As the day comes to a close, I reflect once more of this date 7 years ago...the day my life and dreams changed forever....our first (of 3) diagnosis of fully mutated fragile x syndrome. To this date, I still remember it as if it were yesterday. I remember my mom in town for Mother's Day, sitting on the couch next to me when I received the phone call. I remember the confusion, the fear, the anger, the sadness, the unknown.
Now seven years and 2 more diagnoses (sp?) later, I still fight the same thoughts, but only occasionally now. Our pastor did a teaching last week about the grace of God that was fabulous. He defined the term on a whole new and more mature level than I had ever heard before. "Grace is God's empowering presence enabling you to be what God has created you to be and to do what he has created you to do." I would say this fits perfectly with how I have survived the last 7 years....His empowering presence enabling me.
I hate fragile x. There, I said it. But I love, love, love my children; every tiny ounce of them! While 'typical' families celebrate grand accomplishments because the 'little' things just happen naturally, I have learned to celebrate every accomplishment, knowing that nothing they do is to be taken for granted. I have learned that I don't have to stop and give excuses to every person that looks at me if Benjamin screams in the store or Ian decides he's going to kiss a trash can (yes, actually happened). Do I feel a bit uncomfortable? Ummm, sure. But I get over it. And I don't mean to sound rude, but if I can get over it, so can those people looking that know nothing about my child. I have learned not to 'judge' other parents when I see their child 'misbehaving' in public. To be totally honest, it kinda makes me feel more normal. :) I also have a lot more compassion for them, and if they see me looking, I just smile to let them know it's okay. There's so much more I've learned as well.
There are still so many unknowns, but I try to take them one day at a time. Some days I even make it through without thinking about one of those unknowns. I try to remember the 'knowns'. I know my children were meant for me. I know I was meant for my children. I know I love my children. I know they love me. Seriously, what more could I ask for? Just look at those beautiful, happy children at the top of my page!
Saturday, May 12, 2012
Saturday, April 28, 2012
Benjamin Turned 5
I absolutely cannot believe it. I know we always say our kids grow up so fast. Well, it's true. Yes, I know he's only 5, but he's my baby. That means the last one to turn 5. I really just want to freeze him, as is. Period.
So, on his birthday we all met the grandparents up at McDonald's for dinner and playtime. As usual at McD's, the company was great, food was gross. But kids liked the food, so there you have it. Afterward, we went to grandparents for a swim. My kids love to swim! My goal is to get them out of arm floaties as soon as possible. Not sure how long that will be, but I'll be glad when it happens. I think Avery will be out of them after her swim lessons this summer. After the swim we had icecream sandwiches for dessert. Then the kids were WIPED OUT. Oh, they tried to make out like they weren't tired. But when their heads hit the pillow.....OUT LIKE LIGHTS. For his gift, we got him a tent and little lanterns and a baseball mitt. Grandparents got him a sleeping bag, water cantine, binoculars, and camping chair. Our goal is to camp outside sometime during the weekend. Benjamin is our total outdoor kid.
Last night Benjamin had his 'friends' birthday party. So much fun! We had 20 kiddos come (and parents of course). We planned on it being an outside party, so thank goodness God blessed us with great weather for it. With the bounce house we rented, we also have a trampoline, swingset, and sandbox. So, because the kids were all dispersed out, it went really, really well. We served Benjamin's favorite meal in the whole world...peanut butter and jelly sandwiches, fruit, and chips. I made a tent cake and cupcakes for dessert (with icecream of course). We had a great time! Happy birthday my little Boo-Boo!
So, on his birthday we all met the grandparents up at McDonald's for dinner and playtime. As usual at McD's, the company was great, food was gross. But kids liked the food, so there you have it. Afterward, we went to grandparents for a swim. My kids love to swim! My goal is to get them out of arm floaties as soon as possible. Not sure how long that will be, but I'll be glad when it happens. I think Avery will be out of them after her swim lessons this summer. After the swim we had icecream sandwiches for dessert. Then the kids were WIPED OUT. Oh, they tried to make out like they weren't tired. But when their heads hit the pillow.....OUT LIKE LIGHTS. For his gift, we got him a tent and little lanterns and a baseball mitt. Grandparents got him a sleeping bag, water cantine, binoculars, and camping chair. Our goal is to camp outside sometime during the weekend. Benjamin is our total outdoor kid.
Last night Benjamin had his 'friends' birthday party. So much fun! We had 20 kiddos come (and parents of course). We planned on it being an outside party, so thank goodness God blessed us with great weather for it. With the bounce house we rented, we also have a trampoline, swingset, and sandbox. So, because the kids were all dispersed out, it went really, really well. We served Benjamin's favorite meal in the whole world...peanut butter and jelly sandwiches, fruit, and chips. I made a tent cake and cupcakes for dessert (with icecream of course). We had a great time! Happy birthday my little Boo-Boo!
Tuesday, April 10, 2012
Those *#!%@#! Fire Ants!
