Day 2...Kid Update

Two days in a row...so far, so good.

This is more of a kid update. We started Benjamin on folic acid therapy recently. He's been gaining some words here and there, so I was hoping by starting it, maybe he would soon start putting 2 words together...if he responds the way we've seen Ian respond to it. He was so cute the other day because he imitated what he always hears Ian say after a video has stopped..."uh-oh, stopped!" So cute! I also just got loaned to me an auditory device from our early childhood intervention program. Or maybe it's called augmentory...not sure. Anyway, it's suppose to help with language by having him work on making a choice between 2 items, push the button with the picture of his choice, and hearing the item (plus, we'll add the word "please" to make it 2 words). Goal is that since he's a good imitator, he'll start to imitate what he hears on the device.

Benjamin has also the process to begin the PPCD program (same program Ian started in) at school. As I look at Benjamin, it's so hard for me to imagine Ian that little starting school (Pre-K). As soon as he turns 3 in April, he can start the program. We're so excited to be able to be working with the same teacher Ian had for 3 years. She's just wonderful. And, of course, there's a lot of nervousness because Benjamin and Ian are so different. But I've no doubt it'll be great for him.

Avery is just doing wonderfully....well, if you take out the huge amount of 'attitude' she's gained. :) I was so proud because her Pre-K sent home a note letting us know the kids will be working on learning their phone number....Avery already knows hers, and her address. Hopefully she'll 'show off' her knowledge instead of being shy and acting like she doesn't know it. She's been such a good big and little sister to the boys. She's so loving and caring toward them (when they're not fighting of course). Her and Benjamin are best buds.

Ian is doing great in school. We started working on recognizing numbers at home. I figured out that he can count really well, but he can't recognize that a written number actually stands for something. So, we've been working on the #1 for a couple of weeks now. I made this huge #1 and put it on the wall. Then I spelled the word out and put 1 dinosaur with it. Everyday we would go over it. Everyday he would say every other number but 1. We had a breakthrough 2 days ago! He only called it a 4 before then calling it a 1. I was sooooo proud!

We went to the neurologist a few weeks ago (which is always a waste of my time...gotta find a new one). I told him we would like to switch him off the guanfacine and back to clonodine. Of course, he didn't argue with me (since I know more than him in this area). We think it has helped him out at school by taking partial dose in the morning, then another 4-5 hours later. We've loved it at night because he's practically back to wanting to put himself to bed.

Once again, I'd better end before you decide to quit reading!

New Attempt

Okay, I've been out of the loop for a long time now. Thanks to encouragement from my friend Kathie, I'm ready to start making time for this again. So much going on. Bummer is, with such an open blog, I don't feel safe to post some of it. So, those thoughts and feelings stay to myself...and privied friends.

So, I went scrapbooking this past weekend to the same place I blogged about back several months ago. My friend, Jill, did a wonderful job organizing it, as usual. This group of women was competely different from the usual twice a year crew. Both are unique and fun and great in their own ways. This happened to be a group of 10 others, most of whom I knew the names, but didn't know personally, or barely knew. They happened to be a group I've highly admired for their servant hearts and uncompromising godly characters. So, I felt a bit intimidated going in. Everyone, including myself, was so incredibly blessed by the time we spent with each other. Lots of fun, fellowship, meaningful conversation and just plain silliness. Did I get much done? Ummm, no, but that's okay. I'll be going again in April. Maybe I'll catch up then.

Next thing: My niece (the 20 year old that got married last year and was diagnosed as a carrier) just had her baby this morning at 12:20am. She had a baby girl and named her Adelin Sage (not sure how to spell either). I can't wait to see her.

Next: Ian's program coordinator asked Jim today if we thought we might want to keep Ian in kindergarten another year. AMEN! That's exactly what we were going to ask for.

Next: Our family is transitioning to a new church that has (so far from what we've seen) an incredible special needs program called Special by Design. Although we adore our previous church, we have noticed that we have been so 'overwhelmed' by life that other than attending church on Sundays, we have not sought out ways to serve or fellowship. Even with our homegroup, we started alternating each week between the 2 of us because it gets hard on the kids. So, we heard about the caring SN support at this church, decided to attend, and are now looking for ways to serve to see if the Lord leads us to stay.

I think if I don't end now, this might end up being way to long for my jump back in. So ta-ta for now.

