Tuesday, September 30, 2008

Finding the good...

So I am going through my photobucket acct. and I did save a lot of pictures... they're small, but they're still memories. I thought I would share a few with you. Here's Keeghan as a baby, wasn't he SO cute?! (He's cute now too, just in a toddlery sort of way!) They're a good scrapbook size anyway... *sigh*









Gone Gone Gone

Drive Savers called and they can't recover ANYTHING off my old hard drive. All my pictures from 2008 are gone. All my pictures of Kennedy and Keeghan from May 2007 forward are gone. All my original writings... poems I wrote... birthday letters to the kids over the years... letters to the kids teachers on the first day of school... all gone. I really just want to throw up right about now.

Those of you who said you can erase the water mark off pics, if you're willing to help me I would be forever grateful. Please email me. Thanks

Monday, September 29, 2008

Chili's

Did you go to Chili's?? YUM!!! I thoroughly enjoyed my chicken soft tacos! There were 2 radio stations there promoting the event, I thought that was pretty cool! My mom, the kids and I all wore "team" shirts of kids with cancer. My mom wore one for Julian, I wore one for Charlie, Kassidy wore one for Logan, Kameron wore on for Matthew. Kennedy wore a Team Kennedy shirt from last year, and Keeghan wore a "Cancer Sucks" shirt. That just about sums it up, huh?!

Here are a couple pics, and our peppers that we created while we were there! There are a few new peppers in this post as well.







Who would play you?

So my friend Courtney asked on her blog, in the movie of your life, who would play you?

I would definitely choose Reese Witherspoon. She's fun and bubbly, I know she's a Christian, she's a great mom, a fabulous actress, and she's skinnier than I am which would be SO important for my movie! hahaha I think she would do great in the movie of my life... not that anyone would watch! LOL

SO... in the movie of your life, who would play you?! If you blog about it, come back here, leave a comment and add your link!



I'm really just trying this linky thing out for Monday!!! Only 7 days left! :)

Monday Moment for Down Syndrome - I am capable...

Over the last 4 years I have collected MANY poems and stories about Down syndrome and special needs in general. Since a lot of my readers have kids with special needs, I thought I would post one poem or story every Monday. Chances are you'll find one you've never heard along the way!

I Am Capable Of More Than I Think I Am
by Gregg Rogers


Gregg Rogers is an English professor at Pennsylvania State University. He spent 10 years as a writer, reporter and editor in New York and Los Angeles. Rogers and his wife host a Web site for other families in their area who have children with Down syndrome:

“I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time -- beginning with mine.”

Three-year-old Genevieve Rogers has two older sisters and a younger brother. Her first full sentence was, "What's up with that?"

All Things Considered, September 22, 2008 • "It is trisomy 21. It is Down syndrome."
Beyond those words I heard nothing, sitting in the obstetrician's office. The doctor was talking about my unborn daughter, and the results of an amniocentesis. I know there were words after that statement, but I don't remember them. I do remember returning home with my wife and crying on the sofa.

I distinctly remember saying, "I don't want this." I didn't want this situation. I didn't want this responsibility. I didn't want to become one of those parents — the parents of a child with a disability.

People told me, "If anyone can handle it, you can."
"Easy for you to say," I thought.
"God never gives you more than you can handle," they reassured me.
"Really? Then why do people have nervous breakdowns?"
"We'll help however we can," they said.
"Fine," I thought. "You have the kid with the developmental delay, and I'll help you out."

For months I was terrified. My wife, Lucy, and I now refer to the period of time leading up to my daughter's birth as "The Pit." We barely spoke to each other because we didn't know what to say. We simply suffered through each day, together, but feeling terribly alone. And then Genevieve was born.

She spent her first eight days in the neonatal intensive care unit at a regional medical center. On each of those eight days I made the 150-mile round trip to see her, because she was my daughter. I sat in a surgical gown in intensive care, holding her in a tangle of tubes and wires, singing the same songs I had sung to other daughters.

On the ninth day, she came home, and I began to realize that my feelings of fear and anxiety had changed in a way that no prenatal screening could ever have predicted.

I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.

Genevieve recently turned 3 and is doing very well for herself. She runs and climbs on everything and loves to wrestle with her two older sisters and her younger brother. She doesn't have a lot of spoken words yet, although her first full sentence turned out to be, "What's up with that?"

She does have over 100 signs that allow her to ask for strawberries, pizza or ice cream, or tell us when she wants to sleep, or play on her computer. She goes to a regular preschool three days a week and seems to know more people around town than I do. I laugh every day because of Genevieve.

On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don't ever know as much as I think I do, but I'm always capable of more than I think I am.

For More Monday Moments, Click Here.

Where are you having dinner tonight?!

