Compassionate Opinions

Over Christmas, I had a conversation that sparked a thought in me.  I said something that keeps coming back to the forefront of my thoughts, and I feel the need to put theoretical pen to paper to get it out.

The conversation was about Muslims.  Specifically, the conversation was surrounding whether or not we should allow Muslim refugees into our country.

Now, I'd like to take a minute here and tell you that having a two and a half year old with Down syndrome, four therapy appointments I take him to every week, working full-time, and being 32 weeks pregnant makes me slightly less that fully educated on all the happenings and factual information in regards to this topic.  However, I do feel I have something to get off of my chest.


I live in Dearborn, MI.  I've lived here my entire life, and I absolutely love it.  If you've never been
here, Dearborn is a place to see.  This is the town that Henry Ford built, and it is spectacular.  You will find the Henry Ford Museum, Greenfield Village, and The Henry Ford Estates all within the walls of our city, which people come from all over the world to see.  You will find spectacularly well-kept historic homes that boast over a hundred years of history, as well as a community of people within them that believe in keeping up with the traditions and history of these gorgeous works of architecture.  During Christmas every year, you will find a plethora of gorgeous lights on so many homes (regardless of religion) and, on Christmas Eve, lines of luminaries

up and down many of the streets lighting the way for St. Nick. 

You will also find the largest Muslim population in the United States, which is probably the only thing most of you know about my dear city. 

If you've spent any time on social media lately, any time at all watching the news, or even so much as kept your ears open at a local restaurant, you've probably heard somebody say something horrible about Muslims or people from the Middle East in general.  I refuse to reiterate the horrible, awful things I've read or heard recently, so I am going to assume you all know what I am talking about.

It is of my own personal opinion that most hate brews from fear of the unknown and lack of understanding.  Hate brews when we are terrified of something, something awful, and the terrorist attacks that have been happening in abundance lately are doing exactly what the terrorists want.  They are making us terrified.

While my entire life I have had daily interactions with people from all differing ethnic backgrounds, including Muslims, I have recently began to realize that most of the people in our country have not.  Most of the country gets all of their information and interaction with the Muslim population through what the news chooses to show you.

This is not where my information comes from.

My information comes from my dad's friend Jay growing up.  Jay is one of the sweetest and most generous men I know.  He's taken my family to dinner, bought me Christmas presents when I was little, and laughed hysterically when my best friend Ramie insulted his entire business at dinner one night by telling him she thought his tea was disgusting.  I most recently saw Jay at the fundraiser I held for The Down Syndrome Diary.  He was there, as always, to support our family and me.

My information comes from my old assistant manager, Lena, from when I managed a retail store.  We were so close, we used to ask each other the most inappropriate questions possible about each others families and religions and laugh til we could hardly breathe.  I won't go into detail because you would all probably think we were ridiculous, which we are.  We would joke and laugh and learn from each other daily, and I still consider her one of the dearest people to me even though we don't get to see each other very often anymore.  I miss seeing her face every day. 

My information comes from my neighbors, Billy and Zara.  Zara and I have been pregnant now at the same time through two pregnancies.  Their little boy and Ben are almost the exact same age, and they just had their third beautiful baby boy who will be just a few months older than Ellie.  Their little girl is probably the sweetest and cutest thing I've ever seen in my entire life, and loves Benny like there's no tomorrow.  Zara has watched Benny for me, Billy continuously snow blows our front walk for us, and they are probably the coolest people you will ever meet in your life.  If anyone is the jerk neighbor between the two of us, it's us.  I'm the one that can't drive our damn truck very well and consistently rolls over Billy's perfect lawn.  We are the ones with the annoying yappy dogs that never shut up.  We are the ones who forget to take our garbage cans up for days at a time.  Oh, and by the way, their Christmas tree puts ours to shame.

