Monday, July 27, 2009

Immediate need of prayer

UPDATE (7:30 pm)
Boston is on hold - possibly indefinitely. Please pray for clarity in the doctors decisions. It is not easy by any stretch to have the plans for your baby's care change so frequently!


UPDATE (11:43 am)
Stellan will be airlifted to Boston. This is good news in that he can still be sent. It is bad news in that it means he cannot be cared for here any longer. Please pray for a safe trip and clarity for those who will care for him during the trip and once he arrives!



Stellans family has been called to be by his side. Now more than ever, if you pray, or even if you do not, please hold this sweet boy and his family in your hearts and prayers!

I pray this is only a hurdle, and not Gods will.

Sunday, July 26, 2009

I call on you all - Stellan is very very ill



And is in dire need of your prayers! He is not taking to new meds well, and is under threat of ventilation.


I could go into great detail here, or send you directly to Jennifers blog.


Please, if you have it in you, pray for this sweet little boy that has worked his way into our hearts and lives. It has been a long hard struggle since before birth. His heart is in need of peace and healing!


If you are in the mood and have the ability, join in the WEAR ORANGE FOR STELLAN MONDAY MOVEMENT started by the My Charming Kids Community as well!


BlogFrog users, you can join the prayer chain here. If you are not a BlogFrogger, but want to join in, you can register under the My Charming Kids community.

Wednesday, July 22, 2009

Why I Relay


I was asked this afternoon: "with all the other projects you work on, why do you also Chair Relay For Life? Isn't it a lot of work?"


My answer: "yes it is, but would you step up and do it if I didn't?"


His answer was: "no, I already have too many irons in the fire, and it just isn't something that I feel I need to do"


Something that gets to me much more than most things is people who rush in and complain about all of the things they had to do today. All of the places they had to go and how much time it took them. I typically do not do this for one simple reason... I am a volunteer. I do not do it for the notoriety. I do it because I care about people, I am passionate about causes, and most often, the things I volunteer for enrich my life more than just sitting on the sofa flipping channels (which trust me, I do plenty of!).


I imagine that if I walked into a crowded room and tossed a stone I would hit someone who has been touched by Cancer. Most of us have. If you have not, you are so very lucky and should cherish that - I envy you.


I have been touched by Cancer. I lost my mother to Cancer 8 years ago. I have watched 2 of her sisters fight the same form of Breast Cancer.


I have been touched by Cancer. I am a 5 year survivor of non HPV Cervical Cancer. Tomorrow I am having a suspicious lump examined.


I have been touched by Cancer. I have lost friends to Cancer - some younger than me. I have lost neighbors, and family, and acquaintances. I have watched children battle the disease and mothers leave their children when their battle was lost.


I Relay not because "they" don't have the time. I Relay because I want to have more time. More time here with my family and friends. I want my children's losses to end. To lose their grandmother before she got to spoil them isn't fair. Mantha was the light of my mothers eye's. Jadon was her dream (he was born 12 months and 9 days after she died).


I Relay because I want them to have more time. They have a 50% chance of carrying the same gene I carry. I don't ever want them to know how Cancer feels. I want a cure before there is ever a chance for them to have a diagnosis.


We need research to find a cure. Research costs money. Money isn't growing on the tree out back, so that means someone needs to raise it. THAT is why I Relay!


I live in a small town in a small county. A county of less than 14,000. A county that is number 1 in the Midwest for funds raised (per capita) for Relay For Life for 5 years. A county that has been in the top 5 in the nation for funds raised (per capita) for Relay For Life for 5 years. Next year our little county will have raised over 1 MILLION DOLLARS for Relay For Life. I would not miss that for the world!


Ok, so I do like to toot our horn a little... but remember that statement about doing something that enriches my life a little more than watching tv? Can you top knowing that you have been a a part of something that is not only amazing, but also helping the people you know and love survive a horrible disease?


THAT MY FRIENDS IS WHY I RELAY!