We'll be at Chili's!!! All day today Chili's will be donating 100% of its proceeds to St. Jude's Children's Research Hospital!!! Was Kennedy treated at St. Jude's? Nope! But they are one of the top hospitals for research and may very well be the ones to finally find the cure for this horrible beast called cancer. Want to help? Go out to eat! Think about it! No dishes, great food, and you can create a pepper for Kennedy or another child who has battled cancer! If you live in Clarksville, be sure to look for us there!

Here are some peppers that have been created for Kennedy. Thanks everyone! If yours is not on here, I may have lost it in the crash. If you'd like to create a pepper for Kennedy, you can do so at your local Chili's or at Create A Pepper.com.











Sunday, September 28, 2008

Pray Pray Pray

For those of you long time readers, you know by now that from time to time I introduce you to a child who needs prayer. Many of these kids are from Vanderbilt Children's Hospital where Kennedy was treated for her Leukemia last year. Tonight, I am asking you all to hit your knees for one of our kids, once again.

You may remember the last time I posted about Matthew Litchfield back in June. He was just beginning to fight Leukemia again after relapsing. Since then they have been pumping him with chemo and ultimately getting him ready for a second bone marrow transplant.

However, Matthew is struggling. He's in pain, he's sick, and he's very tired. They've debated sending him to intensive care, but that means that his mother, Tricia, can't stay with him 24 hours a day like she's doing now. So they've left him on 6A for now... he's labeled as critical and has a private nurse. His doctor, who rarely worries, but always tells it like it is, is worried. Matthew is on constant oxygen. This morning he was throwing up blood. His lungs are surrounded by fluid. They are pumping him full of platelets and blood, trying to make him feel better. Right now, as he is, Matthew will not survive transplant, or even the strong dose of chemo necessary before transplant. So they are planning to use his original bone marrow donor and give Matthew a stem cell boost. But there is no guarantee it will work. And so we pray.

There are several times in this world of cancer that I have found myself feeling hopeless. I always feel helpless, but when I see children suffering, when the pain doesn't seem to end, when they're so tired that they just don't want to fight anymore... I feel hopeless. Tonight, part of me feels hopeless. The other part of me is clinging to prayer. I am praying things turn around for Matthew. I am praying that Tricia will see a difference in him. I am praying for her heart, as I know it is shattering right now. She is living the worst nightmare of every cancer mom in the world... the nightmare of the unknown... the nightmare of "we're running out of options"... the nightmare of "we have to take this one day at a time." No mother should have to think of their child's life as "one day at a time".

And so, in times of hopelessness I draw near to God. I yell and I cry and I ache... and I listen. In times of helplessness, I do what I can. I blog. I ask you all to pray. So here I am, helpless... but trying to be hopeful... and asking you to pray for Matthew. Please visit his caringbridge page and let them know you're praying. They need to feel it from everywhere. And just in case you haven't heard me say this before... Cancer Sucks!

Operation Serve

Did you notice a theme on the kids shirts? Operation Serve! I can't wait to tell you all about it... later! :) I hope you've enjoyed the pictures today!

Keeghan Bear

Yes, that's one of my many nicknames for my sweet baby boy... along with booger head! HA! :)

Kennedy's turn

She was too busy running around to look at the camera... what else is new?!

Pictures

The kids and I are off to Memphis for the day... so I leave you with my babies in pictures. I posted Kassidy's last night, so next would be Kameron! Watch for the other 2 later!
So serious!!

Saturday, September 27, 2008

Just because...

Paint Shop Pro is working now... apparently it just needed a little internet access :).

Isn't she beautiful? :)

WIRELESS!!!

AND I'm back! I did indeed need a new router... and about 30 minutes talking to the support people for the new router I bought! haha But I'm back online!! Thanks for all the tips from everyone!

I look forward to getting back in the swing of things here... the only thing I CAN'T do yet is post pictures because I can't seem to get my Paint Shop Pro to load onto this computer... SO I'm off to work on that now!

Hope you all are having a blessed weekend!

Friday, September 26, 2008

ONLINE!!!!

OK so I'm not wireless... so this won't work long term, but for now I have the cable from my router plugged into my laptop and it WORKS!!! YAY!

I've tried resetting my router and I've tried turning it off and letting it sit, but nothing seems to help. If you have any other ideas, I would love to hear them!

We have a long day tomorrow, which I can't wait to tell you all about, but I just wanted to let you know I'm ON! YES!

Still no word from Drive Savers... hopefully soon!

UGHHHHHH

OK I'm at Mac Authority and I'm ONLINE!!!! What the HECK!? So is it something wrong with my router at home?! Hopefully we'll get this figured out soon!

Thursday, September 25, 2008

Hello?

