Something I did not know before Maddox was born is that October is Down Syndrome awareness month.  I didn’t care so much to celebrate that idea this year so we celebrated Halloween for the entire month of October instead which was waaaaay more fun!! 

Check out the ‘punkin’ standoff. 

I think Maddox won the standoff.  After all, she would have done just about anything to get to what she thought was a gigantic milk supply.  Check this out!  She reaches for the pumpkin, actually gets it closer to her, and then manages to assume the position.

We had enough halloween jammies to last us for an entire week, here is a sneak peak at Saturday’s choice!

Every year we have a crazy halloween party, here is a snapshot of the festivities.  Maddox helped decorate, then went to stay with her grandma and grandma at the hotel!

The next weekend, I drug Scott to another Halloween gathering at a local church.  His job was to push the stroller full of everyone’s goodies.  Can you tell he was loving his job!  

That is halloween part one.  The rest is yet to come.  Below is a priceless photo.  Maddox has a friend over and for the first time ever she is really in tune to what is going on.  Addison was moving the puppet for Maddox and she watched so intently.  I can’t wait to watch this friendship blossom.  Addison has such a heart for Maddox, thank you Josh and Kim for raising such an incredible daughter!

So far this has been a pretty cool month, but I didn’t tell you the best part yet.

After ten long months I can finally say:

BYE BYE MATERNITY PANTS AND HELLO PRE PREGGO PANTS

MIRANDA
That is the best moment when the maternity clothes are retired and you are not only wearing non-maternity but your pre-pregnancy size. A friend of mine shared one of your/Maddie's videos on her Facebook page and I fell In love with your story. You have such an amazing family and support system.  I look forward to following your beautiful daughter progress as she continues to do what the doctors said she "would never do". I'm rooting for you Maddie :)
SATURDAY, JANUARY 14, 2012 - 10:22 PM

"Cheese”

Good news or bad news first?  

Since this is a blog and you will be closing out of it soon, I don’t want you to leave on a sour note so that means I start with the bad and end with the good!  

Facebook is bad....

I have contemplated closing my account but then again I would lose so many lifelines.  Here’s what gets me.  I am in the childbearing stage, yep, all my friends are doing it.  Some have children younger, some have children older but everywhere I go on Facebook, I see photos and read status updates about both younger and older kids, all of them doing more than our miss Maddox.  It sinks and unfortunately, that experience is only the cake.  The icing has a pretty stinky flavor too.  

So, here I sit while my daughter is doing less than every kid her age, in fact, less than every kid three months younger than her and come to find out that getting the necessary, adequate, and appropriate help is extremely tough.  Let me say, it is stressful enough simply having a child with disabilities and then throw advocacy in with it, life begins to feel like every step is uphill.  I am thinking to myself, geesh, enjoy your uphill hike and while you working your butt off all your friends are on the other side of the hill sledding down and having a blast.  Nothing against my childbearing friends I am so proud of them, but darn it, I would give anything to be in their place.   

Ok, on to the good news.  Several months ago I told myself that the day that Scott accepts this, that I would too.  I would know he accepts this because he would verbalize that we have an amazing beautiful little girl.  The funny thing is, I never told him this.  

I just knew I would wait this day out until I heard the comment.  I honestly thought it would be years from now, when Maddox did something really big.  Then Scott would look at me and say something like, “What were you so worried about, she is amazing.”  

I did get that ‘everything’s going to be ok’ moment and way way sooner than I ever expected.  

Tonight while I was “advocating” Scott was on the floor playing with Maddox.  She looks up at him and smiles.  

I hear Scott say, “You know what kid, you sure are pretty cute.  We love ya no matter what, yeah we do.”

Is your heart melting?  Mine did. It melted faster than a cherry popsicle in July.

And that my friends, is our giant leap for mankind!

SITO
I don't know how it's possible, but our love for Maddie grows more and more each day. She stole our hearts the first second we laid our eyes on her. She continues to amaze us with her flashy smile. Anyone who is  the recipient of that smile is the lucky one. This baby with Angel eyes is already wise beyond her years. And yes she has already taught us so much with more to come.  Yes, We Love You Maddox Lucille.
FRIDAY, OCTOBER 22, 2010 - 11:22 PM


MELISSA WEST
Jamie, i understand your yearning (sp) to have what your friends have but trust me they are experienceing thier own trials, maybe not the same ones we have to but raising  a "normal" child isnt' all down hill sledding and having a blast.  I speak from experience haveing one of each.  Although i love both of my children equally sometimes raising Cory was and still is easier than raising Emily.

