September 29, 2020 update
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 part of the school environment. We know that there are risks that go along with this, but we also know that many illnesses, not just COVID-19, could be detrimental to Heston at this stage of his disease. We are hopeful that the measures in place at his school to protect him and his fellow students from this virus will also prevent him from catching other illnesses. We are so thankful that we live in a community with very low COVID-19 numbers that reduces the risk for Heston in school. We are trying our best to make decisions around his life that enhance his quality of life as well as his quantity of life, and at the moment the benefits are great for him to be in the school environment. We also know that with or without illness, Sanfilippo could cause him to go downhill at any time so we are grateful for each and every day that he is in a state where he can truly enjoy what time at school offers him.
A couple of months ago I was out and about with Heston, one of the first times in public since COVID-19 hit. A little girl and her mother were nearby and the girl took one look at Heston and turned to her mother and exclaimed, "What is WRONG with him?" Now these sorts of comments, particularly from children, I had grown accustomed to, but this one stung. Maybe it stung because it had been awhile since I had been out with Heston, so I wasn't as used to it- but mostly it was the term "Wrong" being used to describe my beautiful boy that was so hurtful. I wanted to scream out and exclaim that Heston had more right about him than I did- that different, or not normal didn't mean wrong.
I wish I can say that I said something wonderful that educated both this child and her mother, but sadly I did what I usually do- I pretended I didn't notice the comment and moved along. But I have thought about it a lot since that day. You see, there is such a stark difference from the reactions and interactions of kids who know or are familiar with Heston and those that haven't had experience with him or others like him. When he returned to school I heard so many stories of kids who said they had missed him and who were happy to see how excited he was to be there. The last thing they would associate with him would be the term "wrong". And this is because they spend time with him, which makes them more accepting of him, and I am sure of others like him.
So as we move forward, I am thankful that Heston has the opportunity to be back at school, both as a student, and as a teacher. I have enjoyed spending the last 6 months of extra time with him but it is time to share him again. We don't know how long we have left here with him, but I know that for however long that is, he can be a blessing to so many. If only we could all impact our world for the better like he does.
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 part of the school environment. We know that there are risks that go along with this, but we also know that many illnesses, not just COVID-19, could be detrimental to Heston at this stage of his disease. We are hopeful that the measures in place at his school to protect him and his fellow students from this virus will also prevent him from catching other illnesses. We are so thankful that we live in a community with very low COVID-19 numbers that reduces the risk for Heston in school. We are trying our best to make decisions around his life that enhance his quality of life as well as his quantity of life, and at the moment the benefits are great for him to be in the school environment. We also know that with or without illness, Sanfilippo could cause him to go downhill at any time so we are grateful for each and every day that he is in a state where he can truly enjoy what time at school offers him.
A couple of months ago I was out and about with Heston, one of the first times in public since COVID-19 hit. A little girl and her mother were nearby and the girl took one look at Heston and turned to her mother and exclaimed, "What is WRONG with him?" Now these sorts of comments, particularly from children, I had grown accustomed to, but this one stung. Maybe it stung because it had been awhile since I had been out with Heston, so I wasn't as used to it- but mostly it was the term "Wrong" being used to describe my beautiful boy that was so hurtful. I wanted to scream out and exclaim that Heston had more right about him than I did- that different, or not normal didn't mean wrong.
I wish I can say that I said something wonderful that educated both this child and her mother, but sadly I did what I usually do- I pretended I didn't notice the comment and moved along. But I have thought about it a lot since that day. You see, there is such a stark difference from the reactions and interactions of kids who know or are familiar with Heston and those that haven't had experience with him or others like him. When he returned to school I heard so many stories of kids who said they had missed him and who were happy to see how excited he was to be there. The last thing they would associate with him would be the term "wrong". And this is because they spend time with him, which makes them more accepting of him, and I am sure of others like him.
So as we move forward, I am thankful that Heston has the opportunity to be back at school, both as a student, and as a teacher. I have enjoyed spending the last 6 months of extra time with him but it is time to share him again. We don't know how long we have left here with him, but I know that for however long that is, he can be a blessing to so many. If only we could all impact our world for the better like he does.
Sent from my Samsung Galaxy smartphone.
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Graciously written - blessed by your words and having Heston among us!!
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