Smarty McSmartypants

Oh dear...I am sooooo in for it.  (shut up...I hear the sniggering down here)

I have my girl back...and she is a smart little cookie.  She is also a snarky, funny, practical little girl.  I'm so proud of her, and so amazed by the ways in which she's rolled with the crappy hand she was dealt in the last year.

Needless to say, I'm going to have to take some serious poker-face lessons from someone, because she's HILARIOUS.

Yesterday, she and I went down with the crud.  Headache for her, head and gut for me. As we're driving to school (hey, I'm out of personal days here...I don't NEED the pay cut) and I'm dealing with sour burps, my child, from the back seat says. "Mom....if you need to throw up, roll down the window."

Okay then.  What wise advice.  I predict a future of pragmatism for the Demie Diva.

Last night, after the nightly energy burst which invariably presages bedtime, I asked her where her listening ears were.

"What Mom?  I can't hear you."

I'm screwed.

Thank God I can again see this child.  I've missed her more than I realized.

So far so good on the monotherapy.  I've seen what I can't be sure are or aren't some myoclonic jerks - mostly because she's got the growing pain wiggles right now.  Kinda hard to tell if it's a jerk when she tells me that her bones hurt.  Poor kid.  Those were horrible.

Isn't it wonderful?  I'm grumbling because my kid with TWO special needs is being a smartypants.  Perspective, baby.  It's all about perspective.

Sanity is NEVER overrated

The Demie Diva and I got kicked out of counseling yesterday - for being functional.  I LOVE this.

I do and I don't.

On the plus side:

1. I no longer am dropping $135.00 per visit for a wonderful psychologist, whom I adore and is worth EVERY penny, to observe Demie Diva and give me her take. 
2. I no longer am worried about my parenting skills.  Are they great?  No.  Am I perfect?  No.  Have they been validated as what MY child needs?  Yes.  
3. Demie Diva is definitely, unequivocally ADHD. 
4. I'm right, given everything she and I have been through in the last year, to hold her back from Kindergarten.

On the minus side:

1. Nowhere in this process has the XH been involved.  The WP knows him, she's seen "the brothers", and understands the personality type.
2. Demie Diva has no real attachment to her father. this is not a surprise, but still breaks my heart.
3. Telling the other parent that this is the case won't be effective, although the WP is willing to bang her head against that particular hunk of cinderblock if I want her to.

Much of this makes it very clear to me what my next step needs to be.  It's time to move on.  I'm not sure how I'm going to do it, without gainful employment in the Frozen North.  I like living well, and car insurance/tags, etc. up there is day-um expensive.  Demie Diva is covered by the Other Parent's insurance.  

How do I do this, friends?  

Keppra: the devil drug

Let me begin by saying that this is MY opinion of this drug in MY child.  It is incredibly effective in MANY epileptics, and doesn't impact them negatively.

My child, however, is not in that majority, and for her, this drug was the spawn of Satan.

Those of you who've followed this journey elsewhere may remember that last May, my sweet and sassy girl became an angry screaming hitter.  Despite the reduction in dose to the point where she wasn't whoopin-up on me, she just never was quite the Demie Diva I knew and loved.

When you are the parent of a special needs child, you tend to blame the condition rather than the treatment at first.  I became convinced, in no small part because Diva Grandma is a nurse, that despite what everyone was telling me this drug was taking away my child.  She was just "flat".  No sass, no sparkle, and definitely no sweet.

We traveled a road through school difficulty, which was long-term great since it got the Demie Diva diagnosed with ADHD sooner than would otherwise have happened.  I realized what a recluse I'd become because I couldn't trust her moods.  I definitely couldn't trust her to stay put and control her impulses.

When we got the okay to titrate down on the devil drug, I was ecstatic.  I was pretty sure that I'd find my girl somewhere in the middle of the process.  I didn't count on a moody, angsty first drop.  (Man, that was proof positive that she was affected by the drug)  I certainly didn't count on the spontaneous shows of affection that I hadn't even realized I'd missed.

Imagine going without spontaneous "I love you" from your child for MONTHS.  That was what Keppra did to her.

As we've gotten her down - and with one more titration to go - I can honestly say that she's back.  She has epilepsy.  She has ADHD.  She has the spirited personality that has me reading books about spirited children - and laughing in recognition.

What does this mean for her, long-term?  Well, it means we will do another year of pre-K rather than start kindergarten in August.  She likely will be academically ready - particularly given the asinine standards of 'readiness' that our current state of residence establishes.  However, we don't know where the holes are - socially or otherwise.  That drug, and the epilepsy it treats, cost my child a very important year.  No one says we can't start her in first grade when the time comes; but we can't risk having her hate school given her rather autonomous personality.

