One of the typical identifying features of DS is a single palmar crease.  Maddox has this marker on her left hand only.

The twenty first day of the third month of the year..... 

Prior to Maddox’s birthday I had no idea this day existed.

Somewhere, someone thought it would be great to dedicate a day to those who have three chromosome 21s.  Thus became World Down Syndrome Day on 3/21.  

What do I think about this day?  Well, I can start by telling you last year when Maddox three months old I thought this day was repulsive, degrading, and chose to ignore it.  I would read stories of people celebrating this day with balloons, cake, and the party works.  Seriously?  All I wanted was for my baby to be normal, not stand out from anyone else, and now people are taking a day to celebrate three copies of the 21st chromosome?  I can tell you last year, I was definitely not celebrating this horrific chromosomal error.  


But today, 365 days later, I can face World Down Syndrome Day with a slightly better attitude.  While I am not quite to the celebration mode, I can breathe at least.  I still don’t think the extra chromosome is beautiful but I can say say that my daughter does has 46 beautiful chromosomes and there are days where it is a struggle to even remember that.  

I continue to have mixed feelings about today.  I do know that before Maddox was born, I thought I knew everything about how to live life without regrets.  What I have come to realize is that I knew about the ‘without regrets’ part, but I had no idea how to really ‘live life.‘   

Not knowing that first night, just how long Maddox was going to survive, I promised her in the NICU not a day would go by that she wouldn’t get the opportunity to live.  

That is why, every chance we get, we are taking risks, going on adventures, jet skiing, taking naps everywhere but the crib, getting puppy kisses, painting faces, snuggling with doggies, dressing up as princesses, swimming in lakes, making snow angles in the freezing rain, feeding horses, getting our ears pierced, going to the spa, swinging in apple trees, baking cookies, eating ice cream cones, staying up late to watch fireworks, camping in the rain, painting toenails, eating three birthday cakes, sitting in hot tubs, dancing in the streets, hiding in toy displays, eating suckers, drinking from wine glasses, carving (and eating) pumpkins, taking baths outside, creating crazy photo shoots, taking edible bubble baths, petting dirty animals, getting lipstick kisses, putting bows in our hair, and of course eating chocolate cake after bedtime.  

Each day is a gift, unwrap carefully, savor every moment.  

Without further ado, on this day, I have chosen not to celebrate Down Syndrome, but HAVE chosen to honor Maddox for teaching me how to ‘live life.’    

Below is a snapshot of the year’s adventures.

Yes, while our journey this year has not been all sunshines and roses, it has been filled more adventure, spontaneity, and love than I could have ever imagined.  

That’s what today recognizes.......

Not only how far we have come, but how far we have yet to go.  

Check back in another 356 days to see what year three brings.  I’m hoping, third times the charm!


Click here to read York News Times article on World Down Syndrome Day by Greg Awtry

RAE N TIM
Maddie thank you for letting us be a part of your life!!  Tim and I love you and your family so very much.  We are honored to know you.
OOXOXOXO
MONDAY, MARCH 21, 2011 - 09:46 PM

Today was a rough day.  At this moment, you should know that the post below consists of my rawest and truest feelings.  

Tomorrow will be a better day.

I feel like a gigantic old sand hourglass.  One whose final grains of sand are squeezing through the tunnel and falling in slow motion to the ground.  That’s the calm way to put it.  On the flip side, I could say I feel like a time bomb waiting to explode any minute.  I have two hard months a year, the first is September and the second is March.  Did you notice they fall exactly 6 months apart?  The magical number that doctors like to use when scheduling follow up appointments.  Yes, today we went to see three of our seven specialists.  And we know since January 5, 2010, nothing we do comes without surprises anymore.

We got up at 3 AM and hit the dark foggy roads hoping to make good time to U of M.  One ruined fender (in exactly the same location as our last accident), one poopy diaper in the car, one traffic jam, and three pukey outfits later we are on our way home.  

Click here for the Medical Updates from today.

Back to the time bomb....I have spent a lot of time driving Maddox to and from therapy this week.  The clinic is in the same location as the exercise club.  There is one elevator and it carries the sick people up to therapy and the healthy people up to the club.  When the doors open, you can tell right away who is checking in where.  That’s not the worst of it.  Almost every time those elevator doors open I see an acquaintance, a co-worker, or a friend headed to ‘the healthy side’ to work out.  

One particular day this week I got really angry at the fact that hour after hour, day after day I spend after school time in a waiting room peeking in and praying Maddox crawls today while my friends are all out doing something I used to love to do.  Gosh, I can’t even imagine what happens when Scott and I have another child?  Will our next baby’s playroom be the waiting room, will floor time be on an oversized blanket in the waiting room, will their entertainment be the people coming and going from the elevator?   Is this even fair to them?

