What I Love About Being a DS Mom #31 - The Final Post, Part 2

Goodbye October...

Today, Down Syndrome Awareness Month offically comes to a close.  I have a feeling that the Down Syndrome blogging world will be very quiet for the rest of the week!  Honestly though, I have thoroughly enjoyed sharing my perspectives on this world we have entered into, and have learned about some incredible new people in the process. 

While the official 31 days are over, the work is not done, however.  Individuals with Down Syndrome will continue to live their lives the remaining 334 days of the year, and the need for awareness and acceptance will continue.  If you take away anything from reading these posts this month, it's that people with Down Syndrome are just that...people.  They have interests, personalities, and emotions like the rest of the world.  These people are not "forever children", and do understand injustice and ignorance when they are faced with it.  The next time you call a person a "retard", or refer to a situation as "retarded", stop and think about the impact your words have.  They are not just words.  To millions of people all over the world, these words stab.  They degrade.  They push people down who fight so hard...too hard...to rise up in our society.  And if for nothing else, think of Ty.  Think of my beautiful little boy who is so full of life and energy, and has his entire future in front of him.  Do you really want to knock him down before he's even had a chance to get up?

With that, I'll leave you with my final "official" post for this October...a letter to the most amazing person I know.

Dear Ty,

Thank you.  Thank you for coming into my world and choosing me to be your Mommy.  Before you came along, I had no idea that I wanted to raise a child with Down Syndrome...now I can't imagine it any other way.  You have taught me to be strong, courageous, and tolerant.  You have shown me that everyone has an equal place in this world, worthy of respect, compassion, and understanding.  But most of all, you have taught me to be a Mommy, and have made the journey so far a lot of fun.

As you grow up, please never lose touch with the qualities that make you who you are.  Your stubborn nature will ensure that you are not pushed around or forced into anything that you are not comfortable doing.  Your adventurous spirit will allow you to try new things, and find talents in yourself that you didn't know were there.  Your kind heart and contagious smile will secure you true friends for life.  You are a unique person, Ty, and I hope you grow to be as proud of yourself as I am.

One of the greatest lessons that you are going to learn is that life isn't always easy...for anyone.  No matter how many chromosomes a person has, or what strengths or challenges they have, life is going to throw curve balls; it's just part of growing up.  Sometimes, people might not be very nice.  You will have to learn to stand up for yourself, keep your feet firm on the ground, and stay true to the person that you are.  They are tough lessons for any kid to learn, but they make you that much stronger in the end.  Whatever twists and turns your future takes, just remember that your Mom and Dad will always be right behind you, cheering you on every step of the way.  

Whatever your dreams are, whatever you imagine for your future, pursue them.  Don't let outdated expectations guide the course your life takes.  All of the great figures in history had to go against the grain to reach their full potentials.  Granted, I'm not expecting you to change the world or gain fame and fortune (unless you want to, of course!), but I hope that you find happiness and success doing whatever it is that you choose.

So, thank you, Ty.  Thank you for being in my life, for making me beyond happy every day, and for taking me along on this incredible adventure of yours.  I will love you always, and will be behind you every step of the way.

Love,
Mom  

What I Love About Being a DS Mom #30 - The Final Post, Part 1

A Letter to a New Mom

Dear Kerry,

Pretty soon you will be meeting someone who is going to change your world.  He is going to come with a few extra surprises, but I promise, they are good ones.  At first, you might wonder if you even have the strength or that "extra something" that it takes to be the mom that he needs.  You might be disappointed that you won't be getting the "normal" parenting experience that you were so looking forward to.  You might even fear that he will not lead a normal life, and might miss out on things like playdates, birthday parties, and extracurricular activities.  It's okay...feel scared, wonder about the future, be upset if you need to. 

But, I am promising you now, that you can do it.  You are exactly the person that this boy needs to raise him, because you are his mom!  He is going to stare at you with such love, that you're going to wonder how you ever lived without him.  You are going to toughen up a bit, and are going to find a little fight in you that you never knew existed.  You are finally the mom that you had always dreamed of being.

