Thursday, December 29, 2011

Night of Princess Magic

I'm going to regret this tomorrow! HA! -Quite the first-liner, right?! It's approaching 3AM, and aside from some sporadic Myoclonics, Destiny has been "seizure-free" tonight. It's always like this...she will have a bad, even atrocious few nights...nights when my lack of sleep almost feels excruciating, and then when the cycle ends, and she begins to have "good nights", mom can't sleep...Total creature of habit!...Also, I tend to be overcome with anticipation and gratitude for the upward turn...I think it must be hard to understand unless you've been there/here, as a parent or loved one of someone who fights for their life.

We have been on vacation, living in our Salt Lake City "apartment" since 12/18? Though, my eternal friend Lori managed to swipe us a free night in a suite one night earlier. So many things to write about, but I feel an urgent need to record some highlights from last night. Not even real highlights, but my personal reflections.

Now, wait! - first things first! - the drugs from Europe ARE still working. Stripentol and Clobazam = a treatment method, which far from a cure! Destiny has bad days and "atrocious" nights, but in perspective, compared to September and October, they are very decent ;-) but weird.

A bad night now looks like this: she'll sleep for 5-10minutes, have a 40-120second Tonic Clonic or Partial Complex seizure, followed my some myos, wake slightly, fall back asleep for 5-10minutes, have a 40-120second Tonic Clonic or Partial Complex seizure, followed my some myos. Rescue meds no longer touch these clusters. I may wake her up, try a mid-night Popsicle, but as soon as we get in bed to try again, we are right back where we began. Just gotta ride the night out. In my delirium, I fear Desty may never ever sleep again without seizing!

Okay, this post hasn't been about any Princess Magic at all yet!!!

So, to make an incredibly amazing and magical story short, these heroic, angelic, coolacious people threw a Grand Princess Ball for Destiny, in part to raise funds for her medication, but mostly to make her wish of being and meeting a princess come true!

Many thank you notes to come for this! It's a good thing we homeschool ;-)

The evening was filled with magic for Destiny, and magic for me - separately! The child was princess crazy, full of life and unrestrained energy as she would meet a princess, then quickly say with urgency, "I need to go find more princesses!!" To my astonishment, what began as 5-6 traditional Disney princesses, grew into gobs of mainly teen/young adult women in gorgeous gowns, who'd be introduced as "Princess _______". I swear they must've called their friends in to keep Destiny entertained!

Destiny LOVED the Queen dearly! My favorite quote: "Mama! The Queen has FIVE daughters! That's a LOT of surgeries!"

Pure Princess Destiny magic!

For me, the magic was the non-character guests...there are just a few that I will reflect on.

Ariell (that's really her name!) who I have known for 21 or 22 years. We met as twelve-year-olds and now our girls (and boys!) are growing up as cousins! This picture of Kysaija at 4 and Destiny at 6 so reminds me of the relationship that Ariell and I had at age 12! Kysaija is Ariell's mini-me - totally....

Ariell and K are literally one of about four "sides of our family". How lucky my kids are!! LOLOL! And how confused they will be! What grade do you do your family tree? Remind me to homeschool those years!!!

Then there's Eric and Addy who came, from the Cutler's "side of our family". I've known Eric for ~9 years, I believe. We have been at family dinners/parties etc., but haven't really spoken until tonight. I feel a special and unique bond with him and his wife, Barb. They have a little boy with uncontrolled seizures, and I frequently seek updates on to my kids, our kids are cousins. It is heartbreaking to hear of their struggles, but a shared experience, when it naturally exists, is priceless. As we parted, there was a moment of, "Yes, yes, I do know what it's like..."

K, I don't know if I can convey anything of anything to make sense with this next reflection. To try to understand it, pause and read this dated post of mine: Visiting Diana. Diana passed away almost a year later, when I was laid up from my hip replacements. I guess you never get over losing such a special friend.

This reality that I am faced with concerning my Destiny's prognosis....there are two people I would give anything to look in their eyes and say "Help! Tell me what to do, think, feel. Tell me what my goal should be in mothering this babe." Diana and Laura are both gone. I swear they both would be able to console me, with their magic!

Anyways, Diana's kids, Spencer and Samara, and their new mama (who I truly adore and I'm soooo thankful for!!!) attended the Ball! I love this picture of Kysaija and Samara dancing with Benny!

Of course, the Galloway's side of our family was there - they helped put it on! I greatly missed Granny and Paz though!

I guess, for me it was a big reunion of people we love, plus many little princesses and their parents that we don't know, coming together to
help my little girl (who shoved her cupcake in my face at the start of the Ball, squealing joyfully "Got'Cha!" ya, you better be glad I think you've seen it done at weddings, my Pretty! ;-).

- Posted using BlogPress from my iPad

Location:Salt Lake City, Utah