Everyone still out there? I am hoping to be up and running again by tomorrow night. I am going to the zoo tomorrow with some friends from Vanderbilt. Kenn and Keeghan will be going with me of course haha. Then I will take my computer back in so they can get my online.

The kids had parent teacher conferences tonight and they went well. I will post more on that tomorrow... I hope. Until then!!

Guest Blogger~Holding Grudges

Renee was kind enough to ask me to guest blog on her blog for the day so here I am writing on one of the most popular blogs I know! I feel so special! I've decided to share with you all a post I did recently on my blog regarding holding grudges. I post it here today with the hopes that it will move your spirit and allow you to move on from past hurts and enjoy the life that God has blessed you with. Thanks for reading!

Holding Grudges

So I got to thinking, this is not something I struggle with but it came across my
mind today. Who does it benefit when someone holds a grudge? Does it benefit the grudge holder or the one they are holding a grudge against? Does the grudge holder feel more validated in the hate they carry in their heart by recalling all the wrongs done to them? Or does the one they are holding a grudge against try to reconcile only to be shot down and talked about and made fun of only to make the person holding the grudge holder feel better about themselves? Interesting thoughts I think.

Honestly, I am a REALLY forgiving person, I've made lots of mistakes in my life and I've asked for forgiveness for those mistakes. I've forgiven myself and moved on a became a better person for going through some pretty painful stuff. Can you say the same or do you stand on your stone of Pride and Righteousness thinking you've never done any wrong and that a little forgiveness might go a LONG way. Heck, I know that forgiveness alone has brought a lot of awesome things into my life. Search your soul and squash your pride, learn to forgive and then maybe we could talk.

Well....

So I got my computer back yesterday, which should be a great thing... except for the fact that I can't get online! Grr I have a wireless router and it's saying I have limited connectivity. I called Mac Authority who set my new hard drive up and they said they could have knocked a wire loose, SO I get to take the computer back to Nashville again tomorrow!! Still no word from Drive Savers, but I am hoping to hear by tomorrow.

Thanks for continuing to check in. I hope you're enjoying the guest bloggers. I have been updating my twitter which you can read on the side bar of my blog. Hopefully I will be back soon!!!

Wednesday, September 24, 2008

childhood cancer

While Renee's computer is having "issues" she has asked me to blog for her as a guest blogger. My name is Kim Porter. My son Charlie had leukemia and was treated at Vanderbilt Childrens Hospital. That is where and when we met Renee and her special k's.
I know Renee already posted some statistics about Childhood Cancer, but I wanted to share with you another statistic. This statistic is personal. Charlie was diagnosed on January 3, 2006. Since that date, a mere 20 months ago, I personally know of 12 children that have lost their battle to this horrible disease. 12! That I personally know. Unfortunately, one of those 12 was my son Charlie. It makes me so angry! It makes me so sad. It makes me so...I just don't know anymore. All I know is that we HAVE to fight against childhood cancer.
Everywhere I turn these days I see pink ribbons. That is great. I understand that breast cancer needed awareness. The great thing about that is, they got it. Breast cancer gets tons of funding now. Everyone knows about it, everyone. I am so sad to think that the majority of the world does not realize that September is childhood cancer month. Most don't know that gold is the color of childhood cancer.
I know childhood cancer is a touchy subject. No one wants to look at it. Everyone wants to brush it under the carpet and pretend that it doesn't happen and if it does, it will never happen to them. Well, hopefully it won't, but I'm here to tell you it happens. It happens to good people. Childhood cancer is out there and it needs awareness, it needs funding, it needs a cure!
There are a lot of things we can do to raise childhood cancer. Wear gold ribbons, share a story with a friend and help us spread the word. On Monday, September 29 the restaurant Chili's will be donating 100% of their proceeds to St Jude hospital. What a small way for all of you to make a contribution to helping fight childhood cancer. No, Charlie wasn't treated at St Jude and neither was Kennedy, but no one can deny the great things that St Jude has done to help find a cure.
Thanks for listening and please help me spread awareness,
Kim

Tuesday, September 23, 2008

Guest Bloggers

Thank you so much, Amy, for posting for me today! I hope you all enjoy the guest bloggers appearing here for the next few days!! I didn't want to leave my readers high and dry! :o)

Tomorrow morning my hard drive will arrive in California at Drive Savers... I should hear no later than Monday if they can save my pictures. I go back and forth between having overwhelming peace about it to waking up in a panic over all the lost memories! I have been wracking my brain trying to remember what all is on that hard drive... what is saved in photobucket, or other places online, and though I do have some here on my blog, I am kicking myself for marking them with my name... trying to protect them from unsavory use by others. And I am angry at those "others" for forcing me to mark them in the first place. It's misplaced anger, I know. Always have to blame someone.

