Wednesday, April 25, 2012

Home Projects and Hair Stylist

At some point I will get pictures of our house up on the blog so you can see how it looks. But I am too particular and want to have it all together before I officially post pictures.

So I have no cool pictures to post, but I wanted to document all the work we have done on our home so far.

1- The week we moved in we had all the electrical re-done, put in a flood light in the back yard

2- Had my Uncle Slade fix some plumbing so that we wouldn't have leaks in the basement, fix some drywall,  put in the garbage disposal, made my laundry room shelf system and fix the tub faucet upstairs, and sure up our back porch rails and steps

3- Purchased a new furnace the first week we moved in

4- Painted some bedrooms just to break up the tan that was all through the house and get rid of the bright purple rooms in the basement

5- Purchased a new refrigerator (because our door wouldn't seal), gas stove (I don't like electric) and microwave (the one here was broken)

6- The new countertop comes tomorrow

7- We'll be getting a new roof next week

Then I think we will be, gratefully, taking a break for a while from our home projects until we have the money to get our leaking master bath shower replaced.

But, hey, the plus side to this is that in order to make all these repairs I have resorted back to cutting and coloring my own hair again...

Wait... that is not a "plus" side.

OK, the plus side is we planned for all this ahead of time so we saved aside some of our equity from the sale of our other home to make most these repairs.

Notice I said "most." That is why I am being my own hairstylist. Some of these things were not planned fixes. But, hey, I am proud of us for being able to get it done.

Monday, April 23, 2012

The View From The Fourth Floor

My appointment with the General Surgeon was in a room on the fourth floor.

There was a great view.

So great, that I had to take a picture.

Beautiful, huh.

I was able to look at it for over an hour while I waited in the tiny room for the Doctor...

thank goodness there was a view.

But, it did give me some time to reflect and think.

I don't think very often.

Tee hee.

OK, I think, just not in a peaceful room by myself.

I started laughing when I thought about mine and Marc's date last Friday night...

If you haven't been to a kid's toy store like Blickenstaff's on a date, you should try it. It was so much fun reminiscing about our childhood while playing with toys we had as kids and being goofy with the things we hadn't seen before. Obviously, the machinist glasses were our favorites. (Ya, I know my shirt has static-clinged to my belly, so what (smile). It was so funny, because the place was packed but there was not one child in there, it was all adults, and it was fun.

Then after I got done chuckling to myself I started thinking about how serene it was on Saturday as we me and the kids laid out on a blanket under our big maple tree in the back yard and just enjoyed being.

Then the doctor finally came in and I had to come back to the moment.

We did the whole talking about how the hernia occurred and I let him know that it wasn't really hurting so bad anymore and that it would probably just go away. But, then he had to examine the hernia site, and low and behold, he was able to make it hurt again... ouch! I thought, at that point, he had just pushed it back in and I was going to just walk out of the office and get back on with my day and just return to him every so often like I would a chiropractor and get my hernia "adjusted" every couple of weeks.


I'm just naive.

You can't do that with an epigastric hernia, I guess.

You have to have surgery for that.

It's a 3-4 day recovery time.

He told me he wants me to arrange child care for a full week because of the situation with the kids.

Okee Dokee.

It's not an emergency or anything, but I wanted to have the surgery done while the kids have school so that I could just have some one care for Baby most of the day instead of all three, all day.

So, one week from today I go in to have some mesh sewn into my belly to keep that darn stuff in (he made sure to specify that it was FAT poking out of the hole in my "six-pack" abs and not my intestines... I guess I am supposed to be happy about that).

I guess my new neighborhood will be getting to know us a lot better, a lot sooner...

Saturday, April 21, 2012

Daddy, do you love me?

Every day.

Sometimes multiple times a day.

For the last month.

Some where in the house,

or the car,

or at the store,

Sister will stop her Daddy, look at him, and ask, "Daddy, do you love me?"

He smiles his sweet smile, and says, "Yes, sweety, I love you."

It melts my heart every time.

Seriously, I cannot express how full my heart is to be the mother of 3 children with Fragile X Syndrome.

This picture was taken on her 5th birthday a few years ago. (You'll notice Sister's smaller teeth and Marc has hair...)

Thursday, April 19, 2012

I'm a mom of 3 children with Fragile X Syndrome

So, many of you who have the wonderful privilege of knowing our children know them as, generally, good kids.

And they are...

a lot of the times...

that you see them.