My information comes Monday through Friday when I take Benny to daycare.  Miss Riam is Benny's primary caregiver.  Benny absolutely lights up when he sees her and immediately reaches out for her.  Miss Riam lights up as well, because she is absolutely in love with my kid.  Every morning, I hand my son who I love more than life itself over to her.  She hugs him, kisses him, and he consistently attempts to rip off her Hajib which she thinks is hilarious.  He especially loved the reindeer antlers she wore the week before Christmas, and focused on ripping those off her head for that week in lieu of her Hajib.  She pays close attention to everything I tell her about what we need to focus on with Benny's therapies, and always has lots of questions about ideas she has to help him do better.  She even requested a walker to keep at daycare so she could practice with him throughout the day.  The day there was a shooting at the mall behind our daycare, I walked in to find Miss Riam in the safe room with all the other children and caregivers holding on to my child for dear life on her lap.

I don't get my information from the news.  I get it from life, and I feel so blessed that is the case.  I am not saying I am immune to the fear and the terror that is happening in our world right now, and I am not going to sit here and pretend I haven't had a horrible thought cross my mind, or an ignorant statement cross my lips that was birthed from those fears.  What makes me lucky is that whenever the stories on the television come into my thoughts, I have real life to fall back on.  I am grateful that the media doesn't get to choose how I feel and think, because I get to dip into my own pool of relationships, memories and emotions.

I am also glad that when the news outright lies about things happening in my city, such as all the ISIS rallies they claim are happening which are actually PEACE rallies less than a mile from my house, I am here to see the through their lies with my own eyes and heart.

I know not everyone out there can have 35 years of experience living with and around people who follow Islam and are from the Middle East, but I ask one thing of you all.  You can have your opinions, that is the beauty of freedom.  You can state your fears out loud, that is the beauty of the first amendment.  What I ask is that when you are speaking, typing, thinking, you remember that a "Muslim" is not a thing.  A "Muslim" is group of human beings with the same fears as you.  When you say something about the "Muslims", you aren't talking about a far away group of people whom you only see on TV.  You are talking about my dad's lifelong friend, my friend, my neighbors, and the beautiful, light-filled woman I trust my Benny with every single day.

You may feel what you feel, and think what you think, but please also remember to be kind and respectful.  This is all I can ask of you.

“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.”
― Dalai Lama XIV, The Art of Happiness

Salon Legato Made My Day!

When you are six months pregnant, have a toddler with four therapy appointments a week on top of about 2-3 doctor's appointments a month, and have a full-time career, sometimes you get a little bit tired.  Ok, that is complete crap.  YOU'RE ALWAYS TIRED!  This tired is different than normal tired.  This is a constant, knock you on your booty, make you feel like you are losing your ever-loving mind kind of tired.  Because of this, when someone calls and asks you if you would like to enjoy a free day of pampering at a local spa, your reaction is something along the lines of...

Ahhhh my honeymoon....

Anyhow, I was ecstatic.  I needed a day for me and a day I was going to get!


My luxurious day began by visiting beautiful downtown Birmingham, MI.  I don't know why I never go down there.  IT'S GORGEOUS!  I easily found my way to the Aveda Salon, Salon Legato, that would be in charge of my pampering.

Upon entering it was so calming!  Beautifully decorated for Christmas and smelling amazing, this was definitely a relaxing atmosphere.  I was given a hot cup of Aveda Tea, which is delicious by the way, and began getting prepared for my facial.



Ok, I have to be honest.  I hate massages.  I don't know why, but they are just really awkward, uncomfortable, and NOT relaxing to me at all.  I love a good back or foot rub at home by the husband, but that's about it.  A facial I had never had before, so I was slightly hesitant since it seemed very massage-esqe.  It. Was. Glorious!

I started out with a hot stone soak/massage on my feet.  If you've ever been pregnant, you know that

this alone is bliss.  Then, Becca my wonderful miracle worker took me through a variety of scrubs, essential oil smells, and hot towels that made my face, shoulders, calves, and feet feel like butter.  It was so unbelievably relaxing.  I would SO do that again!  The first thing I told my husband when I got home is that next time he finds himself wondering what to get me for a present, I want another one of those!

After my facial, and some more Aveda tea, I got to visit with my friend Karen to get my hair cut and colored.  I am currently growing out my pixie cut, so she couldn't do much with me, but worked her magic anyway and shaped me right up!  PS...Side Note... I LOVED my pixie cut, but alas the keep up was a little too much on me.  It made day to day hair styling easy, but required a haircut about ever six weeks.  This Mama didn't have time or money for that, so we will be going back to my long and curly locks.  Messy buns will be my friend again soon!

