As Maddox is getting better at walking, some of her therapies are decreasing which allows her more down time.  The result....

Maddox had her first for real live normal day.  Most other’s would not celebrate this day, but to us, it was triumphant. 

She woke up, and attempted to walk through the house to my room but those warm footie pajamas were not cooperating.  I’d hear her grunt, stand, take a few steps, then thunk the floor.  She finally gave in and crawled the rest of the way only to meet me with a great big smile.  This is her day, a day of freedom, a day she had worked hard for.  No place she had to be, no therapist telling her how to perform.  

So what on earth will Maddox and Susi (the baby sitter) do?

STORY HOUR AT THE LIBRARY

As 11:00 approached I couldn’t help but wonder how it was going for Maddox.  Did she play with the other kids, did they talk to her, could she answer back, did she follow the storyline of the book, would she listen to the directions, if all the kids wander away will she follow, will she walk or crawl, would she blend in, would she know the song they sing, and would she perform the actions?  My mind was a whirlwind of new mommy fears.

My curiosity got the best of me, at noon I text Susi at noon to see how it went, she replied, “Great.”

Whew.


I got home and was able to hear all about it.  Maddox and one other gal listened intently to the story and pointed to pictures when asked.  They sang the wheels on the bus and Maddox did all the actions.  She also showed off her mommy lovin skills and rocked her own baby during the goodbye song.  She even showed a little boy how to crawl through a tunnel.  She was brave enough to try it (on the third attempt) and HE followed HER!  


My daughter a leader?  For two years I sat at home and wondered how she would feel when the other kids left her in the dust, but today she leads....and other’s followed?  


Atta girl!!


Maddox fell asleep within three blocks of leaving the library.  Having a normal day is exhausting!    The babysitter decided to go through Arby’s to get a pop.  She quietly whispered her drink order while Maddox was sound asleep in the backseat.  As she pulled up to the window to pay, she glanced in the backseat only to find Maddox frantically signing SANDWICH SANDWICH SANDWICH.  Susi asks if she can add a sandwich to her order and Maddox stayed awake the entire drive home to partake in fast food delight! 


There is so much to be said for mainstreaming.  That’s another soap box for another day but today I will cherish the memories of Maddox’s first day as “normal” child doing normal things.


I know there will be readers out there who will want to tell me that Maddox has been normal all along and so on...And yes, while deep down I know this, today I got to witness it.  And witnessing it makes me smile.  A smiling mommy means - I’ve hit another milestone.  


But here’s the thing.  Our perfectly normal day couldn’t end without one more perfectly normal thing.  Before bedtime, Maddox was standing at the couch.  She looks over at me, picks her runny nose, and sl-i-i-i-i-i-ides her freshly coated finger down the cushion of our new leather furniture.  


Atta girl.

I am two and loving every bit of it.  I am learning how to walk, feed myself, and throw tantrums!

Maddox had three first birthdays and three second birthdays.  She is really going on six years old and starting to look like it.  The following pictures are from a birthday this weekend with her grandparents.  She got a new sand and water table.  RIght now it is set up in the house with water in it....Wonder if this will keep her out of the dog dishes?!

Happy Birthday Maddox, you are growing up so quick.

ANONYMOUS
Beautiful little! Girl! Happy 2nd birthday maddox, what a difference your making in people's lives.
THURSDAY, FEBRUARY 2, 2012 - 09:45 PM


ANONYMOUS
Beautiful, beautiful girl xx
SATURDAY, FEBRUARY 4, 2012 - 10:30 AM


ANONYMOUS
Hello Jaime,
My name is Patty Razzante and I am the Staff Development Specialist for the Lake County Board of Developmental Disabilities in Mentor, Ohio.  I recieved the link to your gambling you tube video on facebook actually from one of my co-workers suggesting that perhaps I could use it for training.  I am writing to you to see if that would be acceptable?  I am always looking for new ways to create awareness in our employees, and I would love to share your video.  Person-first language is my personal "soap box" and Maddie sure gets that point across well!  Please contact me at patty.razzante@lakebdd.org to share your thoughts.  Thanks for your sharing, and consideration,
Patty
TUESDAY, FEBRUARY 7, 2012 - 09:19 AM

You mean to tell me nobody goes down a water slide in their wedding dress? 

Ohhh, but it was so much fun

Looking back at my wedding photos always seems to sting a little.  I see a vibrant, spontaneous, spunky girl who is madly in love with her newfound incredible, kind, and patient husband.   You can tell by my smile that these were the radiating glory days.  

Life was perfect for me.  

I found the love of a lifetime, was getting married, completing my Doctorate, buying a ‘real’ home, adopting a mischievous puppy and a furry lil kitten.  

My dreams were coming true one by one.  

Never in a million years did I imagine my luck would run out.

On January 5th 2010, it did (or so I thought) because that’s the day my vibrance, spontaneity, and spunk - died.  

I was unsure if the real me would ever return.  

