i give UP!!

This is my livingroom. See the purple-dora-foldout-basket-toybox-thingy in the background? She's unloaded and dumped it in the livingroom...and she is just pleased as punch.

She likes it this way.

I had gathered up all of the crap, that should have been tossed, and put in that purple thingy in the spare bedroom. The crap had somehow migrated into there. It has a zipper on it, and since the school reports that she can't operate a zipper, i felt that it was safe until i got time to sort through it.

The school was WRONG!

Most of her GOOD toys have been sorted, binned, and hidden. But nothing ever stays hidden from molly very long. We let her have one bin at a time...and try to make her pick it up and put it away when she's done...and i swear, you would think she'd CALL WELFARE!!

SHE LIKES THEM OUT! ALL OF THEM!! BE FREE LITTLE TOYS...BE FREE!!

She's happiest when she can just walk around, stumbling on top of them, and playing with them at her liesure! I have actually cried out in pain when impelling a LEGO on the heel of my foot!

It's making mommy very tired, frustrated, and ready to give up on picking them all up again, why? It's just going to look like this again tomorrow!

Unless i resort to handcuffing her to a chair...she is on the move. While i'm picking up the livingroom..she will be redecorating the bedroom...afterall...those pillows, sheets and comforters really do belong on THE FLOOR! it makes it easier to spread out...maybe with some cheetos or pretzels...

Has anyone else ever had to VACUUM THEIR SHEETS???? As far as I know, Jackie O in the whitehouse and i are the only two women in the world that change their sheets twice a day...AND SHE HAD SOMEONE TO DO IT FOR HER!!

I don't EVEN want to talk about her bedroom!!....suffice to say, when i clean...i devote one day, to any particular room. ONE WHOLE DAY! and i'm lucky to see it stay that way for the following week.

I just wanted yall to know that, in case you ever feel like dropping by, and i'm going gaga and there is no where to sit!

**************
This week, she stayed in school all week, with no bugs/flus/sniffles/tornadoes/floods or earthquakes to disrupt it! YAY!

It was a tough week, though, and I'm really not sure what all went on...i just know that Missouri Map Tests were occuring....molly got to opt out, after making it painfully clear that she would NOT participate. I do understand that there was teeth involved in this.

And speaking of...she is short one tooth on the bottom row! where it is, or when it happened seems to be a mystery to all....or they aren't admitting to it. :-) Gotta love the teachers!

At the completion of the testing (which she had to switch rooms to allow the other students to test in peace...and as you other parents know...changing routines is NOT GOOD) all of her class got kicked out of spec ed. rooms... so that they could test the incoming Kindergartners up there!

Hopefully, we'll all be back on track next week. The IEP is set for mid-may, and I'm sure we can count on a whole blog devoted to that, as i cannot stand hearing how the other kids like molly are doing so much better than her! (you cannot compare kids like ours...they are each their own little flower)

I always walk away feeling guilty that we didnt go ahead and have that second baby...sibs seem to spur advancement, and guilty that i am not forcing her to work hard enough at home.

An IEP is the year-end review and planning for next year, and you rarely walk away feeling good about her progress or her schooling. We need to change that.

I still try not to look at the age of what they estimate she is operating at....although that is going to have to start happening, if i'm to make good decisions. They absolutely can not test her for those decisions...as she won't be tested! They do know, thankfully, how smart she IS! but what they know, and getting it on paper for the state...are 2 different things.

Then of course, we will make the decision to advance her to second grade...or let her stay another year in 1st grade.

*sigh*

So enters spring, and the flurry of the end of a school year. We have signed her up for summer school...and she will continue the T's there (OT/ST)...but summer school is chaotic, and she doesn't understand why it changes so much....still second guessing that decision. (It's classes combined for fun-study...with all lower grades participating, and upper grades get points for helping with the fun-study. Any other student would love it, and there is a big trip to Silver Dollar City at the end for those that keep with it....but molly just doesn't get it! To her its too different to be fun! UGH!)

As an example to the pig-headedness...last night i put some pineapple/walnut/creamy dessert on her tongue to try...i knew she'd LOVE IT! Molly is so against trying anything new...she ran around with her tongue stuck out, until she found a towel, and could WIPE IT OFF!

she's just like daddy. UGH!

********************

I've met some new moms in here, and thru the youtube video..and that's exciting! I like to reach out and take a little bit of the fear out of the new arrivals! WELCOME NEW FRIENDS! (and please forget everything you just read! ha!)

Gabe got all A's and one B for the semester end, and at last check Ally's scare of gestational diabetes is NOT happening..aubrey jo is getting ready to make her final approach to landing. (end of june-4th of july)

Bill got into a scuffle trying to stop a runner! (bail bond skipee) He seemed almost proud of his scrapes! EEK! See bill...there is still a football career for you! NICE TACKLE (that's the fake mommy, trying to be supportive)

And for my prayers circle....

This past week sees the funeral of a 12 yr old who lost the battle with the beast....and the notice of another that the trials they signed up for are not working. They will make the decision to take that 16 month old home with hospice this coming week.

www.carepages.com

johnericbartels

Cancer sux! But we still beg for prayers for all that are involved with it. And if you have the chance to donate? Do so, generously. Thank you.



