Time Magazine goes Fragile Xing!

Like others, I want to add the link to the Time Magazine article. I don't think I've ever read a Fragile X article in a mainstream magazine that was so detailed! Hopefully, one less person will say, "What's that?"

woo hoo!!!

A New Journey

On Tuesday evening, I received the phone call I had been waiting for. I got a fourth grade teaching position! So many emotions are running through me, which is probably part of the reason it has taken this long to write about it. And now that I'm typing, I still can't come up with the words to describe it. I feel like I've been given an opportunity to have a positive impact on many lives. Wow.

In two weeks, I start teaching summer school (1st grade); that last for four weeks. I will then have two weeks before I meet the students I will be spending several months with. Again, wow.

~A little history~ I didn't go to college after high school; I had a short stint in the A.F. Marriage and children were soon after. When the older three were younger, I was a stay at home mom. When Kyle was 7 months old and Chelsey was 2 and 1/2, I started taking care (8-9 hours a day, 5 days a week) of sisters that were the same age as Chelsey and Kyle. This lasted for a couple of years, and I then took care of a little boy that was Kyle's age. Having other children around for Kyle, and eventually Matt, was a good thing. They learned so much about playing "make believe." I know, such a basic thing to learn. Chelsey and the other little girl were masters of it!

At some point, I started waiting tables part-time in the evenings. This ensured that either John or I would be there for the kids (occasionally Mom would come to the rescue when our schedules overlapped a little). I remember when I first started, it wasn't like going to work.... I felt like I was going on a vacation! After all the kids were all in school, I worked even more, days and evenings.

Then, in Dec. of 99, one of the waitresses I had worked with told me about a job she had tried but just couldn't do. There was a little boy in kindergarten who had autistic type characteristics, but at this point, the testing process had just begun. Let's just say that he wasn't handling kindergarten social skills very well. I practically fell in love with him before I even met him. I worked with him until half way through 2nd grade. It was then, January of 2003, that I started taking classes at an IU campus about 45 minutes from our home. I finished in December of 2006. Sounds easy enough, right? Well, in August (maybe September) of 2005, I found out I was pregnant. That semester, I had a very full schedule, including an accelerated class that was from, like, 5:45-10:00 p.m., once a week for 6 weeks! It was at the beginning of the pregnancy, and I was so tired. The second semester was a doozy too because in my schedule was an evening class that met two nights a week; it was an micro-economics class that I was taking because I wasn't going to be able to take the one that they offer to education majors. The education one was a two week class that started in mid-may.....Evan was due May 17. Classes were over the first week of May, and Evan was born May 23.

I still had one thing left to do---my student teaching. I debated (and cried a lot) about waiting another semester before doing it. I came to the conclusion, though, that if I didn't just get it done, I may never get it done. So there I was, bringing my Medela pump to school so that I could continue to breastfeed. What a journey! I was extremely fortunate to have a wonderful teacher to work with. She was understanding and helped me through the semester. It could have been disastrous had I ended up with a teacher that wasn't so kind. AND, I also couldn't have done it if I didn't have my mom close by to watch Evan. There is no way I could have trusted someone else to take care of him.

I graduated in December of 2006, but I was in no hurry to find a job. I didn't send out my resumes until June, which resulted in me not getting a job. Then in August, when I was registering the kids for school, I heard that there was an opening for a paraprofessional in the Lifeskills class (moderate and severe disabilities). I got that job; what an awesome experience! I'm going to miss those kids next year---I'm going to be in our other elementary school.

NOW, the search for someone to care for Evan begins............that's another story.....

~~~~~~~~~~~~~

~~~~~~~~~~~~~

**Update on Matt's shirt**

I finally fixed Matt's shirt yesterday morning. With a reserved smile, he said, "That was fast. You don't have to be that fast."

Uh, let's see. He was reminding me almost every hour. Yes, I had to be that fast.

~~

More from Matt--We were driving home yesterday and passed someone with a cute bear costume (advertising). The bear was waving, and as we passed, he gave us the thumbs up. Matt, who was quite visibly sitting in the front seat, gave him a very visible thumbs down. He then said very casually, "If he wants to wrestle, I'll take him down!" So brave from far away. If we were to get out of the van, he wouldn't go anywhere near that bear!

