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.