Wednesday, February 22, 2012

On Raining and Pouring

You know...I've never liked the phrase, "When it rains, it pours."

As a kid, I didn't really understand the phrase.  I mean, I knew it meant that someone was facing an uncommon amount of adversity.  I just didn't see the difference between a light drizzle of adversity and a deluge.  Either way, you're going to get wet, and there's a chance you'll be struck by lightning if you're not careful.  Hard times are hard times, whether it's a little or a lot, and one woman's light misting might be another woman's downpour.

Today, my problem with the phrase is its ability to sap me of energy and hope.  Loving friends who have used the analogy to describe my life right now have done it to convey that they're aware of how hard everything must be, that they care.  I love them for that.  I really do.  I just don't want to agree with them.

It's raining in my life right now.  It is.  I know this.  But if I admit that it's raining AND pouring, well, I might miss the frequent bursts of sunshine that beam down on me between cloudbursts.  And I might not recognize the blessings that come with the rain.

This is kind of a heavy post for a humor blog.  It's been a heavy couple of months.

In December, just a couple of days after my last post, I got a call from Miriam's school.  She was having a seizure.  She had no history of them, so Richard and I hurried to the school so we could take her to the emergency room for tests.  As she slowly returned to normal, we were told that her neurological function tests looked good, her EKG showed her heart wasn't the problem, and she was probably fine but should see a neurologist in a the "fast track" clinic at Primary Children's Hospital.

We didn't know fast track meant waiting list.  The doctors prescribed her a medication, and we settled in to wait.  She had seizures about once every one to two weeks, despite the treatment, and she also began having mood problems and anger issues due to the medication's side effects.  Life became hard for all of us, most especially for Miriam.

On a Sunday in January, I had gotten the kids to bed and was in the middle of a Wii Fit yoga workout when I heard the unmistakeable sounds of a seizure in progress.  I hurried down the hall toward Miriam's bedroom and stopped short when I realized the sound was coming from Aaron's room.

I held him on his side and watched for signs of a blocked airway and tried to rouse him when it was over, all the while wondering if I was going crazy.  This was Aaron, right?  Not Miriam?  Was I in the Twilight Zone?  Was this a dream?  Richard came home from work as I struggled to get a response from Aaron and found me sobbing. I looked up at his worried expression and could find nothing to say other than a frantic, "WHAT THE HELL IS GOING ON?!"

Off to the ER we went, but instead of sending us home with a med and a new place on a waiting list, Aaron was taken via ambulance to Primary Children's, where we spent the next three days meeting with specialists.

Today, I can calmly and rationally tell you that Aaron's history of Velo Cardio Facial Syndrome, a congenital heart defect, and a blood test that revealed low calcium levels told the doctors that there was likely an immediate, non-neurological problem associated with the seizure which could be treated, as opposed to Miriam's seizures, which didn't immediately have an answer (as most don't).

At the was hard.  It was especially hard the day Aaron was being wheeled down to his EEG, a test I desperately wanted Miriam to have, and my phone lit up with the number of her school calling.  While one child was hospitalized and heading for a test to find a cause for an isolated seizure, another had just had another seizure at school and was complaining of numbness from the neck down.

I don't know how I didn't collapse then and there...except that I knew I had Richard, and I knew his employers would be understanding.  He went and got Miriam, who recovered from her momentary numbness, and I breathed again.

We left the hospital the next day with the knowledge that Aaron's heart was great, but his parathyroid was not.  Prescriptions for calcium supplements will likely keep him seizure free for good.  So, there's that.  If I can get him to understand that he needs to continue to take the supplements, even though he feels better, we'll be golden.

A week after that hospital stay, Richard joked on Facebook that if we could keep all of our kids out of the hospital that weekend, he'd be happy.  On Sunday, it was Evelyn's turn to spend the night in the ER with an asthma attack unresponsive to her usual treatments.  It took everything I had not to grab my two remaining healthy children by their chins and say, "You two are not allowed to get sick. Do you HEAR ME?!"

Shortly after that, it was finally time for Miriam to meet with the neurologist, who ordered tests, started her on a new med, and told us not to worry.  I have a family history of seizure disorders, quite an extensive one, actually, and he assumed that her seizures were related to that.  Unfortunately, the MRI of her brain disagreed.