And I will be Relay'ing all night long on Friday! (so will my city pally Kim in case you wanted to know!!! THAT is the cherry on top of the whipped cream on top of the ice cream!)

Monday, July 20, 2009

MckBrunch Photo!






Tell me this doesn't look like the "it" spot to be! Look at all those smiling faces! Seriously, the smiles are not fake - that is how awesome everyone was!! Sadly there were a few people that missed the big picture...

Because I talk about her all the time, I feel I need to introduce everyone to my friend Jennifer aka MckMama - she is in the long skirt on the left side. Jennifer's beautiful sister Hilary is standing next to me in the red - I was so excited to have her recognize me in the sea of faces and get excited when I weeded through all the people to give her a hug!

If you if live in Minnesota, or get the chance to visit, you have to make a trip to the small town of Waconia (I guess when I lived in the cities it was a "town", now it is a small suburb) and dine at the Green Room. It was incredible.

Thank you again to all the lovely ladies who came together to spend an amazing (and beautiful weather) morning.

Sunday, July 19, 2009

forty five

Its not really ironic that I have been experiencing a lot of 45 this weekend. In fact, for the most part 45 was planned for this weekend!

Throw a little irony in just for fun, and you have a wonderful weekend of 45!

Today was MckBrunch day! How amazing were the 45 women who I was lucky enough to spend 2 hours and 45 minutes with! (we were scheduled to be together from 10-1, but I left at 12:45 - not on purpose - I just followed my table mates out!).

Friday and Saturday I spent the majority of my time creating 45 bracelets. Orange bracelets to be exact. MckMama's favorite color for sure. For 45 ladies.

I arrived this morning - you guessed it - 45 minutes early. I spent the first 20 minutes driving around the town we were going to be dining in as it had changed immensely since the last time I had been there. The last 25 minutes I sat in my car waiting for another early bird to arrive. I couldn't be the first to arrive now could I?

I sat at a table with not 45, but rather 8 very sweet and kind women - women I had never even visited blogs of before (sans one who I visited once), but women I am excited to talk to again very soon! Two who are expecting their third and sixth babies within a week of each other, the beginning of next month.

There was a new Target to the small town we had brunch in, so I decided to wait out the arrival of Mantha from her dads wandering its aisles. For about 45 minutes (ha!) I shopped - casually - unrushed - and ever so often, I ran into two of those table mates I spent a wonderful morning with!

Can you guess how many minutes I waited for Mantha and her very lost father in the parking lot of Target? Yep. You guessed it!

45.

I did not however spend $45 at Target. I only spent $40...

To my table mates... Tina and Amy - I wish you much luck with healthy deliveries! You can bet I will be checking in on you! Jessica, I will be praying for a miracle to bless your family! I hope to hear wonderful news soon! Amy, while I didn't attend the same highschool had I known I would have met you - well, you know - we could have graduated together!), have a blast at your 20 year reunion!

Oh, speaking of almost graduating together... Jessica and I DID graduate from the same school in the city. She two years behind me - which means she graduated with my brother and Mantha's step mother. Amy and I would have been in the same class as we grew up not more than a mile from each other.

Amanda, I will be checking in on you more frequently, and hope to some day get to try one of those tasty cookies I missed at the MckPicnic! Your baby was ADORABLE!!!

Kerry and Yvette, while I didn't get to talk to you much, I am really glad that we all share a mutual friend in Jennifer (MckMama), and hope to get to know you both more in the future! Kerry thank you for making copies of the blog and email lists for all of us! That rocked!!!


To all the other ladies in attendance, thank you for the sweet compliments on the bracelets! I am glad you liked them, and hope you enjoy them!

Cami, thank you again for organizing a wonderful event!

45 thank you's to end my 45 post!

Watch this week for a photo of the gang! It was worth the wait!!!

Tuesday, July 7, 2009

What trouble looks like when it brews...

So remember a few weeks ago when I showed you what a storm looks like on the prairie? Well that was nothin!