Ahhhh

My blog is acting weird.....can't add a link in my text....can't choose alignment.....can't choose color from post page----the color I normally use wasn't on the formatting page.......I checked editing on my older posts and there are,like, computer commands or something along with my words......I think it may have something to do with when I put the utube thing on---Chelsey helped me, and it was saying we couldn't do something, she said we could, it worked, so I thought, 'Oh, I guess we can do it that way'......oh no..........help

**Update......so soon......I figured it out......oh what a relief.......my day can go on now......LOL**

Evan and his diapers, Matt and his shirt

A few weeks ago, I had a post about Evan taking off his diapers, and I was given a couple of great ideas. First, I bought some pajamas from the Children's Place. They are long-sleeve and have the feet things (which I normally don't like), but they are cotton and lightweight. They worked great! He couldn't get them unzipped. I'm not using them now because the weather is warmer. I also bought a couple of diaper covers that are meant for cloth diapers. They are wonderful! I can let him run around the house in just a t-shirt and diaper with cover.

So, now at night, he usually sleeps in a onesie and long pajama pants. I had been using the diaper covers with those, and things were great. Well, for the past few nights, I haven't put the diaper cover on, and he hadn't been taking his diaper off. I thought, 'Hmmm, he's forgotten that he can get at the diaper through his onesie.' That changed tonight. He was up for a while playing in his crib, and then he started to call out. I went in and hugged him, and changed his diaper even though it was only a little wet. I then went to take a shower. When I came down, John was holding him and said that he and his sheets were soaked. Back to the covers!

****New thing he's doing...he spins a couple times around; will repeat when we say, "Spin, spin, spin!"

~~~~~~~~~~~~~

~~~~~~~~~~~~~

Last night, Matt noticed a small hole in his NASCAR shirt (where the sleeve meets the body of the shirt). He pointed it out several times, and I repeated several times that I would fix it "tomorrow." He said, "You don't have a sewing machine, do you." I told him it was in the closet. That's his usual way of asking a question---starts off with "You don't," or some negative statement and ends with "do you," and it usually sounds more like a statement than a question. Finally, he took it off and was a bit frustrated with me, and he said that he was never wearing it again. I reminded him that I would fix it in the morning. Sooo, when I got up this morning, he was already in the living room. My eyes were barely open, and the first words out of his mouth were, "You don't know where that sewing machine is in your closet, do you."

Somewhere Over the Rainbow / What a Wonderful World

just because

Boomerang sealed the deal

We are soon having the closing on the house we will be moving to. I'm fairly certain it's a good thing, but, after living in this house for 14 years, there is a little sadness. But I'll handle it okay. Acquiring this house, which was a repo, has been quite a long process. That's a good thing because it has given the boys plenty of time to get used to the idea. It also helps that we've gone to visit the house (we have the garage door opener).

Kyle, though, at times was still making comments, kind of to himself, such as, "We're not moving to that house, are we?" Matt sees it as kind of an adventure, I think. At one time, he talked about assigning room numbers to the bedrooms. That probably comes from their desire to stay at hotels. We don't do a lot of traveling, but as they have gotten older, staying at hotels is like a big treat for them! Traveling back from our last vacation, we stayed at one hotel. The boys thought it was funny because we had connecting rooms, one for the "men" and one for the "ladies" (and Evan), there was a pool, and we had pizza delivered (very good pizza). For the longest time after that, anytime we passed a hotel, Kyle would say, "We've never stayed at the hotel before," in a manner that was hinting that we should.

ANYWAY, yesterday, any fears or reservations the boys had about moving were washed away. John made some calls yesterday concerning having the phone, DSL, and satellite dish services transferred. When talking to the DISH people, he learned that we could get 50 more channels for 5 dollars more a month. Now, I know, we really don't need 50 more channels. But there is something special to the extra 50.