But, at home, well, that is a different story.

Home is where the heart is.

Home is also where we let our hair down (so to speak).

In other words, after a day of overstimulating situations and expectations, our children feel "safe" at home and can fall apart or decompress. Often, decompressing can be just watching TV, coloring, or playing a game on the iPod. There are many times, though, that it can be very intense screaming, sensory seeking behavior or even all out tantrums.

Often these tantrums or as I, and many moms out there, call them melt-downs are because of a change in routine or a bump in scheduling.

We went to the building that our children usually attend respite care to participate in a online video chat that would help funding needs. Anyway they had asked our family to make a "cameo" appearance for that and our kids seemed very excited when we approached the building.

Now, mind you, I prepped them all the day before and the day of that it was only to talk to people on the computer and not for respite care. All was fine an dandy until...

well, actually I don't know what it was that set her off.

She just melted.

Actually melted would be too mild of a term for this situation.

Sister completely and totally went ballistic! Really. She began to flail herself against the walls. Running crazily through all the doors, and sometimes it looked as if she would try to run through a wall. She was hitting herself and trying to hit everyone else all while throwing whatever she could grab hold of. She was doing all this while screaming, "Where are my buddies!!!????" It was like a switch went on. She suddenly realized we were not here for the reason she wanted to be there for, nor the reason we are usually there.

Because she was hurting herself and attempting to hurt others I had to grab her and wrestle with her in order to hold her tight and try to give some sensory input to try to calm her down.

That takes a LOT of strength.

She's only 6.

She is still very strong.

Heaven help me when she is 16.

Well, this isn't the first time I have had to do this with one of my kids. Sad to say. But, honestly, it is part of our lives.


We wrestle for sensory input that gets them absolutely giggling.

And sometimes we wrestle just to get them under control.

Poor things.

I feel so sorry for them that they have no way of calming themselves. It's really quite a sad thing to watch. You have to become numb to it as a parent of children with these types of special needs. Sometimes, though, even being numb still lets the tears well up in your eyes.

That night my stomach really started hurting. It had a hurt a bit the day before but, I just thought I ate too much (tee hee). But that night, after mine and Sister's wrestling match, I really hurt and I felt a bump above my belly button.

I love GOOGLE.

I typed in, "bulge above belly button" and got all kinds of answers.

Then I went to the doctor the next day.

And GOOGLE was right. I have a hernia.

The doctor asked if I have a strenuous job or lift things a lot...

 "I'm a mom of 3 children with Fragile X Syndrome."

In a perfect world that's all I would have to say and the doctor would have nodded her head and said, "Oh, ya, 'nuff said."

So I'll go have the general surgeon the doctor recommended tell me what he thinks the solution will be.

I have to wait for Monday for that.

They said no lifting or strenuous work til they can decide what I need to do...

again, I have to say,

"I'm a mom of 3 children with Fragile X Syndrome..."

Wednesday, April 18, 2012

Fire and Mud

Did I ever mention that our new house has a fireplace?

A real, log, fire place.

That, along with his stage, has been one the things that Brother has been the most excited about.

My sister, Kirsten, and her family were able to be a part of our inaugural fireplace fire.

We even roasted marshmallows.

Brother was as happy as a lark... wait... are larks happy by the fire?

Hmmm... let's see... he was as happy as a pig in a blanket... tee hee... whatever... anyway...

I have NO idea why white seems to be the color of choice these days.

Bedrooms, living rooms, kitchens, clothes... everything!

Do these people have children?

White around my house is just for the toilet paper and socks.

But, Baby has a white pair of pants that were passed down to her. I finally decided to put them on her.

They were clean all day.

Until Marc said, "Hey, honey, can you check on [Baby]? She's outside."

He's says this so calmly as if she were wearing blue jeans.

It's been raining.

We have dirt.

Lots of dirt.

Dirt and rain make mud.

White and mud are not good.

Oh, well, at least she had fun.

My mom even came for a surprise visit and was able to "rescue" her from the mud.

Monday, April 16, 2012

My Fragile X Family Tree

So, here's how it goes.

I passed the fully mutated gene for Fragile  X to all three of my children.

My dad passed the carrier gene to all 3 of his daughters (me and my two sisters).
We know this because my dad was tested back in 2006.

My dad's mom (my grandma) passed the carrier gene to my dad.
We know this because only she could have passed on the affected X because my grandpa could only pass on his Y chromosome.