Tonight while loading cars full of Relay T's because no one showed up to the meeting - could it be that they got the wrong date on the email that my friend sent? Um, possible...

Or maybe they knew THIS was coming (and we didn't)...

I took these pictures as I was driving home - with sirens, and lightening and bears (ok, not bears) oh my!


This was what I saw as I was pulling away from the building I was ignorantly hiding out in. This wasn't night approaching ladies and well, whoever actually comes here to read... This was clouds.


Like waves in the sky they were. it was a might bit freakish.


This is what had the nerve to head towards my little family at my little house on the prairie...


This was what I saw from the end of my driveway.

So that my friends is what a storm looks like on the prairie.

In case you wonder if I am still here or not, well, this "storm" was more bite than bark. We are still comfortably located in SW Minnesota and not in Kansas.


Or Maine... where it has rained non-stop for 3,972 days straight. ME and Hallie, I will take a few of these over THAT!


Pally, I promise that you will be residing in the safest room in the house when you come! I also promise not to invite any of these little disturbances while you are here!

Friday, June 26, 2009

Ba-Bye!

We are off tomorrow afternoon as soon as our town celebration and parade end for the day. Have happy and safe 4th's and we will see you in a week and a half!

BIG stuff happening in July!

My county's Relay For Life is set to break 1 MILLION DOLLARS this year. In case you are not aware, I live in a very small town - in a very small county of less than 14,000 people. So this milestone is huge for us. I am the Chair this year again, so I am rather stoked to have it on my watch! I am even more excited to have my Pally coming down to spend time with me and help me cheer on the 1 MILLION!!! I hope she is ready for a long all nighter! It will be so much fun!

MckBrunch is the Sunday before Relay and I am so excited! If you don't read me often, you may not know about my friend Jennifer from mycharmingkids and her miracle baby Stellan. Well in a few weeks a BUNCH and I mean BUNCH of us are converging on a restaurant in our State and having a what I can imagine to be amazing morning and afternoon sans kids and husbands - you will hear the buzz of chatter from wherever you are!

Our counties Fair is also in July, so every weekend is packed full!

We will "see" you soon, in the meantime, be safe, enjoy the holiday and PARTAY like rockstars!!!

Wednesday, June 24, 2009

This week in pictures

Its almost vacation time! I get so excited for this time of year, and usually come back and plaster thousands of pictures of our adventures. So to prepare you for the onslaught, here are a few of our pre-vacation antics...


I had an awesome video on my BlackBerry of my son and our cat Toby - the cat with anger management problems, but apparently I need to learn how to use my phone, as I saved it as a photo and not a video. I will share the blur and you can imagine the rest from there...


Toby has for some reason had a love hate relationship with Jadon for as long as he has ruled our roost with his evil black twin Ruvy. Toby will sit on the edge of the sofa and howl at Jadon as he walks by while swiping at him. It gets to be a fun game for the whole family. Had the video saved you would have seen Toby go all puss-tal on Jadon and shriek every time Jadon walked by.


First, as Jadon and I were cruising home from dinner on Sunday, he was jamming in the back seat and says to me "Mom, my finger is dancing now too. It has ears and can hear the music".

What per say were the "ears"? They were his finger nail which split down the middle and peeled on both directions. You can't tell it here, but it was his middle finger, and the "ears" were sticking out. It was cute, and funny, and disturbing all at the same time.



Last but not least, the remnants of the storm that hit fast, hard and eventually kicked out a funnel in a town not so far away on Tuesday afternoon.


Mantha and I were at the Golf Course meeting with the rest of my tournament committee when it went from sunny to black, green, freaky. This was as the storm was leaving - the back end of a wall cloud.



We need to get through our towns celebration before we leave, so I am wishing those days away... I know it will come soon enough, I just hope the weather is nicer next week!

Sunday, June 21, 2009

The many faces of fathers

Today I received a phone call from someone that I never expected to hear from on Fathers Day. That phone call changed my mood, made me happy, made me proud, made me cry. That phone call made up for so many days when I wondered if he really did care. Today I found out how much.
But I will get back to him in a moment.

