Wednesday, December 10, 2014

She called it the Monster

Today we had an early morning IEP for Abby. All IEPs have to be done before school hours as to not interfere   ...I think

We haven't had one since last winter. It was the first one where I ended it without an argument.

One the way there this morning I didn't have my usual, " Don't be an asshole." Talk with myself. I don't have to take deep breaths. I didn't  grip the steering wheel, hands aching by the time I got there. Why? Probably a few reasons. I AM exhausted. I have accepted my child. After probably 10 IEP's. I am more educated and they are more used to me.

This time though...l almost don't have words. It was like there was a team there for the sole reason to come up with an


Like one for my kid and about my kid. Like really what is best for her. Her.

I'm not going to fault any previous staff. People try. People become hardened. I was clueless at first. Then I was angry for the next few. I was fed up for a few. I was not an easy person to deal with. Then I just became tired. So tired. I didn't want to talk about how disabled she is. I didn't want to have group pow wows over it.

Last year was a transition year. The teacher she had for 3 years had retired. I was so defeated. I don't want to start over. I didn't feel like  I had it in me anymore. I had been Ill with Pneumonia. I was in pain all the time from a spinal injury that was yet to be diagnosed. My husband was unemployed...again.

I remember going in for meet the teacher night. I didn't know her. At least I thought I didn't . Turned out she had been at the last IEP.

I went in with Abby's PODD book, a switch, her Tobii and one request. Give her the benefit of the doubt. Look in her eyes and believe in her. She did. From that moment.

At the beginning of the year. The first day actually. I knew this year would be better. A little more hope. Abby's PT from Early Childhood was the new head PT for the district. She believes in her.

She was the one today...for the first time, that said, " She has met her goals. We need to add to it. She more than tripled it. YAAAAHHHHH!!!!

Then she said it. She said it unscripted and without prompting. She said the words us families only know about and say to each other.

She called it the monster.

".... It all depends on how the MONSTER is affecting her that day."

I shocked everyone I think by bursting into tears. She got it. She paid attention. She had been listening and she knew. Not that day. Not today. But all along. Even with 4 years away from Abby. She knew. I almost can't even type my heart is so full.

Someone..not one of us gets that Abby is trapped. That something has her and we can't see it. We can't kick it's ass and it has all the power. The monster that stole her in the night..that's what we call it...dragged kicking and screaming into a world all her own.

And by my reaction to that statement. I poured tears. I couldn't complete a sentence for a few minutes...I'm sure the rest of the team get it now too

There is hope in this world.

Thursday, October 16, 2014

For just one day.

Yesterday was a miracle day for us. We don't know where it came from or where it went but for yesterday, Rett Syndrome did not kick Abby's ass. For yesterday she stomped all over it. Like a little Princess Ninja. She woke up about half an hour before her alarm. She was happy, ecstatic even. Like she knew her neurons were firing. She wasn't humming. She was jabbering. She would look at me and squeal. Squeal with delight. I didnt really get it in the morning but I loved it. I figured she would fall asleep on the way to school and that would be the end of it. But I kinda wondered through the day. I almost called a few times but I didn't.

 When she got home she was squealing. When I said Hi she said it right back. My non verbal child said Hi. She smiled and laughed and her nurse and I were just in tears. When she did her few minutes of assisted walking and penguin dancing with Dora after her evening tube feed she did without having to balance herself constantly. Without having to constantly move from side to side. 10 minutes turned into an hour. An hour on her feet without falling. When Dora would end and commercials would come on she squealed with delight about different shows...DIFFERENT than Dora. At that point we had to sit down and try to figure out what we had done in the last day or two. Any different ingredients in her food? Did she miss or add a med? Was anything added or subtracted?
Her brother was hanging with us. This is unusual. We were teasing him and he was ribbing and cracking on himself. At a particularly funny quip she hit herself upside the head, laughing and said,"Oh boy!" Two words together? What? I loudly said "Abby." I was shocked and in awe. She looked me dead in my eye, smiled and said,"Abby" while patting her chest. I could have died at the moment. Something was happening. Her brain was working with her body. We were all just beside ourselves. So caught up in the moments we just enjoyed it and didn't try or even think to film it. It came in spurts, exploding out of her, here and there.

 When she went to bed I got her book bag and her notebook out. Her teacher wrote excitedly that Abby was Very vocal all day. Really really social and happy. Spot on with her work with even some hand use. Hand use! I went to bed happier than I've been in long as I can remember. I almost felt some peace in my heart.

 That was yesterday. Rett returned with a vengeance this am. No eye contact, lethargic, hand mouthing. Falling asleep instantly like an infant. Blank. I know I am not the only one that thinks....I wish I could have her back, have her be normal, have her a little better...even just for one day. I guess that was yesterday. I need more. She deserves more. October is Rett Syndrome Awareness Month. this is our reality.