Now...onto the housecleaning! wish me luck! Hey Sarge!!...where DO you keep those handcuffs????

All this water, and i can't get a BATH!!

I'm never going to get into the bathtub. We've been so busy, oversleeping, working hard...but no opportunity for a bath? THAT'S the last straw!




We went to Springfield to work on pop's house. Now, we do this every month. Pop died in 2004.

Grief is a difficult thing to handle, at best...and sometimes it just keeps on keeping on. I am thankful that 4 of the 5 siblings are traveling in to make it happen, but 4 years of maintaining an empty house is just about enough. Any inheritance to be had has been ate up in a probate attorney, utilities, insurance...etc. It's too bad that 1 out of 5 had to be such a jerk....amazing and one of those "i would have never believed it" kind of stories. I hear it's quite common and will take measures to make sure that my children never have to have these feelings and obligations in the event of our deaths.




This week we have had one tornado, another rash of flooding and more rain (we've already received 1/2 of our annual rainfall for the year) and yesterday? we worked and drove home in the snow...SNOW in MID-APRIL!! I am totally tired of this mess. They actually dismissed school at noon on Thursday because of the flash flooding. This is an outhouse in Tecumseh park (across the hiway from the river) and as you can see, our wells and ground water have been comprimised also.



It is so unusual to us, that boys had to be rescued from the usually dry creek bed as school got let out, and what better way to spend a free afternoon than kayaking a usually dry creek!?! EEK! We did have one 14 year old swept away in Winona, which is not the first to be lost. I am SO ready for a real spring.



After a day of tearing down a ceiling, and getting to visit with gabe who came to help and hang out...we head home, filthy and tired and anxious to get a hot bath and watch "the memory keeper's daughter" and the sarge of course, is happy that the nascar race is late...gonna be a snuggle bunny evening, with snow flying, in a warm house.

NOT!

We pull in and the attny neighbor is out walking his dog...he was on his way over to see if we had power.

Nope...we don't.

I'm not sure what happened, but in between tornadoes and floods and snow, eventually something had to give, and it was the power...and it was off the entire evening until everyone was asleep.

We live in the country...so when there is no power, there is no water (well's need power) so one of us is not sleeping, cuz who can SLEEP with this much DIRT ON THEM???

It really wasn't as bad as i thought it would be. Miss Molly was not understanding the concept of no power, and was as upset at no 'spongebob' as Larry was at no NASCAR! It was only when she opened the fridge did she get it figured out....and of course, we had to save the ice cream, so that made it better.

I got the battery radio, and there was an oldies station playing 70's music all night...which
were fun songs for her to sing with me, as they had such ditsy lyrics. We all jumped into mom's big ole bed, cuz it was CHILLY and dark! (i'm talking 7pm) I think the sarge was a little more tired than he let on, from all the physical work at the house, and the excellent steak dinner afterwards... sleeping at 7pm didn't seem too big of an inconvenience.


Gabe had come to meet us at pop's house, help with the ripping out of the ceiling, and snuggle with Molly Kate. she LOVVVVVVVVES her 'babe'.






I'm not sure, but i got the feeling he needed some family-time too. His new baby is due in june, and I see the wear of the final trimester in his brow. I don't know how to make him understand that this 3 months will be "memory-eased' in time, and the joy he is about to experience will far outweigh any stress that he's now incurring.

I can't wait for the day...I can't wait to see the joy and the heart swell that happens when you look upon your first child. I think I'm more excited to see Gabe's face, than in seeing little Aubrey Jo....

That feeling is too amazing for words. It makes your life complete. It is your life. It is what you live for, and nothing else compares, or matters in that one second. Those realizations seem to happen immediately, and I'm anxious to see Gabe's face when it hits him! *beam*


Molly and I chose to make shadow puppets on the ceiling of the bedroom, wavy from the candlelight...and she passed out about 8pm. I make a mean german shep dog shadow and she squeals in delight when he barks! It really turned out to be a nice evening.

The music on the mono radio reminded me of days gone by...and while they slept i drifted off to memories of high school and college , and wondered about all the friends i loved then....and how they were doing. I was a rowdy teen and young adult...and also wonder if they would ever believe where i am now in my life.

I saw a light pop on at 154 laps to go....woke the sarge who got to enjoy his race, and went to shut down the house. I was very grateful to hear the heater kick on. We have a generator we can drag out in life-threatening situations...but the house was above 60 degrees, and that was easily handled with a big comforter, some candlelight and 3 in a bed.

I forgot about the memory keeper's daughter...and will have to catch that one later...everyone said it was great!

Little Bill is in town for the weekend....We did a 3 hour tour of the flood damage. Went to Norfolk Lake and Mountain Home, Arkansas...back thru Dawt Mill and Tecumseh and then finally to our River...which was barricaded shut...we had to hop the fence to go get pictures.



I just learned that the conservation department has pulled all 'regatta' licenses..meaning that for the first time in my 20 years here, there will be no fishing in the ozarks. Amazing...the 3 big lakes are all at capacity and several towns will have to be flooded for the bigger good. It's just dangerous.

