No Batteries Required

Every day a tiny bit more of ‘Wes’ disappears and for those who have ever walked this road with their loved one they know that this is the hardest part of the journey with any disease, ours just happens to be a brain tumor.  

To acknowledge that this is really happening has been pretty tough and it comes in waves.  There are those days when you are just ‘doing’ and the day moves along with not much change in our routine.  Then there’s days like we’ve had this week when the routine changes a bit more drastically then we would like.  As the week progressed we’ve had another change, a different one than what I had shared with you in the previous post.  Those pills I mentioned that were slowly becoming an issue, have now become an issue; of course some of them are horse pills which I would have found difficult to swallow on a good day.  But, the decision was made to put a line into each of his legs so that his meds could be injected instead of swallowed and with the line then he would not be enduring more needles on top of the insulin shots he receives twice a day.  They have also begun turning him every few hours because he no longer has the strength to turn on his own.  He is now in bed 24 hours a day.  And that's when reality can hit you like a really bad sucker punch.

So last night we started yet another shift, this one in his sleep habits.  He started to become more restless and didn’t seem to be able to stay in as deep a sleep as he had been doing.  We’re not always sure what is bothering him, but, the nurses work hard to help me figure it out and thankfully they did.  They realized that there are a couple of reasons why he's so restless and one of them is that he would like to be turned and so they take care of that very quickly.  They are so willing to try anything to make sure that he is comfortable.  He hasn’t been eating much today, at breakfast he fell asleep between the miniscule portions of his porridge and though lunch was a wee bit better, supper was not.   I sadly handed the full tray back to the young woman collecting them, maybe later I’ll try some mashed up fruit for night snack but we’ll see if that even entices him.  On those days when he doesn't want it eat there's not much that can convince him otherwise.  One day, one hour, one minute at a time.

Even through all the hard moments of watching him fight this long hard battle, our focus as a family has been to continue to look at those tiny things that are still ‘Wes’ or ‘dad’, because we know he’s still here.

Yesterday evening we celebrated Dom’s birthday, his birthday is really on Saturday but we thought we’d celebrate a bit early because Wes started out with not too bad a day.  So, yup we planned a repeat performance of pizza and  ice cream cake and I was hoping that even though Wes could not participate in the pizza part that he would at least be able to enjoy the ice-cream part.  Unfortunately that was not the case.  His day that seemed to start out alright just ran out of steam by supper time.  So he needed his quiet and his rest which meant we would delegate the party to the cafeteria.

And we had a good time celebrating with the grandkids and then it was time for Dom to open his
 presents that I had purchased for him.  He loved them although he was so slow with opening them!  Good night nurse, I would have ripped them apart as fast as possible, but, he reminded me of one of those little old ladies, you know who I'm talking about or maybe your one of them.  One that carefully peels away the wrapping paper because she wants to save the paper so she can use it again?  It was pretty hilarious watching him tear off tiny bits of paper.  And then of course after he finally opens it, like an hour later, we realized that one of the gifts that I had purchased needed batteries, oh yeah, and did I check that before I bought it?  Uh, no and why not? Because I never do and it used to drive Wes crazy!  I think we were all thinking the same thing while we were reading the box to find out what kind of batteries it needed.  

If dad was here he would have said, “Did you at least buy batteries for it?”  And I would have said, "Why?  Does it need batteries?"  And the minute he realized that I hadn't bothered checking which meant that 'no' I never purchased any batteries he would leave the party to run out and buy some as fast as he could, like really, that minute.  It's happened at a few birthday parties where he's either running around the house looking for spare batteries or he's actually left the party to run out and buy batteries.  It was so funny because I'd look around and say, "Where did dad go?"  and Mark would say, "He ran out to get batteries"  And I'd usually respond with "Seriously?"  There was nothing that was going to stop his grandchildren from playing with their gift right there and then!  And nothing irritated him more than when I wouldn't check any gifts I'd purchased for their battery requirements.  Only one of the little pet peeves I blessed him with.  I had a few.

As the party in the cafeteria came to a close the grandkids kept asking, “Can we go see Papa now?”  and though he’s no longer able to respond to them in the same way that he did before, he’s still papa and they need to see him.   So, here’s what I’ve learned about children and life in palliative care.  They get it.  They don’t bother asking papa all sorts of unnecessary questions or bombard him with conversation that doesn’t matter to him anymore, they walk into his room and all they want is to be able to give him a hug, they express their love in the best way they can and then they are content.  Early in our stay here I was told that children often handle these situations better than some adults do and I have to say, they were right.

As our boys and Tina gave dad their hugs goodbye that evening and they whispered, for the hundredth time, the words, “I love you dad!” into his ear he still has one response that has stayed clearly ‘dad’.  He holds their hand and squeezes (although now the squeeze has a lot less strength) or he wraps his good arm around them and hugs them (again a lot less strength) but the message is clear.  I know you’re here and I love you too!

The power in that moment where love is expressed is incredible. We do not walk away from that bed the same as when we approached it.  Watching the  love that emanates from the touch between a father and his children is almost unexplainable.  It's tangible, it’s powerful and it crosses any barriers that some may think exist because he’s no longer able to speak.  There is power and passion in that gentle touch.  

Jesus knew the importance of touch.  He touched many people especially when He healed them.  He didn’t have too really, as in the case of Lazarus when he simply called for Lazarus to come out, but more often than not he did touch those who needed His touch.  God knew that we too would need the touch of Jesus in order for us to understand that we are loved by God.

That’s where the word ‘incarnate’ comes from.  Jesus was the physical presence of God for us.  Which reminds me of the Christmas verse that we all know from Matthew 1:23

"...they shall call his name EMMANUEL, which being interpreted is, GOD WITH US."

God with us.  And I can tell you without a doubt that verse speaks truth because God’s here with us right now in this hospital room.  It’s tangible, just like a father’s touch.  God with us.  His presence is all around us.  Every breath we take, we inhale the sweet fragrance that holds the promise of Heaven.  Every step we take inside this room is guided carefully by Him and as the poem says, there are times when we don't see our footprints before and behind because in those moments He carries us.  Every tear we cry never falls without an audience because He is watching and He grieves with us.  Even those moments of laughter, those times of sharing those bittersweet memories that he gifts to us, are given to us to bring us joy in the midst of sorrow. That's what a father will do to let his children know that he loves them. It's all about the gifts.

Wes is still letting his children know too that he loves them.  Sometimes it’s through a gentle one-armed hug and others it’s by a tender holding of your hand.  It's all he has left, but;

It’s powerful.

It’s genuine.

It’s pure love.

It’s the final expression of a father’s love

So, Christmas is coming and with it comes the reminder of God's love for us through the birth of His Son Jesus.  That's a great gift if your willing to accept it and I'm not sure why you wouldn't because seriously, it's the perfect gift from our Father in Heaven to His children. And it doesn't need batteries!  Thank goodness!