You know how beautiful and precious your sweet little Maddox is, try not to get wrapped up in what she's NOT doing and enjoy what she IS.  These years will fly by and you will wish you had them back TRUST ME!!  before you know it she will running away from you while you chase her yelling "come back", and she will run faster just because she can.  And she will ride a bike maybe not at the same time other kids her age do, but she will do it.  Do not lose your faith.  God chose you to raise this beautiful daughter becasue he had faith in you and knew you were the special person she needed.  Hang in there!!
MONDAY, NOVEMBER 1, 2010 - 10:48 PM


CATHY
I get it!!!!!!!!!!!!!!!!!!!!!
MONDAY, NOVEMBER 8, 2010 - 07:18 PM

The baby sitter needed to keep Maddox’s hood from falling over her eyes so she tied a horn in the hood.  My little rhinoceros knows she is so cute.

One bad day out of ten, not too shabby, 90%.  I can live with that.  

Here’s the down low, lots of things going on....  

Several friends started their own family this month, just as we had envisioned.  This is tough for us.

Down syndrome awareness month, posters everywhere. My chest aches when I see them.

Maddox hits 9.5 months, she is not crawling.  Reality sets in.

Physical therapy starts Monday.  

Spoke with others about raising a DS child.  Discouraging and encouraging.

Teething has begun.  Will they come in straight, misaligned, misshapen? 

More shots. More Tylenol.

Maddox’s first cold.  Drama Queen makes her first appearance.

Grandma leaves.  We miss her.

Mom reminded me tonight,  “The sun’ll come out tomorrow, bet your bottom dollar that tomorrow, there’ll be sun!”

SITO
Yes the sun did come out! I still miss Maddie and her Mom so much that I have a hole in my heart. See you soon.
SUNDAY, OCTOBER 17, 2010 - 06:46 PM

Seriously, what could be better than this?  

Taking a dip in the hot tub before bed, getting into a made bed, sleeping next to my warm baby all night, crisp sheets, blackout curtains, continuously running guilt free heat, and of course.....Waking up to this happy precious bundle.

One of my fellow cheerleaders from back in the day at Hastings College came to Michigan this weekend.  I have not seen her since 1997.  There are only a handful of people in your life that you can pick up exactly where you left off, my dear Betsy was one of them.  

It was bittersweet for me.  13 years ago I left a great life in Nebraska to pursue my dreams in Michigan.  I was finally able to show Betsy what I had move to.  We toured Saginaw Valley State University and I showed her where I lived and even where I sat on my first night alone in Michigan.  It’s weird, while I was busy trying to figure life out back then, Betsy knew all along that I was an adventurer who set out to not only to learn about life but to conquer life.  She had faith in me and in predicaments to this day she will ask herself, “What would Jamie do this this situation?”  

Someone wants to think like me?  Gosh, seriously?  I live in a bubble of happiness, my make-believe world where anything is possible, I really like it here.   Well, since Maddox was born that bubble that I had spent 31 years building burst and I fell hard.  I am in the process of slowly rebuilding that bubble and I promise, someday I will float inside of it, inside that make-believe world where all dreams come true.  So thank you Betsy for loving my crazy idealist ways of thinking and reminding me that I can get back there.

After our SVSU tour we went to the pumpkin patch and I found the most perfect ‘punkin’ for Maddox. 

When we were done there, we went to the Saginaw Spirit pink out ladies breast cancer awareness hockey game to watch my girlfriend Rae play.  While I watched the game, Maddox was fixated on the mascot!

Just so you know, Maddox thinks that people who drink beer are absolutely hilarious!

One of the things that Betsy and I talked about was all of the tests that were done when I was pregnant that were supposed to identify whether or not Maddox had Down Syndrome.  I had over 10 ultrasounds because of the car accident. Even with each ultrasound, her heart and brain showed no indication of down syndrome.  I had hours and hours of fetal monitoring.  Her 20 week ultrasound showed no indication of a nuchal fold which is another Down Syndrome marker.  The 3D ultrasound never made anyone question her features.  And lastly, most importantly:

We did have genetic testing done prior to her birth.  

Guess what?  

It was lost......


Betsy said it better than anyone, “Maddox was coming into this world kicking and screaming whether you liked it or not.” 

When the evening ended with my girlfriends, Maddox and I went back to the hotel for our very first mother daughter night.  I thought we would take a dip in the pool but when I turned to ask her what she thought of this idea, her eyes were shut!  She was out cold.  Feeling like I wanted to conquer the world, I loaded her into the stroller, put on my suit and off we went at 10:00 PM to the hot tub.  I pushed her stroller right up to the tub, got many looks from strangers, and went on about my business. 

I was enjoying myself until two very friendly girls came to join me.  One had a nine month old and one had a seven month old, each child was home with their husband for the night.  They took a peek at Maddox, asked how old she was.  I told them, “Nine months.”  They both looked at each other in awe and said, “There is no way she is nine months.”  My first thought was yes I know how old she is.  Then the questions came.  How much did she weight when she was born, how tall was she, was she a preemie, where does she fall on the growth charts?  I skirted around every question all while wondering if I should blurt out, “She has Down Syndrome okay!?”  Instead I pulled the, “I need to go call my husband” card.  Up and out I went, so much for chillaxing in the hot tub.

We got back to the room and snuggled in the large king bed.   This was my favorite part of the entire day.  Ok, maybe waking up to a baby with her first bed head was more fun.

