The Bitter Sweet Passing Of My Dad

As some of you may know, my Dad passed away on Saturday night.   We were blessed to be able to be there with him, but it doesn’t change the fact that I watched my father die right in front of my very eyes.

I watched as his body slowly gave up the fight.

We should go right back to 2000 when his body first started giving up on him.  He was diagnosed with Inclusion Body Myositis, a rare (1 in a million) form of Muscular Dystrophy that slowly degenerates every single muscle in the body.  For 14 years he lived with having to re-adjust his lifestyle every time he grew to weak to do another thing – first it was being able to get up from the floor, then it was bending his legs, then it was driving, then it was walking, then it was the littlest things that we take for granted every single day.  Just lifting or moving his own arm was basically impossible for him.

He was being trapped by his own body and yet he was mostly the most positive man you could have the privilege of knowing.  His body may have been failing him, but his mind was a sharp as a tack.  I have so much more to say about how brave and strong he was in light of his affliction, but I’m going to save it for another day.  A day when I will do him justice with my words.  Which will be a very hard feat.

We knew that his condition would be the reason that he left us behind, but we just never knew when it would happen.  No one did and no one could.  As his condition worsened over the last year I dreaded unexpected phone calls from my mother in case it was actually happening.

And now it was.

At first, when he was admitted into the ER and then the ICU for pneumonia, his high heart rate was scary – no one should have a resting heart beat of over 130, but then it became a comfort, knowing that it was working so hard to keep him with us.  Despite various forms of antibiotics and physio to try to get the gunk out, the pneumonia remained.  He just didn’t have the muscles he needed in order to cough it up.

In the days after his admission we went to visit him every day, filled with hope for the possibility of a cure but knowing deep down that this was probably the end, the last time that we might be able to tell him we loved him and for him to actually hear it.  Sometimes we were filled with guilt and pain at the fleeting thoughts that death might actually be the release he needed to escape his human prison – an end to his suffering, his pain, his humiliation, his despair and his worry.

And then the call came.  It was time.  The Doctor didn’t think that he had much longer with us.  We rushed off to the hospital.

We got to the hospital and tried to communicate with him even though he was very clearly unconscious.

We watched as the machines kept beeping and shouting that his body was not doing what it was supposed to do.

We watched as they took him off the ventilator that was manually filling his lungs with oxygen in a desperate attempt to get clear the gunk and keep him going.

We watched as they pulled off the mask and his pale, slack face emerged, tongue lolling out the side, covered in bruises from the various gadgets that they had him hooked up to over the last few days.

We watched as they put on the normal oxygen mask and how his heart rate just kept dropping and dropping. 99… 87… 82…60… 44…  37… 20… 37….

We watched as his lungs gave up first, from desperate (but peaceful) attempts to get air in to just nothing.  No movement at all.  37… 29… 20… 10… 36…

We watched as his heart, the heart that loved us all so much, kept beating.  Despite his lungs failing him.  10… 4…

We watched as his heart stopped.  But then started again.  Stubborn all the way until the end. 0… 4… 4… 4…

We watched as his heart stopped for good.  0 —

We watched as my beloved Dad went to be with our Saviour.  Our Jesus.

We rejoiced in the knowledge that he is with our Lord with a perfect body – running and jumping and dancing and singing.  We grieve that we are left in this World without him.