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.
It tickled us no end to know Joshua made it in to the news one last time!
Edit: Two last times!
Joshua’s Memorial Service will be held Tuesday March 21st at 2.30pm. A small reception will follow at the venue.
Horan & McConaty Chapel
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.)
Our hearts broke in an irrepairable way this morning.
At 7.19am to be exact.
Joshua has found peace at last.
Fly, Little Boy, Fly.
Another night of playing count the lack of breaths.
Joshua’s heart is still going great guns, even though other parts of him are shutting down.
One of the hospice volunteers performs reiki and asked if we’d like him to work with Joshua – I figure a little bit of balancing energy might be helpful in the room .
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.
We made the big decision to move Joshua to the Hospice ICC unit in Lowry.
He’s become increasingly confused, he’s very weak and Tony and I felt it was better to take the help so Joshua is comfortable these last few days.
Will we be any less stressed, no, but we might be a little less distressed about not being able to easily help him at home due to our inexperience.
Carolyn’s at home for the moment as we get him settled.
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.
Joshua is increasingly more confused and scattered. He’s very weak since he’s not been able to keep food or drink down for weeks. He’s sleeping the day away as we make sure the medications keep up with his pain – ironically, the kid has such a high pain threshold, he’s not taking much in the relative scheme of things.
We are assessing day by day as to when to move him to the hospice facility in Lowry.