First I want to wish a Happy Fathers Day to the two most important men in my life:

The man that gave me life:


He may have chosen to go on a 6 week vacation to Alaska over having Brunch with his stunning daughter, but that doesn't change how much I love the man! Happy Fathers Day Dad!


The man that breaths life into me every day:


There may be some days when he acts more like our 6 year old than like a father to our 6 year old, but I still love him! Happy Fathers Day hon-e!

I want to wish a Happy Fathers Day to two men who brought me so much happiness and joy, but are no longer here with us:


The man that made my mothers last years her happiest:

Bruce was my step father for 12 years. He came into my mothers life at a time when she needed someone to love her for who she was, not for what she had been. Bruce did that. He took away the sadness that had surrounded her for many years, and brought smiles and laughter and joy and excitement. He made her last years her best years. Even though they married when I was 24, there was never a doubt in my mind that he would be a father to me.

The only man I ever got to call "grandpa":


Grandpa Lawrence swept me off my feet the first time he met me. Literally. I dont know who he thought I was the first time he saw me, but I will never forget that incredibly strong bear hug I received in place of a hand shake the night Jim took me to their campsite the first night I met him. Those hugs never ended. He called me his girlfriend, and he my boyfriend. He was the only man that I ever had the honor of calling "grandpa" and I will never forget him.

Now back to the phone call today.

I sent texts to all the men in my life, whether friends husbands, or family members, to wish them a Happy Fathers Day. One I had to send to my aunt because my uncle does not have his own cell phone.

Several hours later, while driving home from getting Mantha, my cell rang. When I answered it was Larry's voice on the other end of the line thanking me for my message. Then thanked me for alllowing him to be a father.
There was no thanks needed, not from him.

I was pregant my senior year of highschool. I was confused, in denial and hid the pregnancy from everyone - my parents, boyfriend, friends, everyone - until I was 7 months pregnant. Somehow my mother figured it out, even though I was spending the summer 1500 miles away. She had conversations with her sister who could not have children about the prospect of them adopting my baby.

When I came home from my summer away, I sat down with my aunt and uncle. I will never forget the tear and fear filled conversation. I remember their fears. It was not as easy as saying the word "yes". It was much more complicated than that. Even after they took custody of Alex, there was fear. Fear that I would spend too much time with her, that I was too close, and want her back.

I have wondered for years, now that their baby was grown, how he felt about me. I knew how my aunt felt. She tells me all the time. I know how Alex feels, I can see it and hear it in her voice when she spends time with Mantha and Jadon.

But until today, I did not know how Larry felt.

I may have given them something they couldn't have, but they gave me so much more. They gave me peace. Peace that my child would know love in a solid happy home. She has travelled the world, and never wanted for anything. She is getting a top notch college education, and is studying abroad. She is kind, and loving, and has morals that are not often seen in kids her age. That did not come from me. That came from them - her parents.

So today, as I wished Larry a Happy Fathers Day, I thanked him back. I thanked him for trusting me. I thanked him for allowing him to be the father my child needed and deserved.

Its been 21 years in the making, but on this Fathers Day, we finally know how much the other means.


I hope all the fathers in my life know how much they mean to me.


HAPPY FATHERS DAY!

Thursday, June 18, 2009

He had a heart

That was bad. So 6 years ago, he got a new one. From a Donor. An anonymous person whose life had ended. A family who was willing to carry out the wishes of a loved one. A decision I cannot imagine was made lightly. A decision I cannot imagine would ever carry regret. For in one loss came anothers salvation.


I do not know this man, the recipient of one of the greatest gifts one can give. I have never met his daughter Hallie, but I know her. In the sense that all of us in this blogging world know each other.


This is Hallie's dad...

Today, I am sharing Hallie's fathers story through her letter because Hallie is raising awareness and is hosting a fundraiser for her father - and its Fathers Day this week, and my dad took a 6 week vacation to Alaska over brunch with his spectacular and stunning daughter (that would be me in case you got lost in translation), so I will spend time helping Hallie's dad!

