Tuesday, 14 November 2017

Shoes

The following poem was read at the Evening of Remembrance at McMaster Children's Hospital in September. It really stuck with me and so simply explains my life now...

Shoes
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some people are like me and ache daily as they try to walk in them.
Some have learned how to walk in them so they don't hurt quite as much .
Some have worn the shoes so long that days will go by before they think about how much they hurt.

No one deserves to wear these shoes.
Yet, because of these shoes I am a stronger person.
These shoes have given me strength to face anything.
They have made me who I am.

I will forever walk in the shoes of a parent who has lost a child.

Tuesday, 7 November 2017

Half a year

Who Am I?
When I lost my son, I lost me too.

We are less than a week away from the six-month point. Soon we will have lived half a year without Xavier, yet it doesn't even seem possible.

Time is not the same when you are grieving. It's like it doesn't even exist. Everyday feels like it was just yesterday we said goodbye. I have lost track of any linear timeframe of events and couldn't tell you what happened a month ago. Time does matter because time to me is only a painful reminder of how long I have lived without and likely have to live before I see my sweet boy again.

I honestly don't know how I have made it this far. To imagine I could endure so much pain for half a year and still survive is a testament to our God and his presence in my life. Without his strength helping me make it through each day, I would not still be here. I am tired of feeling so much pain.

I am losing patience with myself now. Half a year seems like a lot of time, but the pain and tears I shed have not eased since the first day he was gone. In fact, it is more intense. The numbness is gone. I feel like I should be crying less, or feeling more confident in building our new life. But I am not. I still hurt beyond words and have plenty of days where I miss him so much I can't keep it together for more than an hour without sobbing again. I have so much denial. I don't want this life, I don't want to live without him, I don't want to remember him with pictures and I don't want my memories to be all I have. I want to make new memories, I want to see him succeed and to hug and kiss him with each accomplishment. I want to see him and his sister playing ... or even fighting together again.

Just as I wrote that line I got a message from the school as a reminder of Twin Spirit Day tomorrow. My eyes well again... twins - something I was so proud to be -- a mom of twins. Now I feel like that identity has also been taken away from me. I was a mom of twins and now I am not. So much of who I was has gone away with him. I don't know who I am anymore.

Not only was I his mom, but I was his caregiver. This role has also disappeared with him. Although I am still those things to Mackenzie, it is a much different role with her than I had with him. I was nurse mom to him and I loved having such an intimate relationship with him. Of course it was tons of work, but I was incredibly valuable and useful. Whether it was dressing him, helping him move around or administering his tube feeds, I played a vital role in giving him life everyday. Now that role is gone too.

Losing a child is much more than a single loss. It's losing each and every milestone we were supposed to share with him, it's losing a lifetime of memories and learning who he was to become. It's losing your identities, and your roles you played while he was here.

It's losing him and yourself.



Tuesday, 31 October 2017

It's Halloween: Diary of a Grieving Mom

October 31, 2017

At 7:30 a.m. I was already crying. Seeing Mackenzie's excitement about today struck a chord. As much as I wanted to feel her excitement, I could only feel sadness. Xavier loved Halloween. Together he and Mackenzie would plan for weeks even months about Halloween. Xavier loved to dress up in general and he couldn't contain himself on a day dedicated to dressing up. He would go online searching for costumes over and over again. He would pick one then change his mind again. By the time the day actually came, we had already bought him multiple costumes to choose from. I miss watching the two of them get ready and then parade around the house showing off their costumes.

And it wasn't just the costumes either. He loved to decorate the house inside and out. While Mark took care of carving pumpkins with the kids, Xavier and I would always take a trip to the dollar store for lots of creepy decorations. He would have his hands full in seconds. I couldn't bring myself to go this year. Mackenzie used what we had from other years to decorate her room. Even walking through the scary aisle at Walmart made me cry. This day was probably just as exciting for him as Christmas.
I don't want to do it without him. I hate holidays right now. They ignite so much pain thinking of what he is missing and what we are all missing without him here. Days like this it's hard to not think about him non-stop.

I remember last year like it was yesterday. He had a really awesome costume that even riding in his wheelchair it still looked so cool. We went out with his "girlfriend" and family. It was a nice night and we stayed out later than any other year. He just didn't want to stop, even though he could barely walk. We visited friends, teachers, old babysitters... so many special people he knew. And several times he remarked: "This is the BEST Halloween EVER." Little did we know it would be his last.

I am thankful for this memory and can't help but think the powers at be were watching over us that night making sure it was a perfect night.


Monday, 23 October 2017

Missing you...

I miss watching you play, so I looked at a picture of you playing. 

I miss hearing the sound of your toys, so I went to your room and turned on your light sabre. 

I miss hearing your sweet voice and contagious laugh, so I watched a video of you. 

I miss your goodnight kisses and holding you in my arms, so I cried. 

Your touch can never be replaced. A picture, a video, a memory will never suffice. Nothing compares to the physicality of running my fingers through your soft, thick hair or kissing your warm, sweet cheeks or holding your sweaty little hand. I am learning to cope without you, moment by moment, day by day, but I still can't get past not having you here to touch. To feel your warmth radiate through me as we slept side by side as you neared the end. To rub your aching back or tickle your feet to see that amazingly beautiful smile of yours.