What We Believe

A few weeks ago, Kristie at Life with My X Men posted an entry - religious training and fragile x. I was going to comment on it, but found my comment to be too long and decided to make an entry out of it. My goal is not to offend anyone, but if I do I cannot apologize for it. This is what we believe in our family. And, let me add, I am in no way saying we have all this figured out or that we do it right all the time, but we sure give it a good hidy-ho effort every day. We also are always ready to receive wise guidance from others who believe the same as we do about our Christian doctrines, faith and beliefs as they relate to everyday life.

In our opinion, raising our children to love and have a relationship with Jesus Christ is both the most wonderful and frightening privilege given to us. How on earth do we pass this along to our children.....who currently (1) are very young and (2) do not have the ability to understand things in the same way as typical kids? Well, we figure we do it in exactly the same way we would if they were 'typical'! We lead by example. No, we don't always manage to display the example we would like, but we sure try. When we fail (like totally, totally lose our cool with them, or spank out of anger, etc), we try to chalk it up to what NOT to do instead of beat ourselves up night and day over it. God's grace IS sufficient to gird us up for the next challenge, which is usually just right around the corner. :)

My biggest fears when we got our first diagnosis, and each one after, was "Will they learn to love, and will they know our love and the love of Christ who formed them? Will they ever be able to understand what it means to have a saving relationship with Him?" I cried lots over this. I sometimes still do. But God is so good. He shows me in ways only He could that He is really in charge of it all. I do my part, He promises to do His. So, I cherish the times I watch my kids in front of a Mercy Me DVD dancing up a storm, arms raised, and voices singing and saying things like God is good. It warms my heart when Avery does it, but it runs even deeper when Ian does it. He'll raise his hands and close his eyes. It's just beautiful! And it warms my heart that they enjoy going to Sunday school each week.

With Ian, because of some his difficulties in school, every morning we try to talk about how God made his hands to be nice and his mouth to say nice words. When we see him hit, push, pull hair or say 'stupid', we remind him of these. And we ask him, "Ian what did God make your hands for? Ian, what did God make your mouth for?" That way when he answers, we know he was paying attention. :) Just tonight he was imitating me as I got down on my knees, palms lifted, singing. OMG! And just imagine...if it's that adorable and heart-warming to me, how much more is it to the Lord's!!!! So, although I know that he does not fully understand everything, I do believe with all my heart he will...in the way he can. I believe the Lord really, really wants to be sure I know that

Avery doesn't understand everything yet either, which is fully understandable at her age. But, she is further along in understanding than Ian. She asks questions, likes to pray, and thanks God for EVERYTHING when she prays. She also tells Ian when he's done something that may have made God's heart sad. We've started praying together for her classmates that weren't at school that day because they were sick. One of them was on a trip so Avery wanted to pray that she would be safe. She once made a comment like "God is not real", which brings up really good conversation. Of course it's hard for her to understand when she can't see Him. It's hard for most of us a lot of the time, and she's only 4. We let her know He is real and lives in her heart. Yeah, try to get a 4 year old to understand that. But right now that's one thing we'll keep saying, even though she doesn't understand it yet.

We make sure we don't 'shove' things down their throats or tell them a bunch of heavy stuff they could not understand at this point, like why people die, why bad things happen, how Jesus could actually take care of all of our sins, how He could be everywhere at once, knows all things, etc. Instead we just set the best example we can, and hopefully they will continue on the path they are and will ask more questions as they get older. Then we will know they will be ready to know more. Right now, we let them know what pleases God, what breaks His heart, and that Jesus loves them soooooo much. We believe in 'teachable moments' and look for them all we can.

So, yes, I am a firm believer that fragile x'ers, and all other SN kiddos can know and love Christ and learn what it means to walk with Him. It may or may not look different, but God speaks to their hearts just as much as ours. I will never let anyone lead be to believe otherwise.

Anniversary Trip

This is Jim's face right before he's getting ready to color my hair.

This was a really cool spider that wouldn't let us take it's picture. It kept coming up as this bright light. Pretty clever guy.

"I think we're lost?" "Which way do we go?"

Self pic before our hike.

"Roses in our Garden" Jim's anniversary gift to me to add to my Willow Tree collection.

We just got back from a long wonderful weekend away for our 10th anniversary. We went to an incredible resort in the Ouachita National Forest and Lake area in Arkansas, and it was great. We're already planning to go again with some friends. It was relaxing to be kidless for 4 days. We had great family (thanks Tallmans) and friends (thanks Williams) taking excellent care of our children while we were gone.

