So, you know what, I feel a little bit of a rant coming on…I have truly been trying to nurture the positive these days–which my writing may suffer from in some respects…I mean, who doesn’t enjoy it when I loose it a little bit about doctors or insurance or whatever weird thing happened last time we went to Target?
I like being positive, truly, I do. And I have really come to terms with a lot about our lives…including the fact that other people are dealing with their own battles and have a right to be upset about their children’s colds and scraped knees and broken bones and report card “B”s...I feel a bit like it is sort of a beautiful thing to watch a parent take the general health of their child for granted, honestly. I wish we all could. And I say that with complete emotional honesty.
But there is a sacred place when it comes to children’s health…the hospital. And “overhearing” another parent complain about the inconvenience of having their child in the hospital for a few days just completely threw me into a rage the other day.Because I know lots of people who have their children in hospitals–some for months or years out of their lives, others will spend a very few days because of a temporary and treatable problem. It is never fun or easy to have a child in the hospital. But as a parent who has seen too many children not make it back home, it makes me livid to hear someone complaining about the inconvenience of their child being in the hospital. In the spirit of trying to be positive, rather than recount the details of my anger I would like to explain what comes before it…
It was in going to our Children’s Hospital that I first became hyperaware of our good fortune. Walking around that hospital you cannot help but notice the number of children and families who are in far more challenging circumstances than we are…whether it is only for a short period of time or over a child’s lifetime.
Being at that hospital never fails to make me count our blessings…for Esmé, for our slow and shaky improvement for the time being…but also for our chance at health. There are many places in the world that a child like Esmé would not have had even a glimmer of a chance. And, yet, here we are seeking care at one of the best medical facilities in the world…and she is, all things considered, thriving…in her own Esmé-kind of way. It makes my heart break when I think about what it would have been like to be somewhere in a situation where I could not have fought for my child in the ways I have.
We are so blessed.
Now Esmé has averaged almost a month of hospital stays per year since her birth. This does not include the outpatient procedures–including various imaging studies (one outpatient MRI, two VCUGs, one urodynamic study, countless kidney ultrasounds, 5 swallow studies, maybe 8 upper GI studies, outpatient EEGs, EKGs, EMG…I’m sure there is more), various evaluations, and what must be well over a hundred doctors’ appointments that happen locally and about once a month (ofter over two days) in Boston. We also have a feeding tube, nursing care, a personal level of medical knowledge, and an arsenal of medical supplies that keeps Esmé out of the hospital for many things that would likely hospitalize a “typically developing” child.
And I want to be clear: We are lucky. And my rant comes from that place of knowing our good fortune…
We spend a decent amount of time at those sacred places: Children’s hospitals. And I will admit to getting frustrated and angry (occasionally VERY frustrated and angry) out of fear and fatigue (and that’s ok). I do get frustrated because I want to go home, because the nurses or doctors wake Esmé, because something happens that makes me feel she isn’t as safe as I would like. And sometimes we have to fight for what we think is best for her (earlier discharge, fewer procedures, etc)…but we do try our very best to not loose sight of the big picture. After Esmé’s last surgery we met a family that had been inpatient with their son for over a year. One whole year. Talk about perspective.
At any given moment there are children in hospitals having incredibly risky procedures, in pain, and frightened…More than that, we all know there are children who never make it home from the hospital…some of them have been Ezzy’s friends.
We spend more time than I would like in the hospital, figuring out ways to sleep two adults on a pull-out chair, sitting up in shifts watching for what monitors will pick up only on a delay, and sleeping very little. It is not ideal. But we are lucky. Lucky our child isn’t the sickest child there this time, lucky she will go home, lucky that we have access to care like this.
The hospital is a sacred realm. It is a place for recognizing that others may have a long hard road laid out in front of them. The hospital is one place that you should not be taking your child’s health for granted…
Please.