Magics, Magic, and Magic...

Three completely different things.

I have started Brother and Sister in a gymnastics program at the city recreation center. They love it and look forward to every Wednesday!

Yesterday Sister asked when we get to go to "magics!"

That is how she says "gymnastics."

When we got up this morning she kept jumping up and down saying, "Magics! magics!"

Then the picture shows Sister's blue magic.

She was doing her thing where she lines everything up on the kitchen stools to play her "games." I noticed that everything she had was blue. I asked her what she was doing with all of it and she said, "Magic." I asked her if it was magic because it was all blue. She smiled and said, "Ya, blue magic."

As long as it is blue, and not black, I am happy...

The last magic is the magic I see when Brother and Sister are at gymnastics doing a structured physical activity. It is so awesome to watch them do summersaults and hand stands. I just can't stop smiling watching them succeed.

Bedtime and Beacon

Brother loves to be read to before he goes to bed. Lately we have been reading "Fablehaven" by Brandon Mull. Awesome book. There are 4 or 5 and it is our goal to finish the series before summer ends.

Marc snuck a picture of me reading to Brother because he thought it was cute to have Baby sitting on my lap listening to the story.

My first thought was, "Oh my gosh! Look at me. I look like I way 300 pounds in this picture. My double chin! My stomach! Uggh! Me in 'all my glory'!"

Ya, go ahead an look. It is true. It was a surprise picture, I didn't have the opportunity to to suck in or turn to my good side. Me in all my glory!

And then, I thought, who cares what I look like physically in this picture, this is my glory... spending time with my kids. So, people, look and judge all you want the point is not how I look but, what I am doing... so enjoy it for what it is... "Me in all my glory!" Tee hee! (Not to mention I look like I am an old lady wearing my reading glasses.)

After the kids were all in bed, Marc whispers to me from the kitchen, "Rachael, come here and don't turn the lights on." I walk out onto the porch and there is a flashing light coming from the window well... what the...

Oh, yes, it is a flasher....

no, no, not a naked person wearing a trench coat...

a flasher for construction...

flashing light.

Ya.

A homing beacon.

In my window well.

mmm hmmm

I know who did this.

I even know who owns it.

But, it wasn't the owner who is the culprit, they were only the supplier.

Let the summer games begin!

Flowers and Books in the morning

I love to go out and pick the wild flowers in the morning. Not because it is beautiful and serene in the morning. Or because I am alone or enjoying the fresh air. But, because that is before the bees and hornets come out...

Yes, that is a magnifying glass Sister is holding. She loves to surround herself with books—literally!

She's reading "I Can Read With My Eyes Shut" by Dr. Seuss.

Interesting, that book. It is funny and the kids enjoy it but, as with many of Dr. Seuss's books, there is a hidden meaning. The Cat in The Hat talks about how cool it is to read with his eyes shut but then goes on to talk about all the things you'll miss if you don't open them. I think he is, in a way, saying, "Ya, you can get through life without opening your eyes, that is very cool, but, why miss all the scenery along the rest of your journey?"

I realized that for a long time I was going through my remorse of missing 18 and 13 with my eyes shut to the rest of my family . How can I possibly go on being a good mother without opening my eyes to the adventures I have lying ahead of me with my own children? There is so much to see, experience and behold. I don't want to miss a thing. So although I can probably "see" the past with my eyes shut tight, I will open them and see all that there is to enjoy and behold on my way through life.

"Our lives will depend upon the decisions which we make—for decisions determine destiny." —Thomas S. Monson

Gardens and Water

We went as a family to the Water Conservancy District for our county. The kids loved it. It was cool to see all the beautiful plants that don't use much water. We especially enjoyed those little houses... Apparently, to Brother, inside the little houses was a sanctuary. He is such a kick.

Then we went to the pool nearby the gardens. It was packed, hot but, a lot of fun.

Her faces make me laugh every time.

Baby had a good time splashing in the water too. I wish I had a picture of her...

Baby has been doing well. She started sitting up really well on her own a few days ago. She has been babbling again, which is good to hear. Today she said "boo." Maybe it is because she has a bad cold and was really stuffy so "oo" sounded like "boo" but, I will take what I can get.

She has a real yucky cold that she got from me so I am hoping that it doesn't get any worse. One bout of RSV per year is all I can do...

