Monday, November 16, 2015

A Bike For An Angel

A few Nights ago this bike advertisement showed up in my Facebook newsfeed and I shared it along with some quip about how nice it would be. Abby loves the outdoors. She loves wind. She loves trees and the sun on her face. There is something awe inspiring that happens to her in nature, Like you can see a little bit of God in her face. Its hard to explain.

It was really kind of a (Don't I wish) kinda thing and I never thought anything more about it at the time. I have a lot of don't I wishes. If I ever dwelt on them Id be one sad Panda. Dwelling is bad.

By the time I went to bed that night one of my dear friends was insisting and rallying the troops as it were to get us this bike. He works with Special Needs Kids. He knows Abby and for a time in his life, not too long ago knew what it was like to be trapped in his own body. I truly think he feels a kinship to her. He may even understand her more than I can, or at least on the same level. By the next morning he had talked me into setting up Paypal and a Go Fund Me Page To get us this bike.

As you know Abby cannot ride a bike on her own. She cannot hold onto the handlebars nor can she push the pedals. When she was four i think we got her an Amtryke and I remember thinking on the way home that one of the first things I thought when she was diagnosed was that shed never ride a bike and was so excited that she was going to be able to. After a few days of sitting her on it, tying her hands to the bars and strapping her feet to the pedals I realized that maybe she wants going to be able ride a bike. I can remember having her Dad take her off and take her into the apartment while I sat on the porch and cried my eyes out.

I never even dreamed a Wheelchair seat Tandem bike existed.

But it does.

My friend has offered to pay 1/3 the cost of this bike, which like everything labeled special needs,disabled,or adaptive is very expensive.

We would be very grateful if any of you would donate to help us. We've had one donation thus far and I have already started looking up trails. This would be amazing for Abby.

For more information on the bike click ">here

To donate Click ON THE WIDGET ON THE BOTTOM OF THIS POST and the top of the sidebar.

Any Questions? Contact Abby's Mom  via

Thursday, October 22, 2015

Things to never say to this Special Needs Mom

Wednesday, September 9, 2015

When a Mom Can't fix it.

As most of you know I took some time off from the world of blogging and social media for the most part to deal with life. Every once in a while it has to be done.

Abby just started the 5th grade. Yes seriously. Our baby is in the 5th grade. Almost unimaginable isn't it? Considering they told me when she was two to take her home and make her comfortable and that she was going to die. To all those uneducated scientists that ruined my life that day

The one thing they did tell me that day that was absolutely true, although it also sent me into a complete rage was,"There's not much we can tell you..You'll have to go on the internet and find other parents with children like yours. Special Needs Communities can be incredible."

I remember at the time thinking that the doctor needed to be hung upside down from the 10th floor by his feet. What a jerk right?

I think he may have prepared  himself before that meeting almost 9 years ago by reading the same paragraph in the back of an Autism book from 1983 that I had when I figured out that Rett Syndrome was probably what she had a few month earlier.

It was the only thing he said that day that was true. I wasn't much of an internet person at the time (It takes me a few years to catch up on any trend. lol

Who I am today and who I was on that day are two incredibly different people. I remember going straight home and doing as I was told as far as not Googling Rett Syndrome or anything about it. Seriously Rett can be such a bummer. Especially since the internet is not regulated and anyone can write anything they want about anything. Like the bathroom wall in Jr High. Back then the idea of talking to strangers, especially at that time made my stomach turn but I gave it a shot.

6 months after I can say I had friends for life. All except one, at that time I had yet to meet. There are those moments in the beginning when you feel so incredibly lost and alone. Having someone to call or turn to makes all the difference in the world in putting your heart and mind back together. I never once had a parent who had been there not take my call, night or day. Not once. It did not take me long to become one of those parents.

Soon after I started my own support group when I saw that all my friends were friends with each other. They also had never met in person. I can truthfully say that I have learned more from Rett Syndrome parents and Special Needs parents than any doctor has every been able to teach me or get me to understand. Having someone say its okay to be angry. To say that you have every right to feel cheated. To have another human being that can finish your sentences on the very first conversation. That happens. Its real.

I guess what I'm trying to say to those of you that are new to this journey....There are people that are out there. There are people that do get it. There is a bond when someone knows your heart and soul the first time they lay eyes on you or hear your voice. Sadly, many times friends and family just don't get it. For a very long time that made me very sad until one day I wondered how I would feel. I'm a fixer. Most Moms and friends are. What do you do when you just cant fix it? No matter how much you would like to? Most pull away and avoid. They avoid their hurt and they avoid your hurt. Most of them are not the soulless jerks they seem to portray. Its a defense mechanism, Fight or flight. Learn to forgive.

If you are new to this there are people out there that get it. They want to help. They do it because they don't want to ever feel as lost as they did when they started this journey. Healing hearts heals hearts....for everyone.

If you are a family that has been in this for a while and holed up and buried yourself because you didn't want to deal with anyone else..that is completely understandable. If you ever need anyone. We are here.

This is how we fix it.
I have many links on the sidebar to the right. If you can't find what you are looking for please feel free to contact me.

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.