November 6, 2020- Update

 

It has been a bit of an up and down week for our Heston.  I keep wanting to send out an update, but it seems whenever I think it is time to share, things change.  He seems to be doing better, even good at times, and then a few hours later or the next day we are back to him being in pain again.  He is definitely not back to normal, and mostly quite sleepy or mellow, but we have seen some promising periods when he is more alert and happy.

Overall we feel that we have had some improvement over the past couple of days.  We took him to get an x-ray here in Victoria on Wednesday evening as he still seemed to be in pain and we wanted to see if his bowels were still full.  The x-ray showed improvement, but still a backlog.  So while improvement is great and gives us hope that things are headed in the right direction, we also know we aren’t out of the woods yet.  Heston is not past this.

We have watched Heston lose functions and abilities for the past 7 years.  We have struggled to see him lose his ability to eat, to walk, to grasp objects, and none of these stages has been easy for us.  But this one is different.

For all of the other declines we have been able to come up with alternatives.  We were able to use a wheelchair for him when he lost the ability to walk, we were able to get a g-tube placed when he lost the ability to eat.  We tried to be proactive for each stage, making decisions to keep him as healthy as possible, and preventing injury or illness whenever we could- and this bowel issue has been no different up to this point.  It is not a new problem for him- in fact we have tweaked meds, feeds, speed of feeds, everything we can for at least the past 3 or 4 years to stay ahead of things.  We have always been able to figure out what works for him, what keeps things moving and keeps him from experiencing pain.

We haven’t given up, and we have not exhausted our options.  There is hope that we can get him back to where he needs to be and continue moving forward.  But the reality is we know our options are limited.  There is no wheelchair for bowels that have stopped functioning.  We know that checking this box means more than just moving to another advanced stage.  This is a last box sort of issue.

We have always said that our biggest fear is Heston being in pain and seeing him having periods of distress the past few weeks has been very difficult.  There is something so heart wrenching about seeing this precious boy whimpering and in tears.  He has an incredibly high pain tolerance so what normally would make the average person cry out, he won’t even make a peep for.  When he does cry, you know he is really, really hurting. 

Seeing Heston with tears running down his cheeks is like experiencing suffering in its purest form.  The past couple of weeks I have seen nurses at Canuck Place and his teachers at school experience moments of seeing Heston like this.  They have all been devastated, and they are very much used to seeing children in all aspects of life.  But they have never seen Heston like this.  It has shown me that it is not just me as a mother being overly sensitive to him.  There is just something about him that is so pure, so innocent, so undeserving of the cruelty of this disease.  I just wish so desperately that we could save him from what he is going through, and what likely is ahead for him.

We are taking things one day at a time.  We are hopeful we will look back on this as another stage, but preparing our hearts that it might not be.  So much has been difficult for our world this past year and the heaviness of this is weighing on us as we seem to be carrying more and more.  Do we still see positives in our journey?  Absolutely.  But that doesn’t mean that it isn’t so so hard at times.  I am incredibly thankful for a God who is gracious to give us all the strength we need to take one step at a time, as I know I am so insufficient for this role.