Does this cautionary tale have a moral?  I suppose it does.  The moral is...trust your instincts.  No one knows your child better than you do, and every doctor in the world can only do so much.  You and you alone are your child's best advocate.

I hate dentists....

No.  Seriously.  I view them as a necessary evil, and I'd rather have THREE mammograms and FIVE Pap smears a MONTH than go to the dentist.

And that was before I became the mother of a child with crappy enamel and really really groovy back teeth.

She had her first filling after her first dental visit.  It was so horrible for her that we skipped the next one and went in a year later.  Some battles ain't worth fighting, and she was little enough that trauma would last, but baby teeth wouldn't.

In the middle of epilepsy hell, I took her back last summer.  Some teeth we were going to watch, but he didn't want to fill them .. yet.  What about sealing?  Not usual for baby teeth and/or in a kid this small.

Flash forward to January.  The Demie Diva has two cavities on ONE molar.  I looked the dentist in the eye and said "I told you we should have sealed them.  This is going to set her back, given the trauma she's had with machines and epilepsy dx."  He told me it'd be bad, and might require a crown.  I told him there was no way he was working on my child without my presence, that I wouldn't contaminate his field, and that I'd do a better job holding her down than his staff.  He hemmed, as one does when one is Southern, Male, and more than a little paternalistic...and I looked him in the eye and told him that if I could hold her while they blew a vein sedating her for an MRI, and then hold her more tightly while the blood pumped, and we found another vein, I could jolly well handle this.

What the hell was I thinking?


I know.  I was advocating for my child's needs and interests.  


Holy Hannah.  This morning, I laid on my child while they drilled, exposed nerves that "looked healthy, but..." and put a crown on.  Then, having been warned that we might not be able to get her teeth sealed, I looked at him in the middle of the hysterics and said "Seal her now, cause I can guarantee you we won't get her back onto this table to do it later."  So he did. THEN he asked what procedures she'd had...so I ran them: one CT w/o sedation; three EEG-s (two in the last 10 months); and an MRI...only the last under sedation.  Poor kid.  This has been a crappy year.

No pain meds.   Motrin/Tylenol alternating q 3.  Soft foods.  Poor kid.  She went to work with me.  Her father was covering my first class cause we knew I'd be a little late.  The Demie Diva wanted just her mommy.

She wanted to go home.  (Do you blame her)  So.....

One panicked email to my colleagues later, I had my wonderful friend "K's Mom" in my room.  Morgan said she'd go with her, so I got to teach.  My afternoon classes were covered.  I went to get M, and she wanted a cupcake.  I got a salad.  And my other friends and colleagues stepped up when it became clear that her adrenaline/novocaine cocktail was wearing off and it was time. to. leave.  NOW and got a "to go box" for my salad, cleared my dishes, and took care of us.

I've gotten my reminder - as I often do - that I can ask for help and get it.  I've gotten further reminders that THIS is why we need to relocate to the state/place where she and I are loved and supported.  I'm not sure how on earth I'm going to manage it, and I am again planning on wallpapering my office with rejection letters...but the Diva Grandparents have agreed we can live with them to start ...

so...hope that the sealant worked. Hope that this last trauma is more quickly be recovered from than her last medical traumas... and oh dear friends, hope that this year at last, we can go home.

I don't want to.

My current favorite declarative sentence.

Usually used in conjunction with going to her dad's house.  Having been married to him, I understand her visceral response to the lack of emotional response to her very needy little self.  Having read all the divorce parenting books I understand that my response is simply "But Daddy loves you and you need to spend time with him".

Having watched her cling to me when I dropped her at his house on Sunday, I had a very hard time with that particular declarative this morning.  Demie Diva was clinging to me.  I was crouched on her level.  the XH was standing three feet away declaring his usual stuff instead of getting down where she could make eye contact with him.  When he dropped her at mine that evening, he said she just had NO energy and didn't really want to do anything.  Flash forward 15 minutes.  We're playing a game, she's in my way in the kitchen, we're thinking about how we're going to see Diva Grandma in a few days...

Needless to say, when she asked who was going to pick her up at school today (Mondays are Daddy days) and I told her, I had a very hard time delivering the party line.  So...we had a conversation about how if she didn't go to Dad's then today wouldn't be over.  If today didn't happen, then we couldn't have Morgan and Mommy days after school till Grandma came.  Sigh.

And I roll with this alone, since the extended Divas live in the state of my birth.

I don't want to.

Weekends are supposed to be relaxing...

Oh, I'm trying to be positive about this.  I really am.  But honestly, today was one of those days that HURT.

Today was the 40 something version of Four Weddings and a Funeral.  Only it was Two Birthday Parties and a Funeral.  The Funeral was, literally, a Funeral Mass.  It sucked because cancer took another mother of a young child too, too young.  Then, the Birthday Parties.