I hid in the corners of crowds, no longer seeking to be the center of attention.  I spent my quiet moments secretly crying.  I would go grocery shopping at 5:30 in the morning and walk with my head down to avoid conversations with anyone.   This is sad because I used to be such a chatter box.  I used to love up on any of my friends kids but during this dark period, I was filled with so much anger that it was just easier to avoid them.  

Basically, I represented the true meaning of the phrase, “Fake it till ya make it.”

Guess what ya’ll?

I’m starting to make it.....Finally.

My weekend started with this family moment.  A real family moment with a happy mommy, a loving daddy, and laughing kids.

***VIDEO HERE***

Throughout the course of the weekend, we had a few more moments where I stepped back and realized that life just might be ok.  Maddox has learned to eat a meal from her plate without grabbing all the food at once and MacGregor is eating a few bites of baby cereal....

Which means we sat down and had a family dinner, the four of us (plus two doggies and a cat).

Before bed, daddy read to all of us, Alice in Wonderland.  While Maddox didn’t understand much of the story she was excited about the rabbit.  The best part of the evening was when Daddy, Mommy, and MacGregor walked Maddox down to her room to put her to sleep.  We all kissed her goodnight and then tucked MacGregor in his room for the night.  

This is the way it should be.  

I love the comfort of my own home were down syndrome doesn’t exist.

Yes, even though I am starting to ‘make it’ I still worry about the future.  Will people still love Maddox when she is 16 and continues to  watch Barney?  How will I have the talk with her that she can’t have children?  Will she live in a group home, and will her best friend be her case manager?  

I am learning to live more in the moment and worry less about the future because I have struggles to overcome today and tomorrow too....Like her upcoming IEP, her outpatient therapy running out, and should I sign her up for preschool?  

Ugh....I can’t be worrying about what happens 16 years from now AND what happens 16 hours from now.  I’ll get grey hair waaay too fast.

People tell me that moms worry about their kid regardless of if they are ‘normal’ or disabled.  

I have to say I disagree.  

I have one disabled child and one normal child.  

I can tell you I don’t care when MacGregor rolls over because I KNOW he will.  I don’t care how much he eats because he is ON the growth charts.  I don’t care how long he sleeps because his internal alarm clock actually WORKS (Maddox’s hasn’t from the day she was born). 

Ok, sorry, this post was really intended to show you that the real me was making a comeback but as you read, you can notice that will I am starting to ‘make it’ there are still day to day struggles.  It’s part of the emotional roller coaster I ride.  I wake up happy, blink, and then something will pull at my heartstrings.  

For example, last week, I had just accomplished something huge at work and someone comes up to me and says, “Welcome back, we missed you, I know it is tough.”  

He knows it’s tough?  

Really?  

He knows what it’s like to walk a mile in my shoes?  He knows what it feels like that the baby sitter gets to take Maddox to therapy everyday and her own mom can’t be a part of helping her become her very best?  

He knows how it feels to work months on a skill and miss the shining moment because I was working?   

He knows how hard it is stare into the eyes of a child that you are still trying to accept?  All while this same child stares back at you with unconditional wholehearted love....

Grrrr.....He doesn’t really know what tough is.

Yes, I went from happy to sad in seconds.  There was a time in life when I was nothing but happy and I patiently (ok, not so patiently) wait for her return. I know she’s getting closer.  

In the meantime, I just have to keep building on the good things.

Don’t know about you but I need to see that giggle video again!!!!

***VIDEO HERE***

MacGregor Linus McClintic entered this world on October 6th.  Someday I will have to sit down and express to you my feelings about how different the birth experiences were in that one birth brought an unimaginable amount of joy and one birth was in a sense a day filled with grief.  There is such a huge difference in how I perceive both my kids birthdays, yet today, even with two different beginnings, I can honestly say I look at both my children and love them equally.

OK, I am getting off track.  

SAVANNAH FRANKS, SE KANSAS

I Loved It! If it wasn't for this video from YouTube yesterday being shared on Facebook, I would have never found your page. I haven't gotten threw the whole site but I definitely will. I am a young mother of a special little boy named wyatt, he is 3 an has down syndrome as well. Everyday is a challenge, I knew from before birth that there was a chance he had down syndrome (blood test came back positive). I didn't choose to fully believe it till much later..... When I mean later I mean way later..... I was in denial. In so many of your blogs and articles I think "wow she's thinking what I thought, she's having to go threw what I went threw". I won't lie I cried when I watched your video, and I've cried reading your story on your site, cuz even though my son Will be 4 in September I personally know only one mom that's battled with a special needs child ( whom has done raised hers with autism and has shared stories). I've never heard anyone else's story.  An I enjoy reading about your precious daughters story, an all of her accomplishments. I Will continue to read on and check back often for updates. 