Once my hair was spruced up, Becca put a little make-up on me and I felt like a new woman!  It was SOOOO nice!

Thank YOU Thank YOU Thank YOU Karen, Becca, and Salon Legato!  I can't tell you in words how much this day meant to me.  In the crazy life this Mama lives, I felt so honored and blessed to have been able to experience a day like this to forget therapy appointments, doctor's offices, work, housework, etc etc etc....

You many have prevented a meltdown or two, and for that my husband thanks you as well!!!

If you live in the Metro-Detroit area, please think about visiting Salon Legato!  Tell them you read about my experience and let Karen, Becca, and everyone else know I said THANK YOU!!!

xoxo - Jamie

Another Detour

Look At Those ROLLS!

Donated three boxes of Gluten Filled, but still great foods to the Oakwood Center for Exceptional Families​ last night.  Felt good to get rid of all of it.  It was kind of cathartic, like a fresh start to helping my dude develop even better than he already is!  Can't wait to get a little weight back on him!  I also like that our donations will go to families who are raising children with differing disabilities.  We know all too well how all those therapies and medical bills add up and can seriously take over your budget.  We are blessed to have a good income and insurance, and we still struggle with all the costs associated with Benny. 

This morning we head to the Pediatric Gastroenterologist to talk about next steps in finding out if Celiac's Disease has done any damage to Benny's tummy and small intestine.  I'm trying so hard not to beat myself up about not going Gluten Free from the start with Ben like SO MANY fellow Mamas and Daddies in "THE DS CLUB" told me.  There is a lot you have to be wary of when raising a kiddo with Down syndrome, and sometimes things fall through the cracks.  Some days you just wanna be "normal" so bad, whatever the heck that means, that you push all the warnings to the back and live.  Then, just when you get comfy, it bites you right in the ass!  Oops...

I'm gonna continue to ride that fine line between being the anxiety ridden bag of worry and precaution that I have potential to be, and being so carefree that things continue to fall through the cracks.  Just keep swimming, right?!?!

Are those planets Gluten Free?

Please, don't take this as a "woe me" thing.  I feel GREAT!  Actually having an answer as to what is going on is the most STRESS RELIEVING thing ever!  Plus, Celiac's is manageable!  It's just a diet change!  That's all!!!  I honestly couldn't be happier.  

It's time for a change.  I like change.  I actually crave it!  Every detour is a new chapter in your life friends.  You decide how that chapter starts.  For me, this chapter starts with a fist in the air and a smirk on my face.  Celiac's Disease - watch out!  You are NO match for this Mama!

After all...I could use a few less peanut butter and jelly sandwiches in my life anyhow.  I'm pretty sure my butt is sticking out farther than my six month pregnant belly right now! 

STRESS LEVEL: DANGER!

A lot of insanely great things have been happening lately, but a lot of not so great things have been happening as well.

We held our first fundraiser for The Down Syndrome Diary last Friday, and it was a complete success!  The Halloween Party had an amazing turnout of generous people who came out to have a great time and support my project.  I was so humbled at the turnout and I can't thank everyone enough!

There was a bit of a dark cloud leading up to that day with my career though.  The company I work for unexpectedly let go of thousands of workers last week, and my position was eliminated.  I was lucky enough to be one of the few to be reallocated to another team, but so many of my co-workers were not.  I have been working there for 16 years, since I was 19 years old, so this was quite an emotional few days.  While I understand the direction the business is going in, and even agree with it, I am still reeling from emotions of having people I've known for over a decade lose their jobs.  For me, and for my family, losing my job would while pregnant would be a game changer.  I am the main breadwinner, and everything would have to change. 

Standing on the precipice of change is always scary, but I usually roll with changes pretty well.  I've spent this entire week trying to figure out who I am working for now and what it is that I'll be doing.  As the pieces slowly started to coming together, the puzzle was blew apart again at Benny's specialist appointment. 

