Twas The Night Before Thanksgiving or The Night I Realized That I Am OLD

Twas the night Before Thanksgiving, when all through Detroit
The Barflies were buzzing, they were hopped up on joy!
Lady's outfits were perfect, well chosen with care.
The Men had all put way too much gel in their hair.

My husband and I, we had no plans to go out.
We were snuggled and cuddled, and frankly worn out.
Then we got the text that our friend Tina did send...
It peaked our interest, maybe we'd like a night with our friends!

You see, we stay home a lot, since having our sweet baby Ben
We like to watch movies, eat ice cream and veg...
But every once in a while, there's a twinge from times past
We remember how much fun we all used to have!

We liked to go out, to drink and get wild!
However, we obviously knew this would change with a child
But tonight, it was different, we longed for the chance
to go out and get crazy and relive our past!

We called up the sitter, low and behold she was free!
We announced to our friends, "Count us in on tonight's shenanery!"
Mark went to the store, to buy fuel for the night.
You see without chemical energy, sleep would certainly win the fight

I started to get ready, excited as can be!
I did my hair, did my make-up, I was looking quite sexy!
I had on high-heeled boots, a tight dress with leggings
I even wore my good panties, because "Hey, Mark might get lucky!"

This is when it started, when it began to go to shit
I was walking around and began thinking a bit
It's freezing out there, and we are headed downtown.
Now I KNOW that there's gonna be a lot of walking around!

I talked myself out of my boots, and grabbed a pair with no heels
Walking in stilettos all night?  No thanks, I know how that feels
Then I talked myself out of my tight little dress.
I mean, come on, I should be comfy, who do I need to impress?

I settled on a sweater and my Jim Morrison T-Shirt.
I mean, The Doors are still cool, right?  I won't look like a nerd.
I was now feeling comfy, and warm and just right.
I was now, as I found out later, dressed completely wrong for this night.

We headed out with three of our friends,
Still slightly excited for the bars up ahead
It was Mark and myself... Tina, Derek and Ken
With Ken rolling his scooter as his ankle was on the mend

We stopped at the first bar in Corktown, ready to have a great time!
Tina and Derek scoped it out, we didn't want to have to stand in a line.
Then went in and came out, the bar was too loud!
And seriously, how the hell can anyone put up with that crowd!

We went to the second, the third and the fourth!
All the bars were so packed, and so loud, and so ... inaccessible to somebody with  scooter for his broken ankle.  I mean, this was unacceptable.  The ADA needed to be informed.  You need to make your business accessible for those with..oh wait, my poem.  Sorry, I forgot....

Anyhow...

We all drove along, to bar after bar...
I gotta say I was getting real sick of the car.
We bitched and we moaned, Is it too much to ask...
To find a bar where we can talk, and drink beer, and relax

We finally ended up at a place not too bad.
The Firebird Tavern in Greektown, was where beers would be had
We all went in, and we were pleasantly surprised by the place
It was nice, warm and cozy, and you didn't feel a lack of space

This all lasted you see,  'til we headed upstairs...
It was there that I realized, I should have spent more time on my hair
The music was loud, OH SO LOUD, and it bumped!
It bumped and it boomed, and my head was going "thump, thump!"

The girls were all dressed with their midriffs all bare!
I hadn't seen this since the 90s, and I didn't care for it back there!
Within moments I had been stepped on, and spilled on, and worse!
Their was one girl that accidentally slapped me in the face with her purse!

The guys, oh the guys, they were all wasted of course.
Attempting to score with a girl was the nights obvious sport.
They attempted to dance, they attempted to flirt...
You could tell they were proud of those Ed Hardy T-Shirts!

We laughed and we giggled, as we drank the crappy beer.
Is it too much to ask for a nice craft on tap here?
We stared at the dance floor, the girls and the guys
And then there was something I started to realize...

This used to be me, this used to be fun!
I used to love Thanksgiving eve, and the crowds, and the bumps!
I used to dance all night long, I never minded a crowd.
I used to drink shitty beer, and wear my hair down

I don't envy these crowds, I had my time in the past
However, sometimes you need a reminder of that
I love my friends, and I love to go out
It's just a bit different now, I don't want to have to shout!

I like to sit and have a delicious craft beer,
I like to talk, and to giggle, and to reminisce about the year
I don't like to stand, I like to sit and be comfy
I don't mind going out... even if I look a bit frumpy

You see, on this very night, I realized that I am old.
I realized I am in my mid-30s, because time doesn't hold
I love spending time with my family, but when I do go out with my friends
I like to enjoy their company, not hear thumps in my head

I am comfortable with this realization I had,
as I sat in my home fast-food burger in hand.
I looked at my husband, and we laughed a great deal.
Thinking we are screwed if you're only as old as you feel.

To all of you twenty somethings, have fun while it last!
I do have something to tell you, something that will make you aghast!
There will come a day, when this is no longer fun.
I know it's hard to believe, but I promise this to all you someones

Even though that time is in the past, you're in for so much more!
There is a whole world outside of the bar for you to explore...
There's nothing wrong with it now, and enjoy all you want
but do not believe my life is something you don't want.

Your life gets so much fuller as you age and you grow,
You will learn that conversation and laughing are worth more than you know
You will enjoy all the things that seem right now very boring...
You will find that instead of the club, you'd much rather spend your time snoring!

However, I must say, I still had a good time.
We do love our friends, and didn't have to stand in any lines!
And we laughed oh so hard in the car this fine night
as we realized that we weren't up to the challenge of the pre-Thanksgiving plight

We sat there and stated what we wanted in a bar
Not too crowded, or loud, or a parking lot so big the car would be far
As we were saying these things, we laughed at ourselves
From now on our club clothes will stay stacked on our shelves!

