The Art of Humility

So, I was talking about humility the other day.  And it is an art and a promise and truly difficult and truly humbling.  I've had many experiences that have brought me to a level of humility that I now have, and I suspect that I will still have to hand over more of my pride and even more of my pride before I am done with my walk here on the bluish-greenish-brownish-smoggy ball. 

You see, being Lucy's mom has been extremely humbling.  In fact, I couldn't actually put words to it until now, not until someone else was kind enough to prime the pump for me.  This blog post by Dr. Karin really made me feel like she knew exactly how I had felt, and still often feel, about what it's like to be Lucy's mom.  Especially this passage:

I never knew fear until I put my child’s life in someone else’s hands, out of my sight, out of my control, and beyond the swinging doors of a room filled with masked healers with gloved hands.
I never knew faith until all I could hold onto were the reassurances of the nurse who took him away in her arms, the spoken confidence of the surgeon who promised he knew what he was doing, the words in the Bible that I had memorized in my youth … and the prayers of so many people, some family, some I did not even know, who loved my baby boy and wanted him healed.
I never knew the love of God until I realized that He was okay with the fact that I was angry, exhausted, confused, and petrified and unable to pray for a time when my newborn was first taken from me, but He waited right there by Hoyte’s bedside with me anyway, loving me all the way and waiting for me to come back.
I never knew gratitude until I saw the surgeon walk through the swinging door of the hospital waiting room, removing his mask to reveal a reassuring smile.
I never knew joy until I watched my child recover body and soul from infections, procedures and surgeries and then one day finally saw his smile again … even brighter than before.
I never knew closeness until I realized that God indeed had been tucked up beside each of us every single hour. And when I regained my strength and was able to reach back up to Him with a renewed spirit, His voice sounded closer than before, and the warmth of his compassion flooded my heart with indescribable blessing.
I never knew anything more certain than what I know today for sure: Our little Hoyte is a miracle, and he is HERE FOR A REASON.
And so is your child.

You see, when Lucy was first hospitalized, I had to actually give up being her mother.  I couldn't hold her or comfort her or even feed her anymore.  I pumped loads of milk that we poured down the sink.  I literally could do nothing for my infant daughter.  I couldn't save her.  I couldn't help her.  I had to hand her off to strangers, and hope for the best.  And I told people I prayed -- I tell people I prayed, and I think on some level I did.  But the inside of me looked like this:

I had to lean on the assurances and the help of strangers.  I had arrived at the hospital with the clothing on my back, with my purse, and with nothing else.  The nurses brought me food, found me soap and contact solution and a cell phone charger.

For the first time, I learned what it meant to put aside my pride and allow people to really help me.  But my lessons weren't over. 

When I returned to work, and the syndrome grew worse, I learned what it meant to have a good boss who was really there for me to help me.

I learned how to lean on friends, and talk to them, and tell them when I was sad or scared.  I learned what I really needed and what I wanted.  And through it all, the people have come back with love and support beyond what I have imagined.  My old pride has taken a beating -- because as I realized that first time, I am not enough. 

I have to accept more for Lucy.  She needs more.  She has assistance from the state.  She has a team of therapists and nurses and doctors.  I've slept in a Ronald McDonald House, and when I could, I gave back.  I've eaten the food given to me by complete strangers, and brought food back.  When se almost died last Christmas, the outpouring of support and love buoyed us up.  And so we work very hard to be anchors and pillars for those we see who are sad. 

Charity is not the strong helping the weak -- it is a symbol of infinity, in which we see how God's love shows for all of us.  The more humble I am, the more I can love the greater mass of humanity, because it allows me to see better how to love and to accept more love so as to give it.  Infinitely, infinitely, infinitely. 

Infinity.

Back so soon?

Ahhh.  Here we are back in the hospital.  It's weird to not enter through the Emergency Department.  To drive here in our own car.  To have to wrestle a toddler down for an EEG who's wide awake and not totally doped on diazepam.

Okay, I've done the last one a few times.  But still, not for a while.