This past week also marks the celebration of the birth of MY first born. Those feelings never stop, you know. It's been difficult to let her go at best, and I know she won't understand it until she lets HER first one go.... i think that since the day i delivered her and all through my life, letting her fly from the nest and make her own life has been the hardest thing I've ever had to do.

If i could wish one thing, it would be for ALL my kids to understand that when I look at them now, I feel the same way that i did when the Doctor first handed them to me....they are simply amazing, and the best thing that's every happened in my life.

Happy Birthday, Shauna!

Keeping my eye on the gap

I usually blog on Sundays...early when it's quiet in the house, and before Stephanopoulos, Meet the Press,and Face the Nation gets fired up. I'm a political junkie...and think it's very important for the general public to keep up with details of government activities...there is SO much more going on than the Lead Story.

For instance. ...we've ALL heard about New York Governor Eliot Spitzer and his high dollar extra curricular activities...I was outraged along with the rest of the public...not about the sex.. SEX IS SEX and it's just gonna be...I never have felt that it is the moral-meter-reader of mankind. The outrage to me came from the fact that he was on the tax-payers payroll and spending in such a manner, although I've not seen the actual charges and financial statements.

It has come to be known this week, that those exact money charges are what got him outed! Because of the Patriot Act, the government now forces banks to turn over 'suspicious activities' and since Spitzer was drawing out large cash amounts for his 'activities'...the Feds were notified....and hence the scandal came to light.

Now I find it suspicious, that with all the terrorist's huge cash flow allegedly pulsing through the American banking system...it would be a DEMOCRATIC governor who is singled out and hung because of that act. The Patriot Act was enacted by BOTH sides of the aisle to protect us from Osama-type money and the damage it could do.......not for tracking one man's private sexcapades and definitely not for possible POLITICALLY MOTIVATED attacks. I find it mind-boggling that it could be me or you, and just how much of our Constitutional Rights were given up in the trade.

Just food for thought....

Anyway..it's Saturday...and my beloved St Louis Cardinals have come down to our neck of the state, and are playing an exhibition game with our minor league team, the Springfield Cardinals. I can keep an eye on the game, molly AND blog, or clean Molly's room and find that danged old remote! We've lost the sponge bob TV's remote...and THAT'S the TV I want to hook up her 'first computer' to....ah yes...great plans foiled by my molly kate's INCREDIBLE need to hide anything she loves in a safe place! (that, dear readers is a genetically inherited trait from MOM not from the enhanced 21st!)

MY computer was side lined, because my step daughter came visiting and downloaded some japanamation cartoon she follows. I remember her saying it took all night to download, and how frustrated she was with our satellite hi-speed hook up....what I DIDN'T know was that we are limited in bandwidth (something that was NOT brought up when we were talking to the sales people) and because of that download I was now on suspension with the server for 30 days...or I could step up a level. (say it with me...cha-CHING!)

Well, I stepped up, and now am paying a JAGILLION dollars per month for service which is currently not working due to the huge thunderstorms that are rolling thru the weekend. (yes, that's right, more rain-another flash flood warning). I'm relatively sure that this blog won't even make it to post...and MORE frustrated that I had to be on hold for an HOUR just to douse this little fire, and MOST frustrated that I pay that HORRIBLE monthly amount...for about 15 days of service per month!.

No...I think the MOST frustrating is that this is the ONLY alternative I have to dial up...we live in the beautiful Ozark woods of Missouri... on a perfect piece of property six miles from town. Convenience of town close, but real life in the quiet, safe, secure, and serene home in the country.

This is the dues paid for that luxury. AT&T is the only phone service available to us, and they don't think hicks in the woods are worthy of their DSL-attention.(I also have no bars on my AT&T cell here) The other things lacking are not so important...decent restaurants, a big airport and cultural activities....but I can easily travel to satisfy those needs..the hi-speed continues to be my biggest onus.

I did loll around on another rainy day trapped inside and watched a movie this morning. I must have seen it advertised or heard about it from one of you, as it's in my PDA as 'to see'.

Notes on a Scandal is a freaky movie, but one of the main characters (Kate Blanchett) is a teacher and a mom to a teenage daughter and a 10 year old son who happens to have Down Syndrome. (mom ends up hosing a 15 year old student) the actor portraying her son was FABULOUS and my heart was warmed that he was not portrayed as being a totally life-altering defective burden...as was the child on Dr Phil's show this week. One step ahead...and Two steps back seem to be the norm for Hollywood and the news, on how our children are introduced to the general public. *sigh*

There was one line that caught my attention..."keeping an eye on the gap" ...the gap being what you DREAMED your life would be, and what your life actually is.
Interesting mind fodder for another day.

On the home front:

We got a WHOLE SENTENCE out of Molly Kate!! Very Exciting especially since I am at my wit's end with her communication skills!

Daddy and I were trying to get her out the door to the bus, and she had firmly planted feet. We have come to learn that there is no fighting a will like that and we pick our battles. Trying to get to the bus is not the time to battle...so we both stop and try to understand WHAT the big hang-up is!!

She looks at him, points at the coat hooks and says "HO HOR HAT" we're guessing that that means "GET YOUR HAT!"

