Why I can’t go to the bathroom, reason #817

29 Jul

In a flight of fancy today, I thought I’d go brush my teeth.  At 12:20 p.m.  Just in case I ran into other human beings, you know.  I like to keep the standards high.

Sean – teen boy #2 – was cooking bacon.  He finished cooking said bacon and went to eat it, leaving the pan on the stove (don’t worry, I’ll make sure he gets to it eventually.)  I’ve wandered into the bathroom, doing such things as brushing teeth and hair, then return to the kitchen.

To find Maura standing there, eggs and butter on the counter, and her shaking her hands.

Shaking egg whites off her hand.

*sigh*

The good news is, she didn’t try to turn on the gas stove, which means she neither tried to set herself on fire, or gas us all.  And she used the bacon pan that was on the stove.  And really, she did a pretty decent job of cracking the egg.

She was quite proud of herself.  “Look! Egg!”

Yes dear.  Egg.  Heart attack.  The frightening realization that I can probably never sleep again, not after this week (she decided Sunday that she could just make popcorn…in the stovetop popper…on the stove…again, luckily, she didn’t turn on the gas stovetop.)

We’re now cooking a frozen pizza, after scrubbing her hands of egg whites and putting the eggs and butter away.  I’m also considering taking all the stove knobs off.  The problem is, even if I put them up high, she’ll figure out how to get them and try to put them back on to use.

I’m realizing that in a way, nothing is safe.  There’s a degree of constant vigilance we must keep with her, to keep her safe from her own self-assurance that she can do the things her siblings can.  I could lock up the whole kitchen…but I can’t.  It’s not that realistic.  Instead, it’s another lecture of “You have to ask Mommy or Daddy if you want to cook.”

Hopefully she’ll get this sooner than later, and before she sets something on fire.

You're cute, but you still can't cook!

You’re cute, but you still can’t cook!

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A much needed little “big” moment

27 Jul

It’s been a long week in my world.  My husband’s family lost two of their own, fathers and grandfathers, who were greatly loved and will be greatly missed, but leave great legacies in the children they raised.  Then yesterday, I woke up to the news that the seven year old daughter of a friend, an amazing little girl with a smile to rival Maura’s, passed away suddenly.

Alyssa was the darling of our online community of sewers and crafters and yarnaholics. We were there when she was born, when they realized that something more was going on with her, and were there throughout the next seven years, as we watched Alyssa defy odds and grow and thrive and overcome challenges with a smile on her face and two proud parents behind her, smiling as well. She was an amazing little girl who touched so many of us, and now we are stunned by her sudden loss.  These times make a person feel helpless, so we’re doing what we can to help out her family by fundraising for funeral expenses.  I don’t have a lot to share, but I can share the links  –  to make a donation simply either send money via PayPal to FundForAlyssa at gmail.com (replace “at” with @, remove spaces of course) or you can go through the Go Fund Me that has been set up: http://www.gofundme.com/c5wyn0  – every little helps, and all is appreciated.

Needless to say, I spent part of yesterday snuggling Maura.  Maura loves snuggle time, and being spoiled, and so she was just fine with all the extra attention.  We watched My Little Pony and she stole my Kit Kat bar, and still, she got to be princess for the day.

This morning, I woke up and realized I had no milk for my coffee. Maura was watching “The Magic School Bus” on my computer, which I had plans for.  Of course, my computer plans also contained “Drinking coffee while at computer”, so I lured her away from said computer with a trip to Starbucks.

Maura was delighted with the idea of Starbucks, and I am still delighted by the fact that the closest one is a drive-thru.  I placed our order and Maura giggled at something.  I asked her what she saw, and she said “Coffee!”  I laughed.  Yes, there was coffee.  I was impressed with the answer, and once again wondered if the seizure medication weaning we’re going through is allowing her brain to move a bit faster.

When we returned home, I used the moment to tell her I needed my computer, and she could use her iPad to watch her shows.  She got dramatic, sobbing as she threw her arms around me.  I’m used to her high dramas, and just laughed, gave her a kiss on the head, and said “I still love you.”