At 18 months, Benny's weight began dropping pretty dramatically.  His poo was always mushy, sticky, and overly stinky, so we had suspected Celiac's disease (common with Down syndrome) or thyroid issues.  We tested his thyroid multiple times, and everything seemed to be ok there.  We were attempting to find an allergist to test for Gluten Intolerance, but I couldn't find one that would see a baby that young.  Meanwhile, Benny's weight began to go back up, his diaper situation began to normalize,  and we seemed to be past whatever the problem was.  I stopped worrying, about that anyhow. 

Then, at his two year specialist appointment, Benny's doctor freaked.  In the last month Ben has begun to lose weight again, and has broken out with a horrible case of Keratosis Pilaris.  I hadn't been too worried about his weight/height.  He's small, but his normal pediatrician liked his progress.  The specialist, however, said we are officially in a state of "failure to thrive". 

That was last night, so today we had to get emergency bloodwork done.  I had to email my new boss whom I've never spoken to before, who has never even heard my name before, and tell him I had to skip out of work to take my kid in for emergency bloodwork.  Now, this might not seem like a big deal to most of you, but I have been in the corporate world for a long time.  There are people that get it, that understand, and there are people that DO NOT.  Working mothers get judged pretty hard in the workplace, and a mother of a child with special needs is at the top of the judgement list for a lot of folks.  Little do these people know, we are the bad asses.  We get shit done. We are often the hardest damn working people IN the business, but the stigma is there nonetheless. 

Based on the response I got later that day, it looks like my new boss is not one of those people.  Thank God almighty, I think he's one of the good ones that just gets it.  I can't tell you the relief I felt based on his response today.  Hallelujah!  I didn't have this relief yet though as I headed to the hospital.

Walking into the hospital, I went to the welcome desk to find out where I needed to go to get the insane amount of blood drawn for Benny.  As the new girl at the desk was trying to figure it out, Ben projectile vomited ALL OVER HER DESK.  I mean...there was a LOT of puke.  It was everywhere.  EVERYWHERE!  Emotional as I was already, I began to cry as I tried to clean up the puke.  The girl at the desk, who was about 12 I think, looked shocked and just sat with her mouth open.  Luckily, another lady immediately came over to help.  She was so sweet. She made me stop cleaning, and sweetly told me to just worry about my boy and she would take care of everything else.  Once Ben was cleaned up, she escorted me to the lab.  I was literally sobbing.  I looked like a complete mess, and the 12 year old girl at the front counter was still sitting in shock.  I don't know if it was the puke or the Lake Superior level tears streaming down my face, but we got her good!

Once we got to the lab, Benny was charming and smiling at everyone as normal just like nothing happened.  We then proceeded to have what would probably be the best attempt at drawing his blood I've ever experienced.  As I held him, the two ladies helping us made animal noises right along with me as I sang Old McDonald to keep Benny's mind off of the needle.  He didn't make a sound!  He smiled through the entire process!  These ladies were amazing, and I cannot thank them enough.  However, the vein she got was tapped out and she didn't even get half what she needed. 

We took a break at that point, had some juice, and then Ben proceeded to projectile vomit all over the room we were in.  We cleaned up the puke again, and started to set up for arm #2!  The same two ladies came in, but unfortunately his other arm didn't have a viable vein.  They needed to go into the same arm again, different vein, to finish it off.  This did not go as well.

The ladies had to call their 3rd associate in for help, as Ben was not calm this time.  He was wiggling, and squirming, and fighting as much as he could.  These three sweet ladies, who were amazing at their jobs, were working in sync to try and get this blood out of him as quickly and painlessly as possible while talking sweetly to my Ben the whole time.

As they were doing this, there was this lady in the lobby.  As the four of us were wrangling my poor two year old, whose arm was probably already sore from the first blood draw, she began throwing a fit.  She began yelling and complaining about what they were all doing in the room with us, and why wasn't she being helped, and she didn't have time for this, and were they taking a break, etc etc etc etc.  The main nurse helping us kept calling out to her explaining they were helping to a toddler with a disability at the moment, and she would have to be patient.  I about lost my mind!  Talk about a Mama bear making an appearance!!  I yelled something not so nice out to her as well, at which point the three lab ladies all smiled approvingly.  The whole process was awful, and that lady had made it a million times worse.

