In case you are wondering this is a photo of the dogs polishing off Maddox’s birthday cake.  It was the only random photo to go with random thoughts. 

We finally have Maddox’s therapies squared away.  She receives in home services as well as outpatient services.  What this boils down to is that Maddox has therapy every single day this month and sometimes up to three different therapies a day.  She does get weekends off but unfortunately her mom is a occupational therapist and still throws in a few sessions.

I have the most incredible and dedicated babysitter ever.  She helps me get Maddox to all of her appointments.  I wish I had a million dollars because she deserves every penny.

This is Maddox’s schedule for January.

My baby girl works harder than you or I.....

And you know what....I wouldn’t change a thing.  Research shows that the window for learning is small and it all happens before 5 years of age.  I have a total of 1,825 days to pour in as much as I can.  Ok, since she is already 390 days old, to be exact, I have 1,435 days left.  I am on a mean mission. And I wouldn’t have it any other way.

To be honest, it has been a rough few weeks.  I thought I was good because I made it to Maddox’s first birthday.  What I never knew would sting as bad as it does is watching all of her friends turn one too.  I look at photos and can’t appreciate them as I should.  Instead I find myself analyzing each one, what types of gifts did they get, are they walking, how well they did opening the gifts, did they know what to do with the cake, etc...  In one photo, I saw the gift of goldfish crackers.  My heart sunk, Maddox has the start of one tooth and still primarily eats baby food.  This is when the reality sinks in.  

I can’t help but be sad and wonder what my life would be like if I had a real one year old walking around, saying mama, eating yummy toddler snacks.   (And yes I know all my friends will yell at me for that comment, but it’s the truth, I wonder this all the time.) 

On the other hand, in times like this, I have to force myself to think of the good.  

I recently assessed Maddox and she has met almost every milestone in the 9 month age range.  Motor is her weakest area and social is her highest area.  This past week some new things emerged.  

Maddox can drink from a straw.

Her first tooth is popping through.
Maddox ate her first mushy toddler raviolis and peas.  
She can go from laying on her back into sitting independently.
Say bah bah, la la, mmm, and dada.
She can walk with you when you hold her hands.
She can give you an object if you ask her for it.




Some things that are almost mastered:


If you give her a hairbrush or toothbrush, she almost knows what to do with it.  
She is working on the sign for milk, dog, and book.
She is days away from crawling.
Starting to play in kneeling.
Working on pulling herself to stand.

POP POP
Life is not a race, but a reveling journey of wonder. It’s as if a miracle unfolds each morning, opening itself to each of us to see, to touch, and to learn. Maddox is no different, nor is she bound by comparisons, that can speed life up to a pace that blinds us to the beauty that surrounds all of us. Watching her learn makes me appreciate the miracle of life more and more every day. Thank you Maddie!
MONDAY, FEBRUARY 14, 2011 - 09:45 PM


ANONYMOUS
My son didn't have any teeth untill he was 16 months old and my daughter was 14 months old...they gummed everything they had to eat untill it was soft enough to swallow...So Maddox beat my "normal" kids at this development!  I am enjoying reading your blog and just want to say that Maddox is such a cutie!
THURSDAY, JANUARY 12, 2012 - 08:15 AM

So many things to do here at the Great Wolf but we spent the weekend in 4 inches of water!  

On the left is Scott and Maddox hanging together in the baby pool.

We took our first family vacation, a vacation just for us, such a nice concept.  We had smiles and frowns all weekend long.  Smiles as we loaded up the car, took the dogs to the kennel and headed west to Traverse City to the water park.  The weather was good, Maddox was sound asleep in the car, traveling like a champ.  She probably thought we were headed downstate for more appointments but had no idea that the final destination of this trip would not include poking and prodding.  Frowns because things didn’t turn out like I envisioned (which is a reoccurring problem for me - I need to become more visionless).

Our first stop was Meijers for bulk gummy bears and snacks for the hotel room.  My excitement for the trip was building.  I love hotels, pools, and room service.  I especially love that I simply can’t pace the hotel room looking for something to clean, straighten up, organize.  There is nothing to do there except enjoy each others company - something that seems to get lost in the shuffle these days at home.  

The rest of our friends showed up and within minutes clothes were being thrown everywhere and swimming suits were being put on.  Off to the great water park we go.  Yea...Off to the great water park we go.  

My nerves are start brewing, my stomach starts cramping just as it always does before we enter a large room of people.  I hold Scott’s hand a little tighter, he gives me the, “It’s going to be ok“ nod.  

I can’t help but wonder who will know, who will stare, who will say something, who will have no idea.  In a room of a thousand people, will Maddox be the only one with Down Syndrome?  What if there is someone else who has Down Syndrome, do I smile and acknowledge the fact that we are automatically associated by disability? 

