Six!

I am so in love. Entirely, over the top, in love. Six years ago I had no idea my heart had room to love another baby this much.

I also had no idea ...

how tired I could get.

how happy I could get.

how angry I could get.

or how quickly my hair could turn grey.

Nor did I know ...

how hurtful the R-word could be.

how powerful inclusion could be.

how expensive therapy could be.

or how hard I would fight for equality.

And what I never wanted to know ...

how it felt to hold a sick child.

how many families are touched by childhood cancer.

or how many parents have to say good-bye way too soon.

Today we had Chelsea's FIRST 'friend' birthday party. We invited all 22 of her classmates and TEN attended her swimming bash. It melted my heart to watch them play. At first, Chelsea played alone while Daddy sat close by. Then, a little boy who she adores arrived, and they were inseparable the rest of the evening. I was overjoyed to see how she ran around with all of her friends. She fit right in with the other kids, she had no problem keeping up. She was even showing off some of her swimming skills. I look back at her birth six years ago and wonder what I was so scared of!

This party was just what she wanted for her birthday: to play, to swim, and to be with her friends.

In lieu of gifts, we asked her guests to just attend and to have fun. We also encouraged them to give the gift of hope to children, desperately in search of a cure. There are many organizations supporting cancer patients and funding research for a cure. Unfortunately, many of them spend very little money on childhood cancer. For this reason, we asked for donations to Braden's Hope Fund. Braden is one of the spectacular children we met while Chelsea was in treatment.  (You can read about Chelsea on the Hope Heroes page!)

We are incredibly thankful to have Chelsea with us for her SIXTH birthday. As you tuck your children into bed, please remember the parents who have an empty bedroom tonight. Consider celebrating Chelsea's SIXTH birthday with us by making a donation to Braden's Hope Fund. Thank you, for giving another family HOPE.

No Funny

I tried to dream about what this would be like. What would my daughter's voice sound like, what kinds of things would she say? I often wondered if we would understand her well enough to laugh at the cute things she came up with.

The answer is yes.

We were headed into the bathroom tonight and I asked her if she wanted a bath or a shower.

"Shower," she replied quickly. Then she immediately changed her response, and while holding her knee, she said, "No. Bath. No band-aid off."

She has a fear of band-aid removal these days. It could possibly be that she's traumatized from all the dressing changes over her Hickman.

While preparing for the bath I noticed she was wearing a boys pull-up, not the flowered pull-ups I send to school. I asked her, "whose pull-up are you wearing?"

"Bert." (The name of her para.)

I couldn't help but giggle. She pulled my hands from my face, looked me in the eye and said, "no funny."

Maybe she didn't intend to be funny, but it was hard not to laugh. So I asked her again, "whose pull-up is this?"

"Peggy." (The name of the other para.)

It seems like it's all coming along for her. She sings, she yells, she bosses us around. Most people don't understand her, but that's typical for young children developing speech. At first, they're only understood by the people they spend the most time with. No doubt, she's making progress, and that's all I can ask for!

FDA: Is food dye making kids see red?

Ironic that I finally decided to open up this topic on the blog last night. Here's a short story done by Brian Williams. He mentions the Feingold Diet which is where we started with Logan in December. Of course he's been a bit of a puzzle and we've further eliminated things from his diet, but I truly believe the artificial dyes play a large role in the focus, attention and hyperactivity of our children.

FDA: Is food dye making kids see red?

Visit msnbc.com for breaking news, world news, and news about the economy

Normal

I don't want perfect, just normal.


Logan hits his little sister.


He yells at me and gets ticked off when I tell him to put his clothes away before he can play the Wii.


He tries to sneak chocolate chips from the cabinet when he thinks I'm not looking.


So what?


I can handle that. All of it. That's what's expected of a seven year old boy.




Seven year old boys don't

scream and cry for hours,

at the drop of a hat,

until they throw up.


They don't

take pleasure in abusing,

and killing living things,

then show no remorse.


They don't

set out to destroy everything in sight;

new gifts they've been given,

or old treasures that don't belong to them.


They don't

take a baseball bat to anything -

except a baseball.


They don't

talk about death,

or wish away their precious lives,

or the lives of their loved ones.




Seven year old boys

climb trees,

ride bikes,

torment their little sisters,

sneak candy,

and play in the mud.


They are

always hungry,

curious,

brave,

and sometimes crabby.


They still need

friends,

compliments,

hugs,

a kiss from mom,

and an ear to listen.


How do I know this? I have a seven year old boy. I don't always get to see him, but when I do, it's grand.

This new child of mine, he's growing and changing everyday. I didn't talk publicly about the "other" Logan, probably because I didn't know what we were doing wrong. I didn't know why or how. I didn't know how to "fix" it, how to make it all better.

Do I magically have all the answers now? No, but we're learning everyday. We've seen some remarkable changes, they may seem small to those on the outside, but to us, they're tremendous.

For the first time in almost eight years, I feel like I'm able to breathe. Instead of remaining on constant chaos control, I was able to clean & pay bills over spring break - simple things most people probably take for granted.

What could bring on such a change? You may be surprised. A diet. It's actually more of a lifestyle change; an awareness of what we put into our bodies. The ultimate goal? Natural, God-made foods.

A Whoopin Anyone?

I thought the day she was born was my darkest day - I swore I could never raise a child with a disability ... but now Miss Chelsea lights up my darkest days.

We went to church tonight and by the time we returned home, Logan was jumping off the walls (literally). Before he broke anything else or hurt anyone I told him to go brush his teeth and he was going to bed. This caused an instant meltdown (he thought he was getting a cupcake for good behavior in church ... ha, ha, ha).

So after carrying him back into his room three times, protecting myself from his attempts to hit and kick me, I got him in bed and locked his door so that he could cool off. (Fortunately almost everything he could break is out of his room, so no worries there!)

Finally, I was able to lay down with Chelsea to read her book. Of course she had been watching the whole thing unravel. Often when it gets like this she gets nervous and tries to help me, hug me, or tell me, "happy." She definitely knows something crazy is going on, and she doesn't like it at all.

Just as we started reading, I hear him holler from his room.

"I HAVE TO PEE!"
"You'll have to wait until I'm done reading."
"I'm going to go in my pants!"
"Fine. You'll have to clean it up."
"NO!!! YOU'LL have to clean it up!"