I told you about her wearing a ball cap whenever she leaves the house with daddy????...and he did not have his on! She has repeated the command...whether or not it is his OR her hat that is needing donned. Yea, we'll take it! We'll
take a little ray of hope, and keep plugging along with it. Her big debut with the microphone, the stage, and her one-word spotlight performance at the Spring Concert has been postponed a week....YAY! we have a little more time to work on
the word 'GORILLA'.

I had one day off this week, and in that day's time had an open-house for a tow-truck driver, (the sarge's truck crapped)landscapers, fence men, and the pool man. There is a lot of work to be done to make my little nest summer ready...
which seems an impossible feat given the fact that the rain has returned.

As much as I've griped about it for the last month, it was a nice quiet start to the morning, Our storms have amazing thunder...one rolled for about 15 minutes non-stop this morning...making for great snuggle-bunny time.

My 'chicken-skin' moments

This week reading Dave Hingsburger's blog "Chewing the Fat". Dave is a guy, who after devoting his life counseling the disabled and their families...found himself needing a wheelchair. He published an email from a
woman who had found him last year while searching for 'weight loss' topics! Too cute that she stumbled onto him, and became like most of us... loyal, daily readers. One year later and guess what?...she's pregnant, and the baby has been diagnosed with Down Syndrome.

Coincidence? I don't think so...sometimes these connections happen for a reason, and I thank God she ran into Dave, and not Dr. Phil.

Texas Law Enforcement:

A little boy from Oklahoma with an all too familiar bald head made the news this week, having breakfast in Dallas with his family. They were on their way to Children's to undergo another round of Chemo. Some CREEP steals the little boy's backpack which contains a PSP, his medical records, and all his medicine. The parents called the Dallas PD, and filed a report...and then headed off for day at the hospital that has just been made WORSE if that's possible. Two hours later, the Dallas PD was again with the family. They delivered not only a new backpack, but a new PSP, many games to go with it, and about $1200.00 they had raised to help defray the cost of replacing the medicine.

I love Law Enforcement...for as much headline heat as they get...they continue to Serve and Protect..and go above and beyond the required duty when it's a heart wrenching scenerio. KUDOS TO DALLAS PD!!

And Finally Albert Pujols. I'm so glad I chose to blog and watch the game. Game 2 started with the ceramonial opening pitch coming from a local boy with DS...and the catcher was Albert Pujols. The homerun king usually plays 1st base...but has a daughter Molly's age who also has DS. He keeps a foundation for us...and with his wife, speak out for DS Awareness. GO #5!! WE LOVE YOU!!

Gotta run....my little miss just walked by me reeking of Aramis aftershave...and I can now hear daddy thundering from the area of his medicine cabinet.....the party never ends.

Clutter

Hi, my name is Eileen, and I am addicted to clutter.

It’s a problem that I have fought all my life. I have good ideas on how to deal with it, but rarely follow through.I have purchased numerous helps.... shelves, space bags, toy boxes, plastic bins, hanging shoe holders....and they themselves become part of the clutter.

I am currently picking up the train set and putting it away for awhile. It causes visitors to trip into the formal livingroom.

Neat thing about Molly. You just put it away for awhile
and in a few weeks, it’s all new and the COOLEST thing she owns...out it comes again! It’s going into a net-storage-thingy i bought years ago.....where I’m going to put it afterwards is beyond me. All my rooms are filled with clutter. They’re full of clutter too dear for me to toss.

I remember Dr Bowles’ nurse rolling with laughter when we took molly in for the 6 week newborn check. I spotted a booger and asked her for a piece of tape to save it on.....

she thought i was joking!! yea, THAT kind of precious clutter!

I married a clutter-guy. He has little tolerance for my addiction, yet his seems to go unnoticed...His stuff is IMPORTANT! It involves alot of radio wire, knobs, spare parts, antennas, coils, copper, switches, transformers and every part to every telephone we’ve ever owned dating back to the rotaries.

He also does genealogy, so HIS room is split into 2 halves...1/2 cluttered with radio parts, and the other half cluttered with paperwork, letters, black&white pictures of long since past relatives and headstones. (that’s PICTURES of headstones...not the actual ones.......yet) The divider of the room is the boy’s weight bench which patiently waits for them to come recover it.

Today is Holy Saturday, and I want to cleanse myself of the clutter....The clutter in the house, and the clutter in my mind. I’ve allowed my mind & spirit to join the ’bogged down’ status of clutter that has taken over my house. It seemed to just ooze into me, and now it’s comfortable there.

It’s not totally my fault. We’ve had a really, rough, ’stay inside’ type of winter. Just when we thought there may be a break in the abnormal amount of snowfall we received, the floods came.

It rained 8-10 inches here, in a matter of 2 days this week...something that hasn’t happened here since 1993. It poured constantly, and was grey and dismal....and we continued to be stuck in the house.

We watched as a rapid creek formed and stormed through the back woods, and began to turn into my own private lake. We watched the river rise to a dangerous level:



Now, Miss Molly has had NO PROBLEMS with this season. Her and her daddy could live indoors 24/7. They are both very self-entertaining.

Im currently looking at a waxy crayon mural that covers all of my sliding glass door. It didn’t windex off...this is a job for the mr.clean’s magic
eraser. I’m wondering if the eraser will turn the fat dog’s beautiful chocolate brown coat...back from it’s current shade of ’highlighter-yellow’. The good Lab that he is, patiently sat there until her task was completed.

