Yucky. Yummy. Yucky.

So, we learn, over and over again (the hard way) that Sister can NEVER be left alone.

EVER.

But, does the lesson stick?

Maybe.

But, sometimes we are just downright tired.

And when Sunday comes, we "sleep in" before getting ready for church. (I say "sleep in" because that means we wake up at 8:30 instead of 6:30. Church starts at 9:30 and you would be surprised that even with 3 hours to get everyone ready, we still don't make it on time.)

Sister wakes up.

We know this because she turns on the hall bathroom light.

Does her stuff.

Comes in with wet hands (if they aren't wet, we immediately instruct her to go back to wash her hands),  gets 3 inches from my face and stands there with her morning breath with a huge smile and waits for me to open my eyes and get all excited that she is awake. Then she'll ask for breakfast and a "woovie" which is a movie on Netflix from my laptop.

But, this particular morning I was just too tired to be a mom.

I just laid there while she tried to get me up.

I laid there as I watched her carry my laptop out my bedroom door.

I laid there as I hear the fridge opening, the silverware drawer close, things rattling and.... then I just dozed off.

When I woke it was high past time to get ready and I was a whirlwind of getting-ready-ness.

Then as I went to grab a banana I realized 2 of them were already gone.

...

Then I saw her face as she waited for me to see her creation.

She was so proud.

She even put it in a tupperware container (thank goodness).

I looked at it.

She was getting a little concerned, I could tell.

She didn't know if I would be proud of her creation or get upset that it took two bananas, two bottles of strawberry PediaSure, 4-5 slices of bread, a few cups of milk, a couple of eggs and flour... and I think a little bit of salt and pepper.

I put on my "better mom" hat and put on a big smile and said, "Wow! That looks awesome! What is it?"

"Banana pie!" she replied.

"Sweet! Let's take it to grandma's today for our dish to share!"

We forgot it.

So I took a picture of it so they could see what they missed out on:

Mmmmm....

Then, I know, I haven't posted anything on Brother and Sister starting back at school.

So, here is my first post that has to do with that.

I took pictures of them eating their breakfast of choice the first morning back to school.

Brother chose a hamburger paddy.

Sister chose waffles. (And don't think, even for a second, that I am cool. They are the frozen ones from Costco.)

The morning was even better because their daddy had made them "Going back to school" cards that were absolutely adorable. That is what is sitting by them at breakfast.

Brother's had a locker drawn on the front and Sister's had a yellow school bus.

I thought that was so sweet that Marc would do that.

He even made one for Baby that had a big heart and her name.

The kids were so excited they could hardly contain themselves. 7 am and they were bouncing around outside in the wind waiting for their busses. They take separate ones this year because they are at separate schools. I would have gotten pictures, but, honestly, I just wanted to enjoy the moment from a naked eye view instead of behind the camera so you will just have to imagine it along with me: grins from ear to ear, bodies shivering with excitement and wind chill, and squealing voices each time someone's bus went by, hoping it was theirs.

They really love school and Summer break is just too long for them. They have been ready for school to start since the day it got out.

It was fun sitting at our front picture window watching them be excited and happy for school. I sat there thinking how blessed we are to be in such a beautiful neighborhood surrounded by huge trees and mountains. I got excited as I looked out after Sister's bus left to see that there was a bright, red apple on one of our front yard trees. I ran out to pick it and had to pause to take a picture because it was peaceful and there were no kids trying to keep me from clicking away so I took one of my apple. I know, I took a picture of the apple and not my kids on their first day of school...

Anyway...

The apple was Mmmm. Delicious.

Til I hit the middle...

Darn worms.

This one died and started to mold, I guess. Mmmm. Yuck!

An old fashioned love story

My Grandpa passed away on Friday morning and I wanted to share this video that my cousin, Davey, put together a couple of years ago, but now means so much more...

Stop-animation in Real Life

I just need a lighter note today...

So here is a quick clip of Sister with her friends and Baby playing in the back yard. It made me giggle.

And here are some stills that you can concentrate on that are just my faves from the fun:

They were trying to run and hide from the camera, this just made for more fun shots

Sister's look is just priceless in this one. She was having SO much fun!

This one too. Tee hee!

Ya, JJ's cute in this one but I posted this one because I think that Sister is a little shocked that she is spraying herself in the face... Bwa ha ha ha ha ha! She is so funny! 

I love Baby in this one! She was having SO much fun with them!!!

After seeing how hard I laughed at her in the photo above she kept spraying herself to make me laugh.

A Near Death Experience

Have you ever been near death?

Not your own...

but some one else's?

I hadn't been,

until last night.

I had just been having a great time with my mom, sister and aunts at my cousins wedding shower and then we got the news that my mom's dad (my grandpa) just had another stroke that day. My Uncle Roy let us know that they didn't think he would make it much longer.