I will remind myself of these words next time our interest is peaked,
I will re-read this poem, and then my peace I will keep.
For the rest of you next year, have fun with all your might!
Happy Thanksgiving to all, and to all a safe night!

WHAT!?!?  I can't hear you through this noise!!!

The Club

On  August 5th, 2013, I was inducted into a VERY exclusive club.  This club was very different than any club I ever thought I wanted to be a part of.  Hell, I never even knew this club existed before then!  What club am I talking about?   It's the club you get automatically inducted into when you are blessed with a child who has special needs.  It's an elite club of people who get the see the world a slight bit differently than the rest of the population.  I, and many others, call this club "The Lucky Few", and I couldn't agree more with this choice of name.

There's this moment that I am assuming every new parent has when they find out their child is going to be born with Down syndrome.  There's this moment where you feel like this imaginary link between you and all your friends and family that have had children before you gets ripped to immediate shreds.  Every single thing that you thought you would have in common with them in regards to being a parent melts away and you are left with this cavernous fear of the unknown.  You feel like nothing will ever be the same for you.  You feel ... different.  You feel ... isolated.  You feel ... flipping terrified!  Your entire imagined future has just taken a serious detour into the unknown.

For me, in this moment of feeling like I was literally drowning in my own anxiety, that's when I turned to the one place I knew I could get some answers.  That place, for better or for worse, was the internet.  You see, one of the biggest, and shallowest, feelings I was dealing with after finding out Ben had Down syndrome, was the feeling that no one would love my baby.  I knew I would love him, I already did love him, but I was terrified that no one else would.  I was afraid they would shy away from him, not want to hold him, not want kiss him, love him, cherish him the way everyone does with new babies.  I was terrified that everyone would think of him as ...  I'm embarrassed to even type this ... something to be pitied, something to be "sorry" for.  I mean, how come you never saw babies with Down syndrome?  I had NEVER seen a baby with Down syndrome as far as I knew.  I knew lots of adults, but no babies.  Why was that?  Where were they all at and why did they suddenly seem so hidden?  I needed to know.  I needed answers.

I opened up my browser, and I typed in "baby with Down syndrome" into Google.  The VERY first picture, as many of you know, was a picture of sweet Pip from www.happysoulproject.com.  Pip was sitting there in her diaper, on her stairs, with the biggest ear to ear grin I had ever seen.  I immediately started stalking the blog that this beautiful little light was shining from, and my heart melted.  PEOPLE LOVED HER.  EVERYONE LOVED HER.  This little beauty was loved by so many people because of who she is and what she happens to have takes nothing away from that.  If anything, it makes her a little extra special.  You can read more about that here or here.

Let's fast forward to many months later.  I've had Ben and all those silly, outrageous thoughts are gone.  I KNOW my friends and family love and accept him.  I KNOW how ridiculous it was to think they wouldn't.  However, there are still things that only those in "The Club" will understand.  When I found Pip, she saved me.  She LITERALLY saved me from heading down a deep path of negativity that I may not have come back from the same.  I am forever grateful for finding her, but I am even more grateful for finding her Mama, Tara.  Tara was the first member of "The Club" that I interacted with.  Reading Tara's blogs and through comments back and forth, then emails, then messages, I found a kindred spirit.  I found someone that didn't just have a child with Down syndrome, but also understood exactly how lucky she was to have been blessed with her.  I found someone that understood how hard it can be at times to hear time and again what your child will or will not do.  I found someone that understands exactly why you celebrate like it's 1999 every single mother scratching milestone that your child achieves.  I found someone else that, without even talking to, I know just understands my story.

Once I found Tara, it was like I was hooked!  I wanted more!  I wanted more friends, more people that get it!  I wanted to meet more people in this club I was just inducted into a short while ago!  And let me tell you...I wasn't disappointed.  I started The Down Syndrome Diary and now I have no less that 24 Moms and Dads that I am honored to call my friends and each and every one of them gets it.  I can reach out to any single one of them any time of the day and ask anything.  I can ask about skin problems, and eating troubles, and you name it... and they get it.  The get why my worries are different than most parents, they get the nuance of this particular issue, and they just get me.  I have parents with babies that I can bounce things back and forth with now, and I have parents of adults with Down syndrome that give me such hope and love for what my future entails.  "The Club" is something to be reckoned with my friends.

Unfortunately, most of these amazing people I met live nowhere near me and our clubhouses reside mainly on blogs, Facebook, and Instagram.  That's ok with me, I will take it.  However, a few weeks ago I had the chance to meet, face to face, the first friend I made in "The Club".  I grabbed my passport, hopped in my car, and headed up into Canada on a Thursday night to attend a fundraiser for Happy Soul Project.  If you know me, you know just getting me out of my house on a weeknight is a task, let alone heading into another country!

I walked into this bar, by myself, knowing absolutely nobody.  Over in the corner, I spotted Pip.  I walked over and found her sweet little face snuggling up to her Mama, my friend.  I gotta admit, I was feeling a little stalker-ish at this point, but I pushed those thoughts aside and introduced myself.  I can't really describe the emotions I felt, but when you get to meet somebody that unbeknownst to them, changed the way you look at the life path laid before you, you get a little emotional.

