Like the ocean against the rocks. Not dulled, but softened by a unique and inconceivable perspective, and the strength of repetition and reality of forces greater than those I can control.

I work hard. I have high expectations. I am determined. But my perspective on life and what is important when it comes to “speed, competition, and being first” is quite different. It’s not something you can learn. You have to experience profound tragedy and suffering to understand. 

I am a curious life spectator. I watch others from my bubble with a curiosity I did not have before. I find myself observing with jaded interest what others find to be important and where they place their energy. Their conversations are a curiosity to me and often feel alien to my ears, like I can’t absorb or understand what they are saying. My senses are a little numb but also extremely heightened from that constant erosion from the waves of grief. 

Intensity is not the same for me as it is for others, and my ability to sustain it has changed. I sometimes feel a need to let others know what I am sensing, feeling, understanding and then realize it is impossible. The few who understand, who are capable, are a select secret society that no one on this earth would ever want to be a member of.

They understand what it feels like to circle the sun without their child by their side. They understand devastation and that pull of not wanting to be here contrasted with the visceral need to survive somehow.

Maybe there is an ‘Aries light’, or ‘Aries eroded by tragey’ zodiac sign?
Maybe my Aries spirit is what is keeping here and moving forward?

 

I did do something special on my birthday. Something I’d planned for a special day on my calendar. A tattoo of Kate’s name, in my own writing, on my left wrist. I wanted it there so that in prayer Kate would be at my heart centre, where she exists every moment of every day for me. That when I brought my hand to my heart, she would be with me.

I never imagined I would have something so permanent on my body. I am not the ‘tattoo’ type, and that is not judgement, it was simply not something that was necessary to me. But I felt a need for permanence and for closeness and proximity. It comes with the intensity of grief and the denial that exists within my  heart and soul everyday. I resist that she is gone. I wish her back.  I want her close. I want to feel her. This permanence of black and pink ink was a simple way of fulfilling that somehow. It’s intensely personal for me, and very public. The burning pain to place it felt – right.

Just the way Kate and I lived our lives as daughter and mother. 

 

Happy Birthday to me.
Level 4.6 achieved.
I wonder what is next and how this life of mine will evolve. At the same time, incredulous and a bit angry? disappointed? resigned? that life continues to move forward and my turns around the sun continue. That people live and die and we notice, but it is fleeting. That we are all striving for a sense of permanence.

Interesting, it has become not as important for me this need for permanence for myself. 

Wanting to achieve more. Wanting to slip away at the same time. Desiring permanence and impermanence at the same time. 

A tattoo of my daughter’s name on my birthday.

 

Kate’s last birthday. She was turning 7 and waiting for her ‘princess birthday’ guests (including Cinderella) at the door

Kate waiting for her birthday guests.

Julie

I Wonder

Jack has been wanting to watch the movie ‘Wonder’. We read the book together years ago. Bedtime reading was a regular routine of ours after I had Kate settled and into bed. It was a time for me to have time with Jack. I loved reading as a child, I loved reading to my kids.

If you’ve seen the movie ‘Wonder’ or read the book, you’ll know all about the main character Auggie who had Treacher Collins Syndrome. I have views on the casting for this movie, a story about inclusiveness, the judging of others, compassion for one another, where the lead character is a ‘typical’ child who sat in a makeup chair for several hours a day. Jacob Tremblay, the actor who plays Auggie Pullman, does an amazing job – but I ‘wonder’ if a child with Treacher Collins Syndrome might also have been equally amazing.

This was not the point of this post – but something I wanted to share.

The point of this post is the secondary story in the movie, the story of Auggie’s sister ‘Via’. She is an incredible big sister by all accounts. A champion of Auggie, a confidante, a cheerleader – she’s stoic and she knows that the needs of her brother supersede hers. He has greater needs, that are often more immediate. It’s just that simple. And this affects Via deeply, particularly when she is going through her own teenage issues and has that basic need of time and attention from her parents. Her parents are distracted and they are simply not available to Via. As you watch Via try to cope on her own, if you are a parent who understands that dynamic of caring for a medically fragile or complex child, your heart breaks for her with the knowing.

As ‘Via’ tells the story from her perspective, my eyes welled with tears. “Is this how Jack felt”? He was three when Kate was born and toddlers typically take a back seat to their infant siblings out of short term necessity, but often the balance is righted again eventually. That never really happened for us, or Jack. Kate’s health, mini-crises, big crises, changes in her needs, were all consuming.

Jack had access to many things, he had friends, I arranged playdates, he played sports…but it was different. The expectations around independence were different. I was often gone unexpectedly with Kate to the hospital – sometimes leaving for the ED in the middle of night. I was there with Kate over his birthday and Hallowe’en… Mother’s Day. Special days when that connection with your kids is so fundamental. Jack had to help a lot more than would be typical. He did a lot of the work of a caregiver to support me in helping with his sister. He understood this and he never questioned. It was normal to him, and as he grew older he took on more and more responsibility – often unasked. I also don’t ever remember it being an issue, but now I wonder if it was having an impact on Jack that I wasn’t aware of – or didn’t have the time or energy to attend to.

I know I am not the only one in this. It’s a common worry – a valid one – of many families with medically complex kids in their lives.

Our family settled into a life of revolving around Kate. She took up so much space in our lives. It was out of necessity. To take a line from Wonder, she was our sun and we were planets orbiting around her. 

Was I there for Jack? Was Jack a Subplot?

I’m not sure. I think I was. At the really important times, but did I pay careful attention, did I miss critical points to support him?

Recently we attended an event in Kate’s honour as a family. The boys did not want to be there – especially Jack. I thought it was important (I still do) that we were there together. But now I wonder if Jack needs to spend that time still orbiting his sister and her memory?

There has certainly been a lot of attention on Jack in the past while, but it has taken time. I was not a very functional mom for some time after Kate’s death. Jack is still vigilant of my energy, my sadness, my ability to get through the day. He watches his dad too. I know it, and it saddens me that this boy is still accommodating others so much. I am trying to teach him now that he can put himself first, he can advocate for himself, and that we are there for him. We are fully present. He is our priority.

Wonder has many messages. Powerful ones about what it means to be a friend, and what it means to have true strength. Auggie is the hero of the story, but when I watched it my eyes were on Via.

Julie