Trying to keep my cool I just look at Chelsea and say, "Should I go give your brother a whoopin?"

Her response? "No, hug, kiss, Logie."

Wow. Really, through all the madness and chaos, this little angel can always bring a smile back to my face. I may have two very challenging kids (in different ways) ... but she sure knows how to remind me that I'm the luckiest mom in the world. There's no doubt about it, God gave this girl to me for a reason - too bad it took me so long to realize it!

Just the Dentist

Just a trip to the dentist.

I planned it 6 months ago.  When Chelsea saw Logan and I getting our teeth cleaned last time she decided she could handle sitting in the chair all by herself.  I didn't have to crawl on top of her anymore, we didn't need an extra hygenist to hold her legs down - she was ready to do this all by herself.

After this successful dental visit I scheduled us all on the same night once again.  I wouldn't want to let any time go by in between the kids' visits - she might forget how well Logan did and lose interest.  I knew she could do it by herself.

I even scheduled Ryan for a cleaning along with us.  Why not just make it a family affair?  Okay, so maybe more like a family circus.  Let me break it down for you.

The whole family picked me up right after school for our 30 minute commute. Our appointment was at 5, and the Branam's station wagon pulls in at 4:58.  Look out.

Ryan's hygenist is standing at the desk waiting for him.  I hold him off so he can herd the children while I check in.

I started a new job this year, here's my new insurance card.

Oh, Ryan started a new job too - here's his new insurance.

Oh no, Logan's insurance dropped him in August, then when they got all the paperwork done in November they decided he did qualify so they reinstated - I suppose his policy is a different number as well.

Thank God Chelsea's still got the same plan. 

I make a dash for the bathroom, my last break was 2pm and I couldn't wait.  My 60 seconds of peace.

I'm greeted upon exiting the bathroom by my hygienist as well as another woman waiting to take the kids back!!!  Yowza, what's with all of these people being on schedule at the end of the day?!

Then Ryan tells me, "Chelsea pooped."
Fantastic.
"And I need to go to the bathroom."
Why not?

Because I'm a loving and faithful wife, I let him go to the bathroom.  Then he leaves to get his teeth cleaned.  He leaves me with two children.  One, bouncing off the walls, the other, with a bomb in her pants.

Before I can even address the diaper, I have to talk to Logan's hygenist.

Umm, he can't have any toothpast or cleaning agents that have any artificial dyes or flavors, and no preservatives please.
So basically you want me to use so ground up rocks to scrub his teeth?
Sure, sounds good to me.

Now to the Pull Up.

Changing a diaper at this point should be pretty easy, right?  You would think I'd have it down after 7 1/2 years of diapers.  It's a little more complicated than that.

Into the public restroom we go, in between my legs are our coats that I'm trying desperately to keep off of the bathroom floor - but I quickly realize that's impossible and throw them in the corner thinking maybe they'll stay clean if they're on top of my purse.  Right.

Oops, I'm going to need a bag for this one - crack the door open, oh so friendly hygienist waiting on us tracks down a plastic bag for me.

Down to business.
Converse untied and off.
Foot braces off.
Jeans off.
Pull up off and in bag.

Two minutes of convincing Chelsea the only way to make this easy on both of us if she would just BEND OVER AND TOUCH HER TOES!

Child cleaned up, bag tied.
Bag tied again, PEW!

New pull up on.
Jeans on, snapped and zipped (she's working on it, but no, she can't zip and snap those jeans yet.)
Wash hands.  Two sets.

Braces, shoes ... screw it.  She's getting her teeth cleaned barefoot.

Do you feel my pain?
ALL THE WHILE, DADDY IS COZY IN HIS CHAIR GETTING HIS TEETH CLEANED.  (I'm not bitter at all.)

Logan is already in the back when Chelsea and I are finished in the bathroom and Chelsea sits with him so I can have xray's.  While sitting in my chair nearby, trying to be still, all I can hear is,

"Can I have something else?  What does this button do?  What's that?"

In a very calm voice I hear the dentist, "No.  Don't touch that.  We can't play with that.  No, not there.  Watch TV."

"The TV's blurry!"

I'm mortified by this point.

My hygenist assures me it's okay, the gal cleaning their teeth has 4 kids of her own.
That's nice lady, but I'm pretty sure no amount of kids can prepare you for my two.  It's just cruel for that poor woman to be left alone with them.

Then it's Chelsea's turn and they're over there attempting to cajole her into the seat.  Sunglasses, the thought of a pink balloon when it's all over, a new tooth brush - she decides to try the chair.  Unfortunately that's about as far as her cooperation went.

Again, in an attempt to comfort me, my hygienist tells me "they usually do better when parents aren't in there anyways."

A minute later the other woman comes to tell me Chelsea's not wanting to get her teeth cleaned today.  I looked at them and said, "don't worry, I've got this.  I was by her side through chemo, I hold her for blood draws and shots.  We do it all together."

Next thing you know I'm laying in the chair next to Chelsea, my mouth open pretending to wait for - my turn.  I'm singing, making faces, stinking things in my mouth, whatever it will take.  We get it done.  Part of her cleaning she was on her tummy, then later on her side facing me, neck turned around towards the hygienist, and she spent the rest of the cleaning upside down - feet on the headrest, head in my lap. 

Finally.  I can return to my cleaning.  (Are you thinking, where's Dad?  That's what I was thinking too.)

I kind of wish I hadn't returned to my chair.  Apparently that great big piece of tooth that fell off in Walmart a couple of months ago was really a filling.  Looks like I'll need a redo.  Plus two more ...  I really don't know what work I need - by the time they were telling me about fillings the kids were quite literally bouncing their new bouncy balls off of the walls and down the hallway of the dentist office. 

There's so much more, I could go on and on, but I'm too tired right now.  For now I'm saying my prayers, then going to bed.

Specifically, that nobody throws up tonight, and that we get a nice tax refund soon so that I can pay for all of our dental bills.

Sweet dreams.

Mystery Solved!

For weeks now we have all been trying to figure out what Chelsea wants for Christmas.

"What will you ask Santa for?"  "What presents is Santa going to bring you?"  "What do you want for Christmas?" 

We've tried it all.  The preschool teacher used pictures, I've taken her to stores to "show" me what this mystery item is she keeps repeating. 

