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.