Things I love about Heston and life with Heston: Kneeling at his feet


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 Heston being a king, isn't it more accurate to think that he is someone who Jesus might have referred to as "the least of these"?  Jesus said that whatever we do to the least of these we do to him, and so often, rightfully so, we think of these being the poor, the homeless, the outcasts of society.  But wouldn't a boy who is losing his abilities, who has never spoke and needs care for all of his physical needs be thought of as "lesser" than others?  And so when I find myself at the feet of Heston, serving his needs, I realize that it is actually an amazing honor- for while I am doing the task for him, I am also doing it for Christ.

It is amazing how a position that would have seemed almost demeaning or at the very least like a chore a few years ago has turned into one of my favorites now.  How a change of perspective, an enlightenment perhaps, can turn a task into a gift.  And it is in these times each morning that I feel a bit like I am on holy ground- like the kingdom of heaven and the kingdom of earth meet there at the feet of that wheelchair.  So while I continue ahead with putting on socks, orthotic braces and shoes, I also pause to look up at my beautiful boy and feel close to God.



Comments

Post a Comment

Popular posts from this blog

June 3, 2021- Heston's 11th Birthday

Image
  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...
Read more

October 22, 2022- Thoughts from Jordan

Image
  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 ...
Read more

June 3, 2022- Heston's 12th Birthday

Image
  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...
Read more