My son started preschool in August of 2011, he was a few weeks short of his 3rd birthday ( September 5th) but, was able to attend. He has the most Amazing teacher(she's the person I mentioned above with a special needs child)!  One thing that she reminds me each time I struggle or need reassuring, " Your an amazing mother! Raising a child who Will never know the words I CAN'T! " 

I could type for hours on here but I can't seem to see what I'm typeing (I'm on my phone). So I Will get off here keep up the great work! Please look me up on Facebook Savannah Boyer - Franks to chat and see pictures of my lil boy, I was hoping to add one on here but am having complications on my smart phone. *Savannah Franks
FRIDAY, MARCH 23, 2012 - 02:36 AM

Prepared for any adventure life takes me on.

Have I mentioned that Maddox has no fear?  She continues to amaze me with each passing day.  This weekend we were invited by some great friends to go tobogganing behind a four wheeler.  These new friends have captured our hearts as we watch their love for our children unfold.   This just doesn’t happen anymore, or at least I didn’t think it would happen to us.  We are blessed with the most amazing support system.  Thank you.  (In addition to my real time friends, I also have to thank my followers, the prayers and all the positive comments you have written has warmed my insides).

The first few photos are from this weekend.  At first Maddox was a little scared but by the end of the ride she had her hands in the air shouting, “Go, go, go!” 

As I am reflecting on how proud I am that we packed up the car with both kids and went on our tobogganing adventure I am also thinking about my personal bravery and accomplishments during the last two years.  Despite having some bad days in which I parented on autopilot, I was still able to provide Maddox with some tender experiences.  These experiences are what has made her the fearless fighter she is todays.  I decided to post some memories.  As I scroll through them, I smile.

She loves the water.  First I enrolled her in swimming lessons.  I will never forget telling the instructor she HAS to learn to swim, that way if she ever get’s lost, I will know she isn’t drowning in a nearby lake.  

Well, lessons turned in to outdoor pools.

She graduated from the outdoor pools to water parks. 

Then one day the magic happened.  She sat on the ledge.

And my fearless fighter, JUMPED!!!

If the water is way too cold, Maddox always finds a way to stay afloat!

Last year, she set sail in a REAL boat!!

My braveheart attempts anything!  
Planes, Trains, and Automobiles!! 

Sometimes she prefers to get around traditionally!  She never shows fear with horses.

Or any animal for that matter!

You can’t ever take you eyes off Maddox or things like this will happen!  And yes, she did all these herself!

Whether my little one is sitting around or hanging around, 

She’s always full of surprises.

I pray her determination never fails as her fearlessness truly defines her.

Maddox Lucille, keep on living, you are unstoppable.

You betcha Maddox blew out her own birthday candles!!! 

(Thank you Sarah Rosenfeld Johnson-Speech Therapist and owner of Talk Tools)!

(PS. Read the entire post before judging my raw emotions.)

I’d be lying if I told you the days leading up to today were fantabulous.  I had many meltdowns some with my husband present, others while kissing Maddox goodnight watching her sleep, sometimes I’d even be sitting all alone and the tears would start to flow.  I tried hard to narrow down what exactly it was that was getting to me this week.  

Because when the hubby asks what’s wrong, you better have an answer...Replying, “I don’t know” doesn’t cut it :)    

24 months.  That’s all it’s been.  Two years sounds like a long time and yeah it seems to have went fast but seriously 24 months is all it’s been and the world expects that I have healed and moved on.    

No.

Not quite.  As we approached the days and hours leading up to Maddox’s second birthday all I could think about was the happiness we thought we would endure that day.  The birth of our little baby girl.  The little girl that would grow into my best friend, we would share secrets and late night root-beer floats.  The little girl that would come home to tell me all about how she held hands on her first date.  The precious baby that Scott would walk down the isle and give away to a wonderful gentleman.  Yes, basically I still grieve the loss of the little girl I thought we were going to have.  

12:02 that day went from this.....

To this...

So here we are 730 days later.  I have only had 730 days to process the new life that lie ahead of us.  While yes, every day continues to be a struggle and I can not lie, with every new birth there is an eentsy weentsy bit of jealously that pulls on my heartstrings, along with a great big truthful congratulations.   

So basically, I may never be over the loss I suffered that day, but I am learning to celebrate the life I gained that day.  

Without further ado, I present Maddox Lucille’s homemade mile high rainbow birthday cake!!

Maddox Lucille, my love for you grows stronger everyday.  Your smiles are contagious.  Your humor is one of a kind.  You loved to be scared and appreciate jokes!  You are the hardest worker I know.  You brave every challenge without fear.  You will accomplish anything you set out to do.  Don’t be afraid of the world.  Spread your love, teach others the foundations of life.  Your dad and I believe in you.  You are already on your way, making your mark.  You are without a doubt, burning a whole new appreciation into my soul.   We love you, Happy 2nd Birthday Maddox Lucille.

And the countdown has begun!

See you next year when she hits the big ol three!!

Oh....

And wish us luck during the terrible twos.  (Although I hear it really should be labeled the terrible twos AND threes.)

ANONYMOUS


1) Happy Birthday Maddox!
2) I especially love the "chocolate face" picture :-)
3) What a journey - WOW!
4) I wish every child had such supportive family and friends.


