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Linked at the Cellular Level

My friend Donna Thomson, an author, fellow blogger, mother, often posts interesting articles on Facebook and Twitter that grab my attention. She writes insightful pieces about caregiving at all ages, respite, networking, and she shares intellectual articles about mindfulness, resilience, courage…
Today Donna shared a post by another author, poet and blogger, and as with many she shares, I found it truly inspiring.

Mother & Child Are Linked At The Cellular Level

Curious, I thought I would explore this phenomenon further.

Fetalmaternal microchimerism occurs where cells from the fetus pass through the placenta and form cell lineages within the mother. Amazing. Various types of cells have been indentified including immune cell lineages and stem cells. The potential for these cells within the mother’s body are not yet fully understood but there are several hypotheses. What caught my attention is the thought that “fetal cells home to injured or diseased maternal tissue where they act as stem cells and participate in repair“.

As the author of the article says, “The cells of that child stay with her, resonating in ways that mothers have known intuitively throughout time”.

And I have felt this. When Kate was here, I had a sixth sense, a strong and honed intuition about her and when she might be starting an episode, or when something wasn’t quite right. It was more than the eyes in the back of head as some moms describe how they can sense when their child is up to no good. As many have said, and as we continue to discuss, Kate’s ‘clinical presentation’ was never textbook, but I could sense when something was not right. My connection with her was so strong. I believe that connection helped me to be a better advocate for her than anyone else, and helped keep her safe. I also believe that connection let me know when things were going terribly wrong for her. And there is no worse feeling in the world than knowing something is wrong, expressing it to those who should help, and not being heard. This happened time and again for Kate over her short life. The curse of being so rare.

At the end of her life, several days before, my mother heart and soul were both in a panicked state. I knew something was going terribly wrong for Kate. I felt her slipping away from me. Was it that connection between the two of us again? Her little cells tugging at my heart, my brain, my soul? All I could think of was getting to her, getting her home and being with her. Unfortunately that took a heart-breaking amount of work, but it became a sole focus. I knew that Kate knew. She was telling me with her words, “home, home”, but I also felt it, an urgency to comfort her and to support her. I had never felt Kate was dying before despite many terrifying experiences. Those few days leading up to her death, I could feel it. And as she left us, I could only describe a sensation of her tearing away from me. A physical feeling of being torn apart from another, and feeling that she was physically taking part of me with her. It was incredibly painful – physically painful. Like part of my heart was being torn away.

Did we also have a connection of maternal to child microchimersim? Was our connection so strong that I was also a physical part of her? Or was my heart truly breaking – another phenomenon that affects mothers who have lost a child called  broken heart syndrome. I think perhaps it was both.

 

Now that she is gone, I have described to those that are close to me that I can feel Kate with me and sense her presence. There are moments when this presence is particularly strong and I can almost sense her touch and hear her words. Is it her, a biological part within me, reaching out?

I take great comfort that science has proven she is a part of me.I believe the hypothesis of Kate’s fetal cells migrating to areas of injury to facilitate healing.

How amazing to think my own baby might be helping to heal my broken heart.

 

Julie

 

 

Boston Marathon 2016

120th Boston Marathon

Monday, April 28th I ran the 120th Boston Marathon. It was my third Boston Marathon, my 7th marathon ever, and my first after losing Kate.

It wasn’t a great run. It was hard from the very beginning. My legs never felt right, and quickly became cramped and tired as I ran the challenging and hilly Boston course.
My plan was to enjoy this run. To take it all in. To feel Kate’s spirit and strength guiding me and propelling me forward. And I did ‘take it all in’, as best I could, but crossing the half-maraton point, I struggled and the last 5-6 kilometres were simply about finishing and putting one foot in front of the other. I couldn’t even feel disappointed about the pace I was setting, or stress about the time slipping away on my watch. I was in survival mode and focussed on doing anything I could to get to the finish line.

It was painful. It was a matter of reminding myself that my mind is stronger than I think it is. It was tricking my body to take one more step and distracting myself from how bad my legs felt.