And for that "normal" parenting experience?  Get ready for poop explosions, 12:00am, 3:00am, and 6:00am feedings, and days on end without showers.  Everything that you have prepared for, everything that you pictured yourself doing as a new parent, everything you were looking forward to doing for the first time...you will do them.  You will learn through trial and error, and you will find "tricks" that work for you.  Hours will be spent on the phone with your friends who are also new moms, trying to figure out how to get your babies to sleep just a little bit longer.  You might even start to wish that it wasn't such a "normal" parenting experience, because it sure is tiring!    

Please, please, don't be afraid of your son not living a normal life, either.  The direction his life takes is in your hands.  When you are ready, join some playgroups, host some playdates.  You will meet some amazing mothers, and your son will meet some of his very best friends.  They will play trucks together on the floor, they will babble in their strange "baby talk", and they will hug, hit, and pull each other's hair.  Your boy is going to get invited to birthday parties, and will have friends at his.  And believe it or not, he is going to inherit his Daddy's athletic ability.  Hockey will be his sport of choice, so make sure to clear away any breakables that are at stick level...he is going to have quite a swing.

I know, it might not always be easy for you raising a child who has some extra challenges.  You are going to have to navigate the world of medical insurance, and balance doctor's and therapy appointments with your already busy schedule.  At some points, you are going to need to advocate for your son, and will come face to face with some ignorant people.  Some days will just be exhausting, and you will be desperate for some weeks where you don't do anything.  So you know what?  Don't!  Cancel appointments, take time off from work, let the house get messy, and get take-out for dinner...once in a while of course!  These mini-breaks will be well worth it in the end. 

So, Momma, congratulations.  You are about to start a wonderfully exciting, challenging, rewarding life, and you are not going to have one single regret about it.  That son of yours is going to teach you more than you ever thought possible, and you are going to wonder how in the world you ever got so lucky to have him in your life.  Enjoy the ride!

Love,

An older, happier, more experienced, enlightened, and better looking :-) version of yourself     

What I Love About Being a DS Mom #29

It's Always an Adventure

The name of this blog, "The Adventures of Ty the Toddler", wasn't chosen for its cuteness factor, or to catch attention.  It was chosen, because it 100% exemplifies life with Ty. 

When I walk into his room each morning, I never quite know the course our day will take.  (If I'm greeted by a cranky teething toddler, I can make an educated guess, however!)  But no two days are ever the same.  Yes, we may get stuck in a rut of reading the same books, and playing with the same toys each week, but it's how Ty approaches his days that keeps life interesting.  The monotonous task of folding the laundry can turn into a thirty minute giggle-fest, as he buries himself in the piles.  A trip down the hallway for a diaper change nearly always ends in an unofficial game of hide-and-seek as Ty escapes into a room and shuts the door behind him.  The way he explores, it's almost as if Ty is on this continuous adventure, that we are not entirely aware of.

This is one quality about Ty that I hope he carries with him as he grows older.  Children often lose their adventurous spirits as they become aware of their peers, and strive to "fit in".  I'd be lying if I said I don't care whether Ty "fits in" or not as he grows up, because I do; I pray he finds his niche somewhere, with someone, where he feels accepted.  But I want him to take risks, too.  I want him to explore what his world has to offer, and break the rules once in a while.  That's what boys do, right?! 

So here's to Ty, my little adventurer, who always keeps me on my toes!

What I Love About Being a DS Mom #28

A peek into Ty's favorite time of day, with the person he looks up to the most! :)

Last Kiss

It's time to get ready for bed,
Put on my j's and rest my head.

Pick out my last book of the night,
Sit quietly with Daddy, not giving a fight.

Same routine I do repeat,
It won't be long before I'm fast asleep.

I dream all night long of the things I love,
Warm in my sleep sack, like a hand in a glove.

Thinking about all of my adventures today,
The last kiss is like a period on the day.

One on the cheek, one on the head,
My eyelids closing, feeling like lead.

I'm dreaming now, happy as can be,
Who is the last person that kisses me?

Sorry, Mom, don't get mad,
But that lucky person is Dad!

Goodnight!

- Ty

What I Love About Being a DS Mom #27

Give Our Kids a Chance

Today is the last common topic of the month - "What I Wish People Would Understand About Down Syndrome".  The goal is to express the one most important thing that I want people understand about Down Syndrome. 