So, who passed it on to my grandma?

We don't know.

What we did find out a few years ago, though, was that my grandma had a sister who had grandchildren who had Fragile X.

And then that's all I heard. I thought they were out of state some where because I never heard anything else about them or knew how to connect with them so I just assumed they were out of reach or whatever.

Last year I contacted the National Fragile X Foundation in order to get  in contact with more families here in my state.

I ended up with only 5 more families in our Association, but I was excited to have new people and glad to hear that some of them were so willing and anxious to volunteer their time to help out in the Association here.

I have tried to stay in contact with the 4 other ladies who have volunteered their time to help out and try to send out emails and e-newseltters to all the members of our local Association.

My grandma died last year.

She never really wanted to talk about Fragile X.

So I didn't talk to her about it.

Her sister died recently and my mom and dad attended her funeral last week.

While at the funeral my mom observed a child there that reminded her so much of Sister.

Knowing that she had heard that my grandma's sister had grandchildren with Fragile X she felt safe in approaching the parents of this child and bringing up the fact that she had heard about Fragile X in this family and asked them if their son had Fragile X. The parents replied that he indeed had Fragile X and that this mother also had a sister who had two children with Fragile X! My mom got all excited and wanted to share my information with them, not only because we are second cousins, but because she thought that with me being over the local Fragile X Association that I could get them involved. As my mom began sharing my name and information one of the girls was surprised to say that she already new of me, had my email, number and checked my blog often!


Turns out that she was one of the new contacts that I was able to connect with through the help of the National Fragile X Association!

The mother I had been talking to all this time was actually my second cousin.

We share the same genes.

I felt like the experience had just come out of a chapter from The Oak Leaves (a fictional novel about a mother who find out about Fragile X running in her family by reading old journals--it's a great read).

I am so excited to be able to talk to these two mothers, who just happen to be also be my second cousins and really delve into family history and experiences with their children and see how much we are alike not only because of the Fragile X gene but our family genes that we share.

Will they know who passed it on to their grandma and mine?

I don't really know how to explain my excitement, totally. I think it is just because I feel a connection to these ladies on an even deeper level because they are my family.

We found each other!

Saturday, April 14, 2012

Versatile and Very Valuable Volunteers

There's no way to butter it...

being a parent is tough.

Rewarding, but tough.

No matter how well our life is going in our new home and environment there are still the everyday challenges of raising 3 children who have mental impairment, major anxiety, autistic-like behaviors, and sensory input needs.

It is a constant thing.

We have days when all that is a little less and those are the "good" days.

We have days when all that is intensified to the max and those are the really "awful" days.

But, no matter what day it is like the parenting of mentally and emotionally challenged children is very wearing.

It wears on our nerves, our emotions, our heartstrings, and...

our marriage.

So, thankfully, we have life-saving programs like Friday's Kids organized to give parents of special needs children a night out, twice a month, guilt free.

The people who take care of our children for the 3 and half hour block are not paid.

They are volunteers.

And it's not just a GREAT thing for us as parents, but our children LOVE it so much.

It is a time for them to have complete fun with each other, other children and with the volunteers who are so excited to be there to play and learn with our children.

Last night was the first time in a month that we have had the opportunity to have respite care with Friday's Kids since our kids have been sick with colds for a while.

I try to have a sense of humor when I give the run-down of what to expect from our kids while they are caring for them:

"Brother is pretty defiant and very teenager-like so be prepared to be told "no" a lot and have him run from you often, or scream loudly."

"Sister may blow her nose at you if she is mad or frustrated or possibly throw something at you."

"Baby may bite, pull hair or pull your face off, but other than that she's sweet."

They laugh and I laugh and then walk away hoping they don't actually have to experience any of that but at least they have been warned. (smile)

Marc and I had so much fun reconnecting over dinner and just enjoying a meal without having to stop every 30 seconds to address sensory or anxiety needs of 3 different children throughout the course of a meal. Not only did I actually get to eat my meal before it was cold (as all mom's out there can relate) but Marc and I were able to look into each others eyes and talk about our likes and dislikes, what we enjoy about our new home and town and whatever else came up and we didn't get bit, tugged, or squeezed the whole time we were together.

Then we pick up the kids. The volunteers inform us that they did so well and the kids are just ecstatic and excited to tell us all about how much fun they had, what they did, how cool their buddies were and the 5 princesses that came.