This is Hallie...


She loves Prada. She would love Prada to be donated, but because she loves Prada so much, she knows full well that the Prada that was donated would get lost in the mail and would never make it onto the list of items for which to be raffled, therefore, I will NOT be donating Prada!


I will however send these two pieces of jewelry I made. That she chose. That may get "lost in the mail" but at least won't cause me the need to explain to my husband why I donated something that cost him three arms and two legs that met its unfortunate demise in the USPS solar system (aka Hallie's Prada shrine).


So please visit Hallie's Blog because she is hil-hairy-ass! Then visit Hallie's Dad's Fundraiser, and see what you can do to help her Dad enjoy even more Father's Day's and get yourself signed up to win something amazing (just don't expect Prada, I already told you, it got lost in the mail!)





Thanks in advance from Hallie and her Dad for taking the time to check our her fundraiser, and for that Prada bag that I just know you want to send to her!!!

Wednesday, June 10, 2009

wisconsin wildlife vs the baums

I tell ya, if it weren't so dang funny I would probably think there was someone behind the antics of the first 15 rural miles of our trip to Wisconsin.

First, out of thin air, a doe trots across the interstate - not in front of anyone else - but in front of the baum-mobile.

Not 5 miles later we all turn to look at the buffalo on the prairie to our right (picture Lori holding a box of crackers - not the type that opens at the top with a nice safety bag, but rather a box of Archer Farms crackers that has a large open tray... got that picture in your mind? good...)

SWACK!

A pheasant hits our windshield DEAD CENTER, and yes, I mean dead. Like dead. As in now on someone elses tires.

Remember that box of crackers?

ALL OVER the car.

Cuz Lori gets a little jumpy and she literally tossed her cookies crackers. Everywhere. As in EVERYWHERE.


The defrost when turned on shot up cracker crumbs.


When I do something I make sure I do it right the first time...


Then....


Mr. Squeaky of the Squeak family - you know the one, that cute little field mouse family that lives right over there? Yeah, well we are not the only ones attending a funeral tomorrow morning. Because Mr Notsqueakyanymore is now part of the pavement on that same interstate.


I wish I could have recorded Jim's exact words, facial expression and tone when he made the statement "I dont like Wisconsin any more". It made me laugh so hard I almost pee'd my pants. Which honestly would have gone unnoticed in the tornado that became the interior of my car!


My pally Kim D of the Kim Writes Kim D's thinks we have something against nature and the hunters of this western land. She also thought however that when I said the "wildlife around these parts was trying to kill us" meant the U of W students... I heard they were wild, but didn't think they were viloent. I guess we will double lock our doors tonight.

Oh dreary rain, please go away!

It has rained EVERY DAY since Thursday. Not that I am complaining - ok, yes I am...

We need the water, but its has been this heavy mist that persists and ruins your hair and makes you want to sleep all day. We got a tease - literally - 10 minutes of sun yesterday. Then promptly we went back to drear.

My mood is already south, so I need the sun to boost it back up again.

Pally, we may have a little one in tow Friday - I know you are ok with it - but wanted to warn you that he will probably be our date at lunch and a flick on Friday!

Monday, June 8, 2009

Spread your wings sweet girl and fly

I have started and stopped writing this post all day today. It is a hard post to write because it is so unjust.

Eternity is someplace far away. It is not supposed to be in the today, not in the now. Lately however, eternity, that peaceful place for most, seems to come sooner than it should.

Dear sweet Lauren Marcella passed away just after 4 this morning. She was not yet 3 years old.

On Thursday night Lauren spiked a fever of 107.5 (and as her parents said on her Caring Bridge site, this was not a typo - 107.5!) during a grand mal seizure that lasted over an hour and 45 minutes. It took many meds to find the right one to calm her tiny body. On Sunday she was starting to wake up and things were looking positive. Sunday afternoon it changed. Horribly. They airlifted Lauren from Wisconsin hospital to Children's in St. Paul (the same one my son was at two years ago) and a short twelve hours later she was gone.