Yesterday, all my troubles seemed so far away
Now it looks as though they're here to stay
Oh, I believe in yesterday

Monday, September 1, 2014

Finally.....A van

Sorry so late with this. Because of a local family, actually 2 local families and their friends and family we finally have a van. A wheelchair accessible van.
 Our local community is awesome. So thankful and humbled by those who are always there for us and the perfect strangers who made it their mission to make this happen.
Our friends threw a party. We got word out on the internet and on radio stations. 6 days later we had a van from an incredibly kind local couple and their family.... and here it is......
 The Jeremy Nichols Band Played and they were great!
 Local support from great friends who get it
 Local awesome people who also get it
Me and my girl taking a break
 This girl never lets me down
 Heather and Peter Caster and family put this all together and they were just wonderful
 A silent auction gift from a very kind stranger
Blizzard Entertainment silent auction gift
 The van! Big red. 1999 Ford E150 Econoline with only 25,000 miles
 A lift!!!!!
 Captain Chairs!
My spot!

I often think in this digital age that it is a shame that we don't send personalized thank you cards anymore. Id like to...I wanted to but there were just so many involved that chose to stay anonymous or were strangers to us.
If you were involved in any way...from working, entertaining,volunteering,sharing,donating....Bikini car washing... We are so grateful/ We do thank you with all of our hearts...and my neck and back!

Friday, August 22, 2014

A Day for Grandma

My 91 year old Grandma passed away in December. I knew when I was going to Washington that I would bring part of her with me. She loved the state and worked as a fruit picker and elevator operator near to where we were going to be staying. We took a lock of her hair, mine and Abby's along with a ring she gave me when I was 18 and a gold necklace to a meadow with a view of Mount Rainier. Near the top of Quartz mountain. These are pics from that field and the views from there. All pics were taken that day on that mountain....Love you Grandma! Thank you Irby family for doing this for me. It was a day of high emotions,incredible friendship and love.

The day before this adventure I had called my Aunt and told her the place wanst night. The town she had talked about. I just wasn't feeling it. It was a valley in the middle of a desert. I was very upset. I was hurting because I was only a month out from surgery. My Aunt reminded me that Grandma had worked in that town but always talked about the surrounding area. Clear lakes, Mountains,wildflower fields, waterfalls. She said specifically,"You'll know it when you find it."I talked to my family there that night and they told me the place had to be Quartz Mountain. We drove as far up that mountain as we could that day before snow blocked the path and I had an extreme panic attack. We went back down maybe a quarter of a mile and went to turn around in a wildflower meadow. I got out and walked around and knew. I had found it. A field of wildflowers, a clear lake, views of Mt Rainier, Mt Adams and the Cascades. We spent a good amount of time there that day and I had the breakdown moment I had needed since she left us.None of it would have been possible without Jerimarie. She gave me the box we put the items in. She and her daughter helped me pick wildflowers. She dug the hole for me. All for a woman that meant the world to me.The following are pics from that day.

Tuesday, August 19, 2014

What I did on my summer vacation

This summer has been pretty cool. We did a few things we've never done before. There is much more we would have like to have done and experienced but again...the old Mom cant take it right now.

I started Therapeutic Horseback Therapy. Its slightly different than Hippotherapy where we mostly rode. Now we have to play games, do a bunch of PT and OT from the horse and follow direction. I cant do the last for the most part but my new horse friends help me alot. I sure miss my Jeff and my Joan from Thursdays though!

We took a trip! My Mom had booked it before she found out about her surgery and when she went to cancel our friends said no way! They did every lift, every bath, every dressing and changed me every time I needed it. Such a blessing and help for us both!

 We went to a place in Washington called Camp Prime Time. Its a fully accessible camp and many of our friends we have met online go there. It was a heck of a distance but we don't regret it at all. Washington is beautiful. The weather is great. We didn't see one snake, rat or roach and ready for this??? No chiggers!
 Our Daphni Jo and my Mom
 Daph and me just chillen watchin Pooh
 Me and my Jerimarie
 Dalisa got this pic of me on a boat at Clear lake. Love it!
 My Moms thought this treehouse was the neatest thing ever. There are so many things with Rett you just assume we will never get to do. Oh yah? Well I played in a treehouse!
 Ramp all the way up!
 My Mom has to help me cause I cant really to slopes up or down or uneven ground

 Jerimarie knew we was coming but we surprised Robyn!
 In the tree!
 Waterfall coming off Clear Lake
 Rim Rock Lake nearby

 Giant rec room/therapy room
 Green Neon exit sign! I must have one! Coolest thing there
Struttin my stuff of an even floor

 Air hokey
Fooz ball
 My nig helper Jenelle's head kissin me
 My first roasted marshmallow with my friend Addy
 OMG can I have some more
 Was so good
 My Moms and her big undercover attempt to surprise our friend Robyn who just thought we were being weird!
Many thanks to everyone that helped me and my Mom so we could have this experience. Jerimarie,Arlo,Devin,Lola,Jenelle. You are awesome!