I had different plans for our family.  I had visions of after school library trips, homework time at the park, afternoons at the beach, family trips to the grocery store...I didn’t envision spending the most valuable time of our day, four to seven PM, in a cold small waiting room apart.   I didn’t sign up for this or agree to this plan.  I didn’t raise my hand and volunteer to be the lucky winner of umpteen trips to U of M each year, wrecked automobiles, countless hours at therapy, hours of phone calls to insurance companies, and expensive medical bills.  

I hear so often that this whole thing is a blessing, I am lucky to be chosen,  there is a reason, this will be the greatest joy I ever experience.  

Today (and only today - because tomorrow I know I will feel differently) I want to shout back to these people and say, “Blessing, chosen, reason, joy?  Really?”  

Because right now, in my eyes, the chosen, blessing, reason, and joy would be a one year old girl that could walk across the room, climb the chair into my lap,  lock eyes with me and say, “Mommy.”

POPPOP
Understandably we all have a bad day now and then, but one doesn’t measure love in baby steps and everybody’s life is filled with “what-ifs”.

Thankfully, we can all close our eyes and dream. It’s life’s relief valve to ease the pressures, and isn’t it grand! Sometimes those dreams turn into reality, other times they remain slightly out of reach.

Life is not so much about living the Dreams as it is about chasing them. Catch one, and there are still ten more to chase. I have seen you Jamie, catch hundreds of them and I see Maddox catch them every week. 

Something good is in the making.

It’s getting better by the hour.  

Parents anxiously waiting. 

Videos to come.

Stay tuned.

My website took a dive.  A major dive, Apple and I are still rebuilding it.  For the record, we are on a first name basis now.  We talk daily, sometimes several times a day.  Our relationship continues to grow.  In the end, we wont’t get married, they’ll just get my money!  Who am I kidding, that seems to be the trend in society anyhow.

Lots of things going on.

Maddox celebrated her (third) first birthday.  She’s got this whole party thing down!

I have been nominated for two “Have You Heard” awards in the areas of INTERNET IMPACT and RISING VOICE.  No special trip or monetary prize, just a voice, a chance to advocate for kids with Down Syndrome and that alone is priceless.  Voting ends March 18th and winners will be announced on National Down Syndrome Day, March 21st.  

Don’t worry, I have lots to say about this day, look for my post on 3.21.11  In the meantime, cast your vote by clicking the link below!  

livepage.apple.com

Let’s see...Some other firsts happening recently.  Well, I know Maddox is going to be in her fourth year before we even consider being done with diapers.  That is a pretty depressing and expensive thought so we decided to counteract that by putting her on the potty every night before her bath, just for exposure.  

Day two of pre-potty training was pretty successful!!!    

Did I take a photo?  YOU BETCHA!

And....

Sent it to all my friends.  My favorite response back was from Pop Pop, “Holy Shit, did Scott do that one?”

We also did the whole homemade spaghetti thing too.  

Maddox watched her first Superbowl. She enjoyed the game but mommy had a difficult time.  I knew the day would come when Maddox would be in a room full of younger kids.  She was the oldest and every kid pretty much kicked her butt developmentally.  Huge difficult to swallow double dose of reality.

We celebrated our second Valentines day.  I breathed a sigh of relief at how far we’ve all come in 365 days.  We celebrated this day with a little lighter hearts than last year.

My snow princess went to her first hokey game.  I am not sure what she enjoyed the most.  The lights, the players, the fans, the food.....All I know is she was the best dressed there!

So all in all, that is what the past month has brought us.  Some good some bad.  I’ll take it.

Welcome to March.  This is a dreaded month.  It is her 6 month recheck month with all of her specialty appointments at U of M.  I think we are in line for five of them (Orthotist, Physical Medicine, ENT, Audiology, Pediatric Surgery).  Stay tuned to the medical page for updates.  

KELLEY
Great to see you site back up.


I had to laugh at the potty story! I just posted about Nava using her new potty and doing the same. I really wanted to take a pic but then I figured others might not appreciate it as much as me. And lets just say, it wasn't as, uhm, dainty of a demonstration??! You can see my wuss out at: navagating.blogspot.com

I just wish your photos showed up in a reader!

Cheers
K
TUESDAY, MARCH 1, 2011 - 11:43 PM



MELISSA
be patient with the potty training Jamie it will come but you are right, not as soon as you would like.  Cory was #1 potty trained by age 3 and #2 trained between 4 and 5.  But she WILL get it!!!!!  you are doing the right thing in introducing her to it now, it never hurts to get her knowing what it is.  I am struggleling for prolly the first time in Cory's life with him not hitting a milestone that his peers are and that is driving.  All his milestones have come at his terms and i have been ok with all of them but this driving thing bothers me the most i think.  Weird huh?  All his friends have taken drivers training and have permits and some have already gotten their liscense and he wants to take it (drivers training) so bad but i know there is no way he can.  he knows the just of driving and has driven the cars around the yard and down the back roads but i know he is very far from being able to do it himself.  I just keep telling him he will have to stick to his 4-wheeler for  a few more years.  LOL
TUESDAY, MARCH 15, 2011 - 10:55 AM