Miss Molly LOVES the clutter...in fact, she contributes to most of it. She is most happy when everything that is binned up, is set free! Run!! Run little toys!! Run all over the house!!

As I move from the sliding glass door, to the living room floor, she takes her cue to move to ’the entertainment room’ which sadly, in this house, is my master bedroom. The only ’entertainment’ in there anymore is a SPONGE BOB DVD!! *sniff*

She’s taking things apart in there twice as fast as I can get them cleaned up in here! She has a large collection of VHS tapes she keeps. They will stack about 3 foot high and 4 columns deep...but she likes them much better sprawled all over the floor and will step back to admire that chore, much like the floor-tile man would after completing his work.

We call that OT....she does know how to stack them back up again, but doesn’t do it until she can see the veins standing out on the temples of her frustrated mommy’s head. (I really need to throw all those tapes out)

The clutter that afflicts my home, also lives in my spirit this year. I feel like i should be doing something important with my life, yet can’t seem to figure out what that is. The first half of my life was spent keeping my head above water, raising the older children,juggling the multitude of sporting events that each HAD to be at... and putting out constant life-fires. Now? Now that there is no more drama....I’m totally lost.

I know that i am VERY grateful for the abundance of love and the financial ease that my wonderful husband has afforded me, but i feel like there is still a part of me that has yet to bloom.

I give great contemplation to this, worry that it is depression...pray about it, yet still feel useless and incomplete.

I don’t know if this is a mid-life crisis. I don’t know if it’s hormone induced. I DO know that my whole life feels like what my livingroom looks like.

And I know that something needs to change.


I’ll keep you posted.
******************************************************

This past week, bill and angela came to visit, camp, and love on the little sister.






Molly is still ate up with congestion, and I’m still dosing her with Mucinex and claritin, and praying that it does not turn into more. We’ve exhausted all the possiblities with the antibiotics this past month or two. I now have wet ones boxes set up all over the house, as they don’t make a kleenex big enough to deal with one of her double-barrelled sneezes...YUCK!

She is of good spirit though, and ran all the way from the back yard today to get to the toilet before ’setting one out’!! YAY MOLLY!! (I know, TMI....but hey...i waited SEVEN YEARS to share that story with yall, so sue me!! HA!)

Larry went to KC to get Kelsi to share spring break with us, and dropped me off at Springfield to visit with
Gabe and Allyson (and the growing Aubrey Jo)






but Gabe was just beginning the start of that awful flu, and we ended up just watching him snooze. Two trips to the doc (and $100.00) later, his fever has just broken.





No news from the district.

Amy’s Ben has started his chemotherapy. He’s dealing with all of the horrible side affects that come with it.

I’m designating Holy Saturday as the day
to give Fervent, Constant, Pleading Prayers that Bennie’s pain, as well as the host of other children that are dealing with the same issues...be eased,
and that their parent’s heartbreaks also be eased.

It’s hard to imagine the spring season among the flood waters, and the celebration of new life, when I know so many that are struggling to HAVE life.

But like the green grass and the bright sunshine that has erupted since the flood...I pray that these hearts will be mended, and these children will be granted the new life that is the Promise of this Holiest of Seasons.

I hope that all of you can take a moment and join me in this prayer. I know the power of collective prayer.

Easter Blessings to you all.

spring break sucks

WANTED to be in LA for this spring break, but being the dutiful wife, listened to reason....and trust me, that won’t be happening again anytime soon! I can’t do Plan B, which is put my backyard back together, as it’s raining and cold. It needs to be repaired from last year’s work on the septic lines. Living in missouri means that now i have a back yard mostly consisting of rocks and patches of green. I’ll have to redo the whole thing, but that’s on hold for awhile longer until the rain stops and the weather warms.

Molly’s off of school for a week, which is no different from the last two months due to snow and flu....we’ll probably be in school thru august!

The sarge will go to KC on Tuesday to pick up Kelsi, who’s also out of school. College doesn’t get out until NEXT week (you think they could coordinate these things) so i’ll have him drop Molly and I in Springfield and visit gabe/ally in between their classes. I’m psyched about seeing them as i haven’t seen my little growing baby-bump in awhile. Aubrey Jo will be here the last of June and my vacation is already posted on the work calander.

I’m relatively sure that shauna will get time off, but doubt that she heads this way...her new and exciting life doesn’t really include us hillbillies anymore. *sigh* More depressing this time of year, as I went into labor with her on Palm Sunday Mass in 1981. As parents we work so hard to give them wings, and what do they do?? They go and FLY AWAY!! When a parent leaves ’being the center’ of a child’s world, and becomes ’an obligation’ it is just devistating. It is the nature of life, i suppose, but that doesn’t make it any easier to cope with.


Bill and Angela came home....and then went off camping IN THE COLD with bill’s big brother,josh and his wife and kids. Those goofy boys...nothing better in the whole wide world to them than a pot of stew over a campfire, a tent, and a babbling river or lake close by. It’s where they go to revitalize. It’s where they find their peace.