Faces, Flowers and Toes

These are some of my favorite faces

My mom, she's so pretty! 54!! Ya, I know she does look like my sister, I get that all the time! Her surgery has been healing well. She is quite the trooper. She is excited to be able to do her own hair again and all the other things that come with having two good arms. Like picking up Baby. She had to pick her up by her overalls to hold her.

Then there are Sister's faces that tell me, "no pictures!"

I love my wild flowers. I love to cut them from my back yard and arrange them in a big pot to place on my kitchen table. Oh, I love it!

And, I finally had to do something different with my toes. This was a fun one! Lime green, magenta and black—mmm

Faces of Fragile X

Yay! I did it! We got the annual Fragile X Family Picnic done! It took a lot of planning on my part but, it went well, even if the rain did force us indoors.

The plan was to have the kids ride our horse and have a BBQ in the back yard...

I thought bringing in a variety of rocking horses was a funny idea, and the kids loved it.

Above is Brother. Man, that kid is so good looking! I love his ears. And yes, they are big. That's why I love them. He had so much fun. My dad just loves to be there to help him. I love the picture in the top middle of my dad and Brother. It goes to show you that my kids really do look like my side of the family... genetics... tee hee!

Gallery Image Photography did a great job taking pictures inside a poorly lit church building. I was happy with all the images!

Baby and Sister were having a great time too.

And I have to thank all those who helped me with this party. It was an undertaking and I couldn't have done it without all my family and friends who helped! Thank you!

Even Brother's friends helped. And even 18's friend helped! My mother and father-in-law, my dad and mom, all my sisters and brothers (yes, "all" —my brother Daniel, now living in Florida, donated the bounce house to us to use for the Fragile X Association parties).

We had lunch, face painting, bounce house, rocking horses, coloring, bean bag toss, and socializing.

I cannot express enough the love and support I feel from my family and friends. I am truly blessed. I was so warmed by the unquestioned help I received. I know it is because they all love my children. That, in and of itself, is what warms me the most. Embracing my children, regardless of disability or ability, that is selfless to me.

My family is consistently there for me when I need them or when my kids need them. And, sometimes, I am ashamed to admit that it is often that I need their help. My eyes get a little teary as I think of the sacrifices they have made to help my and my family.

Most of all, though, my husband. What would I do without him. He is there by me, day after day. He sees me at my best and my worst. And when I trully felt at my worst, knowing that I was the carrier of this genetic syndrome and have passed it to all 3 of my children, he has never left me, blamed me, or accused me. It is said that families who have children with autism or autism disorders often end in divorce. I am so thankful that we are not among that statistic. (No, Fragile X Syndrome is not autism. They can have autism along with the FXS, and even without the autism they still fit on the spectrum.) He has given up many things to be able to father these children by my side day in and day out. I have the utmost respect and love for him. We have many sleepless nights with Sister and Baby up at rotating times in the night. We give up time with friends to keep a steady routine for our kids so that we can actually feel somewhat "normal." We spend countless moments with Fragile X Syndrome.

It is hard. Really it is.

That is why I write this blog so dedicatedly. I do it for anyone who wants to understand how a family survives with a syndrome that so closely mimics autism but, also has it's additional and different challenges of low muscle tone, connective tissue problems, double jointedness, hyper-arousal, speech delays, physical delays, and knowing that there is a 50/50 chance of passing on the gene if you are a female carrier and a 100% chance of passing it on to your daughters if you are a male carrier.

I want to help inspire or just raise awareness about this. If that means that I air my dirty and clean laundry to the public and help one family in this world then it is worth it to me.

I implore to any of you who read this and are carriers of FXS, don't dispair. God has a plan for you and any children you may have or adopt. Know that it is all between you and God whatever your decision may be. Science says, "no" and God asks us to "have faith."

Every entry in this blog may not always refer to FXS but, you have to realize that, to me, everything refers to FXS. It is my life and is always on my mind. That does not mean I always live in dispair. More often, it is hope and faith that I live with. And sometimes it is complete and total aw that I have the opportunity to watch 3 children with a genetic disadvantage make it their advantage. I also am so happy to know that ALL those who know and love my children—family, friends, or readers—LOVE my children for who they are not for what they have. Bless you for loving them. Thank you.

Small Town Park and Really Black French Fries

When my mom got her surgery I decided it would be fun to take an outing with the kids to got to the park and then make lunch for my mom. Why would I go to the park first you ask. Because I wanted my kids to get all their wiggles out so they wouldn't run into grandma or hang on her or cause any mishaps.