It's nearly impossible for me to pinpoint one idea that I want people to take away from reading my blog this month.  Everything I have written has been chosen with the intention of giving the outside world a glimpse into life with Down syndrome.  If I have done my job, people will have a greater understanding of the joys, challenges, and normalcy that accompanies the parenting of a child with Down Syndrome, and will think, "hey, it's not so bad!"

If I can leave you with one resounding message though, it's to give Down Syndrome a chance.  Somewhere, right now, a mother is learning that her child has Down Syndrome, and is about to embark on a journey that she is not prepared for.  Instead of pitying that mother for what she has lost, rejoice in the arrival of a new human life.  Rather than thinking or saying that you are sorry for her, dare to imagine everything that she is about to gain.  Down Syndrome is not a death sentence; it's not even a tragedy.  Down Syndrome is a beautiful variation of human nature, and is entirely deserving of celebration.   

Undoubtedly, you will cross paths with an individual who has Down Syndrome at some point in your near future.  Rather than allowing ingrained stereotypes to cloud your perception of that person, step outside your comfort zone and attempt to see the person beyond the diagnosis.  Take notice of the qualities that define his/her personality.  Admire the unique strengths that he/she possesses, and allow that person to show you who he/she really is.  And maybe, just maybe, you will be surprised at the knowledge you gain. 

Give our children a chance.  Allow this generation of individuals with Down Syndrome to write their own futures.  Take down the barriers of perception and expectation, and let them show us what they are truly capable of.  We will never know, until they try.   

What I Love About Being a DS Mom #26

Ty's Roots

Ty didn't just come out of nowhere, you know.  He had been part of our journey for 8 years before he finally came to be.  It's funny how things work out!

10 years ago this fall (yikes!!!), Eric and I met at Keene State College in our dorm, Owl's Nest 5.  He lived one floor below me, so our paths crossed (literally) many times a day.  One night in particular, Eric was coming home and was talking with a girl who clearly was interested in him.  Luckily for him, I was standing outside of the building and he desperately asked me to pretend to be his girlfriend to get him out of his current situation.  Of course I agreed, and it's all been uphill from there.


A Halloween picture from our younger, cuter days!



We officially started dating 2 years later (yes, Eric likes to take his time), after our sophomore year of college.  I sat through snow, wind, and rain to watch my hunk-of-a-boyfriend play lacrosse, a game which I still don't understand to this day, but what can I say, I loved him!

In July of 2006, we embarked on our first adventure and moved 600 miles away to Suffolk, Virginia...a place we literally chose off of a map.  Within a month of our move, we adopted our first baby, a 1 year old sheltie named Toby.  He had been abused in a puppy mill, and was the most timid, frightened dog you can ever imagine.  It took months of therapy that we learned in books and online, to get him to leave the corner of the living room to eat or go outside.  We carried him down three flights of stairs for months to get outside, and taught him how to trust enough to walk on a leash.  It took 8 weeks of puppy training classes to get him to walk out from under the chair in class.  We always said that Toby would prepare us if we ever had a child with special needs...little did we know that he served that exact purpose.

Four months later, we adopted our second baby, Nicholas.  He was also a rescue, and was Toby's polar opposite.  Nick taught Toby to play, take risks, and even get into a little bit of trouble.  He is the one that kept us on our toes, and made us pull out our hair on occasion.  With our two boys, our little family had been established. 

On August 11, 2007, we bought our first house.  In the midst of re-doing the house that first day, covered in paint chips and sweat, Eric proposed to me.  Nearly a year later, on July 4, 2008, we finally got married...7 years after we first met, and 5 years after we started dating.  It was such a wonderful day, and was the beginning of a long life together. 

The day we got engaged...

And our wedding day...so happy! :)

We always knew that we wanted to have kids.  Eric had big dreams of teaching them to play his favorite sports, and I just wanted to be a mom, plain and simple!  So, just 5 days after we celebrated our first wedding anniversary, I found out that I was pregnant with Ty.  I can't even explain how excited we were.  After discussing that we would wait until I had completed my first trimester (until we were out of the "risky" period...not for genetic testing purposes) to share the news with our families and friends, we ended up spilling the beans less than 24 hours later.  An event as exciting as Ty just couldn't wait!