Not so with Molly Kate and the Sarge...now THERE’S two peas in a pod! They could live in the house 24/7. Just make sure there is ample radio wire and sponge bob dvd’s. They fight and laugh and prank each other. My role is the provider and the observer.


Molly still wears pull-ups at night. She is fully potty trained now, but both her and daddy
have routines that they do not vary from. One evening this last week, she paraded out nekked after her bath. Daddy hollers at her, ’PUT A DIAPER ON!!" She looks at him slyly, goes to the closet and gets a pull-up, pulls it onto her head like a stocking hat, drops her towel, shoots him the ’stink eye’ and marches her nekked self defiantly off to the bedroom!


This is why we call her the skunk. Down Syndrome does not mean stupid...it does not mean slow.. not by any means or definition!


She has areas that are harder to develop, i.e. her speech, but she does NOT have any problems with wit, sarcasm, irony or humor. Just the opposite in fact, those gifts seem to be more enhanced.


She also stops on the way out now, to put on a ballcap before leaving the house... just like daddy. I fix her long hair up in french braids and ribbons and she pulls an old fishin’ cap on over them. There they go... her and him, ballcaps on and leaving to get on the school bus.


Molly is a fan of Mizzou sports, Nascar, Cardinals Baseball, and Chiefs Football. She is happiest when perched next to him in front of the television watchin a game. They don’t even have to go TO the games or races!! Ive TRIED!! (better view on television) Sometimes I think if daddy would learn how to cook and swaddle the big, ugly baby into a receiving blanket, then I would have no purpose at all here.


Molly has a part in the spring concert this month. She has to walk up to a mike and say ’GORILLA" We are currently working on that mountain of a task. She only speaks in the last syllables of a word...so she says "rilla" She can say ’go’...but try as i may, i cannot get her to put the "go" and the "rilla" together! This is going to be interesting. I’ll make sure the camera batteries are fresh.


I was pretty amazed that she was even IN the spring concert! Rumor has it her new music teacher doesn’t like kids with special needs disrupting her teaching and doesn’t want aides attending her class. For some reason Molly refuses to go to music now. We’ll be addressing that at the IEP this year (only because i don’t trust myself to do it one on one) The fight for inclusion continues with each parent, with each child, in every school, everyday. We may have the law behind us, but getting it to happen is another thing altogether. The old ways seem to prevail in reality and since she can’t speak
for herself as to what SHOULD happen, she can only respond with rebellion. That is when the mommy goes to work.


Bless all my mommies! I know your battles and your worries with ’our kids’ and we fight together.


Spring Break. It feels like winter here, and I don’t get to go where I want to be. My friend Amy, is struggling, and that is where i need to be. I need to go take care of her house, her older children, and hold her hand while she walks with her youngest through chemotherapy. I want it more than I want anything in the world. I can’t make Mr. Logic understand that I cannot just sit here while my friend is in Cancer-terror. I have to get there. There will be my peace....doing something, anything to ease her mind.


Cancer Sucks...it sucks for all of us.


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kids at camp starring bill (grey hoodie) and angela (blondie) big brother josh (cammo) and wife amber (stocking cap)




3/16/08 Impromptu camp at Noblett

I've lost an hour and ALL THE TOILET PAPER!!

I don't know where it's gone! Have I lost the toilet paper? or maybe just my marbles???

Do you remember summers as a child? How they were endless, how there was never a dull moment, how NONE of it was spent inside???

We spent all day at the city pool without sunscreen and were just brown as beans. Melanoma was not being a word anyone even heard of! On a good week, I could escape to the lake with the Goracke's and spend my days on the little island out front of their summer cabin....or learning to ski with all her brothers.

We played football on the Morton Grade School front lawn in the evenings, and spent every free moment for a week, helping the carnies set up the midway at the annual fair! Our payment was getting to test the rides when they were finally assembled. There didn't seem to be any drugs or child molesters then. My little brother and I could ride the "hammer" for a half an hour straight without puking.

We rode bikes until the street lights came on, and that was our signal to head home. We ate supper together every night, and left a ring in the bathtub at the end of the day that needed a jackhammer to remove.

There were no cell phones and mom didn't seem to mind that you were gone all day, and DEFINITELY didn't worry about it. If there ever WAS some injury that occurred, Mrs. Wheeler, the boy scout leader, lived behind the school, and the Hampton's and Brandenburg's moms lived on Walnut. Mrs. Brandenburg was the girl scout leader. Dale Wenburg's mom was down the street a piece, and Susan Hawk's mom was around the corner from there on Adams Street.

If you got hungry, Mrs. Rodriguez, who couldn't speak English always fired up fresh tortillas down on the corner at about 3pm. She must have fried a million of them daily and fed all of us. We knew what 'that's enough' and 'go home' was in Spanish.

If you got thirsty? Somebody was always watering their lawn, so there was a cold drink on every block, as well as a mid-day shower. It was common to not only drink out of a hose, but to drink out of a SPRINKLER! The big parental threat we ever got for doing that was the chance at getting Polio! (Also threatened when caught wading in summer flood waters or eating dirt)

I knew the layout of every house on the southside, inside and out. Every mom knew who I was, too... they knew all of us. That's probably why there was never any big mischief or vandalism, either! Those moms kept a close eye on things.

