Stepping outside this morning, you could tell there had been a bit of fog. But blues skies bust forth, hilighting frosty trees. mmmm.... so pretty. What a gift.
Thursday, February 25, 2010
Wednesday, February 24, 2010
Rett Syndrome. Trust me, you don't want your children to have it.
My dear friend Heather has a daughter, age 2 1/2, who was recently diagnosed with Rett Syndrome. They battled with finding a diagnosis for a year, something more that "developmentally delayed," to no avail. When a therapist recommended getting her tested with a specific test for Rett's, my friend knew, but hoped against all that wasn't the case. The day they recieved the new was devastating. The death of the dreams they had for their daughter. It was a hard week.
But they are people of great hope. My friend is one of the best encouragers I know. She thinks on the positive and looks ahead, instead of wallowing. Well, not too much wallowing. ;) Plus they have a sweet, fiery, beautiful, smiley little girl in their lives. I'm guessing they couldn't imagine life without her.
Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. It's fairly rare anyway.
Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.
Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.
On February 24, THAT WOULD BE TODAY, msnbc.com and a host of others have collaborated to raise funds to help find treatments and a cure for this rare disorder. We hope that you will visit the International Rett Syndrome Foundation website at http://www.rettsyndrome.org/ to learn more about Rett, and if you can, make a donation.
And I'm sorry, but I could not find a cute logo/image/button to put here, and supper needs to be made. I did find one to add to my sidebar. Check it out!
Here's some "Rett mommy blogs" I found, too:
at 6:04 PM
I got this letter a few years ago, but today, while I was
being forced to clean out the desk, I came across it and thought I would share. Or, did I already? Hmm.. Wait. I'll be back in a sec. Ok, I checked. Nope. Not here, anyway.
This letter, addressed to me, did not have my name specifically on the letter, so it was just a form letter sent out, and I was "on the list." But, uh, I think they got the wrong guy, er, gal.
I'm not sure that I ever had this insurance, though I guess it's possible as, at some point in time, I had "supplemental" insurance, complements of our county agency, while pregnant. I didn't have it at the time I recieved the letter, however. In case anyone missed it, I have FOUR, count 'em, children. That might indicate that my hubs "bizniss" works just fine (all too well, some might say). I personally, however, will never have need of medication for, ahem, impotency or erectile disfunction. Because, uh, you know, I'm a WOMAN.
It gave me a good laugh. Hope you got one too.
And... now I can throw it away. ahhhhh to the purging.
at 4:51 PM
Monday, February 15, 2010
Actually, we've had a few parties that were "pink" but this was the first party I gave where the birthday girl just said "I want a pink party." Not cowgirl, or My Little Pony, or Princess. Nope. Just pink. I wuold have said 3 year olds are easy to please. I would not have been more wrong.
Pink Princess Tiaras.
These are really good.
I should have had her wear a pink dress with black polka dots. I totally forgot all about it. Oh well.
Happy Birthday, sweet Cheeks.
Oh, yes, and she did have a wardrobe change mid-party. And by that I mean, in the middle of the living room, center stage. At least it was just family.
at 10:11 PM
When you decorate a cake, but there is one step you take that is important, and that's leveling a cake. Or, if you are making a fancy shape, you cut off parts, and you would get the same thing... bits. Those little pieces that are cut off. They are just bits of cake. Yummy, even without the frosting. My kids LOVE bits. They ask for them. And, it's good to have something for them to nibble on while staring at a huge gorgeous, icing-covered cake... that they can't touch yet. But the bits are good. Even though they're just bits.
Today, I bring you bits.
I get periodic (weekly, 2 times a week? I don't know exaclty) emails from Love and Logic. (If you don't know about Love and Logic and you are a parent / teacher / person who works with kids, you really should discover it. Just sayin'.) The creators of L&L send out little lessons or tips. They are almost always great. Yesterday's post provided 2 great nuggets of truth.
Anything worthwhile is rarely easy. This is something I have been thinking about but just couldn't find the exact right words to make it catchy, but it surely is something I want my children to understand. In my experience, "the good life" is not handed to you on a silver platter, regardless if you "deserve" it or not.