My only delimma this weekend was how to take a shower.  I couldn’t leave Maddox on the bed, the floor was gross, the stroller was in the car.....So, I laid a towel down, then her blanket and took her right in the bathroom with me! 

Yeah, by now I am feeling pretty invincible.  The final task of my trip was to figure out how to get my purse, the diaper bag, our overnight bag, the stroller, car seat, and camera backpack to the car in one trip since I couldn't leave Maddox in neither the car or hotel alone. Thank goodness moms have octopus arms.  

I put on the backpack
Put the car seat in the stroller
Put my keys around my neck
Hung the diaper bag on the stroller
And pulled my suitcase along

By now I was feeling more than invincible.......

                                       I was feeling like a mom. 




(And just had to take a photo)

We finally got Maddox back into the studio for another photo shoot.  

Don’t worry, nobody dropped her this time!

The following photos were made possible because my awesome and talented friends all pulled together for me, thank you!

I had to put these photos in a blog entry all by itself, these are priceless.  I am so lucky to have such a wonderful mom but I also have to thank my dad for unselfishly letting her come and stay with me.

My mom came to visit for a week.  Managed to pack each day with a new adventure and every moment was perfect!

I picked mom up in Flint at 10:30 on a Thursday night.  We drove to Ann Arbor and checked into our hotel at midnight because yes....Maddox had more U of M appointments.  One with a speech therapist and one with the orthotist.  Mom was introduced to hustle and bustle of hospital life and how overwhelming this can be.  When Maddox was born, I tried to explain to her just how intense the whole medical experience would be, I think today she realized.....

You can dwell on the fact that you are at the mercy of the schedulers at U of M or you can fill in the gaps between appointments with Babies R Us and lunch at the Olive Garden.  Mom, Maddox, and I had the most wonderful girls day out.  We raided Babies R Us, check out her new rockstar outfit!

That night we drove back to Alpena.  We spent the rest of the weekend relaxing.  Sito and Maddox played patt-a-cake on the bed and attempted to work on crawling but Maddox wanted Sito sing more songs instead of working.  

On Sunday, Maddox surprised Sito.  The last eight weeks, Sito had been caring for family in Nebraska.  It was time someone pampered her.

Scott started the day by making a great breakfast.  Maddox ate her first plate of scrambled eggs WITH HER FINGERS (Another skill most moms take for granted, but on this day we celebrated for Maddox)!

After breakfast, I told mom to be ready by 11 but didn’t tell her what was in store.  I took her to the best salon I know where Tracie gave my mom a new hair do.  Ok, Maddox helped blow dry.

Mom thought she was done and the surprise was over, but then we also had her makeup done. 

Maddox waited so patiently today.  She found some friends her size at the salon.

Maddox also spent time admiring herself in the mirror.....Only, she thinks she is hot stuff. 

My mom felt like a new woman and again thought her surprise was over but anyone that knows me knows that you can’t get all dressed up and not take a picture!!!  


PHOTOSHOOT TIME
                              BY THE CRAZY MAN IN SPANDEX 

Ok, so maybe he just got done bike riding.  Note the shoes, bright shirt, funky hat, helmet, etc...

We did some other fun things this week.  The three of us went next door to give Yankee some lovin.  Maddox is such an animal lover, we are in trouble.  Meet the next horse whisperer.

We also went to the pool.  A few months ago, Maddox could care less about Rubber Ducky.  It is amazing what a few months can do because boy was I in for a surprise.  Maddox now watches that duck and kicks like no tomorrow. Rubber Ducky, you’re the one.    I am so so so proud.

******VIDEO HERE******

Maddox, my mom, and I had the most wonderful week.  Maddox loves her Sito so much.  Mom thank you for everything you did for us this past week.  You play so many powerful roles in my life.  You are my best friend and I am incredibly thankful for that.  You are an amazing Sito and Maddox is so lucky to have you in her life.  You are my mom and I blessed and lucky to say that.  

You have taught me the power and meaning of trust and honesty, picked me up when I crumbled, glued me back together piece by piece, taught me right from wrong, guided me every step of the way, listened when nobody else would, kept all your promises, set me straight when I was lost, and you did this all while passionately and flawlessly loving me.  Thank you mom.

As our wonderful week came to a close, mom and I said good bye.  As Maddox shows us below... 


There’s no place like home.  There’s no place like home.  There’s no place like home.

****VIDEO HERE****

Safe travels mom, we miss you already.

I forgot to mention while Sito was packing, Maddox decided she wanted to go too!

SITO
Maddie's home will always be in my heart. I am so blessed.
SUNDAY, OCTOBER 10, 2010 - 11:45 PM


POPPOP
It's easy to see why I fell for this woman!
TUESDAY, OCTOBER 12, 2010 - 07:12 AM


SITO
I need to get a bigger suitcase!
FRIDAY, OCTOBER 22, 2010 - 11:39 PM