We (my Aunt Aleesa, Mom, Kirsten and my cousins Ruby and Anna) decided to stop by on our way home to see him for a bit.

I've seen my Grandma Ruby pretty sick, and thought she wouldn't live much longer and then she pulled through and it has been 6 years since that point.

I guess that is how I thought I would see my Grandpa Fred when we stopped in.

I thought he would be a little out of it, tired and would slowly turn his head to look at us as we walked in.

It wasn't like that...

at all.

It was dark in his room but there was a light near his bedside.

Not a lamp, or a candle.

A light.

He was silent when we first walked in and then when he realized, somehow that it was family he fought hard to try to communicate.

He looked transparent, pale and scared.

With this second stroke his throat has been paralyzed so he is not able to swallow. They had a patch on his neck that kept his glands from producing any secretions so that he wouldn't choke on his own saliva.

I had a patch like that after my hernia surgery that was supposed to keep me from being nauseous and sick post surgery. It helped with the nausea but my mouth was so dry that if I closed my mouth it all stuck together and felt like I was sucking on cotton balls. It was awful.

So as I watched my Grandpa cough and try to talk or anything at all with his mouth I understood how uncomfortable he was.

I started to panic for him just because I so vividly remembered that awful feeling.

And then I started to combine it with the thoughts of dying.

It was so hard to watch him as my mom took his hand and said, "Dad, this is Judy. I love you. Everything will be OK."

That's when my fear turned into tears.

I know that my grandpa has not always been the best and I even have held some resentment toward him for things he had done or said to my mom, things he had said to me and sometimes things he had done to others.

But, in that sweet moment when I saw my Grandpa's almost transparent eyes look to search for my mom's face and watched his hand twitch as he tried to hold hers every resentment or hard feeling I had for him washed away.

Suddenly I felt a voice telling me, "I need my Ruby." And I then blurted out to my Aunt and my mom that we needed to bring Grandma Ruby in and that Grandpa was scared. I felt it so strongly.

I cried really hard at that point, realizing the love that my Grandparents have for each other.

I can't even begin to tell you the many stories of the undying love my Grandma has for her "Freddie."

Her love and devotion is a beacon that should be seen for all the world to understand true love. Even when life was as hard as it could get she never, ever left his side.

In that moment, I truly realized that their love is true love. Devoted and eternal love.

He was scared to cross over into this next life by himself.

He needed her by his side.

Just like she has always been.

There was a few moments for whatever reason where I almost felt like I was alone with him and I leaned over, kissed his cheek, and told him who I was and that I love him. He was able to turn his head and look at me and it felt as if he looked deep into my soul and in that split second I felt as though he was saying sorry for any wrong he had done and telling me he loved me.

I wonder if that is what my mom felt when he looked at her.

We then went to Grandma's room to see if we could work out to bring her into his room and realized it just wasn't going to happen. We talked to her for a moment and sang a song to her. By this time, my Aunt Rosanne, Aunt Kathy, and Aunt Jane had joined us and it was touching singing to her in her room while she slept.

As we sang I looked at all the pictures hanging on her wall that some one had put together in a collage on two different posters.

Pictures of my grandparents in happier and healthier times.

Memories of sleeping over at their house, hearing Grandpa's stories, smelling Grandma's cooking, eating her home-canned peaches, remembering how her apron bubbled over he little pot belly stomach and wondering if she every went anywhere without her apron on, listening to my Grandpa laugh and helping him feed pigs and throw grain to the chickens. I even remember all the fun contests and races he would set up for us grandkids and the grin on his face as we succeeded. He was so proud of his kids and all their talents, still is.

Then we went back into Grandpa's room and were quickly reminded of his suffering.

I cried some more.

Sad?

Yes.

Scared?

I think so.

I had never been near death before and I think it is actually more peaceful than I had ever thought.

They have given him 10 days to live.

There is nothing they can do for him.

I only hope that before he dies he can be with his Ruby, here in this life, one more time.

A great gesture of love

 I am constantly amazed with the youth in this era. I know that there are still prejudices and misunderstandings, but it seems that there is so much more awareness of kindness toward other youth with disabilities.

When I was a teenager I was nervous around those with special needs, and frankly, didn't know much about it all. Maybe I was sheltered. Maybe I was naive. Maybe (oh heaven forbid I am going to let know how really old I am now) 22 years ago there just wasn't as much advocacy for children with disabilities as there is now. I am pretty sure it is a mixture of all those things, but more of the latter.

There is one young man, in particular, that this post is about and I will call him "MrSuper."