A few hours later, once the hustle and bustle of the fundraiser slowed down, and once I got my fill of hugging and loving on Pip, we got to have a few beers and chat.  My friends, there's just a peace you get by sharing your stories with someone whom has also walked in your shoes.  I just can't describe it, but it's just ... peaceful.  It just makes you feel whole.  I just makes you happy.

On my way home that night I thought about "The Club".  I thought about Tara's crazy friends that I immediately loved, I thought about the laughter echoing from Noal as we were playing Big Bad Wolf and allowing him to knock us out by blowing through a straw, and I thought about Pip reaching out and wanting me, a complete stranger, to hold her while Tara took a picture.  Mostly though, I thought about how amazingly lucky I am to have found someone that I can look up to.  You see, it's not just about Tara having Pip that puts her in "The Club".  It's the fact that Tara knows that having Pip is the greatest thing that could have possibly happened in her life.  It's because Tara knows, and lives her life showing that, in her words, "Down syndrome is the greatest blessing I never knew I wanted."

I love that I am in "The Club".  I am so proud to be a member, and I know that I will spend the rest of my life doing everything in my power to be the advocate I know I can be.  I do it for my sweet Benjamin, I do it for all the new Mamas and Daddies out there that might need someone to show them what "The Club" is all about, and most of all I do it for me.

T - Thank You for Leading the Way xoxoxoxoxox

Benjamin's 1st Birthday: A Gentleman's Party

On August 5, 2013 at 9:33pm, Benjamin James Freeman arrived into this world weighing in at 6lbs 1oz and 19 inches long.  He was spectacularly beautiful!  365 days later (give or take) we threw one hell of a party to celebrate!

This party was about Benjamin turning 1, but it was also about so much more. It was also about the amazing year that we have had growing together, and stronger, as a family.  It was about the personal triumphs Mark and I have made in becoming parents.  It was about embracing having a child with Down syndrome, as my friend Tara so eloquently puts it, as the greatest thing we never knew we wanted.  This was a celebration of a life less ordinary than the one we had imagined.

One of the MANY names Mark and I refer to Benny as is "The Benjamin".  I believe it came from an episode of "How I Met Your Mother" where they play a game titled "The Gentleman".  For some reason, we started speaking to Benjamin in the 3rd person in such ways as, "Is The Benjamin ready for his bath?", or, "Is The Benjamin in need of a fresh diaper?".  I know...we are complete dorks.  Mark would even go through this little skit of sorts when he would feed him where he would act like a fancy waiter/butler.  As he put the burp cloth up under his chin he would utter in a very butler type dialect, "Your napkin sir...  Today we have a fine vintage pumped fresh from the right boob just last night.  It has been steamed to a perfect room temperature just the way you like it."  This...THIS just killed me.  I would crack up every damn time he did it.  Never got old!

Because of this, what else could we do for Ben's party than have a proper Gentleman's Affair!  This would of course include plenty of Mustaches, Cigars, and Gentlemanly attire for all!!  

I started out by photoshopping each of Ben's monthly pictures to give him a more Gentlemanly look...I mean I added clip arts of Mustaches, Monocles, and Cigars!  HILARIOUS SIDE NOTE ALERT!  This conversation actually took place at Ben's party.  When you are reading it you should picture Betty White as Rose from The Golden Girls.  That character pretty much IS my Mamaw if you add a sweet Kentucky accent.



My Mamaw:  I don't think it was a good idea for Jamie to put those cigars in that baby's mouth.  That just can't be good for him!

My Dad:  Mom, no, Jamie didn't actually PUT the cigars in his mouth. Those are just pictures of cigars and mustaches placed on the pictures of the baby.

My Mamaw: OH!  I was wondering how she got him to wear those mustaches!

Now, if that is not one of the funniest things you have ever heard, then you need to tell me some of your stories!

This day was so humbling for me.  We literally had over sixty people show up to the party!  We did an open house for the entire day, so everyone wasn't there at the same time, but it was incredible!  I cannot believe the outpouring of love an affection that was shown for our little man.  I honestly cannot thank you all enough.  It means so much for me that each and every one of you was there.  I sincerely thank you beyond what words can express.  I must have cried 15 times the next morning going through all the generous cards and gifts.  It was amazing.

Our day included a make-shift photobooth I set up with a green screen and my Mac complete with bowler hats, monocles, and mustaches galore!  This was a BIG hit with the kids.  We also had a mustache pinata and lots of toys and goodies for the kiddos.

For the adults, we had beer.  Holy moly did we go through some beer!  That's all you really need at a party for the adults.  Lots and Lots of adult beverage.

Benny wasn't really into the cake.  He was a little overwhelmed by the time the cake came out, and he just plain isn't interested in food that's not pureed and on a spoon yet, so epic fail there.  We had two cakes: the pretty one a baker made and then the crappy looking one without dairy I made for Ben JUST in case he shocked me and ate some of it.  He didn't.  He just started two-thumbing it and doing his "ah yayayayayayayay" noise he does in lieu of crying.  My husband did however manage to still get cake all over him.  A bath was in order quickly thereafter.

Looking around that day, it was an amazing feeling knowing how far we have come.  I went from being pregnant and overcome with grief at being given the information that Ben had Down syndrome, to celebrating an unbelievable first birthday party that filled my house with so much love I was worried it might burst!  I mean, our pipes in our bathroom burst a few weeks later, so that counts, right?

Benny's buddy, Luc, all dapper for the party!

My sweet Mamaw relieved that there really wasn't a cigar in my 1 year old's mouth.

 Well, Happy Birthday to THE BENJAMIN!  Your party was almost as epic as the day you were born.  We love you to the moon and back little man.

Balance...BAHAHAHAHAHA!