Once we were done, I sat in the room holding Benny and calming both he and I down before we ventured out.  Once we left the room, we had the unfortunate timing of leaving at the same time as the lady whom we had inconvenienced horribly.  In the hallway, she had the gall to speak to me (as I am still quietly sobbing mind you).  "I am sorry, but those people in there were paying no attention to me and I needed to get back to work!  They are always so inconsiderate!"  Then, this is the moment, that I literally thought about handing Ben to a nearby nurse and literally kicking this lady's ass.  She put her hand on Ben and said, "And it seems like you were being a stinker and holding everybody up!"

1....2....3....RAWR!!!

Everything from the last few weeks seemed to boil out of me at that moment, and I cannot believe I held it together as much as I did.  I turned to her, "He had SIX VIALS of blood drawn from him in there!  SIX! SIXXXXX!!!!!  He did great, despite your yelling.  SIX!  I am so sorry we inconvenienced YOU!"

I turned and walked sharply away from her at that moment before I did or said more than I would be able to take back.  I got Ben to my car as quickly as possible, and I cried.  I cried HARD for way too long before I composed myself enough to drive home. 

Six months pregnant, ridiculous changes, and lots of unknown hanging over me, I suddenly felt better.  LOL!  I swear, sometimes, you kind of need to hit that breaking point before you start to feel better!

For the first time in weeks tonight I feel a bit calmer.  I am anxious of Benny's bloodwork, I am anxious about my new job, but I feel the slightest bit better.  I know that we always come out the end of "bad" situations for the better down the road, but it's just a little difficult to see at times through the tears.

Thank You so much to the wonderful lab ladies today at Beaumont Dearborn that made a horrible situation as painless as possible for me and my Benny.  I can't thank you enough.

To the lady whose time was so important that you made a horrible situation for a two year old with Down syndrome and his pregnant Mama even worse, Bless YOUR Heart in the most Southern way possible!

This Is Why I Do It

I've had a bit of an emotional few months.  Granted, I am 17 weeks pregnant with my second child, so the hormones are not helping, but things have been difficult lately.

Today, I had the opportunity to speak at my Alma Mater, Eastern Michigan University.  I was asked to speak to a group of grad students going into occupational therapy about what parents of children with special needs would like them to know.

Paris, 1998.  18 Years Old, and of all things in Paris,
 I wanted to see Jim Morrison's Grave.

As I drove on to the campus of good 'ol EMU, I was instantly flooded with memories.   I couldn't help but think of the 18 year old girl with hippie hair down to her waist filled with dreams of being a school teacher.  I found myself lost in glimpses of myself sitting at different spots on campus wondering how I was going to truly make an impact on the world.  As I thought of that girl, that wide-eyed, open-hearted dreamer, I couldn't help but feel like I had let her down a bit.  How did I go from wanting to be a teacher and traveling with Peace Corps in my summers, to working for a major technology conglomerate?  I felt a little bit of sadness amidst my nostalgia as I looked for the classroom I was expected to show up in through the downpour that had suddenly started.

There were probably 50-60 students in the class as I walked in, maybe more, and my presentation was already up on the screen ready for me.  I would love to tell you my nerves perked up here, but they didn't.  If I'm good at anything, it's public speaking.  I'm good with a crowd.  I know how to give a presentation.  I was fine.  The instructor introduced me and handed me the controller for my PowerPoint, and I began.

I wasn't even a slide or two into it when it hit me. These were the people that would be helping new Mamas and Daddies just like me try to help their babies work towards milestones.  These are therapists.  I am speaking to an entire room, a very large room, full of hope for babies with all kinds of special needs.  What hit me at that point was this: "What I say here today matters."  For the first time in a very long time, I had a bit of stage fright.

I cleared the lump that had begun to form in my throat from the realization I just had, and I continued.  I turned off "trainer Jamie", and I just spoke to them.  I was raw, and honest, and I OF COURSE had to throw in a few tasteful jokes here and there.  I mean, come on, it wouldn't be me if I didn't throw in some horrible one-liners.  Let's be real.