A few of you have asked if I am done posting about Kennedy's birth story, and my answer is no. I have one final post, but I will wait to see if my pictures are back so I can show you my beautiful princess as an infant. Watch for that post soon. I have faith the pictures will be here for me to use.

Thank you to everyone who has directed me to online backup websites. I will be checking them all out and using one of them. I will be using my external hard drive as back up and I will be continuing to burn them to DVDs... but I will be more diligent about it. I will even be reminding you at times to back your pictures up... I don't want anyone to have this knot in the pit of their stomach like I do right now.

As for my bloggy friends, I apologize, but my google reader is being marked read right now. I had over 800 posts last night and almost as many tonight. There is just no way I can catch up. If you posted something that you'd really like me to read, please leave me a comment with a link. I don't want to miss it and I will catch up with you all soon!

That's all from me! Please check back for my guest bloggers tomorrow and Thursday! They are all dear friends of mine and I'm honored to have them post on my blog! I'll be up and running again SOON and you will wish my computer was still broken! HA!

Journal of Life

Renee is heartbroken. She packed up her malfunctioning hard drive and shipped it to a group of computer gurus who will hopefully be able to bring back all of her photos from the last three years. A lot has happened in that span of time...a lot of firsts. Kassidy, Kameron and Kennedy's first day of school, first time Kennedy walked, the first moment Keeghan breathed, the first time the Garcia children jumped into their grandmother's swimming pool, the first time Frank came home from Iraq, and the first time my Austin and Kennedy met.




Across the miles, through the telephone line, on a computer screen, our relationship began with love and fear...love for our children, fear for their health. Over the last three years, it grew, fed by hope...hope for the future....their future. Something I wouldn't allow myself to consider until I met Renee. We're hoping our babies might grow up and marry one day. In November, Austin and Kennedy will be in my daughter's wedding... Renee will be there, recording every moment with her camera, so that she can share our joy with you.
But for now...she's waiting, hoping and praying that all of the images caught, recorded and downloaded have not vanished with the white blip of a computer screen. All those moments of happiness and pain... joy and tears...are locked up tight in that silent hard drive. Images like this one...



And while losing a hard drive may seem like a small thing... inside of it was a photographic journal of life. Even if that piece of flawed technology refuses to give back those moments, Renee, they still happened and are recorded in your heart.
Keep the Faith,
Amy

Monday, September 22, 2008

What to do?!

Well, today I went to the Apple store who assured me my hard drive is in fact... dead. *sigh* They referred me to Mac Authority since my warranty expired yesterday. (Isn't that the way it always works?!) Mac Authority gave me a good deal on a hard drive but of course to install it will be $40 an hour and I have no computer until Friday. Whatever will I do with all my time?! haha

The sad part is my pictures. They can't recover them but they sent me to Drive Savers out in California. I called them today and am going to send them my hard drive tomorrow. If they can't recover my files, I am charged nothing. If they CAN, well, let's just say a picture really is worth a thousand dollars words. *sigh*

So, since I did not learn my lesson from my friend Carey who lost her daughter's pictures (all of her chemo pics), and now I may be losing all of Kennedy's chemo pics not to mention EVERY picture I own of Keeghan, AND a year of Kass and Kam's pics... all our Philadelphia pictures... on and on and on... PLEASE take my advice:
ALWAYS ALWAYS ALWAYS BACK UP YOUR PICTURES!!!

Please continue to pray I can get my pics back. I know it seems like a silly thing to pray about but I've just been devastated over all the memories that are potentially lost forever. *sigh*

In the meantime, I'll blog as much as I can the rest of this week, either from my iPod or my mom's house (which is where this post is coming from). Don't give up on me! I'll be around!!!

ONLY 2 MORE WEEKS!!!

Only 2 weeks until the big day!!! Can you believe it's almost here??? :)

Sunday, September 21, 2008

apple geniuses

So I have an appointment tomorrow at the mac store at 12:45. Please pray they can get my pics back. Carey, I know I should have listened to you. I was in the process of backing up everything but I was still pretty far behind obviously. Sigh.

my poor computer

Hey everyone. My computer crashed. Not sure what's wrong with it, but it appears to be the hard drive. I am freaking out because I am over a year behind on backing up pics. I know, I know. Please, if you would, say a little prayer that my pics can be recovered. I am calling the apple store first thing tomorrow. Until I get it fixed I can post from my iPod or my mom's. I will keep you posted.

Just some funny things... (A blast from the past!)

I have had this post sitting in my drafts for a LONG time! These are all stories from when Kennedy was in the hospital in Philly right after her surgery. I wrote them all down thinking, "I need to BLOG that!", so here are some funny stories from July, just to make you smile!