Randy Christensen
Livermore, CA
MONDAY, JANUARY 16, 2012 - 01:50 PM


TNT23TNT23@YAHOO.COM
Just stumbled upon your website... Maddox is such a beautiful baby!!  You are a inspiration to me.. I have a child with severe autism and i wish i was as strong as you are.  I understand the mourning of a child that you dreamed of. When my daughter was younger i dreamed of what her life would be like and what my life would be like. But that all changed when she was 2 1/2 years old and we learned that she may have "Autism" and then to get the DX when she was 4 everything i dreamed for her and for myself "died" in a sense. But she is now almost 11 and I have a new set of dreams and hopes for her.  She is a bright young lady who just marches to the tune of a unheard drummer.  Thank you for you honesty and  sharing Maddox with me.  Hugs from Idaho
TUESDAY, JANUARY 17, 2012 - 12:58 AM


ANONYMOUS
Hi! I too stumbled on your video on you tube and I broke into tears honestly. I haven't cried for maybe more than 6 months now...I was feeling exactly how you are feeling right now 6 months ago ( more or less). My daughter Melanie, she's 3 and a half also has the Down Syndrome and I too struggled with different emotions and I was so sad about the fact that she's not what we, no I expected her to be. You see my husband handled this situation much better. The first time she did her therapy was at 4 months and she cried so hard and my heart just ached literally from feeling so sorry for her. I thought wow all this just for a shot of even being a bit "normal".... I want her to have friends, a best friend, to go out dancing, meet boys or maybe you know lie to me just to borrow the car...( maybe not so much that :))  As time went buy I just got over it. We are now the best of friends, we have so much fun together and I can see that she loves hanging out with me. What changed for me was that I started to just treat her like how I treat my older son Francesco who is 6. I still do therapy with her myself but I'm more relaxed now...I let her decide what she likes or what we should, at times I just let her teach me. I got to know her a lot more doing that and I guess I realized that she's happy with who she is and that I should be too. By the way we live in the south of Italy where everything seems to be moving backwards....where families with special needs children are even ashamed of them:( Government structures are not all equipped to do physical rehabilitation because there is practically nothing! But Melanie managed to walk at 2...also 'coz I did therapy myself with her everyday...whatever I could think of and use. 

Happy Birthday Maddox!!!! You are so lucky to have a very supportive family and a very dedicated mother. Hope one day you can get to know Melanie and play :)
THURSDAY, JANUARY 19, 2012 - 12:40 AM


ANONYMOUS
Wow, hi we are an average successful family that wants to give back to our community and support DS family’s in our region. We don’t know anything about DS but I recently started doing some research and came across your site and need to say you’re awesome.  I so appreciate you sharing your honesty and raw emotions.   Keep up the raw emotions because it is real and I can only assume the majority of parents are going through the same emotions and need to heart it.  Today we invited a local family with a DS daughter over for dinner.  My goal is to discuss how we can help.  Just keep up the great works and we will do our part to help families in need.  We will keep you posted and I shared your video with many others.
SUNDAY, MARCH 4, 2012 - 05:54 AM

This by far was one of the most special holidays ever.  We had two beautiful children and was able to spend time with both of our families.  It really doesn’t get any better than this.

We were able to hit up Santa’s house after waiting an hour in the freezing cold.  Once inside we found out that there was another wait to see Santa.  All for what?  A photo of the kids in winter jackets with chapped cheeks.  We passed and will try again next year.  Oh, don’t worry, catching a photo of Maddox in fear of Santa is on my bucket list.  Every mom has one of these pictures!  We enjoyed time with family and friends this year.  Maddox started to get into unwrapping but still at times thought the box was more fun than the toy.  Poor MacGregor couldn’t participate much and because of this he became the official bow holder.   I absolutely love having kids to celebrate with, the holiday becomes more magical each year.

The true meaning of Christmas...... having friends who celebrate with us and love us.

Bon Voyage.

My little world traveler visited Nebraska, Michigan, Rhode Island, and Pennsylvania all within a two week time span!

I had been working since January 2011 on the trip of a lifetime for Maddox.  


This truly is a a trip that will continue to extend way beyond our vacation.  Maddox is scheduled to see a nationally known Speech Therapist who specializes in oral motor development, she is the best of the best.  As I posted on Facebook this morning, it’s not Michael Jordan but the next best thing.  This visit was scheduled on Sunday in Rhode Island.  

Then, on Tuesday in Philadelphia we are scheduled to meet with the Down Syndrome Trisomy 21 clinicians at the Children's Hospital.  There are only two of these clinics in the US so I am hoping to get top notch researched based information.

I am writing this live, so here is how the trip is unfolding so far.

Friday July 29th


I double checked my airline tickets and saw that I departed Alpena at 8:00 AM on Saturday.  Everyone was telling me Alpena doesn’t have an 8 o’clock flight.  I called the airport (a few times), finally got someone and they said the only departure is 5:44.  

I panic.  