What do I hate about our area of Texas? FIREANTS! They sent Ian to the emergency room several years ago, and they continue to foster fear in my heart and mind every summer! This year, because winter basically decided to skip us, the little useless suckers are out earlier. We have Epipens, Benadryl liquid, and Benadryl cream always on hand...except yesterday.
Avery came running in from the backyard telling me that Benjamin got bit by fireants. I asked her how she knew they were fireants that bit him. She said because she saw him pick up the mound and then heard him screaming. Oh my! I ran out and got him. Sure enough, the mound and the ants were all over his hands. Panic attack! Ran into the bathroom and cleaned him up. Put cream on him. Had no liquid! Instead of overreacting with the Epipen (which can be a dangerous thing), I watched him for a while. When Ian got attacked, every part of his body began to swell tremendously. Benjamin's hands and arms were bit pretty badly. They were all red and swollen. But as time went on (and many, many, many tear), I saw no swelling anywhere else. By the end of the day, all I could see were little bites. Whew!
When I got the full story from Avery, she told me he picked it up thinking it was just dirt to throw. Poor little guy!
Did I mention....I HATE THOSE THINGS!
Avery came running in from the backyard telling me that Benjamin got bit by fireants. I asked her how she knew they were fireants that bit him. She said because she saw him pick up the mound and then heard him screaming. Oh my! I ran out and got him. Sure enough, the mound and the ants were all over his hands. Panic attack! Ran into the bathroom and cleaned him up. Put cream on him. Had no liquid! Instead of overreacting with the Epipen (which can be a dangerous thing), I watched him for a while. When Ian got attacked, every part of his body began to swell tremendously. Benjamin's hands and arms were bit pretty badly. They were all red and swollen. But as time went on (and many, many, many tear), I saw no swelling anywhere else. By the end of the day, all I could see were little bites. Whew!
When I got the full story from Avery, she told me he picked it up thinking it was just dirt to throw. Poor little guy!
Did I mention....I HATE THOSE THINGS!
Friday, March 30, 2012
Happy Birthday to Me!
I love my K1 friends (verbage compliments of Mrs. M)! Thank you for such a fun night. I absolutely love your company.
Monday, March 26, 2012
It's Been a While
Man, I can't believe it's been such a long time since I've been on here. Hope someone still reads it. :)
Not too much to report. Mostly still worrying about school situations for next year...nothing new. Had Benjamin's ARD meeting today. Went well. He'll be in the ABLE Kindergarten Supported program. Can't believe he'll be 5 next month and in kindergarten in the fall. Too much to handle. He's my baby.
Ian's ARD meeting is scheduled for next month. We wanted to meet with the diagnostician before the meeting to discuss some things we would like to see done for next year. It's like calling a meeting of Congress just to do that. It can't just be with the diagnostician. The classroom teacher, Special Ed teacher, and the district Spec. Ed. person have to be there. Seriously?! All they really do is use a bunch of 'educational jargon' to totally confuse the poor parent. I bet 9 out of 10 parents leave an ARD meeting not having a clue about what was just said to them. O.K. soapbox done. Funny, it didn't seem as confusing when I was on the teaching end of it. :) Hmmmm.
My mother-in-law and I share the same birthday (obviously not the same year). And today is that day. So happy birthday, my sweet MIL!
Here are a few pics.
Beautiful feet, compliments of my awesome friend, Rian. Thanks so much, my friend! Are you wearing your toe ring? BFF
Not too much to report. Mostly still worrying about school situations for next year...nothing new. Had Benjamin's ARD meeting today. Went well. He'll be in the ABLE Kindergarten Supported program. Can't believe he'll be 5 next month and in kindergarten in the fall. Too much to handle. He's my baby.
Ian's ARD meeting is scheduled for next month. We wanted to meet with the diagnostician before the meeting to discuss some things we would like to see done for next year. It's like calling a meeting of Congress just to do that. It can't just be with the diagnostician. The classroom teacher, Special Ed teacher, and the district Spec. Ed. person have to be there. Seriously?! All they really do is use a bunch of 'educational jargon' to totally confuse the poor parent. I bet 9 out of 10 parents leave an ARD meeting not having a clue about what was just said to them. O.K. soapbox done. Funny, it didn't seem as confusing when I was on the teaching end of it. :) Hmmmm.
My mother-in-law and I share the same birthday (obviously not the same year). And today is that day. So happy birthday, my sweet MIL!
Here are a few pics.
Beautiful feet, compliments of my awesome friend, Rian. Thanks so much, my friend! Are you wearing your toe ring? BFF
Wednesday, January 25, 2012
Quiet on the Homefront
Really not a lot going on this first month of the new year. Kids are struggling with allergies that are leading to ear infections, but nothing a little antibiotic and love can't cure.
Transitioning back to school was a breeze for the kids...thank goodness. Mom had a pretty easy time of it too...except the having to get up early, make lunches, and get them ready to get out the door on time. But, I managed to get back into the swing of things okay.
