5 Years & Smiles That Never End

Today is National Down Syndrome Day.  Days like this are great times to reflect, because, well because, we just don’t do it enough!

6 Years Ago Around Now

I still remember getting the phone call from the doctors office.  It was a Friday night and Lisa was out shopping.  I was sitting in the living room on the floor ( I still know the exact spot) playing with my daughter, Lauren.

It went something like this:

• Rich – “hello”
• Caller – “hello, can I speak with Lisa”
• Rich – “she’s not here right now.  Can I take a message?”
• Caller – “can you please tell her the doctor’s office called and her PROCEDURE is set for Tuesday”
• Rich – “Procedure?  What Procedure?”
• Caller – “She’ll KNOW what it is in reference to.  Any questions, ask her to please call us”

At that moment, time stood still.  It was kind of surreal. I was completely caught off guard (if you know me, you know that I’m rarely speechless or caught off guard)

Lisa came home and I told her that the doctor’s office had called.  She asked in regards to what?

I told her, “the doctor said YOUR PROCEDURE is all set for Tuesday”

I have to be honest, I don’t really remember what happened after that. It was kind of a blur.  But I think we both realized that we were in for a LONG next 4 or 5 months.

Time Stood Still

The doctor had ASSUMED that we were going to terminate the pregnancy.  Apparently 90% of the people who find out that they are having a Down Syndrome child terminate the pregnancy.  I have to be honest again, until that phone call, THAT, had NEVER crossed my mind.  That just wasn’t an option.

So we moved on and I can tell you that the next 4 or 5 months, were the most MISERABLE months of our lives!

We met some very nice people along the way, but by and large, we met a medical community that was inconsiderate, uncaring, unattached, judgmental, and in some cases just down right rude!  One doctor in particular, talked about MY SOON TO BE SON, as if he was an object.  If he said the word RETARDED and NORMAL one more time, I wasn’t going to be held responsible for what would happen next.

July 27, 2005

Mattie was born on July 27, 2005.  And it didn’t get easier.

He was born with 2 holes in his heart and baby leukemia.  Doctors were talking about Open Heart surgery in November and there wasn’t a clear understanding about why the platelets in his blood were acting kind of crazy.

So there he stayed in the NICU in Morristown Memorial.  For almost 3 weeks, until one day, his blood count was NORMAL.  The doctor’s were kind of perplexed. They weren’t sure what had happened, but the doctor walked in one day and told us that his blood count was NORMAL.

Imagine that?  A doctor using the word NORMAL about my son!  The doctor told us that people with Down Syndrome are very special in a lot of ways.  Sometimes things happen that the medical community just can’t explain.  And this was one of those times.

There Is Absolutely NOTHING NORMAL or TYPICAL About Mattie

We took Mattie home and our life changed dramatically!

The first years of his life included therapy and blood work every month.  My son would get stuck with a needle every month to check his blood.  I couldn’t do it.  It was to hard for me to watch.  I give Lisa a lot of credit.  She’s a great mom with a strong heart and stomach.

It’s 5 1/2 years since we were BLESSED with Mattie.

• Is it easy?  No, but having any child is not easy
• Do you need patience?  Mattie has his own clock.  There is time and then there is MATTIE TIME (the kid will never have high blood pressure, thank goodness)
• Have we been able to teach him?  Well, actually, I think that we have learned more from him, than he’ll ever learn from us.
• Does he have challenges? Yes, but none that we and he can’t handle.
• Is having a special needs child hard on a family?  I’ll shoot that right back to you and ask if having ANY child is hard on a family?  It’s all about patience and perseverance.  It’s a journey.  Enjoy each day!

I would like to thank the doctor in Morristown for exposing me to the word NORMAL.

The doctor was absolutely correct.  Mattie is not normal, nor is he typical.

You see, Mattie is 5 years old and is responsible for NO LESS than 1 million smiles in his short life.

• Mattie wakes up EVERY DAY with a smile.  Comes down to the top of the stairs (my office is in the basement), squats down and hollers “DADDY”.  I walk up the stairs each time and Mattie turns to Lisa, smiles, and says “DAD HOME!”
• He then makes us hug each other and pick up the cat and hug the cat too!  He then wants a kiss from each of us and then another hug (remember MATTIE TIME) It’s a long process, but boy is it worth it.
• Mattie gets on the bus, all by himself.  Has done it since he was 3.
• Mattie knows everyone at the public school he goes to.  He’s like the mayor.  He makes himself right at home in the Principals office. (smiles)
• Mattie knows all the ladies at our local Curves.  He goes in and starts to use the machines. (smiles)
• Mattie goes to the front of the line at Chester Bagel.  They all know him there (smiles)
• Mattie knows the guys at Chester Meat Market. He loves Lou and the guys love him (smiles)
• Mattie does therapy for his speech on a horse named Lucy on Friday nights.  He seems to have charmed a group of ladies who weren’t sure if he was quite ready for Lucy (imagine that!  More smiles)
• Mattie takes swimming lessons in an Assisted Living home.  His instructor LOVE him (smiles) and the people in the home SMILE REALLY BIG when they see him running down the hall (he’s not supposed to run naturally, don’t tell Lisa)

I could go on and on and on, but I think you get the picture.

Who’s Your Hero?

People go through their entire lifetime without heroes. I’m 48 years old and it took me 43 years to meet my hero.  Mattie is everything that I wish I could be.  He’s smart, friendly, very handsome, sharp as a tack, and most of all he NEVER, EVER judges people.  NEVER!  It’s a characteristic that I wish was contagious.

Mattie is not NORMAL and NOT TYPICAL.  But you know what?  Don’t you think the world would be a better place if there were more NOT NORMAL and NOT TYPICAL people in it?

Happy Down Syndrome Day 2011 Buddy!

Please help us support Down Syndrome Research on Improving The Cognition of People with Down Syndrome – www.researchds.org

 

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