This is where I tell you that holding a degree in psychology has been both a blessing and a curse.  I saw my share of normal and abnormal MRI images in various classes at the U.  I know what a normal brain is supposed to look like.  Miriam's was not normal.  Not at all.  My double take as I passed that computer screen was...well, it would have been comical if it hadn't been so raw and heartbreaking.

A cavernous malformation of the blood vessels, probably there and growing since her birth, is the verdict of the medicos. Not cancer, thank goodness.  Not bleeding, thank goodness, though a scare this past weekend made us worry until an and ER visit and a CT scan showed all was well.  A cavernous malformation is not an emergency, but it's also not something you hope doctors will find in your child's brain.

Meeting with a neurosurgeon was surreal...and not in the good way, where you feel like you're floating on a soft cloud of marshmallows while a cat takes your order at a vegan restaurant and a butterfly massages your temples.  No, this was the kind of surreal where nothing makes sense at all, and everything is garish reds and oranges and screaming violins.

Melodramatic? Me?  Forgive me.  Suffice it to say that the prospect of someone cutting open your child's skull and removing something from her brain is a lot to handle.  Hearing risks of permanent damage?  Also a lot.  The risk over her lifespan of bleeding and stroke if we don't do the surgery?  Equally a lot.  Learning this while handling the medical needs of two other children?  I'm sure you can figure this one out.

To be clear, the docs haven't made the decision for surgery.  They've also not ruled it out.  We have until May to try and get her seizures under control, and we'll go from there.  As a family, we're in hope for the best, prepare for the worst mode.

And we're moving.

Did I mention we're moving?  In 11 days.  Unexpectedly, but happily...and sadly.  How's that for mixed emotions? 6 months ago, we made the decision to move in with a family member in order to share a large house, get a couple more bedrooms for the kids, provide him some needed income in the form of rent, and help him with much needed repairs and remodeling.  6 months into the great experiment, and things have not gone as expected (especially because certain things have not gone as promised), and it's time to call it a wash and move on.

There's sadness and resentment and gratitude and excitement and hope all mixed in together in all of this.  Do I need the hassle and stress of moving on top of everything else?  No, no I don't.  Therein lies the sadness and resentment.  Do I need to move, and will we all be happier once it's done?  Yes.  Absolutely.  So much happier, and I think, better able to handle everything else.  That's where I find my gratitude and excitement and hope.

So, it's been raining and pouring over here, but there's been so much sunlight too.  Aaron's seizure will likely be an isolated event.  Evelyn's asthma was treated, and she's doing better.  Miriam may or may not need brain surgery, but she doesn't have cancer.  She doesn't have a terminal illness.  She's going to be okay, no matter what treatment option we choose.

There have been prayers on our behalf, meals brought in to our home, friends and family offering support and help.  There are the two insurance plans covering the costs of everything, and there's a plan in place to pay the rest.

We found the perfect house to rent at just the right time, and there will be so much happiness there.  I can feel it.  This may be related to the cherry tree in the backyard.  Or the jacuzzi tub in the hall bathroom.  Or the little greenhouse window in the kitchen where I'll grow my own basil for pesto.  Or the THREE bathrooms.  THREE! Or the fact that the heating actually works and the garage is all mine and the kids can be noisy in the morning without upsetting anyone other than me.

When it rains, it pours, but there's always an umbrella of help and protection from those we love.  And rain brings much needed water to plants (and people) that need to grow.  It cleanses and purifies.  It sometimes carries us along in a current we worry is too strong, but when we find ourselves on a new shore, we sometimes realize we've been carried to just where we need to be.


Millionaira said...

still bummed you're moving so far away BUT so glad that it's what your family needs!

more importantly glad that Aaron's seizures are manageable and as always prayers for Miriam

you know you can call me if you need me right? i'm pretty sure you know that, but just want to remind you :D

Malisa said...

Lovely writing. Prayers for you and your family.

Nomads By Nature said...

How terrifying and frustrating - quite a lot to be dealing with, but it sounds like you are handling it all with grace. Sending hugs and prayers for you and your family as you move forward (literally and figuratively) together.

Becky said...

Oh crazy! I'm sorry you've had to deal with all of this but as usual, you seem to find the best in the hard things. I hope things improve soon.

Jenn said...

I wish so much that I was nearer and could do more. Hooray for the new house, though.