What our kids overhear is far more powerful that what we tell them. The lesson said this, "Give your kids the gift of hearing you talk about the satisfaction that comes from hard work. The best way to permanently ingrain this belief in your kids is to have them overhear you talking about your own struggles and the satisfaction that delayed gratification, hard work, and achievement bring.
My coupons are under there. I promise. And I had already picked them up once. Sigh.
Please note: I was not ignoring him while on the computer. That was only the first time. The other times I was actually doing something productive, you know, like my job... cleaning. And he's quick about it. Oh, he's so fast.
at 9:49 PM
Tuesday, February 9, 2010
Murphy's laws, and how they pertain to me today.
•If anything can go wrong, it will. I'm sick, George is sick. Baby Boots is feeling better (which means he's up to mischief). King Kong is at work.
•If there is a possibility of several things going wrong, the one that will cause the most damage will be the one to go wrong. I'm just waiting for the girls to start barfing. Boots getting diarrhea would also be very bad.
•If anything just cannot go wrong, it will anyway. I thought being stuck home in a blizzard with the possiblity to run out of diapers was a tad stressful. Now, add sick to that. So even if I could go somewhere, I can't. I found 4. Hopefully I can stretch them out til Kong gets home.
•If you perceive that there are four possible ways in which something can go wrong, and circumvent these, then a fifth way, unprepared for, will promptly develop. I'm sick, kid/s are sick, except the holy terror child who is running and on the loose, we are in a winter weather advisory, and I have no diapers. Oh, but that fifth unprepared for thing, yeah, Kong called and picked up an extra shift, so he may not be coming home til tomorrow, depending on the weather today. Nice.
•Left to themselves, things tend to go from bad to worse. This one pertains to the smallest, most destructive and mischievious monkey, Boots. He might be the baby, but he sure is a little stinker. If someone could only figure out how to bottle all that energy, they would be rich beyond imagination, and would probably win every Nobel prize there was to be had. Mother's everywhere would rejoice that the playing field would be leveled. So far, he's dismantled all the toys I picked up this morning, played in the sink, played in the bathroom sink, eaten things out of the garbage, and had a number of tantrums.
•If everything seems to be going well, you have obviously overlooked something. Body aches. I forgot about body aches. ugh.
•Nature always sides with the hidden flaw. I don't know if I could handle hidden flaws today. Please GOD! Spare me.
•Mother nature is a
bitch. Vomiting and diarrhea. This needs no further explanation as to why it sucks. The good thing - Aunt Flo is not visiting. (also, I am not actually vomiting yet, but it's a definite possiblity. I've gone to the throne room in anticipation at least 5 times.)
It never ceases to amaze me how certain things that would be made so much easier with two adults present only happen when King Kong is at work. (And he's a truck driver, so he's hours away, not just a 20 min drive and will be home in a few hrs, or can come at a moments notice. My hub generally works 18-22 hr shifts, more or less.)
Like the time I got a kidney stone, though I didn't know what it was at the time, and had to pack up the kids and haul myself to the ER at 3 in the morning. Thank God my brother lives 2 blocks away so he could load the kids in the car for me, and my mom and dad took them while I was otherwise jacked up on morphine. Oh, and did I mention I was 8 months pregnant?
Or the many times when the kids have gotten the pukies, like today, and I'm manning the masses all by my lonesome? (Which is easier than taking care of one sick grown man.)
Or the time I had a fever that knocked me on my keister so completely that I literally couldn't move from the couch? A fairy name Tinkerbelle came and saved the day (aka. my mommy). She even did the dishes.
Now, this kind of sounds like a pity party, but I assure you it's not. It just my way to find humor in an otherwise humorless situation. Because today, we've got the flu. ugh.
The thing worth pointing out, however, is that there is always something good, some way that God shows you he is taking care of your needs. Luckily my family lives close by and can help me in times of need, even at 3 o'clock in the morning, or to come do dishes and wrangle children. And if husbands aren't home and around sick people, they can't get sick. So they can go on providing for their family, and the wifey doesn't have the task of waiting hand and foot on
the worst wussy patient ever one more person while she is also sick.
at 11:33 AM
Monday, February 8, 2010
After spending the last 2 hrs reading Not Me Monday posts, I decided I probably can come up with something to share. So why Not! :D Because I do NOT have an eventful life, it is NOT a comedy of errors. There is never anything that is improper, inappropriate, unwise, or unsanitary going on in this house. And I just don't have anything that needs to be done around here. If you'd like to get in on the fun, or read a little more about all the other tales of things people did "NOT" do this week, just head on over to MckMama's blog for a little blog carnival therapy. Or, as I call it, share-apy.
