Sometimes the hardest part about living and fighting with an illness is the living.

Let me explain, please.

It’s easy to wallow and feel shitty for yourself. I could do that daily if I wanted, and some days I do. But really, it’s more like some *moments* I do. That part is entirely easy. All the medication. All the doctor’s. All the IVs. All the fear for my family. Something many don’t get. I don’t really fear for me…I fear for them. And believe me that is way harder than just wallowing for yourself and feeling mad and angry about your situation. It’s feeling scared and worried constantly for everyone I love that kills me.

Then I get into the fight mood. I’m going to growl and kick Lupus to the curb, I’m going to be the strongest and most amazing person with Lupus EVER and will CRUSH anything in my path. ERIN SMASH LUPUS GRRRRRRRR.

But then, most of the time, it’s just the living. And that is the hardest part. Where you’re not really fighting and you’re not really angry and you’re not wallowing- there is no high or low- you just live. Every day. With this condition that affects every.single.day. of our lives right now.

Preparing meals ahead of time, scheduling pick ups and life for children whose mother will be hooked to an iv every single day this week so someone else may have to get them from school. Making sure permissions slips are signed, homework is done, husband has his hat for the cold wind by work, laundry is in, etc.

Life. Just life.

So when my friend Megan began her #OpEleanor challenge I ignored it. Well, I didn’t ignore, ignore it…I just decided that everything I wanted, everything I aim to do that I fear or that is new has no place in my life. This just life we have been struggling to cobble together since Lupus took it over.

As per usual, I want too much. I aim too high. I want it ALL and I want it NOW. So Operation Eleanor was too big for me. Right now, I have learned too much is too big for me. If I signed up I’d end up trying to climb Mt. Everest before the end of November and then Aaron would be mad because I’d train and get sicker and yet insist I keep training and then I’d end up med-evacuted off the top of mountain where I nearly killed myself trying to reach the summit because I want too much. I aim too high. I want it ALL and I want it NOW.

Go ahead, ask Aaron, he’ll tell you. I’d try it. I would actually try to climb that mountain, with Lupus,  and nearly die, or actually die, doing it. And all because I signed up for a blog challenge from a friend and refused to go small, or give up. And because one of my biggest fears is heights and right now my biggest challenge is, obviously, anything physical. So without even thinking Everest comes straight to mind in my Eleanor list and there you have it. The Vest family would be somewhere around Nepal and Tibet while I try to trek and do the impossible all because that is just how I am.

Thus my ignoring Megan’s challenge. It was safer. Just trust me on this. This means no one dies- and I am not exaggerating here.

But then, out of the darkness of me feeling totally ‘wallow’ and angry that I couldn’t accept this challenge and thus die, my husband tweeted that our eating and trying a new vegetarian dinner was an Operation Eleanor.

And of course, he was right. It was small, but it was something. and it was something I could and did do. Not everything has to be huge. Not everything has to be NOW and ALL and larger than life.

Sometimes it’s just life. And all it has to be is just life. And that needs to be enough.

It’s a lesson I am still learning. There is joy in aiming – but you don’t always have to shoot for the moon. There is joy at going BIG and once in a lifetime…but there is also serious joy in going small, and every day.

The is one of hardest things for me to grasp- it doesn’t have to be Mt. Everest each and every time. Even if Mt. Everest is how I roll.

So while I am not sure I can commit fully to this blogosphere fun, I can commit what I can handle: and right now that is day-to-day. New food. New ideas. If it can’t be Everest, maybe I can climb a ladder…which is just as terrifying for me, if not more than a large mountain.

Or other days it can be Everest. Or that Morocco shopping trip I promised my daughter while we saw the EPCOT version at Disney World…the one she still remembers and writes about in school…the one I WILL give her some day:

Or maybe I can just spend each day learning to be. And to be ok with it being small, being big, or being somewhere in between. Learning that this new life of mine is going to last awhile and I need to accept its challenges and it’s limits.

And be ok that sometimes just life happens in my new limits and that life is just fine and wonderful as is- it doesn’t need to be bigger or ALL or everything.

I am still here, which is an Operation Eleanor in and of itself. And as long as I continue to be here, it counts.

And if i keep telling myself that I might actually believe it. I’d just rather Everest.

I get it.

I understand it completely.

Some days I just need my kids.

Some days I just need my husband.

Most days I need all of them, within touching distance. I need them near and I need to know they are ok. But even more importantly, I want them to know I am ok.

It is important for all of us to know that everyone in the family is present and accounted for, and ok. Some days we just need to be close.

Treatment weeks are the worst. The kids are on edge. My husband is on edge. I am exhausted and worried about those I love.

We’ve tried a lot of different things to help everyone feel better when we are apart from each other for ‘scary’ doctor appointments or tests or treatment. We’ve tried secret handshakes, secret words, stuffed toys to pack in backpacks, notes in lunch boxes…you name it. But nothing has really stuck. This means that while I’m sitting with an iv in my arm the kids are usually at school, worried and upset. It makes learning hard, and it disrupts their thought process. It makes treatment hard, as I sit for hours on end with nothing to do but…well…sit. So I think and worry and worry and think and it’s all I can do to NOT call school 500 time asking how they are.

I’m not really sure what happened, but this week was harder than usual. Lots of tears. Lots of clingy drop-offs. And LOTS of nights with kids cuddled as tightly and closely as humanly possible in our king-sized bed.

Imagine if you will a very big bed, with four people and a dog all squeezed as close to each other as comfortable. And in many cases, even as close as might be uncomfortable. But that ‘stuck like glue’ feeling is where everyone breathes deeply and calmly. Our hearts finally slow a bit and tears dry and there seems to be some peace.

During one of these moments, my daughter told me she felt like she was inside my heart. My son has said something similar…something about wanting to get inside me so he could hear it pumping even MORE loudly so he could go to sleep easier. Once my daughter also told me that she thought only Mommy got to have Daddy’s heart, and she was relieved to know that she too held a special place inside her Dad’s heart.

And from somewhere in that pile of arms and legs and hugs and kisses, the ‘key’ to our heart(s) was born. Something we all could carry around, or wear, on tough days. Something to remind us that we’re never alone, and there are always three more in the family willing to make you laugh after never-ending treatment, willing to cuddle you after a long school day, or willing to just listen to all your worries.

This weekend at Disneyland my daughter and I saw some silver keys behind a case. Something lit up inside her, and she smiled and said ‘like the keys to our hearts Mommy’- and I knew what she meant…exactly what she meant. Of course she still doesn’t get the concept entirely, declaring that the middle of our living room also holds the family ‘heart’ – but generally she knows what it means.

We’re wearing our keys around our necks now…the girls are, anyway. The boys haven’t figured out exactly what they will do with theirs yet, but it may just stay in concept form to them-which is totally fine. What is important is we all know we’re together in this. We have each other. And we always hold the key to each other’s hearts…keeping us close, grounded and getting us through the tougher days the only way we know how-as a family.