We've been stumped.  Can't figure it out - but it's definitely not your common Christmas gift; doll, baby, train ...

On the way to school yesterday I figured it out. 

"Four more days until Santa comes, what is he going to bring you?"

"Candy cane." 

Yep, for weeks now, my love has been asking for a candy cane.  She doesn't even like candy canes, she has just learned that's what Santa always has on him when you see him in public. 

If only we all could 'want' so little. 

Count Your Blessings

This time of year makes me reflect upon the blessings in my life.  It's so easy to dwell on all that we don't have, it's time I remembered all the reasons I should be so thankful.

As I walk through the house each night, fans abuzz, I count those blessings, 1, 2, 3.

One, Chelsea.  Oh were to start?  Five years ago I knew I loved that little one growing inside me, but I had no idea to the extent she would change my life, and my vision.  One of the most important things she has taught me is compassion.  When you see someone in need, do you lend a hand, or do you look away?  

On a recent trip through Wal-Mart, Chelsea and I were passing through the busy aisles, headed to the school supplies.  Just as we passed housewares, Chelsea turned around and ran back two aisles disappearing from my view.  As soon as I lost sight of her, I realized what she was doing.  I remembered seeing an employee out of the corner of my eye, stacking the shelves.  I had heard a loud noise as we passed, but hadn't thought twice about what could have caused the noise.  When I turned the corner Chelsea had already picked up the bowl the employee had dropped, and was handing it to the woman.  I can't think of another person, young or old, who would have been so perceptive and shown the compassion Chelsea did that afternoon.  

Whether it was conscious or not, I had looked away.

Two, Logan.  A firecracker since birth.  When they said parenting is the hardest job you'll ever have, they weren't kidding.  This one keeps me on my toes.  He forces me to keep digging, continue growing and question everything (quite literally).  He's taught me not to pass judgment too quickly.  It happens to all of us; We're deep in conversation, around friends or family we feel comfortable with, and we say things without thinking.

Not long ago I found myself in the middle of a conversation that was all too familiar.  

'... and the child was running all over the place, his mother was a mess trying to keep up with him.'  

'Well she needs to get control over the situation.'  

'Yeah, I would get that under control right away.' 

Yeah.  Uh-huh, sure you would.  Okay, I confess, that was me eight years ago.  Ryan and I used to roll our eyes and gaulk in amazement at parents who let their children run around in public like wild animals.  We swore up and down that would NEVER be us.  

But it is.  It's so us.  And today I'm hurt by those conversations.  I don't know the mother in question, but it sounded to me like she needed to be helped, not ridiculed.  Who are we to judge her?  

Three, my husband Ryan.  It was his strength that first got my attention 12 years ago (he was a strapping young man), and it is what keeps us going today.  

When our first born cried for hours on end and I just couldn't do it anymore, he did.

When we received the confirmation of Down syndrome and I locked myself in the bathroom swearing I would never come out, he pushed the door in and lifted me up.

When they began Chelsea's chemotherapy and I realized I was just as scared of the cure as I was the cancer, he wrapped his arms around both of us and didn't let go.  

I never knew I would need the strength of an army to survive our first decade of marraige, but I'm glad we had it.

Tonight I thank my wonderful family, I am truly blessed.  I hope this Christmas you don't waste precious time fretting over your neighbor's ugly decorations, or who gave the best present, or whose children are the best dressed at church this weekend - and take the time to be thankful for the things in life that really matter.

Friends

If you've been reading for long, you know about the madness and chaos of our daily lives. You've read about Chelsea, the princess who rocked our world when she was born; the little girl who courageously fought cancer ... and won.

Then of course there's Logan, the big brother, who refuses to be left in the dark. Constantly seeking attention of any kind, he is always on the go. His mind is equally busy - he is the boy with a million questions. He is easily frustrated and often misunderstood.

While he doesn't show it often, I know there is a softer side - a sweet, loving boy hiding behind all of the energy.

But recently, he opened up.

In his Living the Dream essay, Logan shows his other side. At only seven years old, he's got a message and a voice, and he's not afraid to use it!

Friends

By Logan

I feel bad about those who get no friends. I think everyone should have a friend. My sister Chelsea has Down syndrome. I am scared that she won’t get any friends. She can’t talk that well. People might make fun of her. My sister is a friend because she is nice, she smiles all the time, and she is caring. She is a person just like us. It’s in your heart to have a friend with a disability.

Think then Speak

Once upon a time, in a second grade classroom near the center of the United States, a teacher playfully asks a forgetful student who left her homework at home, "What should I do about you?"

Then the skinny blonde boy in the back of the room, who's known for not paying attention yells, "Give her a wedgie!!!"

Huh?

Random, impulsive, inappropriate? Yep, that's my boy.



So as soon as I walked in the door tonight Dad handed me the planner. It has the dreaded yellow color change marked with a short "wedgie" explanation next to it. I sit down, take a deep breathe and contemplate how to responsibly broach this incident with Logan.

After he gives me a short explanation, I try to cover it all.

Inappropriate - check.
No yelling in the classroom - check.
Apologize to teacher and student - check.
THINK before you speak - check.

Then out of curiosity I ask, "where did you learn the word wedgie anyways?" (I don't recall using it recently.)

"I read it in my Captain Underpants book."

Great, I knew I shouldn't have let him read that (and you all wonder why I've banned Diary of a Wimpy Kid at my house!)

Then he corrects himself, "no ... I heard it from Grandpa!"

Even better.

Top 10, How I Taught My Child To Tell a Lie

My boy is just that. All boy.

He's sweet and funny, but ornery.

He's known for asking questions. Lots of them. His mind goes a hundred miles a minute and doesn't slow down until his busy little brain is asleep.

Sometimes when he says something funny, I don't correct him. Sometimes I say funny things, he believes me, and I never say, "just kidding!"

His innocence and naivety, it will fade with time. He's getting smarter everyday, and catching me in my little white lies. I'm going to hold on to my baby as long as I possibly can.

A few things I just can't bring myself to tell him quite yet:

1. Sesa*many, as in Sesame Street, only has three syllables, not four.

2. I've never called juvenile hall. I don't even know their number.

3. That dressing we put on our salad isn't kee*zer, as it appears to read on the bottle, it's pronounced see*zer (cesar).