I haven'tbeen to this park to play in a few years. It is in my hometown and it has been renovated very nicely. It has a paved trail all around the park that was perfect for Brother's rollerblading attempts. I had him take baby around in the stroller so that he could stay on his roller blades a bit better.

He was having so much fun,but it was hard work so he gave up the stroller about 1/3 of the way through...

Sister was having a ball on all the playground equipment...

And in case you couldn't tell, we had the entire park all to ourselves.

There were horses in the fields next door that the kids LOVED. You would think we don't have a horse in our own back yard the way they act when they see horses.

Then to my mom's to make her lunch. I thought it would be  fun to make her hamburgers and french fries.

The hamburgers went off without a hitch.

However the fries were an entirely different story:

Me: Mom, what heat do you set the stove for the french fries?

Mom: High.

Me: All the way High, or Medium High?

Mom: Almost all the way high.

Me: OK. (And then I turn the stove on high, almost, put the pan of oil on to get heated and begin to cut the potatoes)

Me: Dad! Dad! Why is the pan smoking?

Dad: Oh, your mother made french toast in that this morning so it is probably just something in the pan.

Me: OK. (I continue to cut potatoes and then place them in)

Pan: Spissssshhhhhh!!! Crackle! Spissssh!

Me: Dad!

Mom: Is everything alright in there?

Me: Um Dad! It's smoking really bad!

Dad: I don't know.

Me: Uh, mom does it usually smoke like this!

Mom: How is it smoking?

Me: A lot!

Mom: No. Turn off the burner, I think it's too hot.

Dad: Uh, Rachael your fries are blacker than black in here.

Me: (running into a smoke filled kitchen) oh crap!!

(Side note: Notice the saying above the stove--all too true if you know my family at all--and was a perfect saying for this day)

I turn off the burner. Take out the fries and want to cry but, can't, I am laughing too hard. I have never seen fries so black in my entire life--I am sure you haven't either until now.

I had to go around opening the windows and doors in the house to let all the smoke out and here it my mom stuck in the middle of it sitting in her recliner trying to relax from her rotator cuff surgery and I am trying to fix her a fun lunch and .... oh well... we sure got a good laugh out of it so it was good to see mom laugh. The next batch of fries turned out delicious!

Oh the joy!

Talkin' With Daniel

 

This is how we get to see Daniel and his family...

My mom and dad got to talk to them too.

We love web cams!!

I love technology... whoa I just sounded like that guy from Napolean Dynamite...

Minute to Win It

was what they played at MrT's Birthday Party!

I tried to get  a picture of MrT sneakily but he knocked my camera away...

Brother was so excited that there was a pedometer involved. Running is his favorite thing to do and he was excited that his steps were being counted. I love that kid! (The picture of him giving "five" to my sister, Jessie is because he won the Pedometer Race in a minute!

(Check out MrT's "jig" trying to get the pedometer to get higher numbers—he's the chicken wing kid in the top left corner)

Sister was just happy to play with her cousin LittleB. (And look how cute—LittleB is reading Baby a story—she LOVES Baby)

And Baby, well, she's just cute all the time! (smile)

Ya, I know, her flower could double as a sun hat. That's how we roll.

Hobby Farm for the bus buddies

So when your children are in a Special Education Program here in this district they get to ride a bus. The bus comes to pick them up right at the house. It is very nice.

Anyway the kids that all ride Brother's bus together get to be buddies over the course of the school year.

This year the bus driver and the bus aid wanted to have a get together for all the kids on the bus because a lot of them will be going to different schools next school year.

I was a little hesitant to go but, boy am I glad we did. I went with my friend and her child that also rode the bus with Brother. It was so awesome. It was the bus aid's farm and it had quite a collection of different animals.

There were bunnies, cows, emus, pigs, turkeys, guinea pigs, chickens, goats, horses, and ducks. It was amazing and Brother had a total blast.

He loved feeding the calves--I told him that is what I did as a kid growing up on the dairy farm.He couldn't believe it--no really, he couldn't...

He wanted me to hold the bunny because he liked it but didn't really want to touch it.

He was so happy he couldn't stop giggling!

Brother got some chicken feathers and was so excited when he found "Rain" (the paint horse from the movie, Spirit.

Her real name was Daisy and she adored Brother... she even let him put the feather in her mane like an "Indian horse" and gave him kisses!! Made his whole day!!