My sweet friend Kelly prompted this post, so thanks Kelly!! Here is a post she wrote on my Facebook page a few weeks ago.

First of all, it was so humbling reading this.  In my mind, I am a complete hot mess that has nothing together.  Thank you for your sweet words my friend.  I sincerely thank you for they meant more than you will ever know!

In that post, she suggested I write a post on how I balance it all.  Well, my friends, get ready for a good laugh!  

I am not an organized person.  I am the epitome of a Pisces with my head always in the clouds.  I am very much a dreamer.  I tend to be a jack of all trades and master to none because my attention span usually doesn't stick with one thing too long.  However, when I truly invest in something, I invest my heart, head, and soul and completely immerse myself into it.  Nothing will go amiss in a project that I am truly vested in.  As a matter of fact, as my husband has pointed out time and time again, I almost tend to get tunnel visioned on things when I invest myself into it.

So, for me, I don't think I balance things that well at all.  I do have a trick though.  My trick will not work for everyone, but it works for me.  I know it works because I could look each and every one of you in the eyes right now and tell you that I am truly and soulfully happy with myself and my life right down to my toes!  I am genuinely at peace, and I am so blessed to be here.  What is my trick? Prioritization.  

There are things in life that I can spend my time on and those things make me happier.  They are fulfilling.  They make my soul soar.  Then, there are things I spend my time on and they don't really do that much for me.  They aren't bad, per se, but they aren't making me feel any fulfillment whatsoever.  These are the things in my life that need prioritization.  

Before I get into how I prioritize my life, I think it's important to talk about how I figured out what really adds to me as a person and what doesn't.  I learned it the hard way.  I, for some dang reason, HAVE to learn EVERYTHING the hard way.  It takes a lot to get my attention...  I also had to learn one very, VERY important lesson about life.  That lesson is that you only have so much of yourself to give and if you want to give more to something, it is inevitably going to take away from something else.  For example, if you want to start a blog, you need to first decide what current part of your life is going to get less attention because of that blog and you need to be at peace with giving that up!  So many people think they can add something in without taking something away.  It just doesn't work like that.  Once again...I learned that the hard way.  

So, after many mistakes, here is how I currently prioritize my life...for now. 

1. Me - I am important.  If I don't take care of me and make sure that my needs are taken care of, then everything (AND I MEAN EVERYTHING) else in my life suffers.  I have gotten to know Jamie pretty well.  I need sleep.  I am not a "rally on 4 hours of sleep" type of person.  I need to wake up and get going or else I will dally all day.  I need to eat.  It's pretty simple, or so it would seem, but for so long I put my needs off until last.  I realize though that making sure I get enough sleep might take away from other things like watching a show I love, or hanging out late with friends.  I realize that, and I need to realize what those choices cost me.
   
    
2. Mark and Benny - This should be obvious.  Your husband and your children should be pretty dang high on your list of priorities, but I know that I learned the husband part the hard way. My career used to take precidence over all.  I used to prioritize my career over everything, including Mark.  If you don't know, Mark and I almost divorced a few yeas ago.  I don't mean we were fighting and said it, I mean we literally separated and got right down to what would have been our final court date.  I told you I learn things the hard way.  Mark and I were having serious issues and I thought they were all his fault.  Just a word of advice from someone that's been there.  If your marriage is struggling, it's BOTH of you that are at fault in some way.  It is very seldom that a failing relationship is just one person's fault.  Look to yourself to find the answers instead of focusing on what your partner is doing wrong.  Today, I ALWAYS make sure I have time for my husband and my son.  I will put off just about anything to spend quality time with them.  I need time with both of them together, and each of them separately as well. They make me a better person.  By feeding into them, I gain so much in me.  But, guess what? To gain something you have to give something up, right?  Sometimes I miss out on fun things with friends to spend time with my husband and son.  Sometimes, ok a lot of the time, I put off laundry and dishes.  Sometimes we eat peanut butter and jelly for dinner.  A lot of times, my house is a mess.  But...here's the thing about that.  My life is better because I prioritize them above other things.  I am happier.  I have tried spending time every day keeping up on all my housework to constantly have a spotless home.  I end up sitting in a clean house and realizing that I haven't read a single book to Ben that week.  I have all my laundry clean and folded and put away, but realize that I haven't had a conversation with my husband in two days. Granted, you can't let all your housework completely get away from you, but I am more than comfortable at 34 years old having a somewhat messy house in which I hang out with my family in.   
   
3. Career - It's number 3 for a reason.  My career is important.  I am the breadwinner in my little family, and will be for at least the next few years.  I have worked extremely hard to get where I am right now.  I have an amazing job working for Verizon Wireless as a Sr. Marketing Analyst supporting Training.  My job challenges me daily and I love it.  I have been with my company for 15 years, and I don't plan on going anywhere anytime soon.  So, if I don't want to be forced to go anywhere anytime soon, this will stay a priority even if it has scooted down from the number 1 spot.  I love my job and my team, and I am a lucky girl.  They have seen me through many title changes and paid for every bit of schooling I have had resulting in me having a Master's Degree in Teaching and Learning with Technology.  Once again, this sometimes means giving things up.  This means that sometimes I miss important events.  Sometimes it means that I don't get to do everything i'd like to.  This is one of those priorities that is necessary to support my #2 priority - Benny and Mark.  I would love to be a stay at home wife and mama, but that's just not in the cards right now.  

   

   My Partner in Crime at work - Liz!