Occasionally, DISH Network gives us a week or two of free viewing of a channel. One channel that they have given to us twice is Boomerang. That's a cartoon channel that has a lot of older cartoons....Flintstones, Jetsons, Top Cat, Penelope Pitstop (I had never heard of that show before until Kyle introduced it to me---the main character has red hair; Kyle likes cartoon characters with red hair :-), and many others. Kyle fell in love with the channel. It's probably been about six months since we've had it, but approx. 5 times a week, Kyle will say with much expression and hands clenched, "We need to get that Boomerang channel back!"

The boys were told last night that the new house would have Boomerang. The smile on Kyle's face and his excitement were priceless, like he was the luckiest man alive. Matt was taking it all in, happy, but he really doesn't have much interest in that channel. When we got online to see what other channels we would be getting, (John had already learned over the phone that he would be getting the Golf Channel...I think THAT is what sealed the deal), Matt was standing next to me with a piece of paper in his hand---quite common for him. He casually showed me the paper. On it, was a channel number along with the words "Legends of the Hidden Temple." That was his subtle way of asking if we were getting the channel that had that show. It's on a Nickelodeon channel...like a kids' sporting channel; he likes shows with competition (he would have been my little athlete). Yes, we're getting that one too.

So, to sum up a long story, the men are all excited about their new channels, and it looks like it will make the move to the new house go smoothly!

My excitement about moving?? The backyard! There is a wonderful, mostly private, backyard! And yes, the boys will be enjoying the yard with me....after about a week or two. That's probably how long the excitement of having the new channels will last!

Awesome Fridge Magnets

Evan has somewhat of an obsession with letters. His favorite show right now is "Super Why" on PBS. I bought this Fridge Phonics (Leap Frog) for him for his birthday; he loves it! The base and the 26 letters are magnetic. When a letter is put into the base, a jingle saying the letter's name and sound is played. For example, "B!, b says 'b,' b says 'b,' every letter makes a sound, b says 'b.' (Yes, I've started to randomly sing the songs throughout the day). For some of the letters, it says 2 of the sounds the letter makes. If the music note is pushed, it sings the alphabet. I only leave a few of the letters within his reach. If he has access to all of them, he feels the need to throw them all on the floor :) It's definitely not like the letter magnets I had as a kid!

Thoughts

I'm writing this entry after reading fragilemom's post. I started to leave a comment, but then I realized it was getting a little lengthy.

As much as I miss my babies being little, I wouldn't want to go back to that time period----I was somewhat of an emotional wreck. People would often say, "I don't know how you do it," etc., and in my mind, I'm thinking, 'You don't understand, I'm falling apart inside.' I think I did a good job with the boys, but I felt so alone in the Fragile X world. Part of that may have been my fault; there are two other families in this area who I know whose children have FX. Although there is one mom that I talk to occasionally because her son is just a couple years older than Kyle, the other family, who believe it or not, lives two streets up from us----not even a 1/4 of a mile---I've had very little contact with. Their 3 children, all affected, finished high school not too long ago.

Anyway, I think some close family members knew how much I was hurting (especially Mom, who got many phone calls with me crying), but I'm not sure if others knew. I used to pray as hard as I could to God to make my boys wake up the next morning and be "normal." Seems kind of silly now. I would sometimes crumple to the floor in tears. It was so painful---literally. I ended up developing IBS. They ran every test for the symptom of "extreme pain in my intestinal area, with 'interesting' bowel movements." When everything came back negative (thankfully), the diagnosis of IBS was given. Metamucil for a year and learning to relax did wonders. There was one spot in particular that hurt a lot. Now, when I start to stress too much, I sometimes can feel the pain starting. It's the signal to "stop worrying."

I honestly don't cry anymore about Matt and Kyle's diagnosis. Okay, well, actually, there was a mother's day commercial that made me tear up a little. It showed scenes of different people saying "mom." The last scene was of a young father with his wife in the hospital holding their new baby. The father was on the phone with his mother, and with pride and love in his voice, he said, "Mom." The thought that I won't be getting that phone call.....but I was over it almost as soon as the commercial ended (until the next time I saw it). That's not to say that in a few years, when the transition to adulthood hits us, emotions won't be stirred up again. I guess that right now, they're happy, they're funny, I don't worry all the time because of them having a driver's license (like I do with Chelsey), no drug worries, no girlfriend worries---basically, none of the usual teenage worries. Yes, I feel badly that they aren't involved in things such as high school sports like I was, and that they're missing out on the social aspect of being a teenager, but that's my problem. Also, dealing with making sure their educational needs are met can be a headache at times, but we're doing okay.

