Hugs for Heston

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...

Last week we had a great visit and time of respite at Canuck place. But mixed in with the fun and rest were three important medical appointments for Heston. So for those who like to follow along on how he is doing, this update is for you. The first appointment was with our doctor that we call our Sanfilippo specialist. His knowledge of the disease and its progression is extremely valuable to us, as he is one of the few doctors we see that has any experience with the disease. From him we were able to get some great advice on what things are important for us to monitor at this stage, and what maybe is not really needed. Both things are valuable as unnecessary appointments and stress can really add up when you already have so much to attend to and deal with. Our biggest issue currently and moving ahead are Heston's slowing bowels and this doctor was able to give us some suggestions as to what medications are the most effective and least pain causing for him. He explained that i...

I don't like to be wrong.  I like to be the bearer of accurate information, without exaggeration whenever possible.  I would say I tend to be on the side of cautiously optimistic, and try not to over excite others with good or bad news. I am often asked how Heston is doing and as his primary caregiver and the person present at all his appointments I want to be the best source of information on his well being.  I want to not only be able to give updates on his present condition, but also insight and direction on how we expect his health to continue to progress.  I want so desperately to help myself, my family and so many around me be as prepared as possible when his health deteriorates.  Last September when school was starting Heston was so sleepy.  It felt ridiculous at times wheeling him up to the front doors of the school, often sound asleep.  His body seemed tired and I feared things were slowing down for good.  He improved with a c...

Today my beautiful Heston turns 9 years old.  Each year on this day I share things that I am thankful for.  Below is a list of 9 things, for Heston's 9th birthday. 1.   The same things over and over - When I sit and evaluate some of the things that we are most grateful for, year in and year out a ton of them are the same.  I could pretty much copy each list I make every year and add one more and be done with it- but I don't think many would be willing to read the same thing every year.  I was thinking a lot about this and realized just how much of a gift that is.  The fact that we have people and organizations that have been so helpful to us year after year after year is really incredible. So many of our friends have stood by us, and continue to offer support.  Our church and Heston's school communities love him, and have shown us time and time again that they aren't going anywhere.  Canuck place has been our main source of respit...

My wife usually shares most of our thoughts and insights regarding our journey with Heston, but I thought I might share a few that have been on my mind lately. Yes, I’m worried and anxious Looking back, I think every new parent feels a bit inadequate when they first realize that they are suddenly responsible for the care and well-being of their new baby. With our first child, I remember listening at night for breathing, feeling a hint of worry that everything might not be ok. I became more relaxed the more kids we had, knowing that my fear was unfounded. There is a daily weight knowing that this fear is not unfounded with Heston. When I listen to him breathing at night, it is not even and steady. Although that is his normal night breathing, it is still unsettling, knowing that there is always the possibility that he will simply not be there in the morning. This is always a possibility with children with Heston's disease. During the day I feel extra s...

I like to plan, I like to be prepared.  I am that person who likes to have the Christmas presents bought and wrapped before the beginning of December.  I liked the feeling of having the clothes organized, the diapers and supplies bought and all ready well in advance of my new expectant babies.  Knowing this about myself it doesn't surprise me that I have been feeling lately that it is time to get things planned, ready if you will, for Heston's passing.  I don't like to scramble at the last minute, so if there are things I can do, decide or have ready ahead of time, I want to. But this sort of planning hurts- it is so hard.  At times it just feels weird and at times just the thought of it makes it hard to breathe.  Sitting in the funeral office, surrounded by urns and casket samples felt so weird and almost like I was in some sort of bizarre dream.  Filling out forms with some of the information needed for a death certificate I found myself almost ...

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 strugglin...

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 ...