Things I love about Heston and life with Heston: Heston's Hands

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, and consequently it is starting to default into a retracted, bent position.  I am using every opportunity I have to hold it and massage it in hopes it will help him retain mobility and comfort.  I never would have anticipated dealing with so many small issues, such as this, when preparing ahead for what Sanfilippo would do to our boy.  We knew he would lose the ability to eat, to walk, etc, etc, but losing the ability to control and move his hands was not on my radar.  Nevertheless, this is our reality and I choose to stay positive and take the opportunities given.

Sometimes when someone gets close enough to really try to communicate with Heston face to face he will reach up and touch their face, or their head.  He is always gentle about it, and it seems to be his way of reaching out to them.  I like to imagine he is anointing them, sort of assuring them that they are doing a good job, and even blessing them.  Who knows, perhaps he is just thinking, "Hey, I like you".  Whatever the reason, it is always a special gift when you are touched by Heston.

Heston has always loved his hand being held.  It calms him, comforts him, and brings him joy.  But there is something magical about what I, or anyone gets when they hold Heston's hand.  Maybe it is the fact that often I am holding his hand when we are cuddling on the couch, or that often I hold his hand and look into his beautiful eyes at the same time.  Whatever it is, holding Heston's hand does something amazing inside my heart.  It calms me, comforts me, and brings me joy.  Isn't it wonderful that we can receive back the exact thing we give with a simple gesture of holding his hand?

I would encourage anyone who gets the chance to hold Heston's hand, to do it.  Take the opportunity to comfort him and you might be surprised that you are comforted in return.  Just please make sure your hands are clean, or you can use the hand sanitizer at the back of his wheelchair.  Unfortunately sickness is not our boy's friend, so any measures taken to prevent passing things onto him are much appreciated.  Just another reality of life with Sanfilippo.