Sunday, 31 December 2017

Don’t go 2017!

New Years 
A time of reflection. A time of celebration. A time of joy and a time of sorrow. 
I approach 2018 with so many mixed emotions. 
This year has been hell on Earth. The pain and heartache of losing Xavier will forever be how we remember 2017. 
But leaving this year and starting anew fills me with an overwhelming sadness. To say goodbye to this awful year is to also say goodbye to the last year I will ever see Xavier alive. He lived in 2017. I have memories we made together in 2017. 
Next year I will have none. He will not lived a day in 2018. 
New Year’s is one more piercing stab of reality he is gone. 
2017 was the worst year of my life, yet I want to hang onto it forever. 
Hidden within the brokenness of 2017 was also a year of immeasurable growth: growth in my faith, my spirituality and my awareness of who I really am. 
I lost my son and found insight. Things I had been searching for in my life and trying to make sense of suddenly became clear.  I found strength I never knew existed, I found love at depths never experienced before and I found myself. 
And it is for those reasons, for the growth I gained in 2017 that I will look at 2018 with a hopeful heart. I will seek opportunities to use what I learned, and honour Xavier as I do so. His guiding light will carry hope for us all into the New Year! 


Sunday, 10 December 2017

Hope in the Force: A deeper meaning in The Last Jedi

AS the hype grows hot for the new Star Wars movie The Last Jedi, my heart grows sad.

The movie, which premiered in LA this weekend, comes to local theatres on Thursday. 

Seeing the new Star Wars movies has kinda been a thing for our family. Before having kids, it was an automatic date night for Mark and I (and I really enjoyed the added romance between Anakin and Padme). Then when we had kids, especially a boy who grew to love the original Star Wars just as much as his dad, going to the movies to see the newest one became an "event". Mark and Xavier would brave the crowds to go during opening weekend, then about a week later Mackenzie and I would go with the boys (because they are that good to see them twice in one week!) 

But months before the movie was even in theatres we talked about going. When the trailer for the trailer would come out we would all get excited and then watch the trailers over and over again online. It always brought a lot of joy to us all and especially Xavier. 

And he wasn't afraid to let us know what he thought about Lucasfilm's (now Disney) epic productions. He fell asleep during Rogue One and told us how much better Episode 7 was, which was why he was really looking forward to #8 The Last Jedi. 

But he won't be watching it with us this year. 

My heart breaks to think of seeing it without him. I can just picture his excitement and anticipation. We will never be able to think of Star Wars without thinking about him. Xavier loved a lot of things, but Star Wars definitely took the cake. 

We were packing up our house to move (we had bought a house more suited to his physical needs at the time) when he stopped and started sorting through his Star Wars toys. He looked at us and said: "These ones are really important to me." At the time we didn't know how close to death he was. Two weeks later he died. 

And this is why, as much as it will hurt, we will watch The Last Jedi. We will go to honour Xavier and invite him to watch it with us, through us as only his spirit can. 

We have always been fans of Star Wars, but now our "fandom" has taken on an entirely new meaning.
Our love for these beloved, fictional stories now hold truly special memories of our son. It has made us believe in The Force! 

“Death is a natural part of life. Rejoice for those around you who transform into the Force. Mourn them do not. Miss them do not. Attachment leads to jealously. The shadow of greed, that is.”

- Yoda

Xavier’s Hope Video featuring Star Wars! 















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)