This isn't going to be a general guide, or a "how to." It's about sharing some experiences we've had recently, adjusting to a "new normal," and how this new journey has fit with unschooling.
Having a person in the family with a sudden (or at least suddenly discovered) chronic illness readjusts priorities in a heartbeat, and changes EVERYTHING.
There are, however, things we learned through this that we've found valuable.
At the beginning of what I've come to call my daughter's Medical Mystery Tour, it seemed like a fairly normal thing.
An ear infection.
Kids get those, right?
I mean, when I was a kid, I had ear infections often, and remember well both the misery, and my Dad taking care of me.
And I had been told, or absorbed from somewhere, that kids having ear infections was simply part of life, and a thing everyone had to deal with.
Except my kids never had one.
Three kids, 20-something years, no ear infections. Ever.
Until suddenly, at the age of 19, here we are, in the emergency room in the middle of the night, miserable daughter, in pain, and an ER doc who looks for horses rather than zebras, and diagnoses an ear infection. He said that it didn't really LOOK like one when he looked in her ear, but all the other signs and symptoms matched, so here, have some antibiotics, and an ear drop pain medication, and follow up with your regular doctor.
So far, it seemed like an ordinary, run-of-the-mill, if later-in-life-than-expected, sort of thing.
And for about three days, we believed it.
We embarked on a grand adventure of love and learning, of family bonding, of rearranging our lives and habits, of relying on each other.
Yeah, it sounds grand, doesn't it?
I suppose, in a sense, it really was (and is) all those things.
But living through it?
There were many times we'd have chosen somewhat less rosy-sounding words to describe this particular experience.
Having a child in pain gets right to the heart of parenting, in a hurry.
In a no-nonsense, what other people think no longer matters, we need to deal with this right now, in the moment, and Just. Keep. Breathing. sort of way.
If ever I had thought, before, that I was the one in charge of things around here, I quickly learned, at a whole new level, that I was not.
Instead, what was "in charge" was doing whatever we needed to do, in the moment, to allow my daughter whatever level of functioning she was capable of, with as much support and care, and as little expectation, as possible.
Sometimes, it was nearly invisible.
Her meds were working well, she was feeling sort of okay, and we could go out and do things like a nearly normal family.
We never knew how long that would last, though.
An hour? Two?
We learned to find things that were fun, interesting, flexible, low stress (both physically and mentally) and easily interruptible. Things we could drop in on- and things we could leave.
It became nearly impossible to make plans that involved others outside our family. Hard to commit to any specific activity at a specific time.
We never knew when we'd be making another trip to the ER, or when we'd be able to get appointments with specialists (and whenever those were available, we HAD TO take them, since some required MONTHS of waiting and were not easily rescheduled).
This situation that primarily physically affected my daughter, affected everyone else in the family, as well.
It had to.
Some of her needs required being the priority.
Over everything else. Sorry. :-(
My daughter could not be left alone, ever, and this required a lot of flexibility and commitment juggling for all of us.
This was difficult for everyone.
Not out of anyone begrudging her what she needed, but because it simply isn't fair, to anyone.
Being "in the moment" is a great thing, no question- but being unable to plan anything ahead of time, and unable to keep any sort of schedule, turns out to be very draining in the long run.
A complicating factor in all of it is that whatever it was that was the problem, medically, was invisible to the eye.
No one outside my daughter had any way of understanding or knowing what she was going through, and we began to experience having people question whether it was "real." Is she REALLY sick, or is she faking it, or exaggerating, or looking for attention, or trying to get her way, or trying to avoid doing things she doesn't want to do, or…. on and on and on.
This is not an unusual experience for MANY people who have chronic illnesses, especially those involving pain, that other people cannot see.
It was, for us, a very NEW experience.
But you know… having people question a child's "motives," and decide that adults know better what they need, and how, and when, and what is or is not "real" or important, and suggesting that the child is "attention seeking" and just needs to be ignored or told what to do… THAT was not a new experience, at all.