Lauren was a miracle. She started her life struggling. She was born with a severe cord wrap that caused Cerebral Palsy and a Cortical Visual Impairment. But man was she a fighter! She was so beautiful - always smiling and giggling.

Laurens birth literally saved her mothers life. Knowing that a cord wrap was possible, Lauren's baby sister was born via C-Section. During that C-Section, ovarian cancer was discovered in her mother - at a stage that was curable - a cancer that could have gone unnoticed. A miracle.

Eternity should not be so close for a child who has barely touched this Earth, but she is fully healed and bouncing on the clouds with strong legs, bright eyes that can see the beauty and a body that no longer fights her.

Be at peace sweet girl.

Friday, June 5, 2009

Once there was a friend...

Now a foe?




This little guy made his home in my hanging basket last summer - around this time. Sadly, not much after this picture, his siblings joined him and they KILLED my flowers (there were 3 more just like this one).


So I took the baskets away.


And bye bye birdie.


BUT...


I think he is back. And he is mad. A mad pooper that is. Seriously, our deck, grill and house look like WWIII has hit with little white "bombs" every where!


So how fitting that last night I happened to open this picture and the kids ask "mom, is that the bird that is pooping every where?"


I do love the picture even if the little stinker has gone all swine flu on me!


Pally? This is just a snippet of what you will enjoy when you visit "St. Jim" next month!

Thursday, June 4, 2009

Shipped

And I thought I got impatient during pregnancy...


Now I can only hope that DHL is the winning recipient of my new beauty. For if it is them, I expect "she" shall arrive tomorrow morning! If the big brown truck was "her" fate, I will see "her" sometime next week.


Oh the anticipation!!!


UPDATE...

White truck, not brown. Not yellow like I had hoped.

Oh well, she is still on the way home!!!

Monday, June 1, 2009

Not Me! Monday

Its been a while... I think of them every week, they just never make it here... Slacker!




In case you do not remember the blog carnival of Not Me! Monday, check out my good friend MckMama's blog - she will tell you all about it - because of course, its her circus baby!

So many weeks, so many things I didn't do... But because you don't really want to hear all about them, I will keep it local (to this week that is).


I did not revert back to my old ways and eat Cheeto's for breakfast two days last week. I did not do that because it is wrong. Just wrong!


I did not stay up all night last Monday night after Jim said those to magic words "go ahead"... Now don't start thinking nasty things people - that was the night that I ordered my new beauty that is coming very SOON!!!!


I did not actually write in that post that I would have a tiara and lipstick ready for her when she arrives this week.


I did not call her a her.


She is a laptop, not a her.


I did not beg, plead, bribe and eventually toss my hands up in the air and let go of my over controlling mommy'ness when Jadon walked into my room this morning wearing this:





Insisting that it "matches". I did not laugh a little and really wish there was something more I could say that justified my desire to change socks. But really, are they hurting anyone? Its just daycare right?


Yes, they are green and blue striped alligators. Thankyouverymuch.


I did not just eat the left over Milk Duds from the movie we went to yesterday.



We did not spend over $75 for 4 people to see Up. It was such a good movie by the way, but HELLO, $75??? Were those seats and popcorn made of gold? Unless your children can chug 83 gallons of Sprite in just under 2 hours, do not, I repeat, do not purchase the "family pack". I do not believe any of us ate all of our popcorn or drank all of our beverages.

But I digress... we all have to make that mistake once right?

At least we did not forget the popcorn salt. Of course I did spill it in my purse as I always do...
I did not leave this post unposted since 8:15 this morning...
Ok, I did.
HAVE A GREAT MONDAY!!!!!!

Wednesday, May 27, 2009

You've come a long way baby!