We all know how the pregnancy went, and the events that Eric and I had to endure together.  Through it all, he was the only person who I could talk honestly to about what was going on, because he was the only one in the world who "got it".  You never expect anything to go "wrong" with your pregnancy before it begins, so when you are carrying who could potentially be very sick, it forces you to dive into the world of parenting a whole lot sooner. Nothing solidifies a marriage like fearing for the life of your child.

As you know, Ty was born strong, healthy, and bedazzled with an extra chromosome on March 10, 2010.  Eric was the perfect partner during labor.  He was the one who forced me to go to the hospital the second time, he didn't bother me while I was in pain, and he encouraged me every step of the way.  That was one proud Daddy calling and texting everyone we knew to spread the news of Ty's arrival!  I can never be thankful enough that I had Eric there with me to hear the diagnosis, discuss the medical information that was thrown our way, and share the responsibility of parenting in general.



Finally home from the hospital...our perfect little family!

Shortly after Ty's birth, we made a spontaneous decision (that seems to be our style) to put our house up for rent and move back to New England to be near our families.  Though transferring Ty's medical care, finding jobs, and hunting for a house on such short notice was incredibly stressful on us, it was the best decision we could have made for our family.  So, on July 17, 2010, we packed up our new family of 5 (including Toby and Nick, of course), and headed north to start our new life.

Everyone's really happy to have Ty around!

...and we've lived happily ever after!  Over a year later, we are settled in a home that we love, and Ty is thriving.  It was a long, fun 10 years leading up to this point in our lives, and I can only imagine the adventures that we will embark on in the next 10.      

What I Love About Being a DS Mom #25

Smiles and Giggles

Man do I love this kid's smile.  It's big, it's warm, it's genuine, and it's innocent.  When he flashes you his mouth full of pearly whites, it's impossible not to smile yourself.  It's contagious.  However, there is one thing better than his smile...his laugh.  Ty's laugh comes from deep inside his belly, and just takes on a life of its own.  Just one little tickle can send him into hysterics and leave him trying to catch his breath.  Sometimes, I'm not even sure he knows why he's laughing, and I know for a fact he occasionally laughs simply for the sake of laughing.  It's a sound that just makes your day.

Enough said. :-) 

What I Love About Being a DS Mom #24

Not Always Sunshine, Lollipops, and Rainbows

Despite the month-long string of perky blog posts and perspectives that tend to look on the bright side, having a child with Down Syndrome can be downright tough sometimes.  I mean, every child, no matter how many chromosomes, challenges a parent in ways that cannot be prepared for.  But having a child with special needs comes with obstacles that force you to go the extra mile, grow a thicker skin, and fight a little harder.

Finally coming home for the first time!

When Ty was born, despite our preparation for possible medical complications at birth, nothing could have prepared me to leave my baby in the Special Care Nursery for the first 6 days of his life.  Nothing quite tears at your heart like finally meeting the boy you had waited 9 long months to hold, and then leaving him alone in a hospital crib, while you go home to an empty nursery.  I missed his first bath, and first dirty diaper.  I wasn't the one to hold him for every feeding, or to comfort him when he had blood drawn.  Nearly 2 years later, it still breaks my heart that we weren't with him every second of his first week of life. 


The first few months of his life were filled with one doctor's appointment after another.  When you have a child with Down Syndrome, the hospital sends you home with a list of follow-up appointments to fill your calendar for the first month.  It's an endless parade of paperwork, exams, and medical testing.  You quickly develop a tough exterior as you listen to one doctor after another list off what is "wrong" with your child, and what may possibly go "wrong" in the future.  Ty was monitored closely by cardiology, neurology, and otolaryngology for his first seven months, until one day I looked at my calendar and realized that it was no longer filled with trips to the hospital.  He had finally graduated to the yearly check-up routine, and we could finally breathe.