It's fairly standard for unschooling families, especially at first, when their friends and family have no idea what on earth crazy thing they have decided to do.
Interestingly, having gone through that whole thing when the kids were young came back to make it much easier for us to deal with it NOW.
It all comes down to the same thing: what are the child's actual needs? What is developmentally appropriate? What CAN they do? What do they need help with? How can I support those needs? How can I allow and encourage in my child as much autonomy as possible, without it being pressure? How do we manage OUR needs well, while respecting the needs of others?
What no longer mattered was what we had been able to do BEFORE.
What mattered is what we were able to do NOW.
In this moment.
Even if it has changed from moments before.
Every day was a new experience of finding out what we could and could not do.
Of being flexible and trying to give everyone the benefit of the doubt.
Of understanding that we all were struggling in our own ways with this, and that we needed each other.
We had days where our primary activity was lying on the couch, with me holding my daughter while she shook with pain.
Yes, it was as horrible as that sounds.
Absolutely nothing I could do to help her, other than be there, with her.
And then, in a heartbeat, the symptoms would abate temporarily. A moment of peace, out of the blue.
It took nearly two years to find a diagnosis that seems to make sense.
In that time, we saw MANY doctors, she went through MANY tests (some quite uncomfortable; most not such a big deal).
We had a wide variety of potential diagnoses that turned out not to be what was happening.
We were blessed with some great doctors, who were very creative in trying everything they could think of.
We became our own experts.
Lots of research. Record keeping.
We learned how to navigate the health care system.
What to say to doctors- and what NOT to say.
We learned about medications and mechanisms of action and side effects and interactions and half lives.
We learned to ask for help and support.
We learned to adjust and change plans on the fly.
We played, as much as possible, in as many different ways as we could.
We listened to live music- an emotional/spiritual lifesaver.
We started doing things that we had put off for later, when we could, because we suddenly had an even more clear understanding that at any moment, we might not be able to.
We had long conversations, when we could do little else.
We had times of silence.
We had struggles with our fears for the future, whether it was a long term financial fear, or a fear of what was happening in the next few moments.
At the heart of it, it was- and is- all about respecting each other, and what IS, rather than either trying to conform to anyone's expectations, or make the world conform to us. It is about living and breathing in the best way possible for each of us.
We now have a diagnosis.
It turns out that part of what made it so difficult to figure out is that it is not one thing, but two. Two things that don't happen together- happening together.
So much for statistics. :-)
As many people know, that "one in a million" chance turns out to be 100% when it's YOU.
We have moved through a few different treatments.
Things are mostly better.
Not gone. Not "solved." Not "cured."
And every time things begin to go smoothly for a while, we'll have a setback. Medication side effects. Changes in symptoms. Dealing with the various medication schedules and changes. Some new twist.
It may always be this way.
For now, we're making the best of this reprieve.
Trying to "make up for" things that got shoved aside or deprioritized, that, under "normal" circumstances would have happened already.
I'm spending more time with my son, who suffered the brunt of the "suddenly there is another priority" situation, and had some of his needs go unmet for a while. This is something I will always wish had not been so, but it was the way it was. Even now, I do not know how that could have been managed better, with the resources and skills that we had- but we are continuing to work on improving both.
I'm still constantly examining and processing and considering how we might move forward. We all are.
All in all, the whole thing has been another chapter in unschooling, in respecting needs, what is, rather than what anyone thinks should be (even us!).
In listening to and appreciating the people right here, rather than trying to make someone else's ideas and "solutions" fit.
In thinking outside the box.
In continuing to learn, find out, experiment, and never give up.
In listening to our hearts.
In believing, and believing in, each other.
One last interesting bit:
It has been through this experience that my daughter has found her passion.
She wants to work with people who have illnesses no one can see, to support and care for them, to help them feel believed and valued.
Sometimes, in the darkest, most painful, most difficult moments, it is that one thing: "I hear you, and I believe you," that makes a world of difference.