Hugs for Heston

  How am I doing? That’s a great question, and I think you would agree, it depends on a lot of things. It depends a lot on the moment. I bet some of you are doing great right now, and some of you maybe not so good. And your answer might be drastically different if you were asked that same question an hour from now, a day from now, or a month from now. The past few months (and years) there has been a much deeper focus on the question, “how am I doing?”. For Kerena and I, when we are asked that question, it comes to 2 levels, how are you generally doing, or the much deeper: What is life like knowing your child will die, and now, what is life like after your child has died? I will go as deep as I can to answer these 2 questions We had 9 years to process and grieve the news that Heston would have a short life here on earth. Unlike a child who is suddenly taken in some sort of accident, we had years to say goodbye. I held Heston so many times with the thought of trying to ...

  Today is Heston’s 12 th birthday.  Those are words I never thought I would say.  Right from his diagnosis, when he was already regressing faster than many Sanfilippo kids, up to the last year, even the last month I didn’t believe this day would come.  And yet here we are.  So as per tradition, on this, Heston’s 12 th birthday, I am sharing a list of 12 things I am grateful for. So many who have supported us Whether it was a card or email of encouragement, a meal or gift card, we have been so thankful for so many who have come along side us in this journey.  We knew years ago that this would be a marathon, but even we didn’t realize how long things were going to draw out at the end like they are.  I know it has not been easy for many to sit in this space with us and for those of you who are still here, thank you.  Obviously we are most directly affected by the weight of this journey, but that doesn’t mean that it hasn’t been hard fo...

  Today is Heston’s 11 th birthday.   Wow.   What a year this past year has been; for Heston, for our family, and for our country and the world.   Numerous times this past year we had struggles with Heston and I thought we would never make it to this day.   But while he continues to decline overall, it has been at a slower pace than I would have anticipated.   It seems like whenever we get comfortable with how well he is doing, something happens to drop him down.   Whenever we are convinced we are nearing the end he seems to improve.   It has been an emotional rollercoaster of a year.   Not being able to plan ahead will always be a struggle for me and this year I feel like I am taking a masterclass in the art of taking things one day at a time.   When I look back on this past year I have to say that it has been harder at times to be thankful.   I think many can relate that it has been difficult to be grateful without constantly...

  It has been a bit of an up and down week for our Heston.  I keep wanting to send out an update, but it seems whenever I think it is time to share, things change.  He seems to be doing better, even good at times, and then a few hours later or the next day we are back to him being in pain again.  He is definitely not back to normal, and mostly quite sleepy or mellow, but we have seen some promising periods when he is more alert and happy. Overall we feel that we have had some improvement over the past couple of days.  We took him to get an x-ray here in Victoria on Wednesday evening as he still seemed to be in pain and we wanted to see if his bowels were still full.  The x-ray showed improvement, but still a backlog.  So while improvement is great and gives us hope that things are headed in the right direction, we also know we aren’t out of the woods yet.  Heston is not past this. We have watched Heston lose functions and abilities for the pas...

  It has been awhile since I have posted an update on Heston.  The past 6 months have been such a crazy time for so many and like many of you we found ourselves mostly staying home, making the most of our time as a family.  One of the benefits of this is that Heston has not had to battle sickness for this period of time which has given him strength.  He is doing so well right now, and has been for some time.  He is animated, engaged and full of energy. Our boys have now been back in school full time for over 2 weeks and it is wonderful for all of us.  It was amazing how well we all did for the past months at home, but returning to school has been healthy in many different ways.  Heston in particular is such a social little guy and it is so apparent that his life is enriched by his time with his classmates.  He feeds off the energy of other kids and just loves to watch them. We are so thankful that we have the opportunity to allow Heston to be a pa...

Wow- Heston is 10!!  A part of me is thrilled that we are here, and another part of me is sad that we are already here.  As we celebrate our boy this day and the milestone it represents, as per tradition, I will share a list of 10 things I am thankful for, for this, Heston's 10th birthday. 1.  Heston's Stable Health This past year we have experienced relatively minor changes to Heston's health and care.  He has been the most stable he has been in years, and we are so thankful.  This not only makes our job easier as it takes the guessing game out of trying to figure what needs to be done to accommodate changes, but it is so much easier to deal with mentally and emotionally.  For the past while he has been alert and engaged, all without signs of discomfort.  We have found what seems to work for him (for now at least) which takes away so much extra stress. Lately we have even commented on how when you try to lift him he really tries...