For us personally though, the most difficult aspect of having a child with Down Syndrome has been to watch him struggle with respiratory congestion.  Being in daycare as an infant, Ty caught every cold germ that circulated the house.  At 2 1/2 months old, he caught his first cold, which very quickly settled in his chest.  Nervous at the sound of his breathing, I took him to his pediatrician, who administered several nebulizer treatments to no avail.  I walked around that small exam room for over two hours holding Ty's naked little body, listening to him gasp for breath.  In Ty's best interest, his doctor called an ambulance to bring him to the local children's hospital for a 48 hour stay.  I'll never forget watching my little peanut strapped into his carseat being rolled out of the doctor's office on a stretcher, with a smile on his face.  Our ambulance ride was uneventful, but the emergency room was another story.  As a routine procedure for patients being admitted to the hospital, two men came in to insert an IV into Ty's tiny, pudgy hand.  It was the first time I had ever seen my baby in pain, as it took the men four attempts to successfully get it in.  Ty fell asleep immediately afterward, with terribly bruised hands as remnants of his ordeal.  The remainder of our hospital stay was as diffcult as that first afternoon, and I quickly learned to stand up to nurses and doctors in the best interest of my son.  It was a tough lesson to learn that medical professionals do not always act as they should, and do not always know what is best for your child.  Though we have had other hospital visits since, this one was by far the roughest, and quickly inducted me into the club of being a special needs mom. 

I have watched my son have blood drawn numerous times, and have held his hand as he was put under general anesthesia.  My binder containing all of his medical records is overflowing, and I can recite to you the content of every one of the documents inside. 

Physical and speech therapy appointments are sprinkled throughout a typical week, and follow-up exercises are woven in to many of our daily activities.  I can tell you the typical age for any milestone to be reached, and am always aware of what the next goal will be.  Sometimes I wonder how my brain continues to function at all, with the roladex of knowledge that I am constantly adding to.

Even a play session is a chance to work on that core strength!

In spite of it all, I always come back to the same realization that the good far outweighs the bad.  I have written 23 days worth of things that I love about being a mom to a boy with Down Syndrome, but am already quickly running out of things that are tough.  For every challenge we overcome, we are that much stronger in the end, and I truly am grateful for that.  So no, being a parent of a child with special needs is not always easy, but then again, what parenting journey is easy???  I wouldn't trade this experience for anything.

What I Love About Being a DS Mom #23

Attitude

One of the largest misconceptions about people with Down Syndrome is that they are "happy all the time".  I have yet to meet a child with DS who hasn't had a tantrum, refused to do something, or waved his/her stubborn flag.  Ty...my ever so sweet Ty...has done all of the above, and then some.  He is a far cry from the stereotype of the boy with Down Syndrome who is content with everything, smiles all the time, and is friendly toward everyone he meets.  Ty has attitude.  

I guess it all started when he was just three days old, and was being force-fed formula in the Special Care Nursery.   He was being held for "monitoring" due to the suspicion of Down Syndrome, while they ran various tests and scanned every inch of his body.  He looked like a linebacker next to the 2 pound preemies who surrounded him, yet his fluid intake was documented carefully for 30 minutes every 3 hours.  I remember sitting there listening to a doctor, nurse, and OT discuss why they were even doing this for him, since it was not the standard protocol for typical babies who were born at the hospital (which at this point, they had determined Ty was).  After one particularly frustrating feeding when Ty just wasn't hungry enough for the amount they wanted him to take, the nurse inserted a NG tube to finish his feeding.  The morning shift nurse the next day was livid and assured me that Ty did not need it.  All the while, Ty yanked, pulled, and successfully removed the tube more than once.  He was less than 72 hours old, and was already letting the world know what he wanted...and didn't want.  (It was permanently removed that evening by that same sympathetic nurse). 

And Ty hasn't looked back since.  He stands firm in his likes and dislikes, and will not give in when he does not want something.  Ty is not one to watch the world go by...he wants to control it.  That's just who he is, and it certainly does not satisfy the expectation that the world places on him as a boy with Down Syndrome.

These attitudes are worn proudly on Ty's face, and are apparent all day, every day.  I don't know where he has learned his ways (surely I can't be to blame?!?), but he is a master.  

