June 3, 2018- Heston's 8th Birthday

As Heston turns 8 today, I take a look back at the past year. What a year as we faced such difficulties with our boy and have come so far. It is time to take a moment and share 8 things that I am thankful for as we celebrate this day.

1. Today:

There were times this year when we weren't sure if Heston would make it to another birthday. We are so grateful he is here with us, and we can have this day where we can celebrate him and another year of his life.

2. Canuck Place:

I will never forget the feeling driving into Canuck Place in January. Heston and I were in the back of an ambulance as we were transfered from our home in Victoria. We had spent 4 weeks in the hospital with Heston (2 of which he was fully sedated), followed by 2 weeks at home and to say I was stressed would be an understatement. I had been spending 24 hours a day at Heston's side- suctioning his saliva after every cough, trying my best to keep him comfortable. But the reality was he was struggling to breathe anytime he was upright, was crying in pain anytime he was moved and he was not getting better. I remember walking onto the nursing floor at Canuck Place, alongside Heston on the stretcher, welcomed and literally embraced by faces I not only recognized, but knew cared deeply for my boy. We had never been inside those walls for anything but respite and here we were in desperate need of symptom management- complete care for the health of our boy. We got Heston settled, went over the current care plan, medications, etc and then I was told that they would take care of him and I could go to my room for some rest. One often does not know the weight of a burden they are carrying until it is lifted. I will never forget the feeling of going into that room, my body almost shaking as I was allowed to finally begin to release the responsibility of Heston's care. I spent the next 2 weeks with Heston at Canuck Place and we both left for home after that time, strengthened and on the road to recovery.

We have had a couple of follow-up symptom management stays at Canuck Place as the health care team as taken a lead, pivotal role in Heston's recovery. For 3 years we have been so grateful for the gift of respite that this place has given us, but this year our appreciation has been taken to a whole new level. Our family is so thankful for Canuck Place.

3. Team Heston:

When you have a child with a condition like Heston has, you often hope that when times get tough you have the support you need, but there is a part of you that wonders if you will. This past year our support system was tested and they did not disappoint. We felt supported, loved, and even carried by all around us who did what they could to help us. It gives us confidence and hope that whatever we face around the next corner, we have an amazing "Team Heston" walking alongside us. I am so thankful for the following groups that are a part of our "Team Heston".

-The Eagle View School Community:

When Heston was in the hospital we were given gift cards from a generous, loving group of parents at the school that were such a blessing to us. As Heston's health improved and he was getting closer to returning to school, there was new equipment and changes needed at the school, particularly in the bathroom as he could no longer walk. The school administration, led by Lois Bender (principal) bent over backwards to ensure that changes were made in record time. I never had to fight for anything- they were informed of Heston's new needs as far as equipment was concerned, and they made it happen. Heston's EA was also allowed to come to our home to visit him and be trained in his new care plan so that she would be able to care safely for him when he returned to the classroom. All of these things led to a smooth transition back to school. Heston continues to love his time with his classmates and the school environment, and we are so very grateful for the love and care they and the incredible staff give to our sweet boy.

-Our family:

We saw this past year how hard it was for our family to show their care and love for Heston from afar. It is not always easy for people to stay away, feeling helpless when loved ones are going through hard times. We had many family members ready and wanting to come and be a physical help and presence, but we knew that our immediate family and children needed space and our home to ourselves. When our extended family listened to our wishes and helped from where they were, we were grateful for their support and their willingness to give us space.

On the other side we were so grateful for Jordan's dad who became our full time driver for pick-ups and drop offs for school. His availability gave our kids stability and normalcy on a day to day basis, which was wonderful.

-Friends and Church family:

Wow did our friends carry us through this past year. From babysitting the twins, to gift card and financial gifts, to meals, we were blessed and taken care of for months by countless friends and family from our church. We had friends organizing other friends- ones that were the go-tos for others so we didn't have a constant bombardment of people seeking out our needs. When and if we needed anything, we informed certain friends who would then let the word out and rally others. This was an enormous blessing and we felt very much loved and upheld.

4. Prayer support:

Over the years we have had so many people praying for Heston and our family it is unbelievable. This past year the fervency of the prayers were taken to a new level. I remember when Heston was finally awake and seemed to be getting better, and then all of a sudden was getting worse again. Our friend Adam who came to the hospital daily to visit and was a rock for our family said "People have stopped praying. We need to get people praying again!". He was right. We got the word out that Heston had taken a turn for the worse and our prayer support got back to work.