It reminded me of all I have been through.
It reminded me of all Kate has been through.

It was too much, but I had no choice but to push through. (Really there is no other way to get to the finish line).

Many people had a challenging run at Boston this year. Even the elites posted times slower than usual. It was warm and there was a slight head-wind. I don’t think I can blame my performance on either. I knew I was slightly under-trained going in to the race. Grief is not a good companion to marathon training. But I did put the work in that I could. I did get out the door all winter – and I logged the miles – ran the hills – did the pick ups and tempo runs. I just didn’t have it this year.

As many of you know, I’d be typically disappointed with not reaching the goal I had set for my finishing time. This year, I was fine with what happened and how I did. I felt proud.

I have no idea what my future holds. I have no idea when I’ll find peace again. I have no idea when I will no longer cry every day, or wake up every morning thinking of Kate. Maybe never.

What running has always taught me. What sport has taught me, is that I am strong.  I can achieve what I set out to do. I can suffer and recover. I can push through pain. I can persevere. I don’t back down from adversity.

These are also lessons Kate taught me. She also taught me not to forget to smile.

I crossed the finish line at Boston and I did just that – smiled and threw my arms up at the air.

Julie

Running For A Reason #fightlikeagirl

A few weeks ago I was asked to interview for a local newspaper. The piece was focussed around International Women’s Day #IWD2016. It was an honour to be asked. It was a difficult interview to do. The author was limited to a 650+ word count and I wasn’t sure how she would tell ‘my story’ in that space. I think Bhavana (Gopinath) did a good job of condensing our 2 hour conversation. She describes me as a mother, advocate, and athlete. I think those three nouns describe me well. Here is what I might add to the article:

Julie is in an incredible amount of pain and lives most days moment to moment. She can’t seem to process the tragic loss of Kate. She feels the shadow of her little girl with her at every turn. Every morning she opens Kate’s bedroom door and says ‘hello’. Every night she closes it again and blows her a kiss  ‘goodnight’. Kate is there when Julie sleeps, and she is the first thing she thinks of when she wakes.

Julie finds peace and empowerment in supporting other parents to navigate and survive the complexity and frustration of a medical system, and community care that are not structured to support medically complex and fragile children like Kate. She wants to be a voice for change, and as she gets stronger she will continue to seek out the right opportunities to do that. Opportunities that are real, and where people within the system are dedicated to real change. 

Julie doesn’t want Kate’s death to be simply accepted. She would like to see learning happen, and the opportunity for growth of knowledge and skill in assessing, managing, and treating medically complex children.  She knows Kate’s death comes with a heavy lesson, and that one day there will be a better treatment for SIFD and mitochondrial disease, possibly even a cure. 

Julie runs because that is where she feels strong – and where she also feels pain. Her sweat conceals her tears. The burning in her lungs and in her legs reminds her of what Kate had to endure and her strength. She listens to music that inspired her all along Kate’s journey. Her running partners remind her of the people who have rallied around her family, and that she is not alone. Running in solitude gives her peace and the opportunity to live a few of the lessons Kate taught her – strength, endurance, living her best life.

 

On May 28th, 6 weeks after I run the 120th edition of the Boston Marathon , I will run the 42.2 kilometres of the Ottawa Marathon as part of Team MitoCanada.

This is one of my steps in building Kate’s legacy.

Team MitoCanada Ottawa will run in honour of Kate this year. Our trademark “Team MITO” shirts will be pink, Kate’s favourite colour. Over 100+ runners will participate in the 2k, 5k, 10k, half-marathon and marathon events to raise awareness and money for mitochondrial disease. All money raised at #runOttawa2016 will be presented on behalf of MitoCanada to the Children’s Hospital of Eastern Ontario (CHEO) Research Institute as they pursue research into SIFD and mitochondrial disease.

If you would like to participate as a runner, and help us fundraise toward our goal of $42,200, we would love to have you.

To donate to Team MitoCanada Ottawa Race Weekend, please visit my #runOttawa2016 fundraising page.

#fightlikeagirl

 

Running around the 5k race course at Ottawa Race weekend 2014.