I remember it well. The first ever IBM Portable Computer - the IBM 5155 circa 1984. I remember it because my mom worked for a company that sent one home with her when I started college in 1989. It was cumbersome. VERY cumbersome. Of course it was also DOS back then, and the matching printer? Remember the spool fed paper? Yep, one of those!


After I graduated from college I worked only on computers at work. I didn't even own a computer in my home until 2000. Desk tops. Clunky heavy ugly desk tops. Back then I was addicted to IBM. I don't know why.


Now, we have 3 desk tops (one Dell, one IBM, and one Gateway [my moms company donated it to Mantha when mom died. It was her computer at work. Of course that was 8 years ago, and moves slower than a turtle in a blizzard, but I cant seem to part with it]) at home, two laptops (one is Mantha's - IBM, one is mine - Dell), and next week, we will be welcoming my Mothers Day, Birthday, Christmas for the next 5,000 years pretty little pink beauty...





I am a brand shopper. At some point I changed my mind and decided I liked Dell better. There are arguments on all sides - Mac, Dell, IBM, Toshiba, etc, but Dell has yet to do me wrong - and they have lovingly financed all 3 of my purhcases - past and present - with a 12 month no interest, 6% interest after that account. So by Christmas my present should be paid off.


I went a little crazy... (hush now Pally, you are the one on the good drugs...) 5X the memory in my current lap top, better productivity software, WRITEABLE DVD/Blue Ray - look out Napster, you ain't got nothin' on me (BWAHAHA!), and PC Link so I can transfer over my Microsoft and Photo Shop without re-purchasing them. I ordered the 17" screen in case you are wondering... because I am old and going blind and all. And I made sure that there was a 10 key because the numbers at the top of the keyboard are dead to me - I am too clumsy to use them - much like punctuation - I always have to go back and edit my work!


I can't wait until she arrives. I have a cozy little corner ready for her arrival, complete with a Tiara and pink lipstick.

And since its all about me ya know, I do have to admit that I said I 24 times in this post.
Sue me! Bwahahahaha!

Tuesday, May 26, 2009

I am feeling better today - actually I have been feeling better. Sometimes you have to get the crap out so the resolve can come in. And the resolve is here. There is no avoiding anymore, because if I do, then any future failures are all on me.


I have been working on schedules and plans to keep her busy, but not too busy. Keep her under supervision but not feeling like we dont trust her. Coming up with projects she can do with me at my office - because she loves working at my office - this summer, and "helping" my friend Jennie at her daycare - which translates to, Mantha thinks she is helping, when really we are having her "visit" a few hours each morning.


I talked to school again today, and also talked to a friend who is very versed in petite mal seizures and we have decided we are still going to have Mantha tested for them. After the initial conversation last week they fell off the radar - or at least what I was comprehending in the conversation. That is why they called today - to make sure I knew that they still agree it may be part of the issue.


So I called the pediatrician this morning to see what we need to do to get the ball rolling, and the first step is a sleep deprivation study. We are scheduled to have the study done with the pediatrician she used to go to in Minneapolis in August. They were not concerned about getting her in sooner, and were confident that unless we noticed serious issues, there was no reason to rush the study.


So that is that. Its not the end of the world. Its just a big fat sassy slap in the face.


I received two emails and one comment recommending reading "Welcome to Holland". The comment was to "re-read" as she knew I already knew the story.


WELCOME TO HOLLAND
by Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...


When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.


The stewardess comes in and says, "Welcome to Holland."" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.

Friday, May 22, 2009

Things we never want to hear...

I don't often post about my children.


Sure, when there is something really funny, or really irritating I talk about them more here, but I don't overly share because there is this underlying sense of failure - failure at my relationship with my daughter. In order to not feed on that failure, I don't share a lot about either child so that no one gets the sense that I favor one over the other.


Today that sense of failure was replaced with a sense of fear and overwhelming guilt. Guilt that while I have seen the signs, I did not know there was more to it; guilt that I was punishing behavior that was not in her control. Fear that we are embarking on an adventure that has no end.