I have never felt so lifted by prayer as I was during Heston's time in the hospital. I remember feeling so helpless, exhausted, not even able to get through a complete sentence without a mental block. I remember thinking I was too exhausted to even pray. I didn't even know what I should be praying for anymore- what I needed, what Heston needed, what our family needed. I couldn't even think. It is in these times when knowing that you have an army of people praying for you that you can find strength and rest in that. I was being carried by the prayers of others and I could feel it. I believe in a God who answers prayers and I can honestly say that while it is unexplainable, when one is being prayed for by so many, you can feel it. The "peace that surpasses all understanding"-peace that doesn't make any logical sense- has been God's gift to us over and over again and I know this is a result of the faithful prayers of his people for us and our boy.

5. A greater perspective of normal:

It is always amazing how hardship gives you a new perspective, and makes the normal seem easier than before. After 3 months of Heston requiring a ton of care, when his health improved, he weaned off his meds and he returned to school, it was amazing how easy our everyday life seemed. I don't remember normal being this easy, but I think that is because it isn't. The difference is we lived with difficult and now that things are easier, it feels easy. This is a gift as when I have days where I feel even slightly tired and overwhelmed all I need to do is remember back to how it was, and that makes me thankful.

6. The Vancouver Canucks:

I have decided that every family with a complex needs child needs a sports team to embrace. Because of Heston we spend a lot of time at home, sometimes out of necessity, sometimes because it is just plain easier. With most evenings at home we have become that family who watches every single Canucks game. Through Canuck place we have met many of the players now so when we watch it feels like we are cheering for our friends. Now I know that the Canucks have not had the best record the last couple of years but believe me, when you have experienced the devastating news that your child has a terminal disease, it makes your team missing the playoffs seem like a minor disappointment. I follow a lot of other Sanfilippo families and I have noticed that many have teams that they support and you can see how therapeutic it is for all of us. I remember when Heston was in the hospital we couldn't concentrate on any tv shows, movies, etc. We desperately needed a mental distraction to give our brains a break, but we just couldn't focus. Hockey games were a lifesaver- they provided the distraction we needed without a mental workout.

It is no secret that some of our most favorite pictures of Heston are ones of him with Bo Horvat from the Vancouver Canucks. We have them displayed prominently in our main hallway where they are seen numerous times every day. Admittedly we have gone a little overboard with our fandom for Bo. Luckily for us he is a super nice guy and has been amazingly gracious to our family. We have met a lot of really nice players and enjoy them all tremendously, but something has made us crazy about Horvat. I thought about it a lot over the past season and decided one of the reasons is because we always associate him with our beautiful Heston. Whenever I think of Bo, I think of Heston and somehow, in some crazy sort of way when I am cheering for Bo, it feels like I am cheering for a small piece of Heston. With Heston's life there is sadness, joy and there is a whole lot of love, but there is not a lot to cheer for. Bo gives us that and we are so thankful for him and the entire Canucks team.

7. My garden:

This might seem like a random thing on this list but when I think of the things I am thankful for my garden definitely makes the cut. I call my garden my pet. It is always there to welcome me when I get home and it gets me out in the fresh air on a regular basis. I have plants from all different people and occasions over the years so the longer we live here, the more my garden is a memory keeper of my life. I love the blooms of beauty it provides me year after year, and it is just simply one of my favorite places to be. When I am feeling stressed or overwhelmed, my garden is that place where I can clear my head. I am so grateful to live in such a beautiful city where my garden can bring me joy and clarity year round.

8. The Faithfulness of God:

I remember before I gave birth to my first child I knew it would be painful, but I looked around at all the women who had had children before me and decided that I was tougher than most, so therefore it wouldn't be that bad. If they could do it, I definitely could. Needless to say when I was pregnant with my second I was dreading the labour part much more. Part of me thought it was crazy because I had experienced it and survived, so naturally I should be less fearful, but the reality was I was now exactly aware of the level of pain I would have to endure and was no longer naive about what I needed to go through.

I don't know what it feels like to have your child die, but 6 months ago I experienced saying goodbye to my unconscious, tube filled boy with the knowledge that there was a good chance he wasn't going to make it through the next procedure. I now know what it is like to say goodbye to him and I don't want to have to go there again. I have known for 3 years that someday I will have to, but now that I have the experience of actually doing it, I dread it even more.

God has shown his faithfulness to us in countless ways and through hosts of people. He walked alongside us as we faced difficulties with Heston throughout this whole year, and while I know we have even harder times ahead, I know He will continue to be faithful. What God begins He is faithful to complete and He continues to guide us, help us, and love us through this journey. While I know I don't want to face what is ahead with our boy, I continue to step forward in the hope and knowledge that God is faithful and He will continue to be as He has been.

Happy 8th Birthday to my precious Heston. You are treasured and loved.