When my presentation, which was supposed to be an hour and had stretched to almost two, was finished, I stepped into the hallway for a few moments while they filled out some evaluative surveys on me.  I then went back in, said my Thank You's and Goodbye's, and walked back to my car... surveys in hand.

Of course, I immediately had to look...

These a just a few of the surveys I read as I walked back to my car.  My friends, I am not exaggerating, every single survey was like these.  They were left feeling positive, and moved, and pumped, and I did that today.  I taught them.  I helped.  I am NOT bragging, trust me, I am just floored right now.  I could have walked away telling you a hundred things I could have done better, but these surveys took me to my knees.  

Multiple people, when asked "What key phrases and words caught your ear?", pointed out the moment I talked about the struggle I deal with of whether I am Benny's Mama or Benny's therapist. They remember me saying that their patients are children first.  They often wrote down, "Person First Language".  

When asked, "What could improve this presentation?", many answered with "If we had more time to hear her talk."  I spoke for two hours...and they would have liked to hear more?  That is humbling, and unexpected since I happen to have a tendency to talk too much.  

Of course, they also would have loved it if Benny was with me.  I mean, who wouldn't?!  They also requested even more pictures and videos, on top of the ridiculous amounts I had in my presentation. Never fear, I pointed them towards our Instagram, Facebook, and Blog.  :)

As I'm reading their words and walking back through that campus to my car, I see that wide-eyed little hippie girl again reading her copy of Harry Potter under an oak tree.  However, I feel a little different this time.  

Maybe it wasn't the way I planned, maybe it's not the route I mapped out, but maybe, just maybe, I am making an impact on this world.  I smiled at her, and she smiled back at me with those big blue eyes that reminded me of my beautiful son.  

Best. Response. Ever.

Had a wonderful moment the other day.

I went downtown Detroit to the riverwalk with my best friend, Ramie, and her kiddos.  We were sitting in the riverside cafe and Ramie took her two older kiddos over to ride the carousel while Benny, her newest arrival Carter, and I stayed back enjoying the view.

Before I continue, I'd like to give a little back thought.   You see, there's this absolutely 100% normal question that I get alllllll the time that leads to a slightly uncomfortable feeling.  The normal questions people ask when you have a baby can sometimes lead to an awkward encounter for Mamas who have a child with a little extra.  Here's an example conversation that I have with strangers multiple times every single week:

Stranger: Oh, what an adorable little boy!!!!  How old is he?

Me:  Thank You!  He's 2 (or whatever age he is at the time of these many convos)

The awkwardness inevitably starts to work its way in right here

Stranger with slight look of worry/shock on their face: OH....  Is he walking yet?

I'm assuming the slight look of worry/shock comes from Benny being slightly smaller than a "typical" two year old and the fact that he is just babbling and comes across much younger.

Me: No, he's not.  He has Down syndrome, so we get the pleasure of a stretched out timeframe of milestones.  (My canned response)

This is where it gets REALLY awkward.  The rest of the conversation is filled with "I'm sorry's" or variations thereof where I get to get on my high horse and state positively that this is nothing to be sorry for.  Sometimes, actually most of the time, there's no more conversation after this.  More often than not, the conversation will end right here with a smile and a "Good Day".  There's a few of the "You are so blessed" statements or the "I have a cousin/uncle/sibling/neighbor/etc with Downs".

These conversations, for the record, don't upset me at all in any way.  I don't mind them.  I look at the positive side of it, for the most part, and that is that my kid is so damn cute people have to go out of their way to strike up a conversation.  I don't even mind the responses because, if i'm being honest, how would I have responded pre-Benny?  Trust me, I've put my foot in my mouth enough times in my life to know that there are a lot of times we find ourselves in a conversation about something we simply don't know how to respond to.  To everyone out there, that's understandable and ok by me...not that my opinion matters all that much. :)

Ok, back to Benny, Carter, and I watching the rest of our crew on the carousel.  The lady next to me with her two kids and partner started the conversation.

Awesome Lady: He's so cute!  How old is he?