Until the guy says, “Wait, it IS 8 o’clock on Saturdays.”  Geesh.  I am off to a great start.

Saturday July 30th

I said a sad goodbye to Scott.  He was originally going to go on this trip but ticket prices skyrocketed and there was tons of work to be done on the renovations to our house.  He was feeling terrible for not being able to assist me, but I reassured him all would be well.  I had given myself plenty of time in between flights.  The other moms I see traveling always seem to make it look so easy.  I can do it.  


Security was crazy in our little Alpena airport.  By the time I got through, it looked like my diaper bag exploded.  There were shoes, diapers, computers, cameras, bottles, stroller parts, and toys everywhere.  Some nice fellow offered to hold Maddox while I regrouped, collected my things, and got re-situated.

The photo above is the before picture because once the plane took off, the first leg to Detroit was terrible, I had ‘one of those kids’ - you know, the kickers and screamers.  Maddox had eaten and drank all her milk and was fine and dandy until the lady next to us decided to eat a granola bar.  Maddox signs eat, eat, eat, eat, and kept signing so I got her a granola bar.  

Guess what, my almost two year old threw and almost two year old tantrum.  She didn’t want any old granola bar, she wanted the lady’s granola bar!

Finally, after I calm her down, her eyes close to rest and wham the ties of the jet hit the ground, we have landed.  So much for timing of nap number one.  

Something ironic did happen at this stop though.  

A wonderful lady offered to hold Maddox while I got her stroller out and situated.  10 hours later I receive a note from a friend in Texas, turns out it was her mom that offered to help me!  It’s such a small world.

We have one hour in Detroit so I went to buy a lifewater.  You know, one of those delicious drinks you pay maybe $1.30 for in real life.  Yep, the airport charges 3.50 for one.  I am in for a rude money awakening on this trip.  I think I prefer Alpena’s cost of living!

Another thing about the airport experience.  I forgot that you can’t take the stairs or escalator with a stroller.  A new mom thing.  I get in the elevator and my already exhausted butt leans against the wall to rest.  The pilot says, “Humm, wonder what the alarm is going off for?”  It takes about 4 more seconds until I realize it’s me.  

Um, yeah, don’t set off the elevator alarms in the airport - unless you want a first class ticket to hang with security. 

Before we boarded I wanted to change Maddox’s diaper.  Now, in my 18 months of mommy hood I have never been peed on.  I went about my business - almost - as usual.  Got the diaper off, prepared the next one and oh....decided to wipe a nose with a cold baby wipe before securing the diaper.  

You see where this going?  

Baby flails, baby gets mad, baby pees entire 8 ounces of milk from the first flight.  

And I mean pees, all 6 inches straight in the air.  EVERYWHERE.  That’s not the worst part.  That part consists of a line of 10 people all waiting to use one broken paper towel dispenser. I just wanted to shout HAND DRYER PEOPLE, save the earth, and let this poor mom clean up the massive amount of pee Maddox is laying in because it was quite obvious we were going to need more assistance than a hand dryer.

Anyhow, we board to Rhode Island and had two seats to ourselves so Maddox slept the entire way.  It was perfect.  Upon landing I find the shuttle no problem and head to the hotel.  The shuttle guy was extremely helpful, turns out he has worked 7 days a week for 4 straight years now, only missing one day.  It’s amazing the ambition some people have.  I need to review my own work ethic because that is incredible!

After settling in we decided to walk to get some food.  I am pretty much lodging in an airport hotel, nothing near by except gas and Dunkin Doughnuts.  We head to of course Dunkin Doughnuts to get a snack and a vanilla bean latte.  It was 90 degrees and we walked 4 city blocks, sweated like pigs, took several rest breaks, and even got sunburned!  But, came back with goodies and an 800 calorie latte.  But it was sooo hot the calories didn’t matter.  Yeah, I thought of every excuse possible to drink it!  

The best part of this walk though were the people I was able to observe.  There were two stoners sitting on the sidewalk staring at each other’s tongues while sharing a slush puppie.  There was also two grandmas in swimming suits driving an old beater car with the stereo on as high as it would go.....Listening to.... RAP.  

Oh, I do miss the individuality of city living.

We walked back to the hotel, ate our snack and Maddox took a nap.  When she got up I was determined to see something in Rhode Island besides Airport Blvd so we walked some more in the heat and found a shady park.

I called in Chinese food to the room, only to find out there are delivery charges and tips and all the extras, another reminder of the big city!  My 8.99 meal ended up being 16 when all said and done. 

Note to self, don’t ever eat Chinese food again from an unknown city - especially when you are traveling by airplane.)

That evening and night went really well.  Maddox fell in love with the bathtub there and discovered the drain doubles as a mirror.  She watched herself splash for 30 minutes.  I guess this was much more entertaining than a pool.

Sunday July 31st

I woke Maddox up at 8 and got her ready.  We went downstairs to breakfast.  I tell you, these   people treated the continental breakfast like it was an all you can eat crab leg buffet or something.  They were loading plates of eggs and sausage, standing in line for thirty minutes to use the waffle maker and so on.  All I have to say is wow...  

