As I am sure those of you who follow this blog know, we have had some holes in our nursing care over the last few weeks/months. And it has been hard on all of us. Ezzy misses her former caregivers, and all of our schedules have been turned upside down. I feel as though we have been in a perpetual state of searching for caregivers, interviewing caregivers, training caregivers, etc. Things are, however, normalizing somewhat. There are still some holes in our night schedule and I have no daytime nurse (although we have non-nurse caregivers for days), but I am doing my very best to not just make it work…but to find opportunities in having more time with Ez during the day (knowing my work will have to wait). But the nights are harder for all of us.

We haven’t been able to find anyone who can cover Thursday nights with Ez. Two weeks ago my hubby was out of town on Thursday and the idea of a night at home alone with Ezzy trying to keep to some kind of schedule while she wound up being all night anyway just seemed so very unpleasant. So, I decided that we would just do something different. The logic was: Ez not sleeping all night at home = annoyance. But: Ezzy not sleeping all night while we had a bit of an adventure = fun.

So, we planned to go out and visit my parents at their farm. My mom and step-dad live about 40 minutes away from our place. In all the years since Ez was born we’ve only spent two other nights there. One night was when Ez was really little, just a few days before she wound up in the ER with aspiration pneumonia. There was one other overnight when she was perhaps 18 months old. The fact that she’s had so few overnights there is something that makes me really sad, honestly. The home had been my grandparents and I used to go and spend nights there snuggled in bed next to my own grandmother…and days baking cookies and picking apples. I had envisioned my child spending overnights and lazy weekends at both her local grandparents’ homes, baking with Mema (my mom), feeding animals with Zaidee (my step-dad), running around with Doo-Dah (my dad), and gardening with Yama (my step-mom). I have watched my nephew and niece (as well as the children of my extended family and friends) engage in these experiences regularly…and while we bring Ez to visit as often as we can, until recently, these visits have often needed to be cut short or carefully contained so that Esmé can handle them. So much of how we care for Ez has relied on preventative choices–needing to leave before there is a problem–that sometimes we choose not to do things at all…even if we’d like to, because there will be a lot of people, or because the timing doesn’t work for Ez’s schedule, or because she is on the edge of being unwell.

However, Ez has been handling stimulation and excitement differently of late. She has been responding well to being pushed socially, physically, intellectually, and behaviorally. And so when idea of this quiet Thursday night at the farm popped into my mind, it seemed to be just the thing. And, as it turned out, both my mom and my step-dad were able to leave their offices a bit early (they are both attorneys)…so we could have a quiet late afternoon and evening at the farm. And mom was able to hang around in the morning as well. Even Ezzy’s uncle Baba was around to spend time with her!

We set up a sleeping area in the tv room downstairs so that I could reach the fridge and stove easily to do meds and food in the middle of the night…plus the tv was insurance in the event that Ez was awake for the better half of the night. But, here’s the thing: She actually slept the whole night!

I woke up at 7am wondering what the heck had happened!

That morning I helped my step-dad with his morning chores–feeding the chickens, checking on the sheep–while Ezzy and Mema played in the house. Then Mema and I took Ezzy for a walk in her wagon. She visited Bear, the guardian of the sheep, took a ride to meet the chickens and sheep…and generally explored the whole place. Ez was curious and engaged in ways she’d not been before…even tracking geese flying overhead, something she’s never done before.

It was so great, we went ahead and did it the next week as well!

It was just so much fun. And it made my heart lift to see the beginnings of her being able to engage with this special place–a place that was so meaningful in my childhood, a place that is meaningful in my family. A place I’d worried wouldn’t feel like “hers” in the way it had to me growing up.
But something tells me I don’t need to worry about that anymore.


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