Zoe has had a rough couple of months. She has ongoing diarrhea, fatigue, and chronic pain issues. She has been hospitalized a couple of times and has been back and forth many times for appointments. She has missed as much school as she has been able to attend. With all of this going on, Gavin and I are struggling to fit the fun and normal activities into Zoe's day. We are exhausted and overwhelmed at times. Every time it seems we are getting back into a normal routine, Zoe ends up in hospital and everything is in chaos again. Zoe got out of hospital yesterday morning and we decided to take a weekend off. We turned off the phone and only did fun things like decorating pumpkins and deciding on Halloween costumes. I have many cute pumpkin scooping pictures to post but for tonight I want to post something a little more on the serious side. We have another hospital appointment in the morning and we are feeling scared about what we might hear. I wrote this the other day:
Early Morning Hospital Thoughts
I've always been most comfortable in hospitals late at night or very early in the morning.
Same as airports.
There's a deserted, but active feeling about the place.
And everyone you pass gives a knowing half smile like they are saying, "Yeah, I'm stuck here too."
There is a peaceful calm in the hallways as I push Ailsa with one hand and balance a tray with coffee cups and food in the other.
I try to focus on the calm feeling.
It reminds me of sitting in the Buddhist Temple room at the Museum of Fine Arts in Boston.
Or a really, really old church somewhere in Scotland or England. I don't remember the name of it or where it was but I remember that feeling.
Peace and quiet.
Everyone coming together for the same reason.
Wandering around. Smiling at strangers. Thinking, "Oh, you too?"
I try not to think about Zoe seizing. Turning pale. Lying there limp.
Zoe in and out of hospital, back and forth to appointments.
For every day in hospital or at an appointment there is a green square on the calendar. Non appointment days remain white.
The last few months there are far more green squares than white.
We see all these dots connecting.
A picture emerges that I try to push out of my mind.
In that picture my beautiful, brilliant and wonderful daughter has some serious health needs. We are faced with decisions to keep her safe. They can not get IV lines into her- she was poked six times in two days. What do we do about that?
She still has diarrhea. She is so tired all the time. She has missed as many days at school as she has attended.
What do we do about that?
They are sending us to the oncology clinic on Monday for test results.
What if all these dots suddenly connect and make sense to those doctors?
Is Zoe getting sicker or just having a really bad year?
She is so strong. So determined. So beautiful. Why doesn't life give her a break? She has to fight every day of her life just to be active, why make it harder?
Zoe tells me she is scared and sad and angry. I hold her as she cries. Tell her I feel the same.
And my heart breaks.
No child should have to go through all that she does.
No parent should have to see their child go through this.
I refocus my mind- think about the day. Stop thinking about the big picture.
Picked up some pumpkins on the way home from the hospital. We are going to have fun scooping them out with the girls.
For the moment, all is calm. Gavin and Zoe sleep. I take a hot bath. And Alison- wonderful, generous Alison cleans our house, does the laundry, and plays with Ailsa.
Thank you for this moment to myself.
Burial at Sea
2 weeks ago