Running around the 5k race course at Ottawa Race weekend 2014.

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Team Drury – Team MitoCanada Ottawa Race Weekend 2014

 

Julie

THIS.

I have been wanting to write. There are so many thoughts that come to mind, but the moment never seems right and the thoughts are too intimate.

It’s been 9 weeks and 2 days. I read this yesterday, it was written by Angela Miller:

 

Dear Newly Bereaved Parent

This will likely be the hardest thing you’ll ever do. Survive this. And eventually, maybe even thrive again.

At times it will feel virtually impossible. You’ll wonder how a human being can survive such pain. You’ll learn you know how to defy the impossible. You did it from the moment your child’s heart stopped, and yours kept beating. You do it with every breath and step you take. You’re doing it now. And now. And now.

Your fingernails will become bloodied from clawing your way from the depths of despair. Your spirit will grow weary from fighting to survive. Your eyes will cry more tears than you ever thought possible. Your arms will ache an ache for which there aren’t words. For a lifetime.

Your heart will break into a million tiny pieces. You’ll wonder how it will ever mend again.

But with every morsel of unspeakable pain, there is love. An abundance of love. A love so strong, so powerful, it will buoy you. You will not drown.

Others will say things that are intended to be helpful, but aren’t. Take what is, leave what isn’t.

Still, you’ll meet others along the journey who will get it without ever saying a word. Kind souls who will breathe you back to life again. Let them.

Years down the road you’ll tire of hearing the same advice and clichés, over and over again. Advice you don’t want or need. Everyone will try to tell you how to best “fix” your broken heart. The trouble is, you don’t need fixing.

There is no fix for this.

Eventually you’ll learn how to carry the weight of this pain. At times it will crush you. At other times you’ll learn how to shoulder the burden with newfound grit and grace. Either way, you’ll learn how to bend with the weight of it.

It will not break you. Not entirely.

And even if you don’t believe in hope– not even a little– hope will light the way for you. At times you won’t realize your path is lit. The darkness feels all consuming when you’re in it. But know the light is there. Surrounding you now. And now. And now.

Know you’re being guided, by all of us who have survived this impossible hell. You may not hear us, or see us, but we are with you. Beside you. Hand in hand, heart to heart. Always. Just like your child still is.

Above all else, know that no one can save you but yourself. You are the heroine/hero of this sad story. You are the one who gets to decide how, and if, you’ll survive this. You are the one who will figure out a way to survive the sleepless nights, and the endless days. You are the one who will decide if and when you’ll find a purpose again that means something to you. You are the one who will choose how you’ll live with the pain. You are the one who will decide what you’ll to cling to, what will make your life worth living again. You, and only you, get to decide how you’ll survive.

No one else can do this for you.

People will speak of “closure,” of “moving on,” of “getting over it,” of grief coming to an end. Smile kindly, and know, anyone who says these things hasn’t lived this thing called grief.

To lose a child is to lose the very heart and soul of you. It is overwhelmingly disorienting. It takes a long, long time to find yourself again. It takes a long time to grow new life around the chasm of such grave loss. It takes a long time to grow beauty from ashes.

There will always be a hole in your heart, the size and shape of your child. Your child is absolutely irreplaceable. Nothing will fill the void your child left. But your heart will grow bigger– beautifully bigger– around the empty space your child left behind.

The love and pain you carry for your precious child will be woven into every thread of your being. It will fuel you to do things you never dreamed you could do.

Eventually, you’ll figure out how to live for both of you. It will be beautiful, and it will be hard.

But, the love you two share will carry you through. You will spread this love everywhere you go.

Eventually, you’ll be able to see again. Eventually, you’ll find your way again. Eventually, you’ll realize– you survived.

 

2016

Today is one of the hardest days since November 30th. On the precipice of 2016 and realizing Kate won’t be part of this coming year.

A good friend asked me if I would continue this blog. I imagine I will, but I am uncertain what it will look like and what I will write about. 2016 will be a year of change and finding a new balance in my life.

