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.

Mean Red Days

A little girl died from Dravet last night.  She wasn't yet four.

I still think it's intolerable that any kid dies from any condition.  But it's slightly more intolerable that any kid dies from my kid's condition. 

I've spent much of the day leaking from my tear ducts. 

Oh, AND

22 pounds.

She officially can no longer use the newborn carrier. 

:sniff:

And also YAY!!!!!!!!!!!

You may be wondering

why Carrie the CNA is here, since there's that medication issue.  And we are waiting on a nurse. 

I might be getting her in trouble with this post.

But fear not.  Carrie isn't her real name. 

I will not post the name of the agency she works for.  But, when we went over emergency procedures, I assured her that in the event of a seizure that required rescue diazapam, both Travis and I would assume that Lucy administered it herself, if she and Carrie were the only ones here. 

I've also assured the agency that same thing. 

And we all gave each other the look over Lucy's sweet little head, which is to say that nobody's going to stand by and watch the toddler seize and do nothing.

Love and Other Stuff

I love watching Lucy fall in love.

I can see how some people hate watching their kids reach for other people, but I'd rather have Lucy love and trust the person she's with.  And she, after all of two visits from Carrie the CNA, really likes Carrie.  She likes to play with Carrie and hug Carrie and make Carrie eat her necklace (Carrie's necklace, not Lucy's necklace.  Lucy does not wear necklaces.)

I guess my fear is that Carrie isn't me -- so she won't challenge her and teach her the way I will, and Lucy might not keep gaining skills.  So I'll have to teach Carrie, in this time, to think like me.  It's amazing how when you have a kid with a catastrophic illness, you do not fear that they will love their caregiver more.  You instead fear that there will be a stagnation in skills, or that they won't be loved enough because they're so different. 

God bless Carrie. 

As for the Other Stuff, well, Travis had a question about Dravet Spectrum Disorders.  So I called our genetic counselor.  Let me catch y'all up. 

DSDs are unlike most, if not all other genetic disorders in that when you break an SCN1A or SCN1B gene, you may have any of the following:  Febrile seizures, GEFS+, ICE-GTC, SIMFE, or SMEI, which is Dravet Syndrome.  I've listed them in order from mild to severe.  We already know that Febrile Seizures, the mildest form, is off the table.  If you want a brief catchup, go here.

GEFS+ is the next one, and the last of these to be classified as "mild."  We've seen the "G" explained as "generalized" or "genetic" -- and so we wanted to know if that meant that there needed to be a family history for this to still be a possibility. 

Look, we pretty much knew, given how her seizures progress, that this one was off the table, too.  And we also are smart enough to know that labeling Lucy at this point isn't helping.  Knowing that she has this mutation helps, but labeling her after that doesn't, except to give us some closure and maybe give us some idea that it has gotten as bad as it can get. Naming the beast doesn't change treatments or meds, or anything.  We still have to be as aggressinve as we can, and we still have to stop trying to limit her abilities as much as we can.  In fact, I think not naming it keeps us from limiting her as best we can. 

But GEFS+ needs a family history of seizures, which we don't have, and so it is off the table.  Which means we are now in the part of the map where there be dragons.

Beware, dragons.  You don't know what you're up against. 

Riding the bipolar train

This.  Is.  Just.  Intolerable.

Okay.  So, we were okayed for the EDCD waiver, and then we got Medicaid funding, and then while I was having a happy little phone chat with a person I discovered that their CNAs are prohibited from giving medication. 

To quote her:  "We can  remind a patient, but we cannot administer."

This isn't great, especially since the patient may be convulsing and might need rescue diazapam. In her butt. 

I got what I wanted SO WHY DON'T I LIKE IT?

Lucy has medicaid.

We are getting a caregiver.

I am going back to work.

BALLS, Y'ALL.

Just balls.

Excuse me.  I will be off in the corner sniffing her shoes and sobbing. 

Motherfucker.

That is all. 

Results. Finally.

Lucy's mutation is a de novo mutation.  Unfortunately, this may mean that her Dravet Spectrum disorder may be worse -- but on the bright side, we do know that other people in the family that plan on spawning have little to worry about.

Seriously?

Seriously.

SERIOUSLY?