You see now why I like to hide out at home these days?  My mind doesn’t stop even when we are on vacation.

Needless to say, we walked in and my ultimate fear became reality.  

Right in front of me in the baby pool was a mom and her child with Down Syndrome.  It goes downhill from here.  I can’t help but watch and observe, to the point I would get kicked underwater by Scott and told to stop staring.  

I was comparing.

How old was she, how big does she splashe, does she crawl, how does she do drinking from a bottle, can she stand up in the water, does she have any words yet, is she their first child, are there any siblings, what do the siblings think of her, how did mom and dad react when they found out, does she have any heart problems, does she wear glasses, is there a gap in between her big toe, does she have a single palmar crease on both hands, my pondering list of questions go on and on.  

Vacation was supposed to be a vacation from this mental stress but I am starting to realize that it never really goes away.  

While I can’t take my eyes off this family I realize I am faced with a decision.  Do I go introduce myself and pretend I am cool with being an automatic member of the down syndrome ‘club’ or do carry on like this is no big deal?  Well, I did a combination.  I did the sympathetic - I know what you are feeling because I feel it too - smile and moved on. 

This trip had been in the makings for a year.  I was unsure if I was even going to be able to handle going and watching all the “normal” kids so I made sure to plan this nerve-wracking first adventure with people I love and trust whom I knew would help and support us.    

Anyhow, since my dreaded down syndrome fears all came true so there was only one thing left to do...Enjoy my vacation.

Only, it was not so fun.  We spent the entire weekend in 4 inches of cold water.  Maddox tolerated the baby pool for about 20 minutes and then her hands and feet turned blue.  I think it was a down syndrome circulation thing, yes another reason I was a wee bit bitter at ‘our’ situation.  All the other little babies had no problem playing and splashing for hours on end.  We did not have anyone available to watch Maddox while Scott and I went down the water slides even once.  We could not climb on the big water structure thingy because Maddox cried when the cold splashes hit her face.  We tried to play in the arcade but forgot a stroller for Maddox and our favorite two player games had to wait.  Yeah, we were striking out.  I went to plan B.

SHOPPING with a 30% off coupon at Kohls, yahoo!!

That night we went to story time at the Great Wolf.  I did not think Maddox would care about the talking bears and owls but she was interested.  We sat about 25 feet away and when the talking animals would make a funny sound she would turn her head and look.  I was excited out this.

The next day it was snowy and cold outside, the perfect weather to stay put in a hotel room with a Jacuzzi tub and gas fireplace.  We ate breakfast at the hotel, Maddox ate her first full adult meal!  Pancakes, eggs, yogurt, muffins, and cherry bread pudding.  She was one happy girl!

I did run out once on Saturday and got Qudoba’s to go.  We ate picnic style in our hotel room.  Scott and I packed several board games to play with others but it seemed as though the water park wears people out, nobody was up for games and called it an early night.  Maddox and I snuggled ourselves to sleep while Scott enjoyed uninterrupted sports center.

The next morning we packed up and headed out...in bad weather.  The roads were snowy and icy, much different on the west side of the state than the east side.  We made it home safe and sound and then the worst part of vacationing began.....UNPACKING

Needless to say, I think we are going to wait a long time before heading there again and my great wolf was happy to be home. 

See below...This is Scott’s nonverbal look for: 

“Okay Jamie, I have been in here with these screaming kids long enough, please can I be done.”

A one year old can never have too many birthday parties!

So, 12:02 hits.  All the anxiety from December 5th built up to this moment.  I thought I was going to feel a huge sigh of relief.  I made it, I made it to her birthday, one year, the hardest year of my life is done and over.  

Except, I didn’t feel relief.  

I felt the pain all over again remembering the events that soon followed Maddox’s birth.  Her cold blue feet, the nurses taking her away, the doctors reviewing our family history, Maddox getting put in the NICU, the mention of down syndrome, the silence of the halls in the hospital that were only hours before filled with joy, the darkness of the evening that quickly fell upon us, and last but not least…. The infamous conversation that Scott and I had in the corner of the hospital room that night while I completely and utterly shattered to a trillion pieces in my husband’s arms.  

I hope these feelings fade over time and I can learn to celebrate this day.  I have thought really hard about how to help other’s begin to understand what this day feels like.  

Think about the best thing that has ever happened to you in your entire life and how you felt.  Think about the worst thing that has ever happened to you in your entire life and how you felt.  

Place those two events minutes apart from each other.  You won’t know whether to laugh or cry huh?

And because I love analogies, here’s my best shot!