It's hard to even imagine the older boys being without FX. If I try hard enough, I probably could, but I don't let myself go there. Now with Evan, he's a different story. I only had a day and a half of painful crying after his diagnosis. It's more of a feeling of frustration with him because I have the thought of 'I just as easily could have had a child without the gene...50-50, right? WHY is this happening to another child!!??' But, I don't know what the future holds for him, so I try not to worry too much.

Okay, that's not to say that I don't have my down days---days where I feel like I wander around the house accomplishing absolutely nothing. But, I'm not sure I can blame my "feeling down" on my kids having Fragile X. If my kids weren't affected, would I still have those days? I don't know. I frequently remind myself that this is the only life I'm going to have here on earth; I really need to try to enjoy it. It works------most of the time.

Yummy Pie

This is the pie that I made the other night....Strawberry-Banana Cream Pie. I use the directions for "Dream Pie" that's on the Dream Whip box and add 2 bananas and approx. 8 strawberries. Oh, and I use a graham cracker crust. It calls for 2 boxes of pudding. This time, I used Cheesecake flavor, but I've used White Chocolate, Vanilla, Banana Cream, and Chocolate in the past. Yum! It's one of John's favorites.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

SUMMER FUN!

Matt

Evan thoroughly enjoys watching Kyle and Matt go under water. He tries putting his face in, but he ends up with a mouthful of water.

Kyle

Loves the water!

This & That and an Anniversary!

Ninth day of an ear infection! Although the pain has subsided, the discomfort of having an ear clogged is still there. I'm waiting, patiently.

Evan has story time today at the library. Last week went so-so; he listened to the stories while standing on my lap, ate the snack, but wanted nothing to do with craft time.

I had an interview last week for a teaching position at one of the schools here in town. I get so nervous during interviews! When it's all done, I have those thoughts of, "I should have said," and "I shouldn't have said." I have another interview Thursday for another school here. I'm hoping to correct all the mistakes I felt that I made last week.

We should be having the closing for the house we are moving to within the next two weeks. It's scary; we haven't sold this house yet! The house we are moving to was just too good of a deal to pass up---we had to act fast---but because it was a foreclosure, we couldn't do a contingency loan. We may need to borrow from his 401k to make this work. Ugh.

Chelsey and I spent the night at IWU on Friday....the night the storms hit. She ended up in a dorm without electricity. They had moved some of the people from that dorm, but somehow, she missed that. She had no way of contacting me in another dorm because for some reason, her cell phone didn't have service (mine did). Saturday was an informative day, and it was nice being able to get a feel for the place where my daughter will be living. It's a very beautiful place in many ways.

On the way home (a little more than an hour long drive), the rain hit again. We went through more rivers----I mean puddles----than I could count. We came up on one of the first ones we hit very unexpectedly; I didn't have much time to slow down, and there was a car coming from the other direction. So scary--the water on the windshield blinded the view for a few seconds. It took a while for my heart to return to a somewhat normal rhythm. And just when we got back to our town, the police turned us around due to high water. We had to back-track, tried another road that was like a river, turned around again until we were able to get to the road that runs parallel to the first. It was bad in many spots also, but doable. Just as we were nearing the end of the road, we came upon the worst spot, and some people were turning around, but I saw people making it through, so we did too!

I'm not complaining. Here in north central Indiana is nothing compared to what is happening south of us. I'm thankful.

Kyle and Matt are enjoying their summer---swimming and Playstation 2. They got a new game this past weekend----Indiana Jones Lego (or something like that).

Oh yeah, today is John's and my wedding anniversary! Yay! 19 years. As far as I know, there aren't any big plans. I'll probably make a dessert, and maybe we'll go out for a quick bite to eat.

wedding/honeymoon in the Poconos

A few years and a few kids later, but a few years ago! (and yes, he learned from this picture that he can't wear a hat all the time when he is outside!)