Anyway, we're in for a visit to the Epilepsy Monitoring Unit.  Apparently, this is a level 4 EMU, which is probably pretty good, except that I didn't know there were levels and, well, let's just say that this is far superior to the last few stays we've had at EMUs.  See, once they hook you up to the wires, they hand you a button (or, in this case, hand your mom a button) and tell you to push it if something happens. 

Lucy got ahold of the button and pushed it. 

At the Shitty Hospital, where we've always done our EEGs up until now, that was it.  You push the button, there's a mark on the monitor, and the doctor looks at that point and says "seizure or no seizure."

At THIS hospital, when you push the button, an alarm goes off at the nurse's station, the lights in your room come on, the TV goes off, and an EEG tech and two nurses run into your room.  IMMEDIATELY.

To say that Lucy and I were not expecting this is an understatement.  We were preparing to EVACUATE.

This makes me teary every time.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

Let's have some good news.

1.  Lucy counts to six.  With some help.

2.  We get a nurse.  A real one.  Not that we don't love our Carrie. 

3.  Lucy's posturing is better.  (Bad news -- it is better since they raised her zonegran, so that might mean it's seizures, BUT this is good news day.)

4.  Lucy can feed herself some yogurt.

5.  Last night she ate four grilled nuggets.

6.  She can put legos together and take them apart.

7.  She says "itsy-bitsy spider."  Okay, she says "itteh-betteh pideh."  But she says it when she pulls out the book.

8.  I think her feet are growing.

9.  She says she loves us a lot.

10.  She kisses fish.  Okay, she blows kisses at fish.  It's adorable. 

I want a Dravet buddy.

I don't want you guys to think I don't love you and appreciate you, because I really, really do.  You give me perspective and support and make me laugh and bounce me back and are so awesome beyond anything. 

Really.

But sometimes, I also want somebody who is in the trenches with me.  Who, if I say, "I think they're gonna put her on the DIET," doesn't need an explanation about the G-D EFFING DIET (the vitriol is not directed at you, it is directed at the diet.  The diet is the biggest pain in the ass.  Let me explain a few things about why:  1.  No sugar;  2.  You have to eat a specific amount of calories, no more and NO LESS, so a lot of kids end up with a supplemental feeding tube in case they don't eat all of their meals; and 3. If you cheat, you will have a seizure, so if my kid's crazy-ass grandparents slip her candy, she'll seize. GIANT PAIN IN THE ASS.)

Sometimes it feels a little lonely out here.  I keep trying to make a Dravet buddy, but the network feels a little like a closed club.  Especially since Lucy is, overall, doing pretty well compared to the other kids. 

We saw Dr. P today. He rushed us in after we called to report on Lulu.

I'll back up. 

Lulu has been doing that weird posturing stuff for over a year, and nobody knows what it is. 

For three weeks, she's been having episodes of muscle weakness.  And we can't get her to respond well -- she's dazed and grunty and kind of unresponsive. 

Sometimes, immediately following these episodes, she postures for a while.  And wanders around.  He says they might be complex partial seizures.

Awesomepants.

-----
But, in other awesomepants news, Lulu is interested in the potty.  I'm not holding out any timeline here, because with all her stuff I wasn't actually expecting her to use the toilet with any regularity before the age of four (hypotonia affects all the muscles, including bowel and bladder).  But she is now the proud owner of a froggy potty.  Just in case, you know. 

Why Howdy Neighbor.

Dravet Syndrome is going to make me lose my shit.

So, today has not been a good day.  We lost one of our kids today. 

And no, I have no hold on this child.  I don't know the parents or the kid.  But yes, it hurts me like a part of me is cut off because every day we all fight to not lose one of our own.  So she was one of mine. 

And THEN my neighbors threw a party and one of their guest parked in front of my driveway.  I swear, if Lulu had had a seizure I would have just rammed that damn Kia.  As it was, Travis had to just about restrain me from leaving a note with some thinly veiled sarcasm.