He had invited Brother to celebrate his 13th birthday by going out with him, his mom and a few other friends to get ice cream. I was so impressed that he would want to do this and that he truly thought of Brother as a friend and not just a project. When the time came for them to pick Brother up to go out for ice cream I had neglected, that day, to put out the picture schedule to give him a fair warning that he would be going out of his comfort zone to a gathering at the ice cream shop... so he fell apart. He refused to go. I felt so bad because it really was my fault for not preparing him ahead of time.

The great part about this is that MrSuper was not going to give up on him and waited in the car while I tried to convince Brother to come.

It was still a no-go.

I reluctantly went out to tell MrSuper and his mom that Brother would not be joining them today and thanked them for the invitation. With that, MrSuper's mom offered to bring the party to Brother. She said they would go get the ice cream and bring it to their house where Brother is comfortable (because he has been there a few times to hang out).

I was so impressed by that and got excited assuming that this would totally work for Brother.

30 minutes went by and when they came back to pick Brother up for the second time MrSuper talked to Brother and invited him to come. I was watching through the upstairs window as all this was going on outside. I was hoping that the conversation would go better without me out there to make Brother feel the extra pressure. I watched MrSuper walk away slightly dejected but a smile still on his face. I was so happy that he even tried and tears of joy had already welled up as I walked got up to thank MrSuper for his efforts and to apologize that Brother wasn't joining in... but then MrSuper's mom got out of the car and started to make efforts to encourage Brother to come with them. She was doing everything perfectly, a no pressure approach with lots of love and care and little eye contact. It was awesome. I hadn't even told her to do that, she just did. The tears streamed down my face as I watched her efforts and yet he still declined the offer.

She came to our door with Brother's cup of ice cream and before much could even be said I just cried and hugged her because of how impressed and touched I was by their efforts even though Brother was doing everything he could to shut them down.

I don't know that I would have made that much effort. I would hope I would have, but don't know if I would.

So, the moral of this story is:

You don't always get the happy ending you think you are going to get when you go above and beyond the call of duty, but your efforts are seen by someone watching from an upstairs window and He will see your true gesture of love. Your efforts may seem unrewarded, but they are not unnoticed.

As a side note: I want to tell the youth who attended  the "Junior High Back To School Night" as soon-to-be Peer Tutors in Special Ed and specifically requested to tutor Brother, I cannot explain how much this meant to him and how much easier it will be for him when he starts school next Tuesday.

Sister's Birthday Party 2 of 2

Finally after 5 months of complete-and-total-melt-down-never-ending anticipation, Sister finally had her official Birthday Party. She has been talking about her birthday everyday since March and was relentless in her pursuit.

You could say we were both relieved that we were finally to that wonderful day!

She wanted a LEGO party so we set to Pinterest and saw some ideas I thought I could handle and we chose to do a LEGO pinata, a LEGO cake, color LEGO pictures and play a LEGO game. So, really, we kept it VERY simple. Really, I have to keep it simple because as much as she thinks she wants to have a big to-do, I know that she will fall apart if it is too big.

So we colored while we waited for people to come.

Then we played a building game where they took turns unwrapping packages of LEGOS and had 10 seconds each to add to the building.

Then we broke the pinata.

Then we opened presents.

And last we sang "Happy Birthday" and ate cake and ice cream.

Simple, right.

It lasted a total of an hour.

She was so happy and having so much fun, but I could see the tell-tell signs of her becoming over-stimulated.

And, yes, she was.

After it was all over she completely melted down and it was a long day trying to get her back into the regular groove.

Am I sad that we had a party for her.

Heck no!

She loved it in the moments of it and I LOVED seeing her pure joy as her friends showed up to have fun. She was so thrilled with each gift I seriously could have bottled up her overflowing joy and sold it!

The light bulb just went on...

I am so excited to report that Baby is talking in short sentences!

Sometimes.

And they are all things she has heard me, Marc, Brother or Sister say and she says it exactly the same way we do but it means something and is not just jabber.

Real words and requests like:

"Mommy, Look"

"You're funny"

"What's this"

"Where's Mommy? She's coming back?"

"Where's [insert name of preference here]? She's/He's gone?"

She understands what I am saying, like "let me help you," "let's go take a nap," do you want milk," "let's go to bed," or "get in the car."

This is so huge that she is understanding us.

Miraculous.

Momentous.

Melodious.

It is so amazing to finally have your almost-three-year-old be able to understand that you are trying to help her with something instead of freaking out that her world is over.

It is so neat to really hear her voice and all the cute little inflections she puts into her phrasing.

She is starting to do what you hear so many other Fragile X children do and that is mimicking. They are amazing mimics. It is quite a fun little talent to watch a lot of them do, actually. In fact you should watch this cute little video on the National Fragile X site "Fragile X got Talent." (Brother has a little spot in it, and there are so many amazing talents in there. I love to see that our kids can succeed.

I try really hard, though, to just be excited that Baby is talking and not worry that much of her talking it actually echolalia.

You have to look on the bright side of the X.