As I write this, you are sitting with my
daughter, playing and trying to laugh, maybe teaching her to count, and
doing all the things that I want you to be doing.  You're doing it with
a serious physical disability and I truly admire what you are able to
accomplish every day. The problem that I have today is this: your mouth
is swollen to the point that you can't close it. You've got your tongue
off to one side so that you don't accidentally bit down - on your soft,
pliant tongue - and cause more swelling in your mouth. You have

two teeth that desperately need to be extracted, but you won't go to
your doctor's appointment tomorrow. I know that a lot of it is fear. I
know that a lot of it is that you are irrational from the amount of
pain that you're in. I know that your Fibromyalgia causes you
severe pain. Trust me. I'm the one who is calling your doctor every
month, buttering up the receptionist and generally kissing ass to make
sure that you get the little pain medication that we've been able to
get for you. I'm the one who spent hours upon hours online, searching
FM forums, desperately emailing every single person who mentioned that
they were getting help for their pain, and pleading with them
to tell me the name of their doctor. No, I'm not living the same hell
that you are living. I've got my own personalized version.

I
don't have many childhood memories. As a result, I can't remember a
time when you weren't in pain like this. I've clearly blocked the first
few years of your diagnosis - those were the worst. I think as a result
I've managed to block most of my childhood, too. It's something I'm
working on, but I don't know that I want to remember.

So
every single memory that I have of you, every single picture (the few
that you've allowed me to take), every single e-mail... you were in
pain. You are in pain. And you don't take care of yourself the way that
you should. Because you have the same guilt that we all have. You have
guilt that your children see you in pain, and you have guilt that you
can't do everything anymore. And it makes you crabby. It makes you
irrational. It makes you lash out at me. I can handle most of that,
because I understand it.

But
I think that you need to understand exactly how it feels to be on the
other side of this fence. Or at least have an idea of it. Because you
are with my daughter today. She is seeing you in the pain that you are
in (pain, which, frankly, could have been avoided if you'd let me
help). And she will continue to see the pain that you're in. I don't
want to hide her from all of it. It's important that she understands.
It's an important lesson for her to learn. Compassion. Understanding.
Love. How to help someone without insulting them. It will do her a lot
of good. Even if it wasn't going to, you are her family. She needs to
know you.

So
please, understand this. Watching someone that you love in pain every
day, whether that pain is something that you can control or not, causes
a huge amount of guilt. It doesn't matter if you put on a happy face.
It doesn't matter if you still try to do as much as you could do before
you were ill. It won't make a difference if you think that you're
hiding it. You aren't fooling anyone who knows you. Boopie knows you.
She knows when you aren't feeling well. She comes up and puts her hands
on either side of your face and says, "You ok?" She's aware that you
can't do as much as Mommy can. And she will always be aware that you
are in pain.

It
causes guilt because to those who love you, it hurts us deeply to know
that we can't help you. We want to do everything for you to keep you
from having pain. I want to cook your food, chew it for you even. I
want to clean your house. I want to do your errands. But I can't do
those things, because you are a human being, with a personality and a
passion for life, and you can't become an invalid just so that I can
feel like I'm helping you somehow. This is my struggle. This will be
Boopie's struggle. It is the struggle that we all have in our family
when it comes to you, and it's not your fault. There isn't anything you can do except be aware.

I'm
not trying to take away your independance. I'm not trying to control
you, or coddle you, or undermine you. I just want to help, goddamnit! 
I just want to see you smile without pain behind your eyes.

So
when I get angry because your mouth is swollen and you haven't gotten
to the dentist, or because you didn't take your sleeping pill, or
because you haven't "remembered" to take your pain medication (and
trust me, you aren't fooling me on that. You just hate to take it. You
don't like being dependent on it. Dependent. Not addicted.
) - I'm not angry at you. I think I'm angry at me. For not being able
to do anything about it. For not being able to help. For constantly
messing up that balance between letting you do your own thing, and
making sure that you're taken care of.

You
told me not to call the dentist, so I didn't. This time, I probably
should have. And now you're in pain, more pain, and this one? This one
I think I could have prevented, and I may not forgive myself for that.