4. Girls don't have "china's". China is a place, not a thing.

5. McDonald's doesn't close at 6:00pm.

6. There are no camera's disguised as fire alarms in our house, they really are just smoke detectors. If you choose not to tell me the truth, I'd probably never know.

7. Fart isn't THE f*word. It's not even a bad word, and you probably wouldn't get in trouble for using it in front of anyone else but me.

8. The police officer will not come put you in jail for hurting your sister. Or for saying a bad word, or changing your card at school. And he didn't pull us over the other day because you were misbehaving.

9. Yes, you're right, everyone else in your class does have a Wii.

10. And finally, there is no old lady. That was not her house at the end of the road that burnt down last year. She is not watching you eat your vegetables and watching you go to sleep. The only old lady around our house is me, your Mom.

You Can Help

I’ve never been able to work in sales.  I just can’t.  I don’t like selling people things they probably don’t need.  Asking people for money is just not fun. 

What would be worse than asking people for money though?  Not asking.

Sunday will mark three years since our lives were turned upside down.  Speaking to Chelsea’s pediatrician on my cell phone that fall morning, and hearing those four words, “we need to talk,” was the beginning of a whole new world for us. 

I’m not going to retell our story.  Most of you already know how it goes.  Six grueling rounds of chemotherapy, 157 days in the hospital over 8 long months, fevers, infections, thousands of miles back and forth from Kansas City.  Days when she shouldn’t have been happily playing, but she was, and days when medically she was stable, but she wouldn’t even wake up.   

You know how the story ends.  I’m attaching a series of pictures that document her journey.  The first, taken at diagnosis, the second, during her treatment, the third was one year after treatment was over, and the final picture was taken this summer, as we celebrated TWO YEARS of life without cancer. 

 

Looking back at these pictures brings back all the memories we try to forget, but they’ll never go away.  The upcoming anniversary is why I know it’s NOT okay, not to ask.  Chelsea’s life was saved by a regimen of chemotherapy that is still being studied.  The goal of the study is to decrease the toxicity, and long-term side effects of chemotherapy in children with Down syndrome and Acute Myelogenous Leukemia. 

Chelsea walked away with only a few scars from her central lines, some hearing loss, and probably a few bad memories - I would consider the study a success in her case.  The Leukemia and Lymphoma Society helps fund an assortment of studies, just like Chelsea’s.  We will forever be thankful to medical staff that saved her life, and also to the donors, like you, who contributed to the LLS and in turn helped to fund life saving research – like the study that we participated in. 

So although times are tough for all of us and bills are piling up, jobs are scarce – I’m still going to ask.  Will you consider a donation to the LLS?  Every little bit counts.

The walk is 36 hours away.  My goal is to find 10 friends to donate $10.  Can it be done? 
(Of course donations can still be made after the walk.  We have a month to turn in donations and because I'm getting a late start I plan on turning in a big chunk of our team's money in October!)

Make checks out to LLS (the Leukemia & Lymphoma Society).  You can give them to me, mail them, or send your donation via paypal.  

Thank you! 

800!!!

Post number 800, I better have something good tonight!

You know my time is very limited, and I haven't been writing much, but look out - I've got something on my mind. 

Last night a friend on facebook shared a dilemma she was having at her child's school.  Like Chelsea, her son has Down syndrome, and like Chelsea, he likes to go where he wants to go - when he wants to go there.  Are you following?  Think back to Chelsea's 6am trek to the neighbors house, in the snow, in her pajamas, when she was 3 years old.  Oh wait.  Maybe I didn't tell you about that one.  I'm sure you can use your imagination.

This mother is torn because her son's teachers have asked if they can put a bright orange safety vest on him while he is at recess.  They claim this will make it easier for the staff to "spot" him amongst the other children - hence decreasing the chances he'll run off without being noticed.

Yeah.

Seriously.

True story.

So I stewed about the topic all day and went back to read the comments from other facebook friends tonight.  I was appalled at the responses.  Sure, most of them feel that this is not appropriate, but there was a surprising number of parents who supported the BRIGHT ORANGE VEST.  So tonight I share with you my response.

(to the bright orange vest supporters) - I am a parent of a child w/ Ds, and my child is VERY likely to wander off. I am also a Kindergarten teacher. It is our job to be watchful of ALL children. Regardless.

This is 2010 people. I'm extremely sad that there are parents out there who think this is okay. I just don't get it. I feel like we are constantly trying to fight for a place for our children - trying to get others to see just how much they have to offer, and that they are "more alike than different." Making the child wear a bright orange vest is like sticking a great big sign on his forehead that says, 'Hello, I have Down syndrome, and I am DIFFERENT.'

Isn't our goal for our children that they become contributing members of society? Well, NEWSFLASH, ... society is only going to be accepting of adults w/ disabilities if they are taught acceptance as children. It starts now people. If you think there is a safety issue, then the teachers on duty need to be doing everything in their power to keep him safe. Stand where they can see the exits at all times, be diligent. Teach. Teach. Teach. Do we think this child will NEVER learn not to run off? Need I remind you?  Every child can learn. (no matter how hard they try to prove otherwise some days ;) I don't care if the teacher has to review and practice appropriate playground behavior/rules every single day the ENTIRE year. He will get it. In his own time. Even if it's not until 5th grade.

As a teacher, I often feel I need to keep my opinions censored, but I could not bite my tongue on this one. We have made so many strides over the past 20 years in the area of disability awareness, and acceptance. What this school is proposing is a HUGE step backwards.

Please consider all of this when making your final decision (insert name of friend here ... assuming she still wants to be my friend)!

I'll leave you with a peek at my favorite contributing member of society...

Someday

 Part 2:

Be warned, chaos continues. 

I'm surprised we made it into the hospital for Chelsea's x-ray after lunch.  Walking from the parking garage, Logan, without any awareness at all, walked in front of a couple of cars, he almost walked right into people we were passing on the sidewalk, and he managed to stop the rotating doors at the entrance.

Once there, he was picking up a colorful piece of plastic off of the ground in the waiting area and putting it in his mouth - until I reminded him that may have been on the bathroom floor at one point.  I requested he put it in the trash, and oddly he obliged.  While waiting for registration he was trying to get Chelsea out of her stroller (yes, at this point in the day I wasn't messing around and she was STRAPPED in.)  After trying to pull papers off of the registration desk, I made him hold my hand all the way into the office.  Because he was restrained he decided to use his lovely mouth.