At 9:30, Sarah Rosenfeld Johnson walks into the lobby.  

Have you ever had one of those moments where you know this is going to change your life in some what but you just aren’t quite sure how?  That was that moment for me.  Butterflies and triumph all at once.  I felt like I needed a much better place than a hotel room to host the best of the best.  All I could offer was a bowl of Raisin Bran from the glorified continental breakfast!

The evaluation was incredible.  Basically Sarah worked with Maddox for about 75 minutes and then we discussed the results and she answered questions for the remainder of the time.  As I watched Sarah work and use her techniques, Maddox responded perfectly learning more in 75 minutes than I could have taught her all summer.  There were techniques to help her chew and swallow without choking, techniques to improve her articulation, teach her to suck and blow as well and use her tongue correctly.  

I had a whole list of questions and Sarah was able to accurately diagnose the reasons behind why Maddox is doing each of these things and has already provided us with an exercise regimen that will improve Maddox’s skills in each area. We are anticipating that by the fourth grade, Maddox will have perfected her articulation skills.

Articulation alone is huge for her.  Maddox is proving to be fairly functional.  You think about the times in your life when you have spoken to someone with disabilities who is very diffuclt to understand.  If you are anything like me, you have probably associated how well you understand that person to how intelligent/functional they are.  

Sounds terrible, it is terrible, but unfortunately it’s the nature of what humans do.  

So, our goal: by drilling these skills now, we hope to give Maddox the credibility she deserves.

After Sarah left we frantically packed, and took the shuttle to the airport. It was Maddox’s nap time but she wanted to stay up so the fight from Rhode Island to Philly was a little difficult too.

Upon arriving to Philly....Oh boy.  

Want to guess who had the first meltdown?  Maddox or me?

Yes, it was ME!

My meltdown goes a little like this:  I got our luggage and walked to the ground transportation area of my terminal.  I waited for the shuttle to the Sheraton Downtown but they were all going to the Airport Sheraton.  I asked for assistance, and the gal told me I was in the right spot.  I waited some more and went back to her.  She said, “Ooops. Keep walking outside until you reach the next terminal.”  

It is 94 degrees, we are dressed fairly warm because we always get cold on airplanes but off to the next terminal we walk.  When we got there, we found the same situation - all shuttles going to the airport Sheraton.  I called the shuttle service on my phone, he told me to walk to the next terminal and call him again.  OMG!

I took a deep breath and started off to the next terminal but began to lose it so I sat on a bench, redialed the service and this time he yelled at me, “Quit calling this number, go inside and call from the ground transportation desk!”  

Ahhhhh, I am about ready to pass out and he just royally made me mad.  I buried my head in my hands and thought, what did I get myself into?  I looked at Maddox and she must have had this vibe and knew I was struggling because she hasn’t made a peep.  Her face is breaking out and her head is sweating but she is patiently waiting.  I have to get her inside I thought, so I regain composure and set off for this phone I am supposed to find.  Kind of like finding a needle in a haystack in which I stink at doing so I found a nice cop to show me the way.

See how complicated this was?  I had to take a picture of the instructions becasuse I couldn’t remember them all.

I am finally at this phone for the shuttle service after a mile of walking in the heat with a diaper bag, purse, camera bag, stroller, car seat, and suitcase.  Get this, the system is so messed up.  You tell the gal your name, she tells you to dial #27 and gives you a number.  You dial #27, wait for a beep and then In a while that gal calls your number and directs you outside.  

When I get there, the shuttle driver starts yelling at me for having a stroller.  He throws all my stuff inside the van and makes us sit in the far back which meant Maddox’s car seat had to be lifted (WITH HER IN IT) sideways over two rows of seats.  I fasten her in and read the sign on our vehicle.  

Um, yeah, don’t feel too loved at the moment.  


Look at the patient look in Maddox’s eyes, this was interesting.  During this entire time, Maddox never made a peep.  She knew that I was under high stress and fed off my vibes I guess.  Her calmness was really amazing.  She would just look at me and smile even though she was miserable, hungry, thirsty, and hot.  What a baby.

I didn’t realize this shuttle was not going to be a direct service to the hotel.  Turns out he had 8 different locations to stop at so we were in this warm vehicle for way more time than we wanted to be.  The driving was crazy but my prayers were answered with a 5:00 o’clock traffic jam!!  We finally arrive to the hotel and Maddox’s diaper bag tips over when the guy pulls it out, and 8 ounces of milk spill all over the diapers, wipes, thermometer, tylenol, etc....  Milk is everywhere.

He tells me I owe him twenty dollars and I was thinking of how badly I didn’t want to give that up!  That was my worst ever spent twenty bucks!  He grumbled when I didn’t tip him.  If I had been brave I would have grumbled back, “Why would I tip a fellow who yells directions at me, gets mad that I brought a stroller, and dumped milk all over our stuff?”  Yes, he needs a lesson in how to be more sincere - before I consider throwing 5 hard earned dollars at him!

