Saturday, February 23, 2013

Ain't nobody got time for that!

It has been quite the week here at Casa de Reidy.

Let me sum it up for you:

Tess had a a seizure. Wait, let me rephrase that. Tess had a fourteen minute seizure, then had about eight or nine smaller seizures over a twenty-six minute period which prompted an emergency call to her pediatrician who asked me, "How hard will it be to get her off the island?" I responded with, "Well, kind of hard. The last ferry left about fifteen minutes ago, but it's a nice night." My last comment clearly confused the poor man who sort of laughed and said, "A nice night? Are you planning to swim across?" Love a doc with a good sense of humor. So I explained that in "island terms", referring to the weather as "nice" simply meant that we still had other ways to get Tess off the island if need be. Plane, lobster boat, or God forbid, Lifeflight.

Long story short, the meds finally did their job and she stopped seizing while the doc and I were discussing what to do next.

Phew! Another crisis narrowly averted.

Next in line in the Week O'Crap:

My laptop crashed. Just...boom. Gone. Only a creepy grey screen with a confused little question mark blinkety blink blinking on the desktop. My beloved, less than three years old MacBook Pro was gasping for breath.

Now, everyone who knows me knows, I LOVE my laptop. I am on it way too much (but that is a problem for another day) and I just panicked. All my hubby's business information is on that laptop. All of our last three years of photos. A lot of important documents. My one saving grace is that our local, awesome (hero in this story) computer tech (and high school computer teacher) had convinced me when I got the laptop to always back up to an external hard drive when I do the hubby's books. And I faithfully did. Thank you, God. Then I wrapped up my poor, sick little Macbook in it's little carrying case and handed it over to my computer doctor with a whimper on my lips and a tear in my heart.

He valiantly tried to breathe life back into it and even managed to revive it and hand it over to me...with nary a program or photo lost. As my fingertips danced over the keyboard and the screen came to life, I was so happy. We were back together. Reunited and it felt so good. Then, an hour later, my laptop gasped it last breath and died.  The computer doc is coming over again today for a last ditch effort at saving it.

Say a little prayer for my poor laptop, won't you?

So, just about the time I was thinking to myself, "This week has sort of sucked.", my house almost caught fire.

You read that correctly.

The pellet stove in our house malfunctioned and the sparks from the fire (that should not have been burning because the stove was OFF) were shooting out into the house along with an ungodly amount of smoke. Did I mention it was ten o'clock at night, the power had gone out, it was blowing about forty miles an hour and it was maybe 5 degrees outside with the windchill?

Through the hazy beam of the flashlight I quickly deduced that this was bigger than either of us could handle on our own. The hubby on the other hand? He was in some sort of shock or just major denial because he kept repeating to me, "It's fine. It will put itself out in a minute." I shined one last spotlight on the fire inside the pellet stove and the smoke billowing out of it and ran to get Tess dressed, emergency supplies for her packed, and told the hubby to get her the hell out of the house!

With a final directive to the hubby of, "Please, call the fire department!" we were off to my mother's for the night. (she conveniently lives about a two hundred feet up the road from us). Ellie and her boyfriend had met up with us as we were fleeing and very calmly accepted the situation as "just another day at the Reidy's" and helped me out get Tess to my mom's.

After pounding on the door and scaring my mother half to death, we got Tess back in bed and Ellie's boyfriend was just about to leave when the phone rang. It was the hubby. "I've called 911 so you'll be seeing firetrucks coming by."

Alrighty then.

It was quite a show to watch,  and was even more anxiety producing because I couldn't go and see for myself because I couldn't leave Tess.  So I did what any awesome parent would have done in my situation... I sent Ellie and her boyfriend out as my scouts to go talk to the firemen and make sure my house wasn't burning to the ground or that the firemen hadn't found the hubby lying on the floor overcome with smoke inhalation.  By midnight or so, it was all over. The firemen helped get the stove out of the house, and the only damage was what was done by lots and lots of smoke and a fire extinguisher being used. Two days of kids and family and even Tessie's nurse washing all bedding, furniture, curtains, floors, walls and windows, along with throwing or airing out stuffed animals, rugs and other odds and ends, and my house smells okay. Sort of like a woodstove has been lit. Not great but let's face it, it could have been a whole lot worse.

And last, but certainly not least, I finally got the date for Tessie's hip surgery. Either May 16th or June 25th. I can't even talk about it right now.

And this is what saved me this week because it is just about the most awesome interview I have ever seen and I laugh every single time I see it.

 Sweet Brown sums it up perfectly..."Ain't nobody got time for that!" was your week?

Wednesday, February 6, 2013

Lesson learned

 trailer from the documentary Certain Proof:A Question of Worth

I watched this trailer today and it gave me goosebumps. What I saw hits very close to home. The constant struggle to make others understand that our kids with special needs (especially the kiddos like Tessie who are on the extreme end of the spectrum) have value and worth.

That they think. They feel. They love. They understand what you are saying. They have a sense of humor. They are capable of learning if given the time and patience it can often take to teach them. That the light in their eyes, that sparkle, is a knowledge far deeper than most of us will ever know.

And the real kicker is, I used to be one of those people. The ones who think that kids with special needs are "less than". The word "retard" would regularly escape my lips with no regard to who I was really talking about. I was one of the people who thought kids like Tess were a drain on society. They couldn't be taught. Couldn't learn. Would have to be taken care of their entire lives only to give nothing back in return.

Long story short:

I was a selfish, ignorant jerk.

I am not proud of who I was and the things I thought I believed back then. In fact, I am more ashamed of that than anything else in my entire life.  And when I look at Tessie, it makes me want to cry to know that there are others in the world who think about her like I used to think about someone else's baby.

Thankfully, here's what I have been given the privilege of finding out through experience; Tess gives back far more than she could ever take. She is smart. When she doesn't want to do something (like school), she will make herself go to sleep until she is given something she wants to be doing-like watching Toy Story 2. She is a kid who loves inappropriate humor. I often joke that if Tessie ever learns how to talk, we will all be in trouble. She thinks it's funny when I yell at  cheer for my older girls when they are playing sports.  She absolutely loves music, again, the more inappropriate (Baby Got Back comes to mind) the better. And even though she has gone through more in her nine years than most of us will in a lifetime, she will still smile and giggle at the world around her.  She thinks her sisters are the best people that were ever put on the earth (can I just tell you how awesome they are with her?!). She loves unconditionally. When she smiles at you, it shines out from a pure heart and soul.

Are there hard days? You bet. Days where you think your heart can't possible break any more and then something happens and you realize, "I guess it can." Days where the ache is so deep you wonder how you are out functioning in the world. Days where you think you just can't take it more therapists, doctors, health agencies, insurance agencies, school calls, diaper changes, meds given, seizures...NO MORE.  But you keep going because there isn't a choice.

This is your child. Your baby. And there is nothing you wouldn't do for her because she is worth all of it.

All kids are.

Maya Angelou once said, "...when you knew better, you did better."

Thank God I now know better.