When we checked into the hospital on Tuesday, one of the PTs came into our room and said she had gotten a consult to work with Kennedy post-op. This didn't surprise me of course so she started asking some questions about Kennedy:

PT: Does she walk at all?
Me: Yes.
PT: Independently??
Me: Yes.
PT: (surprised) Are you SURE?
Me: Uh... yeah... pretty sure! LOL
PT: OK... well... which side of her body is weaker?
Me: Well she has low tone, but she's pretty much equal on both sides.
PT: She IS?!
Me: (totally confused) Yes, I'm pretty sure...

So the PT checks her out, asks Kennedy to squeeze her fingers and stuff and leaves the room just as confused as I am. A few minutes later, Kennedy ran down the hall to the playroom as the PT watched in shock.

Fast forward a few hours and a nurse comes in to get Kennedy registered into the system. She looks at Kennedy's info in the computer and says, "She doesn't have cerebral palsy... does she?!" I tell her no and she says, "Well it's here in the computer!" And it all clicks... THAT'S what the PT saw. No wonder we were both so confused! I still don't know if that poor PT has figured it all out yet! haha




And the meanest mommy award goes to: ME!!
I was standing by Kennedy's bed and I looked up to see it was raining. Without thinking I said, "Oh look Kennedy, it's raining out." But Kennedy can't turn her head... She gave me the most evil look ever. Yeah, I suck.




Kennedy was napping yesterday and in the middle of a sound sleep she yelled out "SINCESS!!!!" Scared the wits out of me... she must have been dreaming about herself! haha




Last night Kennedy was watching Elmo and I could tell she was getting really tired. Finally she looked over at me and said "Turn TV off now. I sleepin!" haha She has such a tough life!




When we were up in the lounge with the kids the other day, Keeghan was walking all over the place and one of the other moms from the floor walked down and saw him. She called out, "Come here, baby!" And he walked right into her arms and she picked him up. I guess he wasn't paying attention to who was calling him because he looked at her and got this terrified look on his face like, "You're not my mom!" hahaha

What is your blog rated?

OnePlusYou Quizzes and Widgets

Saturday, September 20, 2008

Q&A #25

Keeghan
Do you ever loose pacis with those things?
Nope! The Wubbanubs are great! The pacis come permanently attached and they make great snuggle toys as well as the paci. Keeghan loves them!

OK, I read in the last post to notice the ball....did Keeghan put it there or did Kenn throw it and it boinked off his head? LOL
Yeah Kennedy threw it right at Keeghan's head! LOL She has good aim! :)

Anyways, did Keeghan cry after that hit? Poor guy, the little ones always get the blunt end.
Nope! He's used to getting beat up by the big kids! haha

he is so adorable. how do you do such cute pics and graphics??
Paint shop pro, but you can also use adobe photoshop. :)


Kennedy
Kennedy looks really pretty with her hair do... what I want to know is? How did you get her to be still while you did her hair? :)
I bribed her with goldfish crackers and cartoons... and I told her to HOLD STILL a lot! haha

Kennedy's hair looks so cute! Isn't it fun to be able to play with her hair again? It looks so light in these pic's. So, is it the pic's or is it really getting lighter?
Yes, it is!!! And yes, it is finally lightening up a little. I keep hoping she'll end up as blond as she was before.

She is too cute. Do you hire out for potty training.
Uhhh NO! Not for a bajillion dollars! :)

Does Kennedy do well with signing? The sign for potty is very easy and she would be able to do it whether you are out and about or at home and other people would know what she is wanting.
Oh yes, she knows over 200 signs, but she talks WAY more than she signs at this point. She mostly signs for fun :). She's capable of telling me she has to go, she just won't for whatever reason.

Do her panties fit tight like a pullup does? If so you might try looser (bigger?) panties.
Yes, they do, that's a thought, I will try that!

So what is she wearing at home? Her birthday suit? Or the panties?
At home she is usually in a dress with nothing underneath and she does great!

Ken's will be there in no time and you will then say to yourself, "that wasn't so bad!"
PROMISE?!?!?! LOL

I was thinking about Kennedy the other day and I was wondering how her pin sites are doing? Also, thanks so much for those books that you listed! I'm currently reading My Sister's Keeper, and I can't seem to put it down! It's an amazing book. Thanks again!
I'm glad you're enjoying it! I couldn't put it down either! Kennedy's pin sites are doing well. The scars in the front are small and are healing nicely. The scars in the back are pretty big... 2 of them are nickel size... the other 2 dime size. One of them still keeps breaking open, but they're not infected anymore. We just gotta get the darn thing to heal!


Misc.
How do you find out those? they are hilarious!!!
Sitemeter. It's a wonderful thing!