I am trying to learn how to feel you in my heart, but just as grief is a process so too is learning to live with you in my heart instead of my arms. I long for the day we are together again. And as I wait, I take comfort knowing you are happy. As much pain as I am in now missing your touch, I can feel it deep inside that you are well. I cry happy tears knowing you are in the arms of Jesus now.

I pray every night that He hug you once for me (a song by Erica McClure)





Monday, 16 October 2017

"Mad-Sad"

Anger!
The young girl Tip from the Disney movie Home gets it.  

As the term suggests, it's when you get angry but deep underneath you are sad. In the movie, Tip is sad when she was separated from her mother by aliens when they invaded Earth. When Oh discovers what is underneath her anger, he says, “You are mad-sad”. What appears to be anger is really sadness and grief for her loss.

My grief, my sadness is the eye of a hurricane and around it swirls many other emotions capable of serious damage if managed improperly. Lately, anger has been encircling my pain. 

Anger is an uncomfortable feeling for me as I am not usually one to anger. It takes a lot to get me fired up and I typically try to diffuse anger in others because it's scary and unpredictable. A control thing likely for me.

But I am angry. I am not angry at anyone in particular, just life in general.
I get angry when I do something new or old where Xavier should have been with us.
My anger seeps out when I read about the lack of funding for researching kids brain tumours. I get angry I didn't get more time to spend with Xavier. I am angry at myself for going back to work while he was sick. Angry at how people value things and not people.

Angry that I have to deal with issues with my daughter that no 8-year-old should ever have to deal with. Angry with people who don't understand. Angry I can't sleep anymore.

Angry we have to start a new life without Xavier and angry that I could not save my son.

I am angry we are left here without him. 

However, I am learning anger can be healthy and a natural part of the grieving process. I have a tendency to push away anger because when I feel it I also feel guilty for being angry at all. I have to tell myself to let it out, scream about it, pound it out in words on my computer.

I need to use anger to my advantage. It is a driving force. In Tip’s case, it drives her to search for her mom. 

It's ok to be angry. My anger is telling me something is unfair, it's protecting my vulnerability and sending me a signal that something needs to be looked at within myself. My anger is calling me to action and it's my choice how I react. 

So I have decided to use my anger, to harness its energy and pursue a cause. I want to turn my mad-sad into positive action. I am choosing life not death. Not in the sense of physical death, but I am not allowing my anger to consume me or spiral out of control destroying what good I have around me.




Thursday, 5 October 2017

He will be remembered

Xavier Hayden Garrett was shy and hated being centre of attention. But he would be friends with anyone - most often the kids who really didn't have or make friends easily. 

He didn't need to make a big difference on a big scale. He made a big impact in a small group. His legacy is not known far and wide, yet the impact he had on those  special people reaches far and wide in their hearts. The world has forgotten him, but those people will not. He changed them forever filling them with a light that shone so bright within himself. Xavier was so true to himself. He never tried to be anyone but who he was and everything he did was consistent with his Being. Some people never get there. But he did and with everything he endured he never wanted pity. 



The world will forget him. Many people will forget the boy named Xavier who died of brain cancer. But to those who loved him and who he had a special place for in his heart will never forget. 
As days, months and years pass, the one time encounters with the small blue-eyed boy will be forgotten. The hundreds who may have seen him on the front of a local newspaper will have moved on and never thought again of the sweet boy who died. 
But that's ok. 

Xavier never would have wanted to be that poor boy who got cancer and died. He will be remembered by the most important people who touched his life and he touched theirs. He will be remembered by them as more than the boy who had an incurable brain tumour. 


He will be remembered by many, but fewer and fewer as the years go on. But in the hearts of those who knew him well he will live forever. Not the day he was born nor the day he went to Heaven will these special people ever forget. It's true love, it's genuine, it's a depth of ourselves he took with him and the pieces we keep here of him. I don't need a world to miss him, although I would love the world to know what an amazing son he was. All I need, is to know he will never be forgotten, always loved and living within those people I know who meant the most to him.

 His purpose was not to become a poster child for brain cancer research or childhood cancer in general (that's mine now) his service was love. His mission was not meant to reach thousands and thousands but to teach a whole bunch about the power of love; how love alone can bring joy and happiness to anyone in any situation. Thats why anyone who met him just fell in love with him. He didn't even have to say anything or even smile ... he just had a light about him that drew you in like a bug to a lantern. 

While most won't understand the depth of our pain and lifelong grief, they will remember him and love him forever alongside us. 




Tuesday, 3 October 2017

Hey! I noticed the flowers

This week as I approached my counsellor's front porch, I noticed a beautiful purple potted Mum sitting by the stairs. It had so many little flowers that together they made up a great big ball of purple flowers. I couldn't help but comment on the beauty of this Mum when he came to the door to greet me. 

Seems like a silly thing to write about, I know. But the memory of those flowers came back to me and that's when I realized their significance. 

In that moment I had been still enough to feel the beauty of nature. A heart-warming feeling of joy arose in my noticing these flowers. Simple yet profound. 

There was a peace about me in that moment that I could feel joy through a plant. It reminds how we truly are connected to everything because everything is connected to God's love. I feel blessed by this moment and it gives me hope that I will have more joyful moments where I am still enough and at peace enough in a world without my beloved son. 

It really is all about the little things. But often we miss those little things and when the bigger things happen we never see them as big enough to appreciate.