Notes from Ian's school have slowed down A LOT! When I get them, I don't generally reply anymore. I just mumble to myself and initial the day. Really I don't see the point in why they feel the need to write me everytime he, "had a good morning in Mrs. X's class and Mrs. Y's class, but he had a rough afternoon". Please tell me exactly what 'rough' means? If it means he got overstimulated and was loud and maybe annoyed a kid or two, well then I think we're working on two different perspectives of 'rough'. Oh well.
He's doing well at home. He really tries to communicate better, does his homework with me pretty well, and is wanting to do so many more things independently....some I wish he wouldn't try quite so hard at. :) He's also still staying in the same underwear all day (but changing them daily :).
Avery and Benjamin are truckin right along. Benjamin is getting more and more, ummm, what's the word???? Obstinent. Yeah, that seems like the right word. But, darn it, he's still so cute about it!
Avery is still our little princess.....with attitude. She's gonna be a great story-teller one day. The girl will spend 20 minutes straight telling me a story...usually about her "friend", her "friend's baby", her "baby", or her "husband". It's exhausting trying to stay up with it all.
That's about it. I guess sometimes 'non-exciting' is the way to go.
Transitioning back to school was a breeze for the kids...thank goodness. Mom had a pretty easy time of it too...except the having to get up early, make lunches, and get them ready to get out the door on time. But, I managed to get back into the swing of things okay.
Notes from Ian's school have slowed down A LOT! When I get them, I don't generally reply anymore. I just mumble to myself and initial the day. Really I don't see the point in why they feel the need to write me everytime he, "had a good morning in Mrs. X's class and Mrs. Y's class, but he had a rough afternoon". Please tell me exactly what 'rough' means? If it means he got overstimulated and was loud and maybe annoyed a kid or two, well then I think we're working on two different perspectives of 'rough'. Oh well.
He's doing well at home. He really tries to communicate better, does his homework with me pretty well, and is wanting to do so many more things independently....some I wish he wouldn't try quite so hard at. :) He's also still staying in the same underwear all day (but changing them daily :).
Avery and Benjamin are truckin right along. Benjamin is getting more and more, ummm, what's the word???? Obstinent. Yeah, that seems like the right word. But, darn it, he's still so cute about it!
Avery is still our little princess.....with attitude. She's gonna be a great story-teller one day. The girl will spend 20 minutes straight telling me a story...usually about her "friend", her "friend's baby", her "baby", or her "husband". It's exhausting trying to stay up with it all.
That's about it. I guess sometimes 'non-exciting' is the way to go.
Wednesday, January 4, 2012
So Proud
Well we just hit 2 weeks off school. Ian and Benjamin go back tomorrow. I have to say, I usually get really anxious when I know we're going to have that much time off. And this time was no different.
However, the kids did so incredibly well over the time off. That was even traveling by car out of state too. We had no major meltdowns or injuries. There was lots of time of playing nicely together. No illnesses. Wow, what more could I ask for? I would say the biggest problem was when we were with another smaller family member who has a hard time 'understanding' Ian anyway. That was par for course and nothing unusual.
I also forgot to mention that we increased Ian's dose of clonidine to a .2mg pill a day. He still takes 1/4 of the pill in the A.M. and afternoon, and 1/2 pill at bedtime. We're thinking this increase may have contributed to Ian's positive behavior. He's never had the dose increased since he started taking it a couple years ago.
Another step in the right direction is that while we were out of town, Ian decided that instead of saying 'shut-up' (which he picked up and brought home from school - getting disciplined when he'd say it), he would say 'be quiet'. We praised him a lot for this and are very proud of him. We still catch him saying 'shut-up' every once in a while. And he still gets in trouble for it. Now we have to get Benjamin to stop saying it!
On 3 different occasions (not in a row), Benjamin has come to me to tell me he has to go potty and then goes to the bathroom and does it! Treat time!!!!! On of those times he was in the bathtub and told me he had to pee. So I told him to get out and pee. He did. Now that would make any mama proud!
However, the kids did so incredibly well over the time off. That was even traveling by car out of state too. We had no major meltdowns or injuries. There was lots of time of playing nicely together. No illnesses. Wow, what more could I ask for? I would say the biggest problem was when we were with another smaller family member who has a hard time 'understanding' Ian anyway. That was par for course and nothing unusual.
I also forgot to mention that we increased Ian's dose of clonidine to a .2mg pill a day. He still takes 1/4 of the pill in the A.M. and afternoon, and 1/2 pill at bedtime. We're thinking this increase may have contributed to Ian's positive behavior. He's never had the dose increased since he started taking it a couple years ago.
Another step in the right direction is that while we were out of town, Ian decided that instead of saying 'shut-up' (which he picked up and brought home from school - getting disciplined when he'd say it), he would say 'be quiet'. We praised him a lot for this and are very proud of him. We still catch him saying 'shut-up' every once in a while. And he still gets in trouble for it. Now we have to get Benjamin to stop saying it!
On 3 different occasions (not in a row), Benjamin has come to me to tell me he has to go potty and then goes to the bathroom and does it! Treat time!!!!! On of those times he was in the bathtub and told me he had to pee. So I told him to get out and pee. He did. Now that would make any mama proud!
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