We are 6 days in to a self isolation/ social distancing lifestyle as a family with the threat of the COVID-19 looming around us.  We are staying home as much as possible, only going out for necessary outings or low risk appointments, and being extremely cautious and careful when we do.  Our whole family knows that we are on protection mode for Heston.  We know that for the rest of us, this virus would likely be mostly a minor inconvenience, but for Heston, it could be a threat to his life. Heston has regressed to the point where his brain doesn't always give the signals to him around proper swallowing, etc.  He drools a lot, and while we don't see too many other symptoms in this area, he does sometimes cough and have slight trouble managing his own saliva.  This puts him at a great risk for aspiration. Should he be infected with a respiratory virus such as COVID-19,  whether it be from the virus itself, or from aspiration around the symptoms of the v...

I love how Heston has made his brothers better people. I have read many articles about how difficult it is for siblings of kids with special needs and/ or terminal illnesses.  Much of the family time and focus goes to the high needs child, and often the siblings are neglected and miss out.  I don't want to belittle these things for a moment and absolutely want us to be aware of the extreme challenges that the siblings face.  But so often I think we forget to see the tremendous value that a special needs and terminal child is to his or her siblings.  I have shared over and over what a precious gift Heston has been to me- how he has changed my perspective on life, made me a more loving, deeper person.  But that gift is not exclusive to me, the parent. When Heston was first diagnosed one of the first thoughts I had was that I knew my other boys would grow up to be greater people from growing up alongside him, and experiencing so much from him....

I love Heston's hands. Heston has the most soft, perfect hands one could ever hold.  His touch is always gently and while his hands aren't always warm to the touch, contact with them can leave your heart feeling warm and filled. After Heston had his complications following surgery two years ago, he went weeks even months without being able to move his hands.  I remember wondering if he would ever regain the skill and connection from his brain to be able to control movement again.  Then one day he was given a massage on his hands at Canuck Place and after that, we started seeing glimpses of movement- with hope of more to come.  He did end up regaining function and control, although not to the complete extent he had prior to the surgery.  But what that showed me was not only how helpful massage was for him, but also how important physical connection and physical touch is. Recently we have noticed that Heston is not using his left hand as much, an...

I love kneeling at Heston's feet. I find myself in this position almost every morning.  Part of my morning care routine with Heston is putting him into his wheelchair and then kneeling at his feet to put on his socks, AFOs (orthotic braces) and shoes.  This might not seem like anything that exciting, and really it wasn't until one day it all changed for me. I was on my knees, getting things onto Heston's feet one day when I looked up at him and it sort of struck me.  I was reminded of the story of Jesus washing the feet of his disciples and I wondered if this was a bit like how Jesus felt.  The example of how we are to serve others and not think of ourselves as better than them can often be changed into different contexts, but I felt that physically sitting at the feet of another was too direct of a similarity to ignore. I sometimes imagine Heston's wheelchair is like a throne and I am serving him, literally kneeling at his feet.  But instead of ...

I love Heston's eyes. I love everything about them. I love his amazing eyelashes.  If I had a quarter for every time someone has said how long his eyelashes are, or how jealous they are of them I would be a wealthy lady.  Thick, dark, lashes for days are one of his trademarks. Along with the prominent, thick eyebrows, these features are both genetic, as well as shared by many other Sanfilippo kiddos.  (As a side note, I have often thought it funny that while everyone wants his eyelashes no one has ever been jealous of his eyebrows, even though they are equally as amazing as the lashes in my opinion 😉haha) I love the colour of Heston's eyes.  In my science class back in high school I was lead to believe that two blue eyed people would naturally have a blue-eyed child- that was how eye colour and genetics worked.  And yet, here we are, two blue eyed people with a son with light brown eyes.  Obviously my genetics class was an over simplificat...