You're the worst mom in the whole world.

You don't love me.

When we get home, I'm running away.  (Who says I'm taking you home?)

The woman taking our insurance information thought we were crazy.  While Logan went on and on, Chelsea was pulling on the desk and my chair moving her stroller around, almost tipping it a few times, and trying to stand up out of it while screaming, and signing, "BOP" at me.

Logan had to make a sudden bathroom stop before the x-ray.  It was one of those 17 second bathroom stops boys make.  I made him turn around, go back, flush, and wash his hands.  He was back in and out.  I went in after him to get Chelsea set up to go - he definitely washed, water was EVERYWHERE, but the flushing task was left incomplete.  Of course I made him come back and flush.  (Did you notice I spend a lot of time following through, making him clean up after himself etc.  When is this going to pay off, because so far, it's not working.)  When Chelsea washed her hands I realized why there was water all over, it was a tiny sink with way too much water pressure.  Chelsea and I were both wet when we left the bathroom.

The x-ray was completely uneventful.  I couldn't believe it.  I did have to buckle Chelsea in afterwards kicking, screaming and crying, but that's normal.  (For some reason the girls in the radiology room thought it was funny.  I wasn't laughing.)

At home this afternoon Chelsea crashed for a nap.  I was extremely thankful.  In order to save a bit of my sanity, I let Logan play his DS ... for way too long.  Normally we have a 20 minute cap, but he played for a little over an hour today.  Shame on me.  Give me a break, it's the first video game player he's ever had, and he's 7 1/2!

As soon as he got bored with his games, Logan and Bobo came running through the house, and of course Chelsea wasn't far behind them.  She helped me fold clothes while Logan was supposed to be reading that book I made for him this morning.  He didn't get very far.

"Mom, Bobo got a hold of the bag of skittles in your room and is eating them!"  (As a side note I don't typically keep skittles in my room, it was a large unopened bag I had inside a box of supplies waiting to go to my new school.)

Sure enough, Bobo was in Logan's room chowing down on skittles.  The weird thing is he managed to get the entire bag out of the box and into Logan's room in one piece.  He was also able to get the bag open with a nice clean tear.  Pretty amazing for a dog.  Out of fear his beloved dog might die from eating too much candy, Logan was easily persuaded to tell the truth.  He had dug the bag out and hid them behind his dresser, and the dog found them.  Again, why do we think mom and dad ALWAYS say, "no food in your room?"  Was the rotten egg in the window not lesson enough?

The rest of the afternoon was filled with sibling scuffles, a mess of staples, a demolished pad of sticky notes and a fat lip.  Yep, both kids had a bloody lip today.  You can turn me in, but I'm pretty sure after an hour with them, social services would bring em' both back.

Logan was downstairs raiding the basement (and I mean raiding - you would be shocked to see some of the things he's done after sneaking down there) and I hollered for him to get upstairs.  Chelsea was pulling the gate back and forth, the dog was trying his hardest to get past me and get down the stairs. Logan was slowly making his way to the top landing.  In an effort to contain Chelsea and the dog with one hand, I grabbed Logan with the other and pulled him by the arm up the last step and into the kitchen.  Amidst all the chaos, he whacked his mouth on the door jam at the top of the stairs when I pulled him up.  I contained the rest of the herd and went to check on him.  Sure enough it was bleeding.

I took him to clean it up and as soon as he saw it was bleeding he started to cry.  (He knows how to work me, like a knife in my chest.)

Then out came, "Daaaadddddy!!!" (Now twist.)

A little ice and a washcloth and he got over it pretty quickly.  He even apologized for being ornery.  (his words)

I took him to Jazzercise with me tonight, gave him a little more DS time while I worked out, then it was time to head home.  Before we left, I caught him desperately trying to unwrap the four pieces of Dove chocolates he had stolen from the stage.  He returned the unopened pieces and will be paying for the pieces he ate.

Bedtime couldn't come soon enough tonight.  I only wish I had the energy to accomplish something after they're in bed. 

It must seem like I'm exaggerating, but I'm not.  Sunday was just as high on the chaos scale, just different crisis', including, but not limited to - 6 underwear accidents, bloody dog vomit, sibling abuse, broken toys, baby lotion / monkey incident, multiple public bathroom trips, including a bathroom floor tantrum (because the only time she's able to verbalize she needs to potty is when we're at a particularly dirty public place).

I hope I haven't scared anyone out of parenthood, or made you fearful of having a child with Down syndrome.  Of course they are challenging, but clearly all children are.  If you have days like this, just know you're not alone.  If you don't have days like this, ... ever, ... then you're not being honest.

Often it seems like we warn our kids about the things that will happen someday if they don't behave, listen, respect.  We lay out the rules, we follow through, we let go of the small stuff - but still it doesn't get easier. 

So you see, my summer isn't full of fun playtime, blogging and facebook - it's rather a time I try to survive ... with a little bit of sanity.


My summer projects have been a flop so far.  I've got a basement full of boxes with children's clothes that need to be labeled before our garage sale in two weeks, a box of camcorder tapes waiting to be put onto DVD's, a classroom to move and setup, and a few books I need to read.  None of it is done.  Why?  Because most people's someday is my everyday.  And I'm tired.

Someday

It's funny because people will ask me, "why aren't you writing anymore?"  or "I haven't seen anything on your blog for a while."  I'm pretty sure those people don't know me very well.  I have a lot of questions I need to answer regrading sleep studies, tonsil surgery, potty training (don't even get me started) ... but as with everything else, there's just no time.  It's still on my list.  You know, that never-ending to do list us mothers keep in our head in hopes we will one day have just a split second to complete a task not directly related to keeping children alive.  I digress.

I realized tonight that maybe it was a time I filled you in on what I do all day - because really, I know what you're thinking.  It's summertime, I'm SO lucky because I don't have to work for 10 weeks.  It's a blessing, and a curse.

Let me explain.

I woke this morning to the sound of the baby gate in Chelsea's doorway hitting the hardwood floor - that's her way of telling us she's up, and ready to go.  Then out comes the newest member of our family, Bobo.  I can hear him jump from Logan's bed, whine at the door until Chelsea gets there to let him out.  I close my eyes and hold really still in hopes everyone will think I'm still sleeping and just leave me alone a little longer.  Of course Bobo doesn't catch on very fast and I can hear his toenails sliding through the house all the way to my bed.  It's time.