You have to be kidding me. 

No results. 

At my house, we call this a "subtle hint."

Think he'll get it?

WEIGHT GAIN, Y'ALL!

Lucy gained 1.4 pounds.

In three weeks.

I KNOW.

We'd like to thank the Academy, Larabars, whole milk, and an increase in her activity level which is in turn leading to an increase in her appetite.  Not only does she eat three meals a day, but she also eats a snack.

Conspiracy theorists and nutjobs

Well, I have news, but it is not news.

I sent an email to the genetics counselor, and she let me know that the tests are done, and the report is being finalized, and they will be sending the results along next week. 

So . . . to me it sounds like she knows something, and isn't telling.  Or am I now the conspiracy theorist?

And, my husband's family came to visit last week.  They were on the road longer than they actually visited.  I will explain:

They are in ill health.  Very.  My sister-in-law doesn't walk (and yes, that is the correct word) and my mother-in-law has a lot of problems walking, and my father-in-law has mental health issues and no teeth and is in failing health.  None of them can drive long distances, and we live 7.5 hours away. 

In their town, there is a small town hospital.  And 45 minutes away, there is a Baptist hospital, which is actually the first hospital we ever took Lucy to when she was seizing.  The doctor there didn't even bother to examine her -- he listened to us and told us to put her in the car and take her 90 minutes by car to the University hospital, because there was nothing he or anything closer could do.  And the ambulance was out on a call and would be too long to get us there.  So we won't go to them, because we can't get Lucy to adequate medical care in adequate time.  (To add it all together, Lucy is 2:15 from a decent hospital at their house.)

We offered to meet them halfway at a town with a decent emergency room. 

And then, they said they wanted to come to us Easter weekend.  Friday night to Sunday midday.  So we said, "okay."  And then they said they got rooms at a local motel which I won't name but rest assured I tried to tell my husband to get them to go elsewhere. 

They would not.  It is a sad, sad, place.  Okay, it's a shithole. 

So they arrive on Friday.  (They make my 22-year-old nephew drive them.  Poor guy.)  We meet them at Cracker Barrel.  We eat.  They want us to come to their room.  We discover that the manager has offered them a hell of a deal:  You four pack yourself into one room with two double beds and it'll be the one room charge plus $10.  They can't pass it up.

We convince them to come to our house, because Lucy will be much more comfortable.  My SIL still says she cannot walk at all and therefore cannot navigate the stairs to the living room so she drives her Jazzy to the playroom.  We all sit in Lucy's playroom.  It's so fun.

The next morning, we have planned to go to the park so Lucy can enjoy the ducks, the Easter Bunny, have her face painted, and look at the kids. 

Travis gets a text Saturday morning that they want to leave asap.  The room is uncomfortable.  Nobody slept. 

So we go to the park (it's packed, natch) and they won't get out.  I tell Travis that we'll try it next year, because I don't want to be rude to our guests but jeeeeez.  So we come back to the house and we all sit in Lucy's playroom again.  It's so fun.  (This time, however, my sister-in-law WALKS into the house.  It's an Easter miracle.) 

Because it's also my mother-in-law's birthday, we do lunch.  We can't go out, obviously, because they won't go anywhere, so we have to bring lunch to them.  As options are now limited, we are left with Pizza Hut and Papa Johns.  We ask if anyone has a preference and they all say they don't care.  I opt for Pizza Hut because Lucy does have a preference. 

The pizza shows up and my nephew begins mentioning how much better Papa Johns is.  Lunch is just uncomfortable for everyone.  Travis and I surprised my mother-in-law with a cake.  My sister-in-law, the best and most awesome peach that ever lived, posted a picture to her FB page as though she bought the cake herself. 

And then they left.  Fortunately, Lucy is not yet old enough to understand, I hope, that they did something hurtful.  But I am going to have to be a little more diligent about protecting her from this in the future.

And there you have your nutjobs.  Also your assholes. 

This is my last nerve.

Still no results.  Also, they are coming for our EDCD screening tomorrow, and so I am nervous, and also today I am having a root canal, so the title of this post is marvelously apropos.

This is a big pile of whine.

I hate having people in my house, and I hate paperwork, and I really hate root canals, I think -- except I've never had one.