    
4. Framily - I am so blessed to have so many people in my life whom I love and love me back! They are so important to me and I know I am important to them as well.  It's hard to carve out time, but I have to do it to make sure those relationships stay in tact.  I am very picky here though, because my time is so valuable.  The older I get, the more I realize that I need to be pickier and pickier about who I spend my time with.  Are they adding to my life?  Are they helping me to be a better person?  If neither of those answers are a yes, then I have the hard decision of reevaluating those people.  It sounds so mean and so harsh, but for me I am just no longer willing to give up time with those who add to my life for those that leave me feeling empty.  I'm still working on this one...
   
5. Writing/Projects - I love to write.  I love my blog and I love my Down syndrome diary project. These things are a passion for me.  They keep me feeling inspired and creative, and they are my number one outlet for relieving the stress that is associated with being a Mama to a child with special needs.  I have made so many friends in this past year that I met solely though my blogging and my social media projects.  Kelly, who inspired this post, is one of them.  We live hours away from each other but have already connected through our shared understanding of one another's situation.  People who get you are a beautiful thing.  Advocacy is a beautiful thing.  These people i've met and the projects we have created add to my peace in way I don't think I can describe.  It is my coping mechanism, my outlet.  

You see, my friends, I suck at balance.  There is never a great balance for me, but there are my priorities.  Even though my house will get messy, and I will be late for birthday parties, I know that I will always have a smile on my face if I keep these top 5 things in check.  I'm not always great at it.  I stumble, I fall, but I always get back up.  I have weeks where I sleep in too late, and I have others where peanut butter and jelly is on our menu way too many times, but there is an infinite peace in knowing yourself enough to understand what truly works for you in this lifetime.  I have it figured out pretty well right now, but it could change tomorrow.  Until then, i'm just going to keep doing my best.  

I challenge you to think about your own priorities.  What are your top 5?  What do you have to give up for each of them to stay on top?  It's really liberating when you figure that out. :)

So what's the trick to balancing it all?  In my opinion, the trick is that it is impossible.  You just can't balance it ALL.  What you can do is figure out what is truly important to you, what truly makes you happy, and focus on those things.  As my best friend/sister Ramie always tells me, it will all just work out.

xoxo

Jamie

Benny Will Be An Adult With Down Syndrome

Mark and I had the wonderful opportunity tonight to witness his little brother Scottie graduate.  Scottie has a chromosomal disorder where he has an extra X and an extra Y chromosome. He also has Aspergers.  He is 27 years old and graduated from Lutz School for Work Experience.  He was so proud today nervously making his speech in front of all those people.  We were all so proud of him.  I, of course, had to listen from the hallway because somebody decided it was time for some milk.

Scottie's school is filled with wonderful people that all have to work a little harder at things than most. There are a lot of people with Down syndrome, for example, that graduated with my little bro-in-law today.  What an amazing group of individuals!   It was a very inspiring night, and I am so glad we all got to be there to hear Scottie talk about what he wants to do with his life now that he has graduated.

After the certificates were given out, they went around to each graduate and each read a speech they had prepared thanking their family, friends, and teachers.  They also spoke of what they saw themselves doing with their lives after this moment.  This is where it happened.  This is where I had another ... moment.  As the graduates, each with differing degrees of struggle with reading out loud in front of hundreds of people, read through their thank you speeches, they showed pictures of them now and from when they were babies on the screen.  As I watched each baby face on the big screen change to a picture from today, I listened to the hopes and dreams of all these 27 year old souls and I realized something.  Benny is not going to be a baby forever...

Yes, I know that every mother has this moment of panic at some point.  Your baby is going to grow up and it's sad.  But...this was different.  This wasn't a, "I don't want my baby to grow up!" moment.  This was a, "My baby is going to grow up and be a full blown adult with Down syndrome." moment.  Each person in that group of graduates read their speeches, and each person struggled differently than the others...but they all struggled.  It was like every struggle Benny may or may not have as he progresses through the years was hitting me in the face at the same time.

I don't know why, but listening to those speeches and looking at those baby pictures caused a mild panic in me.  I found emotions running through me that I haven't felt since before Ben was born.  I had a moment of fear.  Fear of the unknown.  I wondered immediately if I was good enough. Am I a good enough mother to prepare him for the world?  Sure, I can make decisions now and feel like a bad ass that include things like breastfeeding and vaccinations, but how am I going to react when it come to adult situations? What will I do to help him be independent, hold a job, even just get to places on his own?  HOW will I do all that?  And...what do I do if he just can't?  Will it be my fault?  Will it be my failure? Will Ben be the witty man giving the speech about how he has been accepted to college in North Carolina, or will he be the sweet man that struggled greatly to get through a sentence thanking his mother for all she's done?

Will any of that even matter???

As I sat in the hallway outside of the banquet hall having this moment, eyes overflowing with tears, I looked down at my little man nursing away.  Every time the crowd clapped he would flap his arms and smile, causing milk to run down both sides of his face making the cutest mess ever.  I immediately felt calmer as I looked into those beautiful, blue, brushfield spotted eyes.  I gathered up my handsome little dude and walked back into the hall.

This time, I didn't look at the speaking graduates.  Instead, I looked at my future.  I looked into the faces of the crowd filled with adoring parents, caregivers, and teachers.  There wasn't a dry eye in the place. I am surprised that room could contain the amount of pride that was flowing out of it.  Everyone was so happy, so full of joy.

I realized at that moment that this was another milestone for them. This was another celebration no matter how big or how small. Just like I felt when my boy finally rolled over at the ripe age of 10 months, they feel overjoyed watching their babies move into the next chapter of their lives.  It didn't matter which speech the were giving or how they were giving it.  All that mattered was that they were here.