I can no longer postpone the inevitable, so I get up and head for the bathroom.  There's something wet on my bare feet.  It's still warm.  Dangit, after 7 1/2 years you'd think the boy would be house trained.  I pull out the clorox wipes and beckon the boy to come clean up his mess.  He swears he didn't do it today.  It was from Thursday.  Really? ...  Today is Monday.  Whatever, just clean it up.

I head into the kitchen to get breakfast started, but Ryan is already up and working on it.  Whew.  We do much better when we can tag team these little monsters.  We've learned, when they outnumber you, you're screwed.  He's also already given Chelsea a clean pull-up.  This morning she didn't just strip her diaper off, the jammies came off as well - she was buck naked.  That's my girl.  I can't say I blame her, her bed was soaking wet.  Which was fantastic because I'm always hoping for extra laundry!

I was so sad to see Daddy leave this morning.  He's helping a friend scrape, texture and paint his ceilings.  

I decided to attempt eating breakfast this morning, but I knew it was a mistake when I heard running water from the bathroom.  I knew it wasn't Logan, he doesn't frequent the bathroom sink without great resistance.  I trudge in to see what she could be up to.  No wonder she didn't turn the water off.  She broke the faucet off.

It was a bit tricky, but I figured out how to stop the water, then told both children to stay away from the bathroom sink today (not a problem for Logan).  Hmmm, do you think that's why mom and dad always yell at the kids when they punch the handle on the faucet to turn it off?  It's gonna break someday! 

After breakfast I attempt a few phone calls - namely trying to get Chelsea into the doctor for the mysterious limp she's had since last Wednesday.  I got an appointment an hour and a half later - plenty of time to get everyone dressed and out the door, you would think.  I decide I also have just enough time to print off and assemble an appropriate reading a-z book to print off for Logan to read today.  Of course I had to download and print double sided (saving the Earth here!) and Chelsea decided she needed to eat.

All the while Logan has the toys out from under his bed and is looking for more treasured playmates in his closet - the locked closet of which he has somehow retrieved the key we had been hiding above the door jam.  We need a new hiding place.  A few arguments over cleaning up and putting shoes on so we can leave soon and I decide it's not worth it.  I have to move on.

Change the laundry, feed the dog.

Chelsea's still hungry.  Watermelon on the back deck is a safe bet - keeps my kitchen a little cleaner.  Of course Logan has to have some too.

Okay guys, please, just eat your watermelon and stay on the deck while I go wash my face and brush my teeth.  In the bathtub.  I leave them in peace, turn on the radio and take one more peek before heading into the bathroom.  The metal chair is laid over, Chelsea's on her back crying, and Logan is eating his watermelon.  Please!!!!  It's only 10am and I'm already begging my children for mercy.  As I go to check on her, the dog sneaks out (fortunately he didn't go far b/c he knew there was food involved in this incident).  Logan denies all of Chelsea's accusations but decides he better fess up when I tell him I saw him push her chair over.  (I didn't see a thing.)  When I asked him why, I got the standard, "I don't know." 

After some threatening I decided to try washing up again.  During my three minutes of glory, Chelsea managed to come into the house, pull out all of her barbies and accessories, dumped a backpack full of play plates, glasses and silverware, and take off all of her clothes.

No sweat.  I can handle this.  This is nothing.

But she's in a mood today.  I quickly realize trying to cajole an ounce of cooperation from my four year old is a waste of time.  I'm done playing.  This is no time for her to be independent and insist on dressing herself.

Twenty minutes to get to the doctor and the dog needs to be taken out before we leave.  I'm afraid asking Logan to do it is only going to cause more chaos and take longer, so I demand they both go get their bottoms in their car seats and buckle up.  (They never do it, but I still try.)  After a quick spin around the Cottonwood tree with Bobo, I push him in the house, lock the door and prepare to wrestle somebody into their seat.

As expected, she's decided this is the perfect time to hop into the front seat, buckle the seat belt and lock the car door.  Deep breathe.  I hustle around to the driver's side and open the car w/ the keypad.  I hit the unlock button, then rush back to the passenger side where my princess is sitting, only once I get there she's in the driver's side.  This is not the day to mess with mommy.  I climb in grab the screaming and kicking child, and put her in the car seat.  With one last trick up her sleeve, she arches her back so her bottom slides out to the edge of the seat in objection.  She knows how annoying this is and begins to grin, so as not to play into her games, I forcefully push her little pelvis back in the seat and buckle her up.  Great.  Eight minutes to get to our appointment on time.  Thank goodness the clock in my car is fast, because eight really means thirteen.  I've got this.

(Insert typical sibling arguments / physical altercations between two children trapped in car seats here.)

Just before pulling into the doctors office, Logan begins apologizing for all of his antics this morning.  He didn't understand though that I wasn't mad about the pee on the floor, the broken faucet, the abuse to his sister, refusing to help clean up, or the arguing.  It's the whole thing.  It's the everyday.  Bless his heart, he's remorseful, and I was falling for it.  I'm just about to pull over, reach back and give him a great big smooch when he reminds me what all the sweetness is about, "can I still play with the DS at the doctor's office?"

Sigh.

I want so badly to say no, because he doesn't deserve it, but I'm full aware this is my only hope and I'm going to have to give in at some point.

"I'll think about it."  I warn.

It was our typical waiting room experience, Logan was standing on the chair reaching to the top of the fish tank trying to get the lid off so he could reach in and Chelsea suddenly realized she needed to go potty ... by herself.  I must admit I was extremely pleased as Chelsea went potty, wiped, flushed AND washed her hands with minimal assistance (she couldn't reach the soap or paper towels).  As soon as she was done though, she raced towards the stray sippy cup left in the waiting room and when I took that away from her she decided to throw the one book in the entire waiting area on the ground and jump on it.  That's what books are for, right?  Meanwhile Logan has found a partner in crime to help him harass the fish.  I tune in just in time to hear him ask the girl how old she was.  After she answered six, he piped up, "I'm eleven."  ???

"Chelsea."

Thank God.  Get us in a room so I can shut the door and contain these monsters.

