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

12 months, 55 days later

IMG_5478

Wow. What a really bad selfie. Why on earth would I post this? I am sharing it because I want you to know what devastation, loss, intense grief and sadness look like. This is me longing for my daughter. Wishing her back. It is a picture important to share because I am not interested in hiding how I feel. It is raw, in the moment and unedited – just like this blog post.

What is it about grief, sadness, extreme loss…depression (gasp!) that people seem to shy away from? Why does it seem so hard for many of us to wrap our arms around those people and show great patience, compassion, and support (beyond just texting about it). I think it is because it takes a lot of energy and time. Both very limited commodities in our very busy lives. It also takes a great deal of compassion.

I am grateful. Grateful because I have that support from very key people in my life. I am getting the space and time I need. I have had the attention and people following up when I have gone ‘quiet’. The friends who know the right thing to say, and when to say it. The friends who continue to reach out, even when I don’t answer, or repeatedly say ‘no’. The friends who sit with me and listen.

It is powerful, and I am grateful.

Kate’s loss rocked my world in many ways. I functioned in a state of shock for many months after. I couldn’t process that she was gone. Honestly, I still feel like she’ll come back, or I can bring her back. Like I am waiting for her.

The incredible amount of time, physical energy, cognitive energy, and emotional energy it took to parent Kate and take care of her left an incredible vacuous void in my life. The routine and relationships we had developed with her medical teams and our children’s hospital were wiped from our calendar. The relationships with therapists, schools, pharmacists, caregivers, nurses, personal support workers ended abruptly. The regular, ongoing advocacy and coordination of care to ensure this complicated little girl got the help she needed to live a full life had gone quiet. The intense medical needs of the last few months of her life just stopped.

I was exhausted from 8 years of intense caregiving to a happy, active little girl who was chronically unwell and medically complex, but when I closed my eyes I couldn’t sleep. Extreme exhaustion and sleep deprivation had put me into a state of insomnia. My body couldn’t adjust to the adrenal overload high I had been riding to simply keep me functioning day to day. My mind couldn’t settle from the trauma of the last 9 months of Kate’s life – what she had endured, and what we had experienced.

And with all this, I miss my daughter. The little girl I brought into this world. I love her and would do anything for her. I wanted so much for her. I miss her smell, her soft hair, the laughter in her eyes, her giggle, her soft hands, her hugs, her voice, the feel of her body when I held her. I could go on and on. In my thoughts I do, every moment of every day.

I talk to Kate often, usually she comes to me, and her words bring tears to my eyes. I know she misses me as much as I miss her. I know she left us too soon, because of decisions and under circumstances that I feel could have been different. I know she suffered because those charged with caring for her did not always do their best for her. Those thoughts haunt me. They cycle around in my head and they are constantly present.
It has been an intensely complicated grief. I would need time. A lot of time.

I cry. A lot.
I am slowly regaining my strength. But it has taken an incredible amount of time, and patience. Having the courage to be patient with myself, and understanding that I am forever changed is something I have had to learn, accommodate, assimilate. There are things that I no longer enjoy. There are situations that are uncomfortable and that I now avoid. There are people I have had to forgive, knowing that what they did was not ok. There are some things that are not forgivable.

There are also days that have some laughter, some light. I love being a mom. My children mean the world to me, and the relationship I have with my son Jack is one that I treasure beyond anything else. Time spent outdoors, connecting with this world and myself, running, skiing, cycling, yoga, surfing and more. There are moments when I think of Kate, ‘wouldn’t she love to be doing this’, and they are happy and reflective of her time in this world. There is some light and that is what I work on every day. Moving toward that light and the love, energy, and people that reside there.

I am writing this post today because on this day many of us are talking about mental health. I want to add my story, because story telling is how we share and learn best. This is a truth.

I want other complex care moms (and dads) out there to know I understand. I get it.
I want you to know you can call me. I will listen. I will try to guide you based on my own experience.
I want you to know that you are not alone and there are people who will listen, sit with you, hold your hand. Keep asking until you find that person. You will know them when you find them. They are the helpers, the ones you can lean on, the ones who will come without you even asking.

Don’t try and do this alone. It is too hard.

Thank you to my helpers, the ones who listen and continue to be there for me.

 

Julie