I walked back over to my family and sat down.  My little Benjamin smiling, and drooling, and getting so excited every time the crowd clapped until finally Scottie walked over to my Mother-in-law, fancy framed Certificate in hand, to show her what he got.  He looked at us and said, "I was so nervous! That was a lot of people.  I was good once I thought about my girlfriend though. Then I did good, don't you think?"

Yeah Buddy, you did really good.  I think you did amazing, and one day Benny will too.  I'll make sure of it.

Happy 1st Birthday Beautiful Boy

It's 10:48pm.  Exactly one year ago today at 9:33pm, Benjamin James Freeman arrived into this world.  Approximately an hour later, I got to hold him.  There were some complications that held up the process, and it's all a little fuzzy to me because they began pumping me with morphine after he arrived.  Either way, I will never, ever forget that moment...

Everyone tells you that you won't truly understand what it's like to become a parent until you do.  Whether that's by birth or adoption or any other means of becoming a Mama or a Daddy, I now agree.  There is a feeling unlike any other when you hold your child for the first time.  Take this picture, for example.  I love this picture.  I am sooo swollen here.  I gained WAY too much weight while I was pregnant, and I had just went through three hours and three minutes of hard labor followed by an hour of something that felt even worse (I will spare you the details) due to my placenta not cooperating.  However for some reason, I LOVE this picture.  I just feel beautiful in it.  Some of you will laugh at me, but I do feel beautiful because I know that at that moment my heart was swelling up inside of me with more love than I thought I was able to give.  That is beauty, and I will take that beauty any day of the week over what I had previously thought made me beautiful. 

Benjamin has completely taken the wheel on my life's journey this past year and made a hard left more than once.  My life has gone in such a different direction than I ever saw it going and I love it!  He has given me purpose.  He has made me an Advocate, a Teacher, a Writer, and most importantly a Mama.  He has made me Stronger, Smarter, Braver,  and has made me Humbler.  He has opened my mind and my heart.  I now know fear, and I understand what it means to truly live for someone. 

If you would have told me that having a child would be the greatest thing that ever happened to me, I probably would have believed you.  If you would have said that having a child with Down syndrome would be the greatest thing that ever happened to me, I would have thought you were crazy and I would have been wrong.

Every single night for the past year I have said the same prayer.  Most nights I say it above Benjamin's crib.  My prayer is, "God, please watch over my little man.  Keep him healthy, happy, and safe so that we may live to smile another day.  Thank you MOST for him of all my blessings." 


Benjamin - You are the blessing of all blessings to me sweet angel.  You have given me more than I could ever give you. Inside your Daddy's wedding ring it says, "I promise to laugh with you every day."  You Daddy and I promise that to you as well sweet boy.  As we go through your 2nd birthday, 3rd birthday, and so on, we promise that we will smile and laugh with you every single day, 365 days a year.

 
Happy Birthday sweet boy.  Your Mama loves you to the Moon and Back.

Diapers

My sweet baby is almost a year old...

Benjamin James Freeman's First Picture

I remember looking at that positive pregnancy test so clearly it's like it happened five minutes ago.  I had SOOO many feelings and emotions in that moment that I didn't even understand yet flow through me.  I was going to be a Mama.  Funny how you can be so excited about that fact and yet have NO idea what exactly that means.  LOL!


That being said, I would like to share something that I have not mastered in this last year.

DIAPERS

Sure, it's easy after a few times.  It's not easy. OK, maybe I am just THAT uncoordinated, but it's just not easy to me.  I mean, I'm not riding the struggle bus so often that the poor kid is wearing his diaper on his head, but I'm definitely not winning any awards for my skills in this area anytime soon.

This problem might go back a bit.  I didn't have much experience in the area of babies before having Ben.  I was the baby in my family, and I didn't babysit much growing up.  Kids were cute and all, but I was just never that interested in them.  I could probably count on one hand how many diapers I had changed.  I remember when my best friend, Ramie, had her little man.  She used to laugh at my clumsy ass attempts at a diaper change.  I'd change his diaper, then look at her and go, "Is that good?".  She'd look at Parker's diaper half hanging off his ass or cutting off the circulation to his junk and say, "Sure??".

When it came time for me to change Ben's diaper for the first time, I was terrified.  First of all, it wasn't under normal circumstances.  Ben was in the NICU and had about 47 wires coming out from his feet, arms, and poor little head.  He was so tiny, and looked so fragile.  I was crying from absolute fear that I was going to hurt him, as well as the insane amount of post-labor hormones surging through me.  After navigating the net of wires around his legs, I got that teeny little diaper open and he immediately began pissing right in my face.  Little bugger.  I know he smiled when he did it, I don't care what anyone says!  I immediately shouted out in an NICU full of sleeping preemies, which went over like a fart in church, and then threw a blanket over his little fountain.  The nurse laughed at us (Mark was unsuccessfully helping me in this endeavor as well), and then took the dirty blanket.  I then put the new diaper under him.  She handed me the diaper cream and I put it on him.  I put enough on him to keep every baby in the NICU diaper rash free for a flipping month.  Poor kid.  The nurse kindly explained that I needed about a hundredth of what I had used on his little bum, and I FINALLY got the new diaper done back up.  The nurse then re-fastened the diaper tabs because I didn't do it tight enough and I began crying.  I was literally thinking, at that moment, "Oh my God they aren't going to let him go home with me!  I am a horrible mother!!!  I don't even know how to change a diaper!".