As you grew and became of high school age, you realized that the endless summers were now shorter. The long, lazy days were replace by jobs at the local super
markets and plans of spending the fruit of your labor....CLOTHES SHOPPING!!

Your time was now spent picking out your fall wardrobe. You needed a fall wardrobe then, because school started in September and in Nebraska it was chilly...not in mid-august, at the height of the 'dawg dayz' as it does now in southern Missouri.

All the stores closed at 5pm, except on Thursday nights. Thursdays the downtown stayed open until 9pm, so that all the farmers had a shot at getting to town and doing some shopping. Thursday nights were the social event of the week for teens...we walked around downtown.

This morning's muse is born because I still have clocks that I don't have to reset. It seems the time just 'fell back' last week, and I really did intend to get to it. The toilet paper? Same deal... I thought I just bought 12 rolls last week, but since there is but one roll servicing three bathrooms today, maybe that also happened last month.

I remember realizing my summers shortening because that is how I see my DAYS now...they slip by in a heartbeat. It's time to fix supper before my breakfast dishes are done and it is not unusual for me to find dried clothes in the washer...DRY? weren't they just washed this morning? How did I space off a load of laundry?

WHEN DID I GET OLD?? I used to be hot, you know...hot hot hot...all the time, the party girl in the mini skirt, the class clown, the first one to try ANYTHING!

NOW? I pass by the mirror and wonder when the 'Pod People" slipped in and replaced that body with this one. NOW? I am still hot....but I hear that some
hormone replacement can help with that. I have gone back to wearing glasses, because my eyes are not aging gracefully either, and I can't have the pretty contacts, and see the itty bitty NDC numbers on the stock pharmacy bottles at work.

What happens now? I still haven't learned how to keep my house spotless and well-decorated like my southern-born peers...I still haven't learned how to sew or quilt...I haven't gone back to college to finish up my education, no skydiving and haven't been to Europe. I still want implants....but instead of implanting what I ORIGINALLY wanted too??? Now, it's going to be a couple of TEETH!

WHAT IF I RUN OUT OF TIME??

Man, THAT'S a scary thought, I AM getting old!

So, this morning, I may just go ahead and buy those outrageously expensive plane tickets and take that little trip next week. I may go book that big trip to Dublin, to the NDSC World Conference in 2009, and maybe I'll go cut that stack of old jeans up into 12 x 12 squares,
and start that quilt I planned on doing in the 70's......

right after I go restart the washer, and get to the store and buy more toilet paper.
*******************************
For Posterity...

Molly had a blood draw as she is still puny after 3 rounds of Anti-bi's and all is well with those counts. I just need to get her healthy and strong again, and back into the routine of school. Her attendance last week was
ONE-HALF DAY. That was due not only to the flu, but to the spring snow storm we had.


My dear friend Amy in California is prepping to start the chemo with her beautiful little boy, Ben Lee. They are still in the WTF??? period of learning that his headache was more than a little Tylenol was going to fix. I'm still
angry that she's going through this, and angrier that she doesn't have to explain the numbers to me, as I have walked this path with TOO MANY PARENTS!

1 in 300 babies are diagnosed with some form of pediatric cancer before the age of 21....so if you've been lucky enough to dodge it....count your blessings, and give generously towards a cure...or to this family. (email me for details on that)

We should be back into starting spring weather this week, AGAIN, although it is not going to be pretty this year, AGAIN! Our winters seem to be dragging out later and later and leaving the brown death in the path of what was green starter blooms. I see the global warming more every year...it's not a joke...it's not a threat...it's not a political ploy. It's happening and all of us need to start living smarter.

Gabe came to visit yesterday with college friends scouting on high school basketball teams. He looks great, and his friends seem to be adorable.(Always a parent worry)

Shauna still hasn't called.

Bill is working hard to be done with working hard. I think he wants to come back home to a place that is much like the place I grew up. It's nice to know that one of them is realizing the beauty of living in a small, rural community....and why I stayed to raise them here.

Have a great week!

People Watching

*For Posterity*

March has come in like a lamb....we're having beautiful, warm weather today but have another impending snow storm due in on tuesday. This is the worst winter I can remember!

I would be out enjoying it, raking the leaves off my little yellow spring flowers poking thru....but molly is down again. I hesitate to call it the flu...but she's been spiking fevers (102) and could drown in those little liquid lungs! Given it's viral...we have to wait a few days before we make the trip to the doctor. The 'mommy-waiting-game' ..too soon? no antibiotics... Too late? Pneumonia!

I was stroking her hair this morning as we waited for the IB to kick in. It is so hard trying to explain "sick" to her. Instantly my thoughts and heart went out to Amy, and Nicki, and Susan, and Renee and Nancy Levin, and Mimi...and all the other moms out there that have to deal with so much more than 'the flu' They have to try to explain to their innocent babes why they are allowing doctors to pour poison (chemo) into their bloodstreams.

Please take a second in your busy days, and remember these children and their parents in your prayers. We offer up all our discomfort and worry for them.

Kudos go out to Gabe, who is taking advantage of the nice weather and moving his new family-in-progress to a better living enviorment. I'm very proud of the daddy he has already become...and proud that he continues on with his college studies. He's taking care of the future. Sorry I couldn't help Gabe, totally intended to, but sick-duty calls.