I love those tiny little cabinets under the sinks in the patient rooms that are the perfect size for 7 and 4 year old children to hide in.  Grrrrr.  Of course once the doctor comes in, Chelsea decides she is not coming out.  Logan also has an obsession with the little foot holders that pull out from the bottom of the bed.  Out and in, climb on, put in, pull out.  If he only knew what they were for. 

Said doctor wants to x-ray Chelsea's foot, but warns us we'll likely spend a good hour at the hospital getting this done.  Not only did I still have to battle them at the hospital, but I had to figure out a way to feed them ... in public.

Fortunately, at lunch, Chelsea only ran away from me four times, and her lip stopped bleeding pretty quickly after she ran right into the chair behind her while trying to get away the second time.  Logan was also on decent behavior, he begged for pop, but I reminded him if he got pop (lemonade ;) - Chelsea would get the cookie that came with the kids meal they were splitting.  He wasn't happy, but agreed.  I did give him a fourth of her cookie after we ate, which turned out to be a mistake.  When I went to dump our trash, the eyes in the back of my head spotted Logan trying to take Chelsea's cookie right from her hands (but she wasn't giving it up without a fight).  He knew with one look he was caught red handed and moved away from the coveted cookie.  I asked him to take one last napkin to the trash.  Fortunately, he did.  Unfortunately, he came back to the table with a handful of coffee straws, which had to go in the trash as he had three or four of them up his nose before I realized what he was doing.

I left the restaurant, hand in hand with the little thief, and carrying the kicking and crying four year old.  She wanted "more cookie."

And it's only noon.  You'll have to read the end of this saga tomorrow.

Let's Be Real

I've debated for a while now about coming clean.  I've monitored my posts for sometime now, being careful not to be offensive to somebody, or send the wrong message.  I've gotten a lot of good feedback about the things I write here, but unfortunately some bad as well.  We're all entitled to our opinion, but this is my domain to do with as I please.  No more filtering for fear of what strangers, friends, and family may think. 

Sure I wonder if the kids will read these stories.  I worry that someday Logan may be mad at me for something I wrote about him, but this is who we are.  I journal it all so I can remember it and they can know the stories of their childhood as they really happened.  I would like to post the good, the bad, and of course, the real.

No More Nappies?

Tinkerbell, Cinderella and Belle, sparkles, rhinestones and stripes - so many choices, what is a girl to do?  Four and a half years later I'm getting a little tired of plain old white.  I mean really who doesn't want to mix it up every now and again?  Yes, every once and a while we'll get some with Pooh Bear on the butt, but I'm ready for something new, something stylish and cute. 

We're talking diapers here. 

Yes, the pull-ups have a few pictures on them, and also a few purple stars that are supposed to fade when they are wet (although Chelsea's never disappear, even when she's soaked through her clothes!)  I've decided that diapers just aren't that cute on a walking, talking, sassy four year old.  I suppose I could try the new sleek denim diapers.  I wonder if they make them in a big big girl size, like big girl size 6 - kids over 40 pounds ... doubt it.

I will admit it, I'm ordinarily a 'they'll do it when they're ready' kind of girl, but lately gosh darnit, I'm ready!  Doesn't that count for something? 

And I know all the facts. 

Children with Down syndrome have low muscle tone (really?!) ... guess what you need control of before you can use the potty ... yep, your muscles. 

Children also have to be able to understand how to make themselves go, how to empty the blubber (that's bladder in Logan talk). 

And of course my all time favorite, they have to feel uncomfortable when they go in their pants (ya think?)  Guess who could care less? 

Really, I shouldn't complain.  She's actually done very well two of the last three days.  I suspect it's just a tease though, I've been all psyched about buying big girl underwear before.  Last time it was short lived and by day three Chelsea proved that she was nowhere near ready to be let loose into the real world without a pink pull-up riding up her little cheeks. 

But once again these past few days really have me pumped up and ready to ditch the die-die's.   I've even been caught meandering around the underwear aisle of Walmart, day-dreaming about buying new undies for my big girl.  Two days ago she woke up wet, then stayed dry all day until after her nap.  Of course by that evening she was sick and tired of the potty and flat out refused to sit. 

Wednesday wasn't a great day either, but today has more than made up for it.  She did well during the day, but I was particularly pleased when we had a very successful evening out on the town! 

At Red Robin tonight, we made two trips to the ladies room before our food even arrived, and she told me both times that she needed to go.  I usually call her bluff if she asks to go in public more than once, but as soon as she started snacking on fries she jumped up in the booth and I instantly knew the problem.  She gave me those great big "surprise" eyes and with little modesty shouted, "oop!"  Sure enough, she 'ooped' for me!  She pottied again at Walmart and upon returning home tonight - all the while the pull-up remained dry!

I actually bought her some Minnie Mouse undies for Easter when she was two.  They're quite snug on her lil' bootie now, and they're still brand new.  That was way back when.  When I thought maybe, just maybe, my child with Down syndrome would be the one.  You know, the one that did everything right alongside her typical peers.  The one that would be completely potty trained by three.    Looking back I realize why I have so much gray hair.  I may sound like I'm bestowing a great amount of unnecessary drama upon myself and my child, but I'm really not.  I've gotten over the stress of diaper changing in the backseat during a snow storm, at the disgusting grocery store restroom, or in her stroller on a 100 degree summer afternoon. 

I just want to buy cute big girl underwear for my little diva.  Seriously, low-rise hipsters in lime green and pink for a four year old?  I can't wait!  Good-bye Huggies, hello Fruit of the Loom!!!

Summertime with Mom

It's been so long, I almost forgot how to login to my blog! Doesn't mean I'm out of things to say, just out of time to say them. Want a quick run down?
Chelsea: tonsil-less, sleeping hard, nightmares, Curious George, conductive hearing loss, hearing aide, summer school speech, more Curious George, oncologist - clear, cardiologist - clear, ENT - clear, audiologist - pass (barely), no hearing aide, lunch dates and shopping with mom, sinus infection, green, eww, crabby, new stroller w/ childproof straps = happy mom

Logan: SECOND grader, bored, climbs walls, bored, TV, wrestling camp, bored, swim school, bored, summer camp, obsession w/ Diary of a Wimpy kid books, Diary of a Wimpy kid books banned from house, continued food protests, worst mom in the world, chores, mean awful mom, self monitoring daily To Do's = happy mom

Ryan: school, study, 3am wake-up, sleep, clinicals, study, sleep, study, LPN graduation July 1 = (you guessed it) happy mom!!!