Oh I LOVE no mo chemo parties, did they have a song? Ours goes like this and it's to the tune of "my bologna has a first name the oscar meyer song"
Our patients have the cutest S-M-I-L-Es
Our patients have the sweetest H-E-A-R-Ts
Oh we love to see you everyday but now it's time we get to say
pack up your bags head out the door you don't need chemo anymore!

I have heard that before! :o) Our hospital doesn't sing it, but they should! :o)

And it reminded me that when we PCSed this summer, I did not change the contact info on my bone marrow donor stuff. And now, I can't find the website. Will you send it to me please?
Absolutely! www.marrow.org. Thanks for being a donor!

I think you and I own the same camera. Is yours a Cannon Rebel EOS?
YES! I love it!!! :)

Lifetime actually put out a "real" DVD of the plain truth movie. I have it if you would like to borrow it at some point. If you can hold off until the Buddy Walk, I'll be happy to bring it to you.
That would be fabulous!! Thanks so much!

How far is Cincinnati from you?
It's about a 4 hour drive. It's actually a nice, easy drive. I enjoyed all the time to just sit and think.

I do LOVE the video, but I think the ARC needs to either change their name completely or advertise a new acronym!
I totally agree!!

Renee have you ever been to this families blog..their little girl is 5 years old (they adopted from Guatemala) and she has Cancer..I thought you'd like to see her blog!!! soo sad..
Yes! I visit there often and pray for them all the time!

Remember when I was going through that with Jas and we went to Disneyland and she peed ALL over the place?!?
YES! LOL That was a fun day! Pee and all! haha

My husband and I are adopting a 2 month old who has DS. Do you have any advice for us or recommend any good books? We are very excited!!!
CONGRATULATIONS!!!! Check out Road Map to Holland. Also, for online support check out Downsyn. There is a great forum of parents there who would love to share your journey! As far as advice, Early Intervention is key! Fill your house with language rich toys and surroundings. Talk talk talk A LOT. Get your little one involved with peers, friends, other kids he/she can model after. Never put a limit on what you think he/she is able to do. The sky is the limit! :) And the most important thing of course, which I'm sure you already know, is lots and lots of love!! Please drop back by and keep us posted!

For more Q&A's, Click Here.

School supplies

September is National Childhood Cancer Awareness Month

Our family sadly has come to know many families like the one you are about to read about. They are the families that did not get to bring their children home after fighting cancer.

When September rolls around, I look like any other haggled parent standing in the checkout with three kids. The shopping cart is filled with packs of pencils, note paper, crayons, markers and tissues.

"Why do we need to buy tissues for school?" my kindergartner asked last year.

I pictured a whole class of five-year-olds with runny noses and was tempted to reply, "So kids won't use their sleeves." But I chose the logical, "For when your nose is runny."

My neighbor claimed it would be a busy year when she found out I'd have one in kindergarten, one in first grade and one in middle school. But not busy enough, I thought, and again resisted the urge to let her know that I was wondering what my fifth-grader would be needing for school this year.

My fifth-grader, Daniel, never passed fourth grade. Or third, or even first. He didn't get a school supply list. Instead he got a kit from the hospital with syringes and bandages, all very sterile.

On Memorial Day Weekend, 1996, Daniel was three and diagnosed with Neuroblastoma. After eight months of treatments, surgeries, prayers and hope, this bald-headed kid, who acknowledged he was a "Brave Cookie," was ready to be a cancer survivor. But a staph infection entered his weakened body and we had to kiss him good-bye.

September-- now meaning for me, not only back to school, but Childhood Cancer Awareness Month-- has rolled around again and as I stand in line with my kids, I know why the supply lists include tissues.

Just the other day while joining other parents and children in the "shopping for school supplies frenzy," a woman noticed the gold ribbon pinned to my t-shirt. "What’s gold for?" she asked. "I know that pink is for breast cancer."

"Children," I said. "Gold because our children are golden to us."

I half expected her to show shock or horror, being one of the thousands who refuses to believe that cancer is the number one illness among children. One of those who has no idea that each year one in every 330 kids will be diagnosed with cancer before age 19.

I was ready for her to walk away from me down the aisle. Instead she mouthed the words, "Did a child of yours…?"

"Yes," I said. "A son who would be ten now. He didn’t survive."

Her eyes showed tears, causing mine to fill. Then this woman—a stranger--touched my arm. "I am so sorry." She smiled at my other three children. "They are beautiful. I’m sure your son was, too."

If you see a mother wearing a gold ribbon on her shirt--the symbol of childhood cancer awareness---please ask her about the ribbon. The opportunity to talk will help with her healing and give you new wisdom. Be aware that she may cry. Feel free to hand her a tissue. Although she has done it before, she probably shouldn't be using her sleeve.