“I love you too.” she responded.

It was a little moment.  A little moment in time we’ve done a million times.  She gets dramatic and cries and hugs me, and I tell her I love her.

But this time, I got words back.

This is only the second time in 11 years I’ve gotten an “I love you” from Maura.  I know she loves me, words aren’t necessary, but today?  Today they were much appreciated.

Oh, she still didn’t get my computer.  I’m not that much of a softie! But after extra-long squeeze, she happily settled down with her “coffee”, muffin and iPad, and was all better. And after a week of anxiety and sadness, I’m feeling better too.  Four little words, one little moment, now forever in my memories.

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Confession time

25 Jul

I’m just going to come out and say it -

I hate the thought of losing the epilepsy diagnosis.

Yes, I know, I should be grateful that Maura’s brain isn’t showing signs of seizure activity.  I am happy that so far, the weaning process is going great.  I am happy that every day, I see my daughter being happy and bright and healthy, not losing any skills or balance.  In fact, I’m beginning to wonder if she is becoming more vocal actually.

But I hate the thought of losing the epilepsy label.

Why?

Because, in a way, it’s all we have.  It’s all we can say she has that people can grasp.  People hear “epilepsy” and know what that is, know how serious it can be.  It puts us at a different level.  It’s something seriously medical enough to get us that extra help. It’s a bit of street cred in the special needs world.  It’s something I can explain.  It’s the only thing in Maura’s list of symptoms that seems solid.

Having epilepsy makes Maura more worthy of the “special needs” label in the eyes.  No, really, it does. I remember when the one mother who gave me a hard time about Maura not being autistic and therefore our lives must be easier heard that Maura was having seizures – she treated me differently after that, with more sympathy.  It was a bit ridiculous that it took seizures to make Maura more special needs, but it did.

Granted, all that was several years ago.  Now when you meet her, you understand, she has something going on.

But something going on doesn’t get you any help.

I was hoping to get Maura on some sort of state disability benefit.  I’ve looked it all up, and one qualification is cognitive disabilities, but another is epilepsy.  I was banking on the epilepsy diagnosis to tip the scale in our benefit, to help her really qualify, and maybe get some respite care.  Now it feels like I’ve waited too long.

Don’t get me wrong – if Maura never has another seizure, that would be beyond awesome.  I would love to not worry over if each childhood illness will bring seizures with it, or exhaustion, to get over the constant constipation the medication helps cause.  I would love not to spend $513 a month as a co-pay for said medication, or cry if I spill a dose knowing how much it costs.  Yet the label it brought that made people take us more seriously – schools, doctors, other special needs parents. I hated what it did to my daughter every time one struck, I hate the anxiety that it puts me through, and I hate knowing that if we get her through this trial and she’s given the all-clear, I’m still going to have that worry every time she gets twitchy or blinky.

I’m realizing, I have Stockholm Syndrome with epilepsy.

It’s held us hostage, but it has been the devil we’ve known, and known what to do about.  It’s the thing that’s kept us under specialists routine care.  For all its negatives, epilepsy has also had a positive effect on our lives.  I know, that sounds weird, but it’s the truth.

I’ve forgotten what life is like without epilepsy.  I’m not sure what life will bring without it.

All that said – if she has a seizure as we wean her off these meds, I’ll probably cry in disappointment.  Because while I’ve grown comfortable with being epilepsy’s hostage, I want that freedom for my child.  I want that healthiness for her.  I want to see what her brain will manage without the seizure meds slowing it down a bit.

Whatever happens, we will manage.  We always do.  But sometimes, I just need to get thoughts out of my head, so I can keep moving forward.  As jumbled and mixed up and odd as they are, these are the thoughts in my head.  I don’t expect most people to understand, but to the one or two that do, thanks.  And I get you too!

 

Oh, the things I go through for this little face!

Oh, the things I go through for this little face!

 

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