It is hard having a child with a chronic illness.
Unless you experience it yourself, you really cannot grasp how thoroughly it permeates every facet of your life. How that illness turns everything you knew on its head and changes your life completely. It is especially hard when you have to interact with people who really don’t understand what you are going through, because they haven’t ‘fallen down the rabbit hole‘ like you have. Those people are almost always well meaning and simply making small talk, but sometimes that small talk is like a knife in the heart.
Case in point: Now that summer is here, from time to time, someone will casually ask something like, ‘so, what are you doing this summer?’ And because my choice of answers are rather limited…
- Nothing at all, because my kid is too ill to travel
- Pushing calories to make sure she doesn’t loose any more weight and hoping she continues to recover from her recent surgery with no further complications
- Oh yeah, we are pretty excited to be going the the EDNF Learning Conference. What’s that, you ask? Well, it is this medical conference where we will get to hang out with other EDS families and learn from the best EDS experts in the world. What exactly is EDS, you ask? Oh, never mind…
I have about 2 seconds to ponder what to say that won’t come out sounding like a pity party (and if Em is with me, I really don’t want to say anything that will make her feel sad or guilty). And, then, because I was busy thinking all of that and didn’t actually give an answer other than rueful shake of my head, I usually get treated to an enthusiastic rundown of their plans.
Which are nothing much, of course. Just camping and canoeing and swimming and amusement parks and traveling and such. None of which my kid can do, even on her best day.
And all I can think is during this type of conversation is, ‘you have no idea how lucky you are’. Lucky to be clueless about chronic illness. Lucky to be “normal”. Lucky to have no limitations to consider when making plans. Lucky to be planning summer fun rather than doctor’s appointments.
It is so hard not to feel bitter and envious when confronted with conversations like this. But, how can I be truly upset when that person really is clueless – they just live in a different world than I do. The same world I used to live in. Before chronic illness saunters into your life, you don’t even have a clue that it exists, let alone what an upheaval its arrival will cause. Ignorance is bliss, right? And being genuinely ignorant of living with chronic illness is not something I can penalize anyone for.
Instead of dwelling on what we can’t do and what we are missing, a little counting our blessings goes a long way:
- We get to go to the EDNF Conference in August and hang out with people who ‘get it’ and learn from the best minds in the field – last year we couldn’t.
- We have access to therapy, good therapists and doctors who care and can help Em recover from surgery and get better and stronger than she was to begin with.
- Em is still alive and kicking, when the appendicitis could have killed her.
- She is getting better everyday and therapy is helping her get stronger.
- She has decent pain management, which she did not have last summer.
- She has proper and fairly effective treatment for her headache, thanks to Dr. Diana and the Driscoll Theory, which she did not have last year.
- We know so much more about the cause of most of her symptoms and have real hope for treatment in the coming months.
What are the typical pursuits of summer when held up next to these? Nothing at all, when you stop and think about it.