You go to elementary school to learn the foundations of being a good student, you go to middle school to figure out what you are good at.  You go to high school to narrow down your career path and go to college to fulfill your career path.   During all of these years your parents are your biggest fans, encouraging and guiding you every step of the way.  And truly, without them, you would not have been able to stay on the right track to complete the goal you set out for which in this case is to become a pediatrician.  Now fast forward to graduation day.  Today you receive high honors recognizing what you have so diligently worked your entire life for.  When you step on stage to receive your diploma you glance over at your parents.  Only, their seats are empty.  Your heart races, you imagine the worst, and as you step off the stage you receive news of the worst.  Your biggest fans were in an accident on the way to your graduation.

Sounds extreme I know, but hear me out.  

You now have a job working at a local pediatric clinic, this was your life dream and should be thrilled with your accomplishments.  Only, every time you sign MD behind your name you are taken back to the dreadful graduation day.  

The moral of my story comes next.

You don’t know whether to be excited that you accomplished everything you set out for or be devastated thinking about the loss you suffered on that same day.  One minute you smile, the next minute you cry.  There is good with bad and bad with good, pretty much you are stuck between a rock and a hard spot.  I am telling ya, this is a difficult position to be in, and a way more difficult position to get out of.  

How does one begin to find the good in one of the most tragic unexpected events of their life?  Without further ado, I give you Maddox’s birthday party.  

Surrounding yourself with friends and family is what you do.  The exact same group that visited Maddox in the hospital when she was born on day one is the exact same group of people that came together tonight to celebrate Maddox’s 365th day of life.  Thank you my friends, thank you a million times over again for opening your hearts to a whole new world.  Without these people, I wouldn’t have moments like these....

The good is all around me.  I just have to stop and smell the roses once in a while.  Maddox is loved by so many people.  In the 365 days here on this earth, she is already changing lives.  In one year she has taught many people how to pray harder, laugh more, and rejoice in the moment.  

Here are a few examples of me smelling the roses.  I received a text message on Maddox’s birthday with this photo.  How can you not say, “Awwwww....”

Another rose moment was when I opened my Facebook and never imagined to read so many incredible messages of support on Maddox’s birthday but things really started to sink in when I saw that Facebook changed Maddox’s age from months to 1 year.  Yes I made it.  I look at my status updates from one year ago and I am in a much better place now (on most days during most moments).

Something else....When Maddox was born, my friend stole a box of Kleenex from work and brought it to me at the hospital to spare my sandpaper nose (Because you know those cheap recycled Kleenex are good for just about anything but wiping your nose). Well, today, 365 days later, while I was reminiscing about Maddox’s birth, I reached over and grabbed a Kleenex.  It was the last Kleenex from that box!  Throwing the box away was almost symbolic.  

My last smell the rose moment is something I have not done in a year….. 

Paint my nails!  This is good because this means there is a small chance that Jamie just might be on her way back. 

I have one more rose smelling stop to make.  My next goal is to read a book again. A real book.  One which I need to use my imagination to dream up a storyline and maybe put down the down syndrome research for a while which is what my library consists of these days.

A few other random thoughts I want to share....

This year I planned on starting a new birthday tradition.  For Christmas Maddox received all kinds of gifts but I also want to teach her more about giving instead of receiving.  We decided instead of buying her birthday gifts that we would take a collection of donations and take items to the local baby pantry.  This was so amazing and I would like to continue this tradition for years to come.  

Maddox helping others less fortunate than her....Who would have thought?  

Finally, I want to end with the greatest news of all.  Maddox did not receive the best gift this season from Scoot and I, it was  the other way around.  We received the best gift from Maddox...  The gift of communication.

Maddox can now bring both hands together and independently sign “More” - YAHOO

Signing time with Maddox will be AVAILABLE ON HOME VIDEO JANUARY 17TH    

(In other words, check back soon, I have been too excited to catch this on video but I plan to get it this week for you)

That’s all I have time for tonight, back to mommyhood I go...

In the elevator on our way to be induced January 5th 2010, 7:00 AM.  

We are looking at each other wondering if we are really ready for this...  Not knowing the journey that really lie ahead...

One year ago today at 4:00 PM, I went in for a check up with the midwife.  I was two centimeters dilated.  The midwife and I came to the conclusion that I would deliver naturally.  After I left the appointment, she spoke with the doctor and due to the placental abruption the doctor wanted me to be monitored during labor; therefore, an induction would be scheduled for 7:15 AM on January 5th.  My due date was not until the 20th!

As I was driving home, my phone rings.  It is the midwife.  She tells me about the decision to induce.  I panicked, pulled over in the big lots parking lot and hyperventilated.  I needed a few more weeks to prepare.  I was not ready to deliver a baby in 12 hours.  I called several people to tell them, including my mom who frantically booked a $1000 dollar plane ticket to Michigan.  She was scheduled to arrive at 1:30 PM the next day, January 5th.  She had plenty of time to get there, right?  So we thought.....