5 princesses...

now that was new.

"Sister, what princesses? Did you play princess?" we ask.

"I saw Belle! And Sleeping Beauty! They were so pretty, Rachael! (That's what she calls me)"

Then the kids' volunteers volunteered the information that there were some city royalty who were all dressed up as the Disney princess and they just volunteered to show up at the Friday's Kids and bring some joy to the kids.

Brother was so excited to inform me that there was also Pocahontas, Jasmine and Snow White.

I am hoping someone got pictures that I will some how be able to get.

It is the next morning and Sister is STILL talking about it! She even pulled out the princess coloring pages she has so that she could show me which ones came last night and which ones were her favorites.

I had no idea that something like that would be so exciting for Sister.

My heart is so grateful to those 5 girls who decided to dress up and cheer up some children they didn't even know.

My heart is so humbled by the time that so many people are willing to volunteer their time on a Friday night to be with children they don't even know or have any connection to so that I can have needed time with my husband. The volunteers I have met have ranged from young high school kids, college students, young married couples without children and older retired couples who come in to spend time with my kids and others like them.

My heart is warmed to know that so many people out there are so loving and understanding of people who have challenges different from theirs and the acceptance that allows them to make new friends with complete strangers.

Thank you to all those strangers, friends and family who have volunteered their time and are willing to be versatile to all our children's needs and interests.

You are all angels.

Thursday, April 12, 2012

Easter Eggs and a Birthday Blowout

 I don't know how long it has been tradition in our family but, we have had Easter Hunts at Jessie's house for, at least, 8 years now... maybe even more.

It's always fun. We eat. Talk. Laugh. Stuff Easter eggs full of candy we all brought. Laugh some more reminiscing of times before... sweet tarts and balloons always bring us a good laugh... Then the adults go hide eggs while the kids try to peek through the windows.

I thought I was so clever "planting" the suckers in the grass.

I was so excited when I saw Baby running for the eggs...

Then I realized she was running for me, hence my out of focus surprise... 

Sister was having a blast, I have to laugh at all the adults, though, standing around... there is candy out here, people!

Brother was very happy to collect the eggs but, was sorely disappointed when he went inside to inspect them and saw there were no sweet tarts. (Luckily the Easter Bunny brought them on Easter morning)

Baby was running around like this the whole time, no basket, just a sucker in her mouth while she ran around following the other kids (smile)

My Dad was having a little trouble getting this egg out of its hiding place after he and I raced to see who could get it first... I let him dig for it...

Then he happily surrendered it to me
I told him to put it in Sister's basket, she was pretty happy about that idea.

Uncle Jeff is helping the kids check out their stash
LittleB is making sure it's all there

Mmmm. Sunshine and candy.

Millie with Chelsea behind, camera ready 

This reminded me of an old lady planting in her garden and I just had to take a pic.

Ya-ya and her mommy

hoola-hoops and Easter, reminds me of childhood 
MrT was pretty excited about the stash he had in his basket. 
Then we celebrated my dad's 58th birthday!!!

My mom made strawberry shortcake with candles for him to blow out.

Brother LOVES to blow out candles. He used to blow out other people's candles for their birthdays all the time but, as of late, he hasn't done it, to all our surprise. It was weird to not have him steal the spotlight right as the birthday person was about to blow out their candles and make a wish. He would sneakily swoop in and blow out the flames.

We thought he was done with all that.

Until we lit my dad's candles and started the traditional tune.

This picture was actually taken on Brother's second attempt at lit candles.

Check out my dad trying to hurry and huff them out before Brother could.
My mom trying to block the oncoming "wind."
And the hand trying to keep Brother from doing it a second time.

We gave my dad a "pose" re-take just for fun. He really got into it...

I love you dad! Happy Birthday!

Wednesday, April 11, 2012

Just Pictures...

because a picture is worth a thousand words and I only have time to type up a few (smile)

contemplating what to draw next

Marc had fun pruning our apple trees

yep, she's wearing MY rollerblades and she's holding onto the mailbox for dear life...


I love it when he wants to pose for the camera

my big rollerblades make her skinny legs look even skinnier... tee hee!

that's right

Bryan and Marc on the cruisers
Baby and Sister just couldn't get enough of Bryan

The last few pictures were from Easter Sunday. I am excited to show you the Easter Hunt pictures from my sister's house. Sorry, I guess I am working backwards.