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...