His "don't you even think about it" face.  If Ty sees me coming with medicine, or I try to sneak a vegetable in his mouth with his meal, I get "the look".  He turns his head downward real slowly, looks up at me with his disappointed eyes, and all but says, "you better think twice before you do that."  Strangely, I used that same look often as a teacher...and it worked.  It's no wonder he's so good!



"What are you gonna do about it, Mom???"



His "I'm doing this for you, Mom" face.  This boy has become so accustomed to having a camera in his face, he automatically slaps on this smile as soon as he sees it.  He knows exactly what I'm trying to do, and exactly what he's supposed to do.  It's his way of saying, "This is so lame."  I expect many more faces like this, especially as adolescence approaches.

"Can't you see I'm trying to stand here???"

His "I am so darn cute, and I know it" face.  Whoever put it in his head that he is incredibly cute, clearly didn't anticipate the effect it would have on my son's ego.  He knows exactly how to smile, bat his eyes (yes, he bats his eyes), and snuggle in closely just the right way, so you have no choice but to give him anything and everything he wants.  It's a little manipulative, but hey, it works!

"You want to pinch my cheeks, don't you?"

And my favorite, his "I seriously just love you so much" face.  Nothing is better than having your son stare up at you with total and complete adoration.  It's not an intentional face, but it's one that I catch once in a while, and it just melts my heart every time.  Little boys really do love their Mommas!          

Photo by Courtney MacLaren Photography

Attitude is what gives Ty a little spark. It's what helps define his personality, and what distinguishes him from the stereotype that society has created. Ty is as much an individual as you and I. He is Ty Eric Momnie, a little boy with a lot to offer. Watch out, world!

What I Love About Being a DS Mom #22

Good Things Come in Small Packages

Ty is completely average-sized...for a 12 month old.  At 19 months, he weighs 22 pounds - just 3 pounds more than he did at 9 months, and is 30 inches long.  Recently, strangers have guessed Ty's age to be 7 months, not quite a year, and just a year old.  It must really baffle people to see this supposed infant using words, eating graham cracker sandwiches, and drinking from a straw!  Being on the smaller side of average myself, I'm used to the looks people give as they wonder if I am a teen mom, and handing over my license every time I am in the vicinity of alcohol (I'm 28, for the record).  So it doesn't bother me when people underestimate his age.  In fact, I have to admit I get a little pleasure out of seeing the looks on their faces when I reveal his true age.  Everyone likes to have a little shock and awe factor, right?

  1 month                                     9 months                               19 months

 

Being a peanut has its advantages, though.  Ty can fit himself into any space imaginable, so his opportunities for exploration are endless.  It's no surprise to find him inside a box or wedged behind a chair, where he is undoubtedly planning his next move.  As he grows older, his imagination is going to soar as he navigates the untouched spaces in our house.  

The real advantages, however, are all mine.  What parent of a toddler has the luxury of wrapping their arms around their baby as he curls up in a ball on their lap?  Ty still fits perfectly in the nook of my arm, where I can stare at his beautiful face as he drifts off to asleep.  When he wakes up a little early, he lays his head on my shoulder as we rock in the chair, until he is ready to take off and play again.  In these ways, I am able to hold time still and keep my baby a baby for just a little bit longer.  Time has a funny way of whisking a person through childhood, until it's only a fond memory of the past.  I, however, have these extra few months to relish in my son's pint-sized innocence, before he grows into a boy and then a young man, in the blink of an eye.

I am in no rush for my baby to grow up.  As long as I can hold him tightly where I know he is safe, I will.  There's no doubt about it, the best things often come in small packages.

What I Love About Being a DS Mom #21

A Day In the Life of Ty

Staying home with Ty has been the best decision I have made for our family.  We may not go out for as many dinners any more, and I get really sick of singing "Old MacDonald" and reading Brown Bear, Brown Bear 50 times a day, but it's SO worth it.  Our days follow a typical routine, and Ty jumps from one activity to another all day long.  All-in-all, he is your run of the mill toddler, and I enjoy every second of it.  

 Good Morning, Sunshine!



Goodnight, Ty!

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Today also happens to be the 21st of October; to honor that 21st chromosome that we all know and love, take some time to visit the blogs of other amazing families in the Down Syndrome community.  Be warned though, it can be addicting! :)