Well, as you may have figured out, they let us take Ben home anyway.  They let us take him home exactly 7 days after I had him.  Diaper changes have gotten easier, despite the many "accidents" I've had attempting to change them.  I can't count how many times I've been peed on, and I also seem to have gotten crapped on, literally, more times than any other Mama I know.  Ben has an uncanny ability to shit the moment my hand is in key position to receive this gift while wiping his ass from the previous poosplosion.  It only happens to me...

There is something I rock at though...

Diaper Changing Games (May lead to the previous states "accidents")

Why would anyone just change a diaper and not have some fun with it?  With MOST diaper changes, I like to throw in a lot of belly raspberries, peek a boo, tickle time, and the like.  Sometimes we sing some songs, and sometimes we just laugh about the insane amount of poop one little baby can create.  Whatever the case, we have fun.  I'm good at the fun.  I LIKE the fun.  The logistical details of how well that diaper stays on after the raspberries is irrelevant.

So, little Benjamin, I have to tell you.  After a years worth of diaper changes, both good and bad, I gotta say that I wouldn't have it any other way!  If anyone would have told me that somehow getting peed and pooped on just wouldn't matter to me one day, I would have smacked them thinking they'd lost their dang mind.  Today, it's just not that big of a deal.  Shit on me all you want Buddy, as long as I get to make you smile when it's all cleaned up!!  < Add that sentence to the list of things I never thought I say!

My Life is a Rom Com

Laughter is good medicine.  For this reason, I should live to be a thousand and so should anyone that spends a decent amount of time with me.  I say this because I never cease to provide people with LOTS to laugh at me about.

My most recent event that sounds like something out of a comedy happened a few days ago.  Since I, for some reason, like to share my most embarrassing moments with the world, here goes!

Anyone that knows me knows that I have a fascination with Fireman.   However, who doesn't?!?! They are HOT!  No pun intended hehehehehehe!  Not as hot as my husband, OF COURSE, but pretty dang hot! Just saying...  Anyhow, Mark and I have recently purchased a new carseat for the Benjamin. We did a whole lot of research to find the right seat for him knowing that he may indeed be in it and need the support a wee bit longer than others.  After tons of research we finally purchased the La-Z-Boy of carseats.  I mean, this thing is intense.  I'm talking cup holders, airbags, and the ability to hold a child in the 5-point restraint till he or she is 80 lbs!  It will hold them front facing up until 110
lbs!  Like I said, this thing is intense and should be the only carseat we ever have to buy for Benny J.

Installing this new carseat was super easy!  I'm totally kidding.  It was a flipping Rubik's Cube, but I got it.  It took me an hour, but I got it put together and installed.  I'm pretty handy, so I was confident that I did a great job.  Just kidding again.  I am super clumsy and an absolute spaz when it come to stuff like that and I did NOT trust my know-how one bit.  This brings us to the fireman...

Everyone has always said that if you drive to the fire station, they will inspect your carseat for you.  So, I took Benny boy in his new lounger up to the firehouse for an inspection.  I grabbed Benny out of his carseat and walked up with my adorable baby, who was squirming all over the place, to ask for assistance from the nice firemen.  I walked in and there were a group of them sitting there.  One popped up and asked, "How may we help you Ma'am?".  Right after he asked me this question, he quit making eye contact with me.  He was LITERALLY doing anything he could not to look at me.  I asked if they did carseat inspections still with a huge smile, making sure my charm was turned on to full blast, but he would NOT look at me. He mumbled that they no longer did that and asked the other guys where I could go.  They all mumbled something about the hospital, they weren't sure, etc., etc., and NOBODY was looking at me!  How rude!

I finally thanked them for the info and turned to walk back to my car.  This was when I felt a slight breeze go across my chest.  I looked down, and saw it.  My nipple.  Yup, my friends, my NIPPLE!  It seemed that my squirmy baby that has been getting really good at grabbing and pulling lately had successfully pulled my shirt over far enough to show my right boob.  Was I wearing a bra?  Of course! The problem is that I just happened to grab an older bra that morning that doesn't quite fit my post-Benny boobage that well, and a good portion of my nip was hanging out of it.  A good portion of my nip that was out front and center for the Dearborn Firemen to see.  Needless to say, I was mortified.

Yup, this is my life.  You can't make this stuff up my friends.  Don't worry, there are many more horrific, embarrassing moments left that I can share.  Stay tuned.  This is just the tip of the Jamie is a freaking moron saga.  Just the tip, or should I say nip??? Either way, it's just one of many scenes that make up my life.  Hope it made you giggle!

Would I Test for Down Syndrome Again?

One of the first things someone asks me when they find out Ben has Down syndrome is, "Did you know?".  The answer to that is...kind of.  We had a pretty good idea that Ben had Down syndrome based on the results of a newer test called MaterniT21.  The test was 99% accurate, only 9/10th's less than an Amnio, but because it was so new and we had no soft markers on our ultrasounds the doctor's were skeptical.  This is often followed by people with the comment, "I didn't take the test because I didn't care whether he/she had it or not.".

Mark and I are planning on trying for baby #2 soon.  Even though the thought of pregnancy, which I originally thought was going to be sunshine and rainbows, makes me want to crawl into a deep, dark hole, I am excited for the idea of this!  My pregnancy with Ben was pretty stressful.  There were a lot of life changes I was adjusting too, a new house to move into, a newer job I was still getting used to, and the at the time ominous thought that my baby might have DS and the multitude of doctor appointments that go with that.  With all that behind me, I am hoping this pregnancy is a little different.  However, with the thought of getting pregnant as well as the knowledge that having another baby with Down syndrome is very possible at my age, the question of "Would I test for Down syndrome again?" keeps haunting my thoughts.