PEOPLE WATCHING

When a 'typical parent' sees a family with a child of enhancement in public, there seems to be 4 general types of reaction. They all involve 'the looks'

I should say my sons coined the names of most of the looks we get, and trust me, when you were making 'that' look at us...you were getting your own 'look' back!

THE PITY FACE

This is from the well-intentioned, liberal-minded, faith based looker. They know that they should love all creatures of God, and *sigh* isn't it just too bad about that little kid. We deserve lots of pity prayers.

Now, don't get offended...im a liberal, faith-based individual, and probably threw a few 'pity faces' of my own before Molly...that being said...GET OVER YOURSELVES!! We need no pity, nor deserve it! There is NOTHING 'sorry' about the birth of this child. SHE'S PERFECT!! really. I know you don't understand it....but to us she's perfect! She IS what the Father imagined when he wanted to create the perfect human. She may not ever be a rocket scientist.....but if more were like her....rockets for war would never be need to be built.

THE GAWKER

No, she is not a circus side show. Stop craning your neck. Stop whispering behind your hand to your cohort. If I thought you had a serious need to know, I'd invite you over for questions, but you don't want to know...you're stuck in high school, and are looking for material to perform at your next cocktail party. Stay away or be punched!

Unfortunately, we see these more than you would imagine, and I know more than I'd like. Do us a favor, reader, and when you see/hear someone ridiculing the challenged?? Express your disgust and just walk away. IT'S NOT FUNNY!!

THE "I HAVE A DOWNSY COUSIN-IN-LAW"

These guys really jerk my jaw. They come running over anytime they find you out in public, YELLING about someone in their family/at their job with a similar chromosomal enhancement. They think because they are related to someone, they are experts, but continue to use the outdated and offensive language that makes all parents with kids with special needs just CRINGE! They unfortunatly, can be YOUR relatives, and spout their 'knowledge' at family funcitons or celebrations. I have even had a young physical therapist walk up to me at a ballgame, and tell me he works with down-si-an adults!!

ADMINISTRATORS!!

Please learn what's acceptable language and TEACH IT to your representatives. You know I'm NEVER gonna use THAT establishment, and I'm going to steer my friends away from it! CALL ME! I will be happy to guide you along the way.

THE GLANCERS

These are my favorites. If you're a seasoned people-watcher, you catch the glimpsers. These are the people I want to talk to. Their sister has just got the results of the amnio. Their first baby's triple test came back with elevated numbers. They have a need to know. They just glance your way, trying not to get caught, but earnestly seeking out your family's dynamics and interactions. If you watch them long enough, they eventually will glance up at you, and you can invite them over with just a glance of your own.

I had a man walk up to me at the store and ask me about Molly. My "protective" instinct went into code red, and I blew his question off with my usual "she's a real skunk" phrase, and followed up with an appropriate story. (Molly ALWAYS has a new appropriate 'skunk' story)

He backs off a little...seemingly to RECOGNIZE my little dance...explains to me that his daughter was in the other class at school, and was THAT class's representative for 'spring queen'. (Molly, as you all probably know, was elected to represent her TYPICAL kindergarten class, as a princess candidate, at the spring festival) He continues on and says he video-taped the whole thing, and captured a little of Molly....would I like a copy?

Now, at this contest, Molly hit the stage and as a TOTAL surprise to us HAMMED IT UP!! she bowed, she blew kisses...she spun around and totally WON THE CROWD OVER with her 'queeness'. Our camera died right in the middle of it, so I JUMPED at the chance for a copy!

He brought it to me, and we plugged it right into a tv/vcr combo at the store. His film panned around the crowd and he introduced me to his family..."that's my wife" pan pan "that's my daughter" pan pan and STOP. The camera stops on an older man, who happens to have down syndrome.

I turn around and look at my new friend behind me, who is beaming "That's my big brother"

Yep, I'm not an expert at reading EVERYONE, but I've learned to keep a keen eye, and have my speeches ready so that I'm not caught off-guard. Sometimes I get pleasantly surprised.

Today's topic comes from 'talking' to all the women I do online. They have HORROR stories of ridiculous things that family members/friends have said regarding their child with DS.

These "nuevo-experts" scan an article in the reader's digest, and all of a sudden become geneticists! They "know" that this happened because of 'sticky eggs' or 'sticky sperm' (redundancy?) Usually, the parents are SO SHOCKED they couldn't speak.

When the offended parents come into the privacy of their peers, they are horrified not only at the statement itself, but at their own impotency in rebutting it! They feel as if somehow they just failed their child.

So, moms and dads, this one is for you. Print it out, leave it lay around,or maybe cut out the thing that relates to you, and stick it into the offender's windshield!

For the rest of you? Come and ask me right up front if you have questions. I'm going to know if you have the need, and am happy to help. We WANT you to know what's going on, and how we feel. Our kids are just like your kids. Molly is just like her sibs. She has the same quirks, the same humor, the same flu. The only thing different about her is my protectiveness. It also seems to be enhanced with this child.

Just remember, these children are more precious to us than life itself. Treat them as such and we'll all get along jussssst fine!