We had two today.  Concurrently.  For three kids.  The first was for the Demie Diva's friend from pre-K.  It was at one of those Jumpy places.  And, the year that the Demie Diva lost to epilepsy was so emotionally apparent.  But what was more apparent was that she couldn't cope with the stimuli.  It was too too much.  Too noisy.  Too many screaming kids (I have never wanted to grab a shrilly screaming 4 or 5 year old and scream "Shut the eff up" quite as much as I did a be-tutu-ed princess today).  Too many things with entrances that were holes that looked like CT-s and MRI-s.  She needed to leave about 30 minutes in.  The noise from the sound system hurt her ears.  The look on her face as her eyes started to get a little flat hurt my heart.

Epilepsy sucks.

So we went earlier than we'd planned to Party 2.  This one was a neighborhood party.  And we LOVE our 7 year old twin neighbors (and their awesome parents) so this was, to be wholly honest, the one party I look forward to every year.   Problem is that when you have twins, and you do ONE party, you get TWICE the number of kids.  And this was a year where the 7 to 4-and-a-half gap was huge.  Again, the year she lost - the fact that, realistically, she's emotionally not that much past where she was a year ago - was totally obvious.  And again...too many people. ... too much stimulus...too many places to choose.   It was an ADHD nightmare.

You know the cartoon "Which way did he go, George?" ... that was the Demie Diva. She's never seen Just Dance cause...gasp...I don't believe in game systems for the preschool set.  So, when the bigger girls were Wii dancing, she was doing her thing - till she realized she wasn't doing what the others were.  But the big boys were playing dodgeball - and the Demie Diva doesn't do things without purpose (NURTURE, baby) so she was all about that for two or three minutes and then ditching it.  

ADHD undoubtedly contributed, but I'm not about to increase her Focalin (which she needs) while we're decreasing the Keppra.  The latter drug has been what can only be described as the devil since the Demie Diva went on it.  She's been meaner than a snake, moody as hell, and now, as we titrate off of it, she's sad.  WEEPING sad.  We're dropping that a level tomorrow, which means that Monday through Thursday will, if the last titration is anything to go by, be hell.

So, to recap.  I went to a funeral.  Cried a bucket.  Took my child to two birthday parties - neither of which was great because of one disability or the other.  And am now sitting home on a Saturday night, trying to convince my own ADHD brain to be still when what I need to do is grade papers.

Midquarter grades are due this week.  The Demie Diva is dropping a level in the med that's messed with her personality for nearly a year.  My mother is coming on Thursday and my house is trashed.

It's gonna be a long week.

My love/hate relationship with single parenthood

Sometimes, being a single parent really sucks.

I know this isn't news to some of you, but for  me, this is a constant slap upside my head.  How much of it is because the Demie Diva is figuring out what a LONG time it is between grandparent visits, I don't know.  How much is because her relationship with her father is what we might kindly call ambivalent, I don't know.  How much is because we're titrating down one of her epilepsy drugs right now (the one I said was Satan incarnate) I don't know.

That's the part of single parenthood that, to be honest, is the hardest.  Oh, not the not knowing.  That's part of any parenting endeavor.  No, the not knowing on my own.  Being the only set of eyes on the child when she's behaving oddly idiosyncratically is darn difficult.  Being the only set of arms that goes around her when she's sad (which she seems to be a lot these days) is hard.  Being the only set of feet that hit the floor when she hollers for "MOMMY" at oh-dark-hundred....yeah, you got it.  It's hard.

She's taken me on a journey this week that I swear I never thought we'd go.  The Demie Diva and her Mommy are going to the child psychologist.  She needs it.  I need for her to have coping skills that are more than sobs and being sad.  I need for her to feel secure enough away from me that going to school isn't a major exercise in drama and tears every day.  I need for someone else to bloody well figure out what I'm supposed to do with a child who is WAY up in some aspects of her life, and WAY behind in others.  I don't think she's on the spectrum.  Although, what the heck, that'd be hilariously ironic given my life's history.  Actually, if I'm going to be honest, I hope like fury that she's not on the spectrum, cause my baby has enough crap to deal with already.

That said, I don't have to share the magic and wonder.  She's so excited when I come to get her.  Her little face is so sweet in repose, and I get to see it 99% of the time.  Those arms go around my neck, and hold on and she is my baby again, nestled in my neck.  When she learns something new, like dialing Diva Grandparents' phone number, it's exciting beyond all recognition.  I get to make cookies with her, and let her use the egg beater on the waffle batter, and watch her insist that SHE will pour the cereal by all herself.

How on earth did I get so lucky?