April 6

How are we doing?

 

It’s a mixed bag when I’m asked this question.

 

Life goes on, and we must go on with it. Nothing good ever comes of being the rock in the middle of the river, refusing to roll – You just get eroded away over time, becoming smaller and smaller.

So day to day? Sure we’re coping. Just like when people ask us what its like living in the US vs NZ – It’s much the same, really. You get up you eat breakfast, go to work, got to the market, come home, do some stuff then rinse and repeat. So sure, we’re doing okay in that regard. It’s almost good to have a certain amount of regularity back.

We’re working on breaking the habit of looking in to check up on Joshua every time we walk down the hall. We’re slowly picking things up and putting them in his room as now we know he won’t need them ‘here’ anymore. I’m learning that I don’t need to pick up certain things at the supermarket, and that the seats in the car can now stay back not be moved forward so long legs can fit. Every day it’s little things.

I’ve struggled somewhat the last week – especially since we’ve had cold snowy days (which I usually like). I’ve lots of things to do, but not quite the will to do them. The routine of hospitals and nurse visits had become so ingrained its tough to learn to do without them being the base routine. I’m sure, once I head back to work and have that routine again I will start to find my footing.

Tomorrow would have been Joshua’s 17th Birthday.

I’m not sure how I’m going to deal with that. I’ve enough things planned in the morning to keep my mind off of it.  I’m not sure if i’ll be in a total funk, or it’s still too close to his passing that its all jumbled in. Either way, I think we’ll go to Crave and get a burger and an ‘oreo speed wagon’ shake in his honor.

 

PS: A lovely post about Joshua from Teresa who’s missing her buddy too.

Mar 21

Today was Joshua’s Memorial Service.  We will have a full video of the service in the next few days for everyone to see, but just a few photos of the arrangements up front for now.

From All The Grandparents
The main display
Finished display

Mar 16 – Memorial Service

Joshua’s Memorial Service will be held Tuesday March 21st at 2.30pm. A small reception will follow at the venue.

Horan & McConaty Chapel
SOUTH DENVER
1091 S. Colorado Boulevard
Denver, CO 80246

In lieu of flowers, we will be taking donations to add to the remaining funds from his Go Fund Me and donating them directly to GBM research (most likely the Morgan Adams Foundation.)

Mar 13

So day 4 at Hospice.

Joshua is, for the want of a better word, comatose. We’ve had no alert reaction since Friday night when the Scott’s brought William and Aiden to say goodbye. Julia & Stace had a couple of open eye moments on Saturday when they visited.

My heart feels big knowing my son has friends with big hearts who wanted to say goodbye in person. That’s a tough, tough thing to do – I can attest to having moments where being in the room seems to hard for me.

He’s having moments of verbalization with a hand to his forehead so we’re increasing pain medication again today. Between the tumors, the hydrocephaly and Joshua’s natural high pain threshold, I can’t even imagine how painful it must be to make him vocalize.

We can only hope that today he manages to let all the pain go.

Mar 8

Long long night last night.

Joshua is increasingly confused and he wakes up and wants to do things he shouldn’t – like getting himself out of the bed to go to the bathroom at 4.30am.

He tends to wake up and think its 6months or so ago, but with smatterings of now, and wants to know why we let him sleep so long because now he’s missed dinner! Unfortunately, his stomach doesn’t digest any longer, so food is out of the question.

I think one of the things I’ll suggest to the hospital is a handout telling you what to expect when you take your child home to die. Because this is not what was expected. Not at all.

Of course, Tony tells me its because he takes after his mother and he’s a stubborn cuss and thats how he’s still going.

Mar 4

We really thought we would have had to move Joshua to the Hospice in Lowry this weekend. But yet again, he’s bucking the odds.

Yesterday involved spending most of the day on the couch with us drinking Fanta, of all things. He managed to keep it all down which surprised us all no end. They changed up his med dosages yesterday and they knocked him out about 4 pm and he’s been pretty  sleepy since then.

He becoming a little less ‘together’ each day – a combo of tumor growth and lack of oxygen – he’s still talking, but often not relevant to the conversation.

So no ICC for us this weekend.

Feb 20th

Joshua is finally  weaned off the Keppra (so he’s no longer on the 2000/mg a day PLUS the Versed) and the steroid  is finished, so he’s much more alert than he has been for the last half of the week. He was pretty much a bit of a zombie there for a bit. The last two days he’s had a few hours awake each time he’s been up which has been lovely!

We got some photos with the Grands before the day was out:

Then the Lambrecht’s bought us over dinner – along with heart shaped cornbread. Cornbread is Joshua’s FAV!

Feb 19th

Joshua had some visitors today!

And a 4 legged visitor. Van Gogh has a tail like a whip, is a happy happy dog who loves to play chase his ball… and has quite and interest in meeting cats! (MaoMao, how ever didn’t join him in his endeavor to be friendly!)

And topped the day off feeling really good, and had dinner out. He didn’t eat much, until he got to dessert… of course!