June 3, 2017- Heston's 7th Birthday

Today my beautiful, precious son Heston is turning 7. As per tradition, and with a spirit of true gratitude, I am sharing 7 things that I am thankful for.

1. Community

Today a friend of ours (Michelle Alexander), along with Heston's school community is organizing a birthday party and fundraiser for him. They are using our church facility to host the event and many from our church are helping out and attending the party. It is so great to see people come together for our boy. They say it takes a village to raise a child, and a special boy like Heston takes even more. We are so blessed to be surrounded by such support and it makes me proud, so very proud of our community. Proud that they are embracing a boy like Heston and are willing to not only support, but celebrate him and his life.

2. Heston's support team

Heston has a pediatrician, family doctor, MPS specialist, neurologist, orthopedic surgeon, Ear Nose and Throat specialist and cardiologist, all of which he sees on a regular basis (some every few months, some yearly). He also has an Occupational Therapist, Physiotherapist, Dietician, Early Learning support teacher and a full time Educational Assistant at school. This doesn't include the "extra" professionals we see for things like his recent g-tube surgery. I can not even begin to think how difficult it would be for our family if we lived in a country and province where access to this kind of support came at a financial cost to us. I am so grateful for the medical system of British Columbia and Canada that provides this medical care for our boy.

3. Canuck Place

Every year I do a photo book with the pictures that represent memories of what we have done in that year. The last couple of years we can't help but realize when we look through our book, that it is filled with our photos at Canuck Place. Our visits to Canuck Place have been our families holidays, and the activities we do there have brought us much joy. Respite bookings for us are like staying in an all-inclusive resort where meals, a place to stay, activities and outings, and even volunteers to play with our kids are all provided for us, free of charge. These visits provide us with a much needed rest, and allow us to enjoy the fact that our children are given opportunities that we otherwise would not be able to give them.

Canuck Place continues to support us in great ways with Heston and his care. Our stay this past spring to allow him to recover from his g-tube surgery was such a help for us. If we had come straight home after the surgery we would have felt lost and worried. Instead we came home, after a few days at Canuck Place, confident and relaxed with the whole process. We also have continued peace of mind that we have nurses and doctors available to us by phone 24/7, who know Heston, his condition, and can give us direction in any medical need we have with him. Being a part of this program is simply invaluable to us.

4. The Canucks (Bo Horvat and Alex Biega)

Jordan and I have been Canucks fans for years, but this last year our level of "fan" was taken to a whole new level. We found ourselves looking forward to each and every game, and would even record games if we needed to miss them. We followed the team on social media, watched player interviews and were genuinely excited for them, all on a year when the team ended the season in 2nd last place in the standings. I have often thought about why we have become so obsessed with the Canuc

ks at this time, and I have decided that it is for multiple reasons, the biggest being the following:

i) As a family of 7, particularly with Heston, we find ourselves home a lot. For the most part, staying home is either necessary or just so much easier than the effort it takes to go out, so having games to watch from the comfort of our home is wonderful. It gives us something to look forward to and hope for which can be frankly a welcome distraction for us on most days.

ii) Through the Canucks for Kids fund and Canuck Place we have had the privilege of attending numerous Canucks games this past year, some even from the comfort of a suite. These opportunities have allowed us to make memories as a family that will last us a lifetime.

iii) We have met many of the Canucks players over this past year, and have made a connection with two in particular- Bo Horvat and Alex Biega. We have been able to see both of these players numerous times. Between Bo and Alex we have had photo shoots, pucks thrown to us before games, numerous meetings, autographs, and even a visit to Canuck place to see us. Now when we watch a Canucks game we are completely invested, cheering for the team as a whole, but for Biega and Horvat we are super fans.

iv) I grew up in northern Alberta as an Oilers fan. I remember being "gifted" a used pair of high top runners by a family friend who had connections with the coach of the Oilers at the time. These shoes were a bit too small for me, but that didn't stop me from wearing them with pride, because they were shoes that had apparently been worn by the son of Glen Sather. Looking back it seems a bit ridiculous that I was so excited to have these shoes, but at the time, and to my younger self, it was a big deal.

Fast forward to today, and our house is filled with real, personal Canucks memorabilia from actual meetings with the players themselves, and we love it. We have decided to display and frame many of our amazing photos and love the memories they represent. Many of them we have even got signed, which represents two great memories- the memory of the taking of the photo, as well as that of when we got it signed. Both Jordan and I love being reminded of these moments, and are excited to continue adding to our collection.

5. Heston is happy and pain free

This year we have experienced real regression in Heston's mobility and in his ability to eat. We are also noticing that he is becoming more distant, and less able to focus. We used to be able to get him to laugh and smile pretty much on cue, but that ability is now gone. We are well aware that the next phase for Heston could be extremely difficult. He could very likely suffer from seizures and have periods of unexplained pain.

We do not take for granted that today Heston is not in pain, and is enjoying life. While further and far between, he does have moments of big smiles, and fits of giggles that bring smiles to all around. He is not on any medications for seizures or any other symptom management. While this could all change tomorrow, for today we are so very thankful for this blessing.

6. Heston is a loved and valued member of our family

Our oldest son Caynan is 16 years old, and is a loving, capable babysitter for Heston. He has learned how to administer his tube feeds, can put him to bed, and can even change his diaper when he is left in charge. Dryden is my go-to when we are on a walk and I need to push Heston up a steep hill and was always on the look out for Heston when he used to choke on his food or drink (before his g-tube). Watson is my best helper for holding Heston's hands during a difficult diaper change. Gibson is great at noticing that Heston doesn't have any chew toys that he can reach, and then placing them close to him.

Heston is such a wonderful content boy, and is often extremely quiet. While many times it might appear as if he is unnoticed by his 4 brothers, I know that his presence his very much felt in our home. He is teaching us all daily, and is so very loved by all of us.

7. New Lenses for life

I am seeing life through a whole new light. When Heston was diagnosed it broke my heart. I felt despair and disappointment like I had never felt before. I have not lost my son, but I have lived the past 3 years watching him lose abilities, all while knowing that I will lose him. Anticipatory grief is a difficult journey and over these years I have felt heart broken time and time again.

But there is something else that I have noticed about myself, and the change of perspective it has given me. It feels as if my heart has been beaten, broken down, and it now is more sensitive. The bubble, or outward shield that used to protect my heart has been worn off and this has made me more susceptible to experiencing pain and hurt as I notice it more and more in the community and world around me. But this has also led me to become a more compassionate, understanding and less judgemental person. I will always have more room to grow in these areas, but noticing an improvement is encouraging to me.

It makes sense to me that going through this hardship would help me become more compassionate and understanding, particularly to those in similar circumstances, but what has surprised me is the new depth of Joy I can now experience. A wise women once said that "some things can only be seen through eyes that have cried". I am experiencing truth in those words. It is as though I see life through a new, clearer set of lenses, or like my life used to be in black and white, but now I live in colour. While I see and experience hurt more deeply, my new, less calloused heart also has the ability to feel joy in a deeper, greater and more meaningful way. I can slow down and truly appreciate things that I easily overlooked and took for granted before, often finding joy in areas that I never would have. Basically, whether it is tragic or joyful, as a whole I FEEL more.

I have heard it said that you can take a hardship and allow it to either make you bitter or make you better. Oh how I hope to allow this gift of Heston I have been given to make me better. After all, Heston is my amazing teacher, and that boy doesn't have a bitter bone in his body. He is the truest definition of "better" that I have ever experienced.

Happy 7th birthday to my dearest Heston. You are incredibly loved and appreciated.