We had planned to hike, play tennis (not that either of us play), relax at the spa, go boating to our own island. However, our plans changed a bit due to weather, missing equipment, and an extra long hike. But, no loss. I loved the weather! It was nice and cool, rained a little, and overcast. No humidity! That was the best. That's relaxing weather for me, especially for fall. And let's not forget to mention the beautiful colors! We also met some really fun people.

We left Thursday night, stayed in a hotel along the way; got up the next morning and headed to check-in at the resort. We got there earlier Friday than we thought we would, but thank goodness our room was ready for us to check in. After check-in, we drove into town for a few necessities and checked out town. Then we checked out the resort area. Then, we just sat in our condo and enjoyed....dare I say it.....SILENCE! Ahhhhh! And we enjoyed a wonderful seafood meal cooked by my chef of a husband. Yum!

Saturday, I slept in. Jim has a hard time sleeping in, poor guy. After going back into town to pick up items we should have gotten on our first run, we decided to check out a part of the Vista Ridge trail. We hiked 4 miles. On this part of the trail, we were passed by lots of mountain bikers who were participating in an adventure race that was going on the same weekend. They all looked really tired. We found out later after talking to the coordinator of the race, that the biking part was the last part of the race. Before that, they had been running, canoeing, and hiking off trail with only a compass and map. The entirety of the race was anywhere from 8 to 14 hours.

After getting back to the condo, I enjoyed a nice hot bath (which I don't generally get to enjoy at home). Then we went to the resort restaurant and enjoyed a yummy steak dinner. Then back to the condo for a movie. And I talked Jim into coloring my hair. Never done that before. He's was quite funny.

Sunday morning we got up, ready for our longer hike. This hike ended up being 3.5 miles/2 hours longer than we planned, due to someone's error in reading the map (and can I say, it WASN'T me...miracle). Neither of us cared much though. We actually got quite a good laugh from it. The end result....13 miles of hiking beautiful forest and streams. It's a good thing (1) we packed our good hiking boots for the trip, (2) I didn't sleep in that morning and got a good start time, (3) we packed plenty of power bars and water in the backpack. Our feet were barking at the end. When we got back, I took another nice hot bath. Jim was so hungry he cooked while I bathed. (Yes, I do actually cook for our family. Jim likes to do the cooking on vacation....and I don't argue). So, we enjoyed another of his wonderful meals. Then, because we're both football fans, we watched the Sunday night football game.

Monday morning, we got up, bodies screaming. Poor Jim had blisters on his feet. I went down to the spa for a massage, only to find out they didn't have any openings until 3:00pm.....we had to check out by 11:00am. Lesson learned.....make reservations. So, we packed up, turned in our tennis raquets and keys, loaded up the van (along with the boat we'll use next time as well), and headed home. The kids were great when we picked them up and were great the rest of the night. That made it a nice transition back into the swing of things. Oh how we never take advantage of our time away!

hmmm, busy at work??????

Yep, he's mine. All I can say is.....don't ask. :) Gotta love this man!

Can I Start Today Over?

GRUMPY!!!!

ARG! I was supposed to be blogging on how happy I am because today is our 10 year anniversary. But nooooo, yuck had to get in the way. Instead I am super emotional (not even on my period). Jim and I got into a conversation about the schools and children, particularly the 'not typical' children. I really tried to keep my cool, but I blew it. So, you guys get to read it....remember, all raw unprocessed emotions.

So, I try to explain and bear my heart about how I feel about things like Ian getting pulled out of his class and put into a different class, about not really knowing what's going on this year, blah, blah, blah. I'm not doggin' the school. They have been very kind to us, and I feel very confident and fortunate, overall, about the care and attention Ian gets there. BUT, I also have a lot of fear. And when it hits, it hits. When I try to explain how I'm feeling to Jim, mostly I get how I need to understand how strapped the school is when it comes to our type of kids. No real programs for them, parents sueing, not enough funds for aides, etc. Well, that's all find and dandy, but what I really want to hear is, "Honey I know this is hard for you, I'm with you, and we'll do all we can for our children. Hang in there. " You know, something encouraging for ME (yep, all about me at this point). I just feel like he doesn't hear my heart. Like all his concern lies with the school. I DO know how difficult it is. I was a classroom teacher and I did have SN in my class. If anything, how would HE know! He does resource in-class support and pull-outs. He doesn't even have his own classroom full of kids all day.