Me: He's two.  Just had a birthday last week.

Awesome Lady: Bless his heart!  Look at those blue eyes!  Oh Mama you gonna have your work cut out for you!!!

Me: (laughing) Yes I am!

Awesome Lady:  He walking yet?

Me: (Insert my own issues and my own awkwardness here...because none of it was coming from her) No,  he's not.  He has Down syndrome, so we get the pleasure of a stretched out timeframe of milestones.

Awesome Lady: I knew that right away.  I can tell, but that don't mean he ain't walking yet.  I don't care what disability a baby has, he gonna do things when he gonna do them.  And trust me, they all got disabilities in some way shape form or another.  Ain't no one perfect, but we all capable of anything.  My sister has Down syndrome and she taught me to assume nothing 'bout nobody. 

Me: (slightly choked up)  You're so right.  Thank You for that.

Awesome Lady: No need to thank me.  He's adorable!  (pinches Benny's cheek)  We (pointing to her partner) work with children with special needs.  They're no different than these little rats (gesturing to her kids).  You have a good day!

Me: You too.

They walked away right as Ramie was walking back with her kids after the carousel ride.

After a few days of reflection on that conversation, I wish that lady knew how much it meant to me.  It wasn't AT ALL what she said, which was awesome, but it was how she said it.  The whole "I knew that right away, I can tell,..." was a relief.  There was none of me guessing whether or not she already knew.  There was no awkwardness over my answers.  She was just matter of fact about it, and to be honest, kind of put me in my place a little over her question about him walking or not.

It was perfect, and if by chance you read this miss who was at the carousel on the Detroit Riverwalk last Wednesday, thank you for being so blunt.  It made a usually awkward conversation very easy for me, and I can't tell you how much I appreciate it.

To anyone out there that's ever curious about Benny, or has a question, I invite you to just ask us.  Come right out with it.  I encourage curiosity and love to educate.

Perhaps, just perhaps, you can even make me take a step back and realize how much of my feelings are really just my own issues.  My Mama bear provoked insecurities about what people are thinking are probably way worse than the truth. 

2 Is Looming: Benny Update

What are birthdays for if not for reflecting?

Benny turns two years old in less than a month.  TWO YEARS OLD!  It's such a cliche, and I know it, but I honestly don't know where the time has gone.

It's been such an amazing year.  Last August, at a year old, Benny was just starting to smile and laugh again.  Today, he is a different child!  I figure I should take a moment and just give you all an overall update on his progress.

My adorable little man is pulling himself up to stand and get to things ALL OVER THE HOUSE! He's booty scootin' like he's on a mission and I can barely keep up!  He knows how to give kisses, he's started to mimic us, and he's eating like a horse.  He drinks from a straw, and pretty much eats everything you give him.

We are still working towards self-feeding.  The little bugger will pick food up, but refuses to put it in his mouth.  I'm pretty sure he's just stubborn. LOL!

We just got some SureSteps!  YAY!  Hopefully this helps us get to the walkin'!  We kind of just skipped that whole crawling thing I think.

Teeth are ALMOST all in!  We are waiting on one eye tooth and two molars.  I can't tell you how excited I am to close the book on freaking teething.  TEETHING SUCKS.  That is all.

We still don't have many cognitive milestones checked off the list, but trust when I tell you there is some serious thinking going on behind those big blue eyes.  Ben is so attentive when you talk to him, sing to him, read to him.  I feel like he's just taking it all in and one day he will start bursting forth with animal noises, pointing to colors and shapes, and signing his wants and needs!  For now, i'm ok with his adorable little face staring up at me with those big smiles.  I mean, really, he's obviously just a great listener and doesn't want to interrupt anyone just yet.

He's recently started grabbing people's hands and placing them on what it is he wants.  I think this is pretty cool!  It's the first sign of communication i've seen from him and I couldn't be prouder!  He seems to like figuring out his own way of doing things.  He's a rebel.

Along with all this developing, is also a developing personality.  It's adorable, and at times exhausting.  Yes, my sweet Benny cries now.  My sweet, sweet baby that literally cried four times in the first 7 months of his life, has full on meltdowns.  He's not