(Written in 2002)

Alice J. Wisler lives and writes in Durham, NC. She is the author of "Down the Cereal Aisle" and "Slices of Sunlight," both cookbooks of memories. Her free grief e-zine, Tributes, goes out to over 800 subscribers each month. Visit her web site.

Learn more how you can help childhood cancer research: Visit The National Childhood Cancer Foundation (NCCF)

Then Sings My Soul Saturday



The instructions are easy. Just write a post on your blog about a song. It can be a song that has spoken to your heart during a difficult time... a song that brings back a special memory... a song that makes you want to sing along to the top of your lungs... a song that makes you glad... a song that makes you want to dance... a song that has inspired you... a song that makes you feel like the words were written just for you... a song that makes your soul sing.

You can include the lyrics or maybe include the You Tube video. After you write the post, go to Signs, Miracles and Wonders and link your post to Mr. Linky at the bottom of the page. Then you can read about all the other songs and stories that are posted.


Isn't it fun when I start a new weekly theme and then proceed to do it ONCE?! HA! Sorry about that!

So this song, and the songs for the next few weeks, are sung by one of my all time favorite artists, Lori Loza. I know, you've never heard of her (and if you HAVE, you have to email me!!) I heard Lori Loza sing for the first time at my grandparents church in Pomona Valley, CA when I was in junior high... maybe I was still in elementary school. Being the aspiring singer that I was, and the fact that she sang in the same range as me, she instantly became my new favorite singer! I listened to her tape (yes, tape!) over and over and over. Then she came out with a new album (which I got on CD! haha) that I loved even more!

When we moved to TN I lost both her albums (and I don't think I have a tape player anymore! LOL) and from time to time I would sing her songs anyway. About a month ago I decided to look her up, and I found her! YES! Of course I was expecting a musical website and I found her on the Arbonne website, but I decided on a whim to email her anyway... and guess what?! She emailed me back! I was just a little star struck! hahaha

Now, a few weeks later I own all 3 (yes 3) of her albums (and they're NOT on tape! HA) So I now intruduce you to Lori Loza... if you're a mom, pay attention to the words. She is one singer who GETS it!

This first song has ALWAYS been one of my favorites! It's fun and upbeat and something I strived for even before I had kids, yet know I'll never attain it!


The Perfect Woman
By: Lori Loza
I had a dream just the other night
I was the perfect woman in the perfect life
I prayed every morning at the crack of dawn
All my children called me, "Saint Mom"
I never got tired
I never ran late
My house was spotless 24 hours a day

My kitchen produced only gourmet meals
I ran a taxi on the side to the little league field
I joined every committee that the church could form
But I was always waitin when my man got home
They listed my phone in Proverbs 31
So the women could call to see just how it's done

Chorus:
I was the perfect woman
Impossible though that it seems
I was the perfect woman
Even if only in my dreams

I never made one mistake while training my kids
Dr. Dobson even called to get some help with his
The Lord never said no to my requests
I was always anointed I was always blessed
I was always smilin, I never got down
I never showed a wrinkle, I never gained a pound

Chorus

Well if you're feelin somewhat overwhelmed
Don't be afraid to lay your burdens down
You can't do it all haven't you been told
Sometimes a woman's gotta just say no
Stay true to your God and your family
And if you're perfect, chances are you're dreamin just like me!

Chorus

To hear The Perfect Woman, click on the play button below.


For more TSMS Saturdays, Click Here.

Friday, September 19, 2008

Lunatickety

While the kids and I were on our walk tonight, we were talking about a dog that lives in our neighborhood and Kameron said, "Yeah that dog is lunatickety!" What?! I can't say "grody" but he can say Lunatickety?! Watch out kids, it's the new cool word on the block!

Potty training and hair

OK so if I can post about soccer and hair, surely I can post about potty training and hair, too! Right?! Right.

So first the long awaited potty training update! Kennedy is doing GREAT with potty training at home! She has had one accident in the last week. She's figured out how to pull up her dress so she doesn't pee on it and she has even been making it to the potty in time to poop! YAY!

However... (you knew this was coming right!) whenever I put any type of underwear or pull up on her, she thinks it's ok to pee in it. The pull up I understand, but WHY does she think it's ok to pee in panties?! She knows how to pull them down, but she doesn't even attempt to get to her potty chair on time with them on... which makes leaving the house quite the challenge!

SO with phase one complete (potty training at home) we are now onto phase two... getting her to wear panties and NOT pee in them AND she still doesn't TELL me when she has to go, she just does it. When we're out and about she'll tell me she's wet after she goes, but not before. She obviously knows when she has to go, so what's the deal?! Any and all helpful tips are appreciated!