So, I accused him of 'siding' with the teachers/principal and told him I would appreciate support for me because I'm sure not going to get it from anyone else. He's supposed to be there for me and the children. I'm not asking him to go out and start demanding things. I don't work that way. I'm asking him to say what I need to hear when my heart is scared and hurting. The only thing I could compare it to to help him understand (cause he still says things that lead me to believe he's not TRULY understanding what I'm trying to tell him) is a family situation. I asked him, "Okay, so what if everytime you struggled with the family member and felt beaten down, I decided to take their side and tell you that you need to understand what they're going through (which in this case would be a ridiculous statement). Would that make you feel like I was YOUR cheerleader and that I truly understood your heart? NO!"

I know he doesn't really know what to do with me when I get like this. So, I've pretty much vowed to keep it a blog thing and stop trying to get him to understand. This is just one of those times I feel completely alone. Like I'm the only one pushing to help Ian (which is not true). I just see sooooo much potential and I don't feel like he sees the same potential. Is that the hardness of the teacher these days?

I'm finding it hard to stop crying this morning. I hate to say things like, "This is my life, I have to deal with it." It is my life, but I fully expect to enjoy it and thank God for it. I was never promised an easy life and I'm okay with that. But sometimes I have a really hard time 'doing' the hard life. And I don't even have it as bad as some people I know. But I try not to compare lives. That's not what God intends for me to do. He wants me to do the life He's given me.

Okay, I think I'm done. I'm going to go spend some time with the One who really knows the details of my heart. I'm glad we're all walking this together. You help me not feel so alone. Once things process and I get to talk to Jim again (I've already emailed him to tell him I love him and I'm sorry), I'm sure I'll be put back together.

By the way, did I mention today is our 10 year anniversary!?

Weekend Away

This is my very good and most funny friend. Yes, believe it or not, she is. Why does she have a pair of scissors clipped to her nose, you ask? Well, Jill is on a diet and we happened to be baking cookies. The aroma was too much for her self-control. Her solution? You got it! She's so smart! And no, she didn't have even one cookie. At least not that I know about. :)

This is the "Texas Cabin". This is the most popular of the cabins. Jill and I stayed in it this time.

This is in the crop room. This is Jill's and my collection of paper. She came up with this great idea last time. We each layed out all our paper so that it was within easy eye view when trying to come up with layout patterns for the pictures.

The bugs and spiders were outrageous this time! Especially the daddy long-legs and these annoying tiny flying things that kept getting in our faces and then falling to their doom in scrapping glue! This was one of those particularly beautiful spiders sitting in her web. Luckily, it was outside the crop room, not inside. It is a cotton spider. When we went to pack up to leave.....she was gone. Hmmmm. Hope she didn't come home with us!

These were just a few of the pictures. The only thing I didn't take a picture of that I wish I would have was this stuffed pheasant-like bird that was in our cabin. Jill and I are notorious for playing practical jokes - mainly on each other! She has the best sense of humor. Even better, she can dish it out as well as she can take it! Anyway, this bird kept 'disappearing' and 'reappearing' in strange places in the cabin.....my bag, the shower, the toilet paper basket, the bed. It traveled quite well.

I almost got Benjamin's book done. I decided to keep up with tradition and didn't do any journaling yet. I did manage to get embellishments on some of the pages during the trip. I only have March and April of '08 left to do. Then my goal is to add embellishments and journaling to all 3 books. Then what? Hopefully cards! I would like to scrapbook some trips, but who knows.

It was a great and relaxing trip. Jill and I left home Wednesday evening, a night before the others started arriving. We got back early yesterday evening.

I did get some running in, which felt great. Except for the tiny flying bugs threatening to enter my mouth and eyes, I adore running in the country. The air is so much cleaner! Those 2 lane roads are full of hills to add to the adventure!

Although we didn't get to bed until ridiculously late, I slept great, which is rare. I only got up once each night and got 8 hours of sleep each night. Woo-hoo!

We had great music. Everything from 80's to operetic to praise and worship. We had great conversation. Everything from trips to how the Lord is working in our lives. We even stayed away from politics.....way to go, Jill! And we had a couple of nice prayer moments for things that came up.

We watched our usual couple of movies. This time we watched Ever After, Day After Tomorrow, Big Fat Greek Wedding, and Return to Me. I don't think we actually sat to watch all of any of the movies. We'd watch for a while, then it became background while we scrapped.

Jim did great! The kids got fed, bathed, and made it to and home from school. I had left a card for him to find, which blessed him. Just wanted him to know how much I love him and was thankful for this time away. And to remind him what a great dad and husband he is.

Well, I think that catches you all up on the time away. We already have our next one booked in April. Now I'm looking forward to my time away with my husband for our 10 year anniversary next week!