But YEAHHHHHH we are finally here at the hotel.  I get to my room, no fridge no crib so we had to get that all situated.  Why I was waiting and setting up for that I had emptied my diaper bag contents to wash and air the contents out from the spilled milk.  And yes, I almost cried over spilled milk!  


I am going to spare you the photo but I happened to look over at Maddox while I was cleaning.  She now proudly displays objects she can carry with her front two top and bottom teeth.  Only this time, it was the metal tip to the uhhhhhhh rectal thermometer.  Oh dear, gross!

We attempt to get situated and decided we need to eat and walk down to the lobby to get directions to a nearby restaurant.  The only thing I wanted to eat while I was here was a real Philly steak sandwich, awesome fries, and cheesecake!  I step outside to search for the perfect place only to see something I never anticipated.  RAIN.  All we have for transportation is a stroller and two feet.  Rain is not complimenting us.  


I look one block and see a pizza place next to a WAWA (which is a super duper awesome convenient store).  I get to the pizza place and realize there are ten steps to get it, what the heck?  The ramp is another block so off we run.  Finally, we arrive and the two nice guys working there must have known what kind of day it was because he hands me a menu then takes it back and says you know what, we will make you anything you want to eat, what are you hungry for?  These guys made a delicious italian meal catered just to us.

Only....... Maddox decided she was too tired to eat and threw a tantrum so we packed up everything in to-go box and left.  

Next door to the pizzeria was a WAWA.  I had to get some snacks. This WAWA folks was the coolest store ever.  It was like a continental breakfast, lunch, and dinner store all combined. We got carrots and dip, grapes already washed, hard boiled eggs, cereal, muffins, cheese sticks, you name it, we loaded our fridge.  

A side note, maybe you can explain, but I have never understood why the hotels that charge 160 dollars a night have a restaurant you have to pay to eat in but the hotels that charge 70 dollars a night have the best free breakfast ever???

Anyhow, we had enough food for the next two days from the WAWA not to have to leave our room.  Good thing because it rained and rained at each meal time.  I never did get that dreamy Philly meal I wanted!  Scott said he would make steak sandwiches for me when I got home. :o)

Monday 1, 2011


Maddox slept until 9, yea, and then we headed to the outdoor pool for a few hours where we both lounged in floaties.  After the pool we went back to the room, had a few WAWA snacks and took a power nap to build up energy for the PLEASE TOUCH CHILDREN’S MUSEUM.

We hailed a cab, that was so much fun, for real I mean it.  There is no other time in your life that you raise your hand and immediately someone responds. 

The cab ride was much more delightful than the shuttle other than our close encounter with the mail truck and the lack of air conditioning.  The fan was not not cutting it.  

We were a bit over heated but we got there and had to climb our way to the entrance. 

I walked in to pay and I must have looked terrible because the gal asked if I was ok and let me in free!

I was not sure if Maddox was going to have any fun here.  I thought maybe she would just watch the kids while I played but it turns out she had a blast.

***Video Here***

We called it a day at the “germ infested but totally worth it” museum, got back to the hotel safely and Maddox took a soapy fun bath.

Tuesday 2, 2011

Today is the day we had been waiting for.  I woke up early and got everything ready for all the doctors and therapists.  I had foot braces, genetic reports, speech evaluations, developmental profiles all ready to hand to the right people for their opinions.  I had over 40 questions for the professionals.  

I woke Maddox and prettied her up, this was going to be a day of great therapists, great doctors, high end research, etc...

OR SO I THOUGHT.

I walked to the hospital and we found our way to the Trisomy 21 clinic.  They got my right in at 8 and I was there until 12:15.  Four hours of testing, questions, therapy, observations with the doctor, speech therapist, OT, and PT.  The longer I was there, the less impressed I was.

Every single disciplines did a STANDARDIZED TEST.  

The Doctor did the Bailey to look at cognitive function, the Speech Therapist did the Preschool Language Scale, the OT and PT did portions of the peabody.....(All assessments that have already been done on Maddox.)

Ahhhhh....  Grrrrrrr......

A standardized test is an assessment administered exactly the same each time to get consistent results.  It is designed so strictly that anyone with training should be able to give it.  

You know what this means?  

I traveled halfway across the US to get exactly the same testing that my team in Michigan has already done!!  

I didn’t go sour yet, I gave them a chance.  I started asking several research based and down syndrome based questions hoping to get some answers specific to down syndrome development. I wanted to know where the industry was in the process of studying growth hormones, what they thought of Chemical Replacement Therapy and if the research supported this, I wanted to know what the 13th band had to do with the triplication of chromosome 21.  I had some serious questions that I wanted state of the art input on.

Nope, nada, they referred me to my local doctor.  What the heck?  

I don’t want to discourage their program for others but for me personally, I didn’t learn anything productive and did learn that I have an amazing team waiting at home.  A friend on my facebook page said, “The home team is the best team” and I couldn’t agree more.  