My friend Dayna would tell you that I have struggled with this relationship for a long time and probably have been avoiding the truth for even longer. I have made excuses for why I thought it was happening, even blamed my early relationship with my mother. She understands the fear of knowing there really is something wrong, she has held my hand, listened to my gripes and supported me for many many years.


Today she listened again, this time to the diagnosis. Through a text. Because I didn't have the voice to speak it.


For those of you who "know" Dayna, you know that she has been thrown so many obstacles, and fears, and diagnosis', and illnesses with all three of her children. This is so minor compared to what she has had to hear and experience. Yet she still said she was sorry. Still held out her hand, and still offered support.


Today I was told that my daughter has Aspergers. My highly intellegent child cannot tell you why she knows what she knows because she cannot process it. She cannot complete a task without wondering why she started it, or how to finish it. She doesn't understand non verbal cues and cannot process emotion so she takes offense to just about anything that could even mildly sound offensive. She is THE top math student in her class. She even outranks many of her upperclassmen. But she cannot complete homework because she cannot put to paper what is in her head. She does not process process.


She has been reading several grades ahead of her peers since pre-school. She can spell better than most. But she cannot write an essay or spelling words correctly. She is not dislexic, she just does not have the same ability to process the work from her mind to paper that most of us do.


She gets straight A's on her tests. She fails on her homework. Why? Because most tests are multiple choice. She knows the answer, but she doesn't have to explain it. She only has to select it.


She is however highly artistic. Incredibly so. She is very creative. She can write poems and fantasy because there is little problem solving. There isn't a process. There are just words that sound nice together, and her works are amazing as seen in this post. Her pencil drawings are so realistic that you would think a highly professionally trained artist drew them.

But, she cannot complete more than two commands in a row. She has to stop, cross it off a list, and move on. If verbally told to do a series of activities, 7 out of 10 times she will not remember most of them. She does not understand how to finish an activity - ie: when she puts clothes away and runs out of hangers, she does not look for more hangers, because once the hangers she has are gone she believes she has completed the task. The clothes are not the task in her mind, the hangers are. When she vacuums she does not put the vaccuum away. Not because she is lazy, but because the act of vacuuming was the task, and once done with the task the rest does not process.


All of this was enlightened to me today. I always thought she had lack of concentration, or didn't care about the task she was performing, or was lazy, or even that she didnt pay attention to detail. We are always asking her to finish what she starts and not do it half way. She has always told us she didn't know she hadn't completed the task. Today we were told why.


There are many things we never want to hear as parents. There is a difference between knowing there is something wrong, and hearing there is a name for it.


As I educate myself more on this Syndrome, I find that there is a lot of fear read into much of what I am finding. The biggest fear is that Aspergers is a highly functioning form of Autism.


In preliminary IQ testing, she is testing way over 100 - close to 150. They expect that when she is actually tested this fall, she will fall closer to 180. Knowing that she is highly intellgent makes this harder. Knowing that social and common sense skills are very low is even harder. The things that I thrive on are the things that she will never possess.


It will be a long and bumpy road, but we will get through it. She is healthy otherwise. She is beautiful, and she is kind, but there is something that isn't there, and that is what breaks my heart. That vacancy in her eyes, that lack of true emotion, knowing that she has to force herself to laugh or cry not because she feels or understands the emotion, but because she see's others experience it, and she believes it is what she must do.


I love her more than she will ever understand. I hope one day she will. I hope one day the frustration that has built a wall between her and I will crumble and a new understanding and acceptance will take its place.


I wish for harmony and peace and love. No more guilt, no more fear, no more failure. No more withdrawing, stronger self esteem, and a future that is bright and makes sense.

Monday, April 27, 2009

Happy Memory-versary


Happy Memory-versary to a very special friend. Someone who has loved so much and lost so much more. Someone who took more than half her lifetime to find the one. Someone who had to say good bye to him far too soon.

May she find peace and love in all the memories of his sweet life, and find joy in what they had together, and what he left behind for the rest of us to share in and love.

Happy Anniversary Pally!