There was a story I read today in one of the Down syndrome forums that really brought things home for me on this topic.  This mama had given birth to her beautiful baby boy just six weeks ago in her small, hometown hospital.  Her little boy, unbeknownst to her, had a little extra in the form of an additional 21st chromosome.  He also, much like many of Benny's chromosomal brothers and sisters, had a lot of the health problems at birth that are associated with Down syndrome.  Her little boy wasn't doing so well and needed to be instantly transported to a larger, more equipped hospital.  He had a rough go of it, and almost didn't make it needing to be intubated on the way.  This breaks my heart.  I cry just typing it now.  I thank God that this little fighter made it and I am happy to say he is doing amazing!  There have been a lot of losses of beautiful babies in the Down syndrome community lately, which have been affecting me to a greater extent than I would have ever thought.  I cry for all these babies, and I celebrate the ones that make it just as strongly.

My delivery with Benny was stressful, but we were prepared.  I was aware of all of the problems associated with giving birth to a baby with Down syndrome.  I was prepared for all the potential health risks Benny could experience upon birth.  My doctors were prepared.  The hospital I chose to give birth in, with a reputable NICU, was prepared.  We were prepared, and when they did indeed take Benny down to that NICU it was still hard.  It was hard, but not as hard as the horrific outcome if we wouldn't have been prepared.

Another thing I was prepared for was the fact that my world was potentially about to change.  I have read so many blogs from so many amazing Mamas and Daddies about the grief and loss they felt upon the birth of their beautiful children.  Upon the arrival of their little loves, they experienced a grieving for the child they thought they were having as opposed to being able to celebrate the child they have.  I understand this all too well.  I, too, went through this same grieving process.  The difference was that I was still pregnant when I went through it.  When the doctor, moments after I gave birth, confirmed that Benjamin had Down syndrome, I was just relieved that I finally knew.  I had already gone through my grieving, my bargaining, and all my tears.  I was prepared mentally for the arrival of my beautiful little man, and I couldn't have been happier.

When I think about all of this, I know my answer.  I will test.  I will take the in-evasive MaterniT21 blood test again to test whether or not my baby has Down syndrome.  It's not because I "care" whether or not he/she would have it.  It's not because I would contemplate my choice of whether or not to have my baby.  It is simply because I want to do what's best for my baby.  I want to have everything prepared, including my head, to the best of my ability.

So, friends, there's my answer if anyone cares.  Yes, I will test again.  If my baby does have that extra chromosome of cuteness just like his/her older brother, then I will rejoice in the fact that God has blessed me again.  And...I will be prepared.

The answer might be different for you, and that's ok too. xoxo

Awareness

Have you ever really thought about what awareness means?  In terms of all these days, weeks, months, and colors that are supposed to bring "awareness" to something, what exactly does "awareness" mean?  I, for example, have participated in countless activities that were raising money for "awareness".  I've done the Breast Cancer 3-Day to bring awareness for Breast Cancer, and I've done 5K's for Autism and Alzheimers, but what exactly happened?  Who became more aware and of what did they become aware of because of my efforts? 

Every year my theatre group puts on an award ceremony to toast and award the standouts from the ending season.  At this year's Betty Awards, as they are called, I had a moment.  This moment happened during a conversation with a woman I admire very, VERY much.  Lindy Bruton, who was an amazing mentor to me in my early 20's, said something to me that I will never forget.  She was talking to me about my blog and said, "Your blog is changing the way everyone in this group thinks.  You are changing the way they see by sharing your beautiful boy.  I am so proud of you.  Keep going!".  I immediately started crying (shocker for me, I know).

I kept thinking about what she said for the rest of the night.  Am I really changing the way people think?  Am I really changing the way they see?  I am just writing.  I am just writing my thoughts, my feelings, and telling my story.  But why?

Down syndrome is not some big mysterious thing.  People are aware of it.  Before I had Benny, I knew what Down syndrome was...or did I?  I thought I knew what Down syndrome was.  I thought it was something to dread.  I thought it was a severe mental illness that meant you were doomed for life.  I thought having a baby with Down syndrome would be one of the worst things that could happen to me.  I thought it meant being "burdened" with your child for the rest of your life.  So, looking back, I really had no freaking clue what Down syndrome was at all.

Today, I know EXACTLY what "awareness" means.  It doesn't mean knowing that something exists.  It is so so so much more than that.  Awareness means being aware of what exactly something means and not being ignorant to the truths surrounding it.   I know that every single fundraiser, walk or run I do in the future will have much more meaning to me now.  It will have more meaning because I am going to pay attention to what people are trying to open my eyes to.  I want to SEE what they want me to see about their cause. 

If I could put into words exactly what I mean when I advocate for Down syndrome awareness, I would simply paraphrase Lindy one more time.  I want people to change the way they think about Down syndrome.  I want to change the way they SEE by sharing my beautiful boy.  I don't want anyone to ever fear this diagnosis the way I did.  I want them to open their eyes, their minds, and their hearts to all the beauty inside the people who happen to have Down syndrome.  I want them to see these people, and not just see their diagnosis.  I want people to see Benny.

The next time you see a sticker, or a sign, or anything trying to bring awareness to something, try to think about exactly what that means.  It's funny because for me, Down syndrome awareness means looking at Benny and being less aware of his diagnosis and more aware of those cute rolls of chub. 

Thank You Lindy.