The reports that were given to me were generic and based on my report.  This was not the resource we needed but it may be for someone else.  I think I would have learned more during the four hours sitting with the other moms in the waiting room.  

I was so discouraged whenI left that we started walking and kept walking, no where in particular.  After a mile or so we decided we were starving.  

I have a little trick I use more often than I like to admit - but I use it when ever I am not sure where I am going.  It has yet to fail me.  You see it started when I would drive from Nebraska to Michigan and I find myself a little lost in Chicago.  My bold move was to find and follow a car with Michigan license plates and pray like heck that is where they are going.  

Today, as I couldn’t think anymore, my mind was done, we were hot and hungry I decided to try my plan out.  I found two businessmen that looked like they were on their way to lunch and followed them.  

I’M TELLIN YA, WORKS EVERYTIME...BOOYA

We ended up at an express food court with a Quizno’s, Taco Bell, Pizza place, etc...  all confined in one air conditioned building.  We ate, found our way back to the hotel, packed quickly, hailed another cab (so cool), and set off to the airport with three hours to burn there.  While exploring I came across an.......

Dream come true.  My plan was to get Maddox to sleep and sneak in a massage and guess what folks, total success!  After the massage we made our way to the gate where Maddox discovered she loved cruising along all the airport seats.  She would ask everyone to pick her Bup (up), and wanted to empty all their bags.  

We flew to Detroit and had an hour to wait there.  Lets just say that an hour with a child is a much faster ticking hour than when you are traveling alone.  By the time I got her loaded in the stroller and found our gate, we had 40 minutes left.  

I had to change a poopy diaper and find a restaurant that would sell us two glasses of milk and before I knew it, we had 15 minutes left.  I bought Maddox some dinner and fed her as quickly as I could, leaving me about 5 minutes and then I heard my name on the loud speaker.  

Oh geesh, now what?

Yes everyone, I lost my photo ID.  What else huh?  

Thank goodness for the nice gentleman who would much rather me have my ID than steal it, we were on our way to board right as scheduled.

The story is not over yet by far.  The plane we get on is kind of hot.  Turns out it has not run in two weeks and the air conditioning is broken.  It had to have been 90 degrees in the tiny puddle jumper of a plane and I had a sweaty tired baby trying to nap on me.  After 40 minutes I just had to ding that stewardess bell and ask if there was a cooler place on the aircraft because by this time Maddox didn’t have any clothes on and if we were to go five more minutes, I wasn’t going to have any on either!  We moved to the back of the plane where there was a fan blowing hot air.  We were there for 20 more minutes and the last straw was when they had to shut all lights and air off for the final fixings.  

It was like a scene from Final Destination, where you had premonition the outcome was going to be bad.  The plane was pitch black, the stewardess had a light shining on her, it was raining out, and we were all sweating to death.  

I contemplated getting off the plane but darn it we were 45 minutes from home....and I only had three diapers left.

I stuck it out, the plane got air conditioning, and we were on our way.  

At 1:00 AM I pulled in our driveway and was greeted by the best husband of all who waited up for us.


Home sweet home, another adventure in the books.



If you want more details on how any of the appointments went, please contact me.

My lil Strawberry Shortcake!

Kim and Addison asked if Maddox and I wanted to go strawberry pickin.  Like usual, I came up with every excuse in the book why we shouldn’t go.  There is no way we can get there before noon, it’s nap time, I think it’s supposed to rain tomorrow, and so on.  This was one of those things that I knew I would have a blast when I got there but getting there these days is the hard part.  Kim who knows me well just waited patiently for my unconscious split personalities to make up their minds.  

Yes, I will do it.  Let’s meet at 10:30, I CAN do it, don’t let me back out - is what I tell her.  

And good golly, look what fun we would have missed if I had backed out (Thank goodness for patient friends). 

Maddox decided to make her own fresh jam right on the spot.  What a mess but lovely mess.

Thank goodness for summertime!

Maddox’s favorite animal at the zoo was the giraffes.  Here’s our attempt at a family photo on this hot sweaty day at the zoo.

We went downstate to spend a weekend with cousins (some that are visibly here to play with us and some that are about to arrive).  First we hit up a baby shower for Aunt Melissa, then to Birch Run to shop, spent a cozy night in the hotel (I love hotels), and finally it was off to the zoo with Uncle Bob, Aunt Erika, Anna and Emma.  Here are the highlights from the weekend. 

I have some more photos to put here that are in my hotmail account which has been hacked and is being repaired so please check back!  Scroll down a little farther and you will see the zoo photos.

This one is a mama kangaroo with baby in pouch, you can see it’s hand flopped out.

Jamie and Maddox had to crawl though a two foot, hot, stinky, dirty suffocating tunnel just to stick our heads out the mole hole!

By far, Maddox’s favorite animal at the zoo was the giraffe.  And yes, we forked over the 20 bucks for the rip off replica.

This picture makes me want to take a Caribbean Vacation!  

Happy summer ya’ll, it’s finally here!