The past month has been full of sadness, pain, longing, regret, reflection, solitude, exhaustion…I think of Kate every moment of every day. I can feel her with me in everything that I do. Just as she and I lived our lives the past 8 years.

I am grateful for Jack. He is my anchor in all of the chaos of emotions right now. He needs his mom. That is a good thing for me. Yet another role for him that is too demanding – but he is wise beyond his years and he knows when I am sad and sidles up for a hug or to hold me (role reversal). Over the past 8 years, he has done so much, learned so much, and given up so much. And here he is – my little man – giving so much more of himself again while coping with the loss of his sister. Proud is not enough to describe how I feel about him. Awe maybe.

I am grateful to Brian. Stoic and kind. He gave me the gift of time with Kate after she passed. Respectfully allowing me alone to hold her and cuddle her and be with her over that night and into the next morning. He has let me grieve as I need to. Not questioning, not judging, nor hurrying me along.

Many of you wonder ‘how I am doing’. I am not doing well, but I am doing my best. I am moment to moment in my days. I don’t feel the need to explain why I can’t smile, or can’t find the energy to talk some days. I am grateful for the words of support from all of you. I am ok with this place of solitude combined with selfishness. I am doing what I need, when I need it. Nothing more. I am grateful to those who are holding vigil for me – who won’t let me be alone for too long.

The days are quiet and long. Kate took up so much physical, emotional, and intellectual presence every day. I hadn’t realized how much. I knew I was exhausted, but coming off of the constant lack of sleep, extreme vigilance, and adrenaline of caring for Kate has been physically and emotionally challenging.

Brian and I have a lot more time that we have ever had before. We’ve literally sat in the living room and stared at each other. We aren’t sure what words we should speak. What happened? Who are you? What do we do now? Someone should get up and do something, draw up a med, clean up vomit, change a diaper, do laundry, call/email a doctor…chase after Kate. I wonder how our relationship will be redefined over the coming months and years.

It feels like we are both waiting for her to come back – that we are simply having a little reprieve from the busy-ness of caring for Kate, like one of her Rogers House visit. We are are both waiting for her and to step into our caregiving roles again. We would both pick up that role again in heartbeat to be with her.  Then, like a heavy weight, the realization comes that she is not coming back. And the sadness hits again.

We have slowly emptied our house of medical supplies, medications and equipment. We’ve made gifts of treasured things to a few of her friends. Some things we still hold onto. Her room remains the same. Her favourite books, her puzzles, her Curious George stuffies and dolls, her clothes and sparkly shoes. I think that space will remain untouched for some time to come. It is a room I like to visit often – and sometimes I open the door in the morning just to say hello to Kate. I can see her there in her bed, hair tousled, face puffy from sleep, signing ‘Good Morning’. I can feel her presence in that room, and her ‘smell’ in her dresser drawers – and that is a good thing.

 

There are no words for the loss of a child. I’ve heard that said before by others. It is true. I was bold and confident in my belief that this would never happen to Kate. I believed in my heart that she would get through this. I believed she was different, that her strength and courage would pull her through. I believed if I was strong enough, determined enough and vigilant enough – I could pull her through. I was not naive in knowing this would be a very difficult thing for her, but I was shocked at her death. When she came home Saturday, November 28th, no one expected she would be dead 48 hours later. Not our strong and stoic Kate. I struggle with the worry that maybe more could have been done, and then remember the gift of getting her home, the shock of realizing she was dying, and supporting her in the last couple of days of her life.

Her death is a tragedy. It was not expected and it was not supposed to happen. I am still searching for the answers as to why.

She and I were a team. The last 8 years were an incredible roller coaster of love and determination. As much as I was her champion and supported her, she defined me, strengthened me, and helped me become the best version of myself. How do you lose and move on from a force like that in your life?

This is what 2016 will be for me. Learning how to move on, and if I can’t learn – then simply learning how to cope.

 

She was an incredible child. My own daughter.

8 years was not enough time with her. That is my biggest regret.

 

Julie

 

I invite you to watch Kate’s Celebration of Life Memorial from November 30th, 2015.