Me: grade cards, classroom cleanup, interview, new job, resignation, chase Chelsea, discipline Logan, drive, drive, drive ... read, read, read, ... sleep (dare I?) = happy mom

Whew. Did you get all that? Blogging is on my to do list. Evidently I'm not self monitoring quite so well. I'll work on that, because I know you might want some details.

And because you know I have a camera with me at all times, here's a peek at some of the fun things we've done this summer!

One last meal before tonsil surgery

headed up for surgery with Curious George

What in the world just happened to me? No pictures please.

You didn't think we'd forget the babylegs did you?

A week and a half later ... almost as good as new!

A new cousin!

Dream Night at the Zoo

What do we do when they get dirty? ... You can't beat free entertainment!

Lions, Tigers, and AIR's, Oh My!

We have started a new communication log with Chelsea's teachers and I couldn't help but share.  I read about this from another blogger and loved the idea, so I took it and ran.  That's what we do as teachers - our best ideas are stolen!

There have been many nights Chelsea has come home singing a song to me, or trying to tell me a story or a sign, and I just don't understand her.  It's been frustrating for both of us, but her frustration has really been shining through lately.  She really truly wants to communicate!  I want nothing more than to be able to ask my baby girl what games she played at school, what she ate for lunch, or what book her teacher read that day.  Sometimes I'll guess what she's saying (even if I know it's not right) and she'll smile, nod her head, and agree with me.  Lately, she's been telling me no more often.

I'll ask, "you read a book?"
"No.  Mon. Nes."
"What?  You played on the monkey bars?"
"No, zeeeeelow."
?????

That can go on for quite some time at our house.  Eventually, I just move on and ask her about the train I hear in the distance, or the dark clouds in the sky.  Fortunately she still falls for that distraction method pretty well. 

In order to help alleviate some of the communication stress, we decided to use an innovative little piece of technology.  I have a love hate relationship with technology, but when it's used as an educational tool, I say go for it.  We purchased a refurbished 5th generation ipod nano.  It's got all kind of fancy features, but the most amazing is the little video camera.  See where I'm going with this?  Honestly I wondered at first how her teachers would feel about it - I can't say I would LOVE the idea of videotaping myself, or my voice throughout the day.  I'm sure I would do it though if I had a child who couldn't talk. Chelsea's teachers welcomed the idea with open arms!  They didn't even hesitate and even seemed excited to try something new.  We have been extremely lucky, both kids have had nothing but FABULOUS teachers.  (By the way, next week is teacher appreciation week, don't forgot to tell your child's teacher how special he or she is!)

Today was our third day exchanging this tiny device between home and school and I'm thrilled to report a huge success.  The last two nights have been chaotic, and I'll admit we didn't get to watch the videos until Chelsea was in bed.  Ideally we want to watch them with her, so we can talk about her day and actually have a conversation with her.  Today when Grandma dropped her off at my school, I immediately looked in her backpack and viewed her day on the 2 inch screen.  First up?  Miss P. - "Going on a Bear Hunt" ... hmmm, good to know, I've heard that song before. 

On the way home Chelsea was watching out her window when suddenly she started shouting, "oooh!  oooh!" while covering her cheeks as if she was surprised!  "Air, Air!"  ???  Then it clicked.  In just seconds, I realized exactly what she was telling me.  She saw a bear outside her window!  Before I could say anymore, she began patting her lap and dove into ... "I'm going on a bear hunt ..."  Okay, so it actually sounded more like, "go air un ..."  But who cares?!  I knew what she was telling me, I could ask her about it, and even sing along with her!  I think she was quite shocked that I understood her and knew the song myself. 

Priceless.  Kind of gives you that warm and fuzzy feeling inside, doesn't it?  I think I'm going to like this little ipod nano experiment.  Now if only we could find someone to follow Logan around with a video camera at school all day ...

La-Di-Da-Di

It's your birthday!  La di da de here's your song!!!  Is there anything more fun that waking your kids up at dawn with obnoxiously cheerful birthday music?  

Today my sweet little boy turns SEVEN!  Where does the time go?  Often I wish I could press pause and they would just stay little.  With each year it seems there are fewer firsts, things tend to smell worse, and everything gets bigger ... feet, teeth, and attitude.

Over the past year Logan has grown physically, socially, emotionally and cognitively.  He has lost FIVE more teeth for a grand total of seven.  His bank is brimming with magical gold dollars from the tooth fairy.  He began playing soccer this year.  The season began with sheer excitement, but the novelty has worn off and now he prefers small talk with the goalie over chasing the ball.  Those shiny cleats and fancy shin guards weren't cheap though so he may give soccer another shot in the fall. 

At this time last year we were planning for Kindergarten graduation.  He was just a baby, my little guy.  Now he's practically a second grader.  I should count my blessings that he hasn't been kicked out of school.  He earned a ticket to the principal's office the FIRST week of first grade.  I wasn't proud, but looking back he learned a lot from that little visit.  His principal made quite an impression.

I had hoped by seven he would be a better eater, but no such luck.  I remember the doctor telling us this was just a "phase" and he'll grow out of it.  That was at his two year old well child visit.  Unfortunately I think some of it is starting to catch up with him because he's still wearing the same size 7 pants from last year.  His feet have grown ... and not just a size or two.  Who knew fungus could grow so quickly on a stinky, wet, size 1 foot?

Logan's 6th year was filled with all kinds of illness.  I think every single virus he had this year was accompanied with a fever - which means his school nurse has me on speed dial these days.  I easily took six or seven sick days staying home with the poor kid, and that's not counting the sick days grandma and grandpa took to stay with him.  It seems fitting that he's ending this year with one last fever.  We actually had a three week run of health in our family - it was about time for someone to come down sick.  The worst part is he has to be fever free for 24 hours before returning to school ... so no birthday treats or extra birthday recess tomorrow.  I also postponed his overnight.

Despite the trials, tribulations, and tinea pedis, I am tremendously proud of my not so little guy.  I love him more than words can express.  I can't imagine what this next year will bring, but I am sure of one thing;  there's never a lack of excitement! 

* And in case you're wondering, yes, he will get a pass on the Signing Time Happy Birthday wake up call.  I'll save it for a fever-free day.