OH and little Miss Sincess has started this new thing where if I don't give her an M&M right away after she pees, she folds herself in half, puts her head in her hands and whines, "I want caaaaannnnndddddyyyyyy". Drama.

And last but not least, we have this lovely issue with her diarrhea being back. When we're home, it's no problem, she still manages to make it to the potty, BUT when we're out I don't think she'd be able to make it to a restroom in time if we didn't happen to be RIGHT next to one... and every bout of diarrhea turns into a HUGE blow out where I have to change her clothes. *sigh* Hopefully this issue will be resolved quickly by the Flagyl. We'll see! Next month it will be a YEAR since this stupid diarrhea started... I SO enjoyed the 6 week break from it. I hate poop.

OK nuff potty mouth from me! On Wednesday I decided it was time for me to torture play with Kennedy's hair. Isn't it cute?

Kennedy, Smile!!

That's not a smile! Say Cheese!
OK. CHEESE!!!

Come on, Kenn, give me a REAL smile!
You're beginning to irritate me.

PLEASE? Just one smile!
Happy now?!

View from the top

You found my blog HOW?! (Part 5)

These are the exact words people put into a search engine and ended up on my blog... there are some really bored people out there!

what is a well-baby check
(a check up to make sure your baby is doing... well)

my pediatrician missed my child's down syndrome
(it happens.)

my kids have strep
(welcome to the club)

i am wearing a pair of shoes.
(Good. They'll keep your feet warm.)

i am wearing a pair of shoes. they are ugly shoes.
(Well, maybe it's time for an upgrade!)

what does kameron mean
(I wonder that ALL the time!)

why is keeghan such a stinker?
(Mom? Is that you?!)

how do i say no to birthdays
(I'm pretty sure they happen whether you want them or not!)

charter digital cable box
(Watch out, they suck!)

sesame street and down syndrome
(I'm not seeing the connection here...)

i hate sesame place
(REALLY?! I guess you shouldn't go back then!)

afghanistan hot
(Yes, I'm pretty sure it is.)

my 4 year old has a wobbly tooth
(Pull it! Just make sure the tooth fairy remembers to visit!)

window update keeps checking but nerver finds anything
(Then there's probably nothing to find!)

i am blessed with a beautiful wife and kids
(Good for you! :o))

pictures of school supplys
children school supplys
(Seriously? Drop the "y" and add an "ie" it's SUPPLIES!)

hoping your day ..............
(What? Hoping it was good, bad, crazy, beautiful, WHAT?!)

potty training a 7 year old
(Oh please God, don't let this be me!)

potty training at disney world
(I don't recommend this!)

hallelujah chorus nuns
(Aren't they freaking hilarious?!?! LOL)

For more Google Craziness, Click Here.

Thursday, September 18, 2008

PSA and a Raffle!

This PSA will be playing in Wal-Marts across the nation... next month for Down syndrome awareness month and will be included in the release of the horrible movie Tropic Thunder. My friend Bethany's daughter Payton is the first cutie pie in there! Isn't she adorable?!


Speaking of Bethany and her beautiful family, hop on over to The Mom Crowd and enter the raffle they are doing! There are some FABULOUS prizes to be given away and all the proceeds go back to Bethany's family to help offset the cost for their adoption for Addison. They are leaving for Russia SOON to go meet their little princess and would appreciate all the help they can get. Seriously guys, the prizes for the raffle ROCK! Just go take a peek. Thanks for helping bring Addison home!!

Wednesday, September 17, 2008

One year ago tonight...

I can't believe I almost let this day pass without mentioning this. One year ago tonight, Kennedy received her VERY last dose of chemo. I asked if we could burn the bag... they said no! HA! They couldn't even let me throw it in the trash because it had to go into a biohazard bag. Heaven forbid someone touch that poison going into my baby's body! We knew we still had a couple weeks of hospital time left, but I think we all took a deep breath when they unhooked her for the last time. Whew. She did it. We pray every day it's a battle she will NEVER have to fight again.

Here are some pictures from her last chemo...

Pushing her baby through the hall... happy to be unhooked!

Sitting in Keeghan's playpen... silly girl!

Her favorite chair in the quiet room.

Opening her "end of chemo" presents.


Please pray for our Vandy families tonight. Our friend Jerel Kennedy relapsed with AML. I wish he had a page I could link you to, he is the coolest kid! Micah Crimmins won his ultimate battle with neuroblastoma and is in Heaven now. No more cancer for him. Ever. Remember his family in your prayers. Our friend Matthew Litchfield is still fighting hard, but he's struggling right now. Pray that he keeps fighting! Also, our friend Dylan Hollandsworth is pretty sick from his chemo right now. He has Down syndrome like Kennedy and just relapsed with Lymphoma, which is REALLY rare for Ds! Cancer sucks.