I would have NEVER told my husband, upon hearing his complaint about having to wear dirty jeans today, "well, now you're just like the rest of us."
I did NOT just remember I needed to buy diapers today. We are NOT in the middle of a snow storm, so going to the store is not an option. Crap. (And I hope not too much of it.)
Of Friday evening, as we were calmly having a bedtime story, the 3 monkeys and I did NOT all watch in utter surprise and horror as Baby Boots puked all over Koko's bed. And by watch, I mean, literally just sat, and watched. 3 waves of barf, people. I then did NOT have to rush Miss Cheeks out. of. the. room. as she was making her own heaving noises. (you know how you watch and smell, and then it gets to you.)
I did NOT host a birthday party, despite a very sick Baby Boots. I did NOT figure that my warning people and putting him down for a nap during the festivities would be good enough preventative measures.
On my Things To Do Before the Birthday Pary Cleaning List, I did NOT have cleaning the turtle tank as a top priority, before cleaning the bathroom even. I was NOT worried that someone would call PETA on me for animal cruelty, as the water was, um, let's just say "not clear." (It's all good now.)
The birthday party was NOT a success, and my girl did NOT haul in!!! She hit the jackpot of gifts. (FYI: tacos in a bag/walking tacos are a big hit, and super easy.) It was NOT a cute but easy "pink" party.
This is NOT my daughter with a balloon under her dress, saying she's pregnant. Her grandmother did NOT put it there saying, "look, now you're just like mommy." Ahem.
And NO, I'm not pregnant.
Sigh. Now that it's 5 hours after I started this post, I've forgotten all the good stuff. This will have to do.
at 9:37 PM
Wednesday, February 3, 2010
Koko is my more "spiritual" of the children. She is more apt to pray, to talk about God, to ask questions. It's sweet and warms a mama's banana-filled heart.
The other day at breakfast, she and I were sitting at the table. She had her head resting on her hands, elbows on the table, and she said she had a dream about God and Jesus. Naturally, I was very interested to hear about this. Keeping a calm demeanor, I asker her to tell me the dream. At first I thought she was maybe making it up, just retelling a story, but the whole time she told it, she had this funny, sheepish grin on her face. Like it was special, but she was a little shy to share it. She has told the story of her dream 4 times now, and each time it is exactly the same.
I had a dream about God and Jesus. I want to be with them where they live. I killed a giant with 30,000 stones (yes, we've read this story recently) and they said I saved the world. Then an angel came and gave me a message. It said "Koko, you are very good. Signed, Good Girl."
I asked her later to describe God and she couldn't. But she did describe the angel:
It had super long wings, it had super long hair, it was a girl and had earrings. And gave me some (earrings).
Isn't that awesome, to have a dream where God tells you you are good? Isn't that what everyone longs to hear? 'and the Holy Spirit descended on him in bodily form like a dove. And a voice came from heaven: "You are my Son, whom I love; with you I am well pleased."' Luke 3:22
What a lucky girl.
at 3:05 PM
I think a reworking of the age / characteristic thing is in order. It's totally wrong. My experience hasn't gone very far yet, but from what I know, it's not what they say.
(We are now not currently in this stage of Two's, so I apologize if I forgot certain defining characteristics. Maybe I'll update this next year when I've had a refresher course. But having completed 2 three's and just now entering a third, I still say two's are better.)
I hear it really gets good when they're about 8.
While it's a blessing to be a parent to awesome kids, parenting is NEVER easy. There are always challenges. Right now, my challenges are clearly of the one and three year old kind. If I could get my kids to stop getting into stuff, making messes, needing to be fed/bathed/dressed, eliminate whining/fighting/tattling/tantrums, life would be a breeze. Right?
at 2:44 PM