I drove home with one of those weird expressions on my face.  It was a combination of shock and while trying to hide a smile.  I was excited but nervous.  I walked into the house and Scott was building a fire in the fireplace.  I went up to him and in a low voice said, “Honey....”  He said, We are going to have a baby?” 

I said, “Yes, are we ready?”

He said, “Ready as we will ever be.”  And we hugged.  

We hugged by the light of the fire not knowing what our future held, not knowing if we were ready to be parents, and most definitely not knowing the challenges that lie ahead of us.

Induction scared the ba-jeebies out of me.  LITERALLY

At 3:15 that morning I awoke to sharp cramping avery 4 minutes.  At 4:15 I got up and decided to take the worlds longest shower figuring it was going to be my last relaxing one for a while.  I had a contraction timer downloaded on my computer.  During my 30 minute shower I would reach out of the shower to start and stop the contraction timer.  They were three minutes apart.  I decided to do my hair and makeup again knowing it was going to be a long while before I could dress myself up - not knowing that it would be a long while before I ever cared to dress myself up.  

I was all ready to go to the hospital at 6 AM, looking like a million bucks!  My contractions were getting stronger, just a few minutes apart.  We debated about going to the induction early but I told Scott just to wait until 6:45 and we would head then.  I needed to time let reality set it!

Once we arrived to the hospital, I told the midwife not to give me pitocin, I wanted to see if I would progress naturally.  She checked me and I was 4 centimeters dilated already, and hey, I was in the running to have the New Years baby....Yes on January 5th!  Another gal and I raced to the 10 centimeter finish line, but she ended up beating me by a half hour with a c-section.  The other bit of bad news, my race to 10 centimeters was so short that Maddox was born at 12:02 PM......1.5 hours BEFORE mom was supposed to arrive.  So yeah, that really expensive plane ticket and the pilot still did not fly fast enough.

12:02 PM January 5th, this is where it all began, or ended, not so sure.  All I can say is that the last 365 days were home to some of the worst days of my life.  I am not even sure if I can say that some of the best days were included in there.  I know that is a bold statement, but I promise, there were way better things that have happened to me in this lifetime and 2010 was not the year.  

Needless to say, I was feeling pretty crummy today as I relived the events of last January 4th.  I walked into the door of my home after work and I saw Maddox.  She was clapping and busing up hysterically.  

Umm, yeah....How can you feel bad when you come home to this?!!

Ok so there are this many moments until Maddox’s first birthday.  I am feeling a little overwhelmed, lost, angered, anxious, and deep within the crevices if I search hard, I might find a little joy.  My next few posts will reveal my innermost feelings as we approach Maddox’s birthday.  I will share the honest truth both good and bad.

I am angered because as I count down to Maddox’s birth, instead of planning the perfect party with perfect decorations I am planning how I am going to get Maddox to all of her therapies for this month.  While all my friends celebrate their child’s first birthday I can’t help but think about all the accomplishments they are actually celebrating.....eating big kid food, drinking from a sippy  cup, crawling, pulling to stand, using a spoon, throwing a ball, pointing, etc...  You know, all those little things parents take for granted, our daughter is not doing any of them.  So you see, I have to search hard to find what it is we are going to celebrate.  And this...below....therapy every single day.....is not what I want to be celebrating.

January 2011 Tentative Therapy Schedule for Maddox

3rd PT 12:45 
4th Speech
5th Teaching 8:45 (Happy Birthday Maddox) 
6th PT at ARMC 12:30
7th Teaching 8:45 and Speech
10th Outpatient PT, OT, ST at ARMC (Scott and Jamie taking day off, no Susie)
11th PT at ARMC
12th Teaching 8:45 and Speech
13th PT 12:00
14th Teaching 8:45 and Speech
17th PT 12:45
18th PT at ARMC
19th Teaching 8:45
20th Speech and outpatient OT, PT, and ST
21st Teaching 8:45 and Speech
24th PT 12:45
25th PT at ARMC
26th Teaching 8:45 and Speech
27th Outpatient PT, OT, and ST
28th Teaching 8:45 and Speech
31st PT 12:45

Think January is overwhelming?  Throw March on top of it.  In addition to her above therapies I just received our Ann Arbor medical appointments schedule.  In two days we will see eight doctors.  

Cardiologist
Speech therapist
Audiologist
Physical Medicine and Rehab doc
Otolaryengologist
Orthotist
Genetic Otolaryengoloist
Pediatric Surgeon

Thank goodness we are done with the opthamologist and pediatric genetics doctors for a few years!  10 appointments in two days would not have been cool.

I hope now, you can begin to scrape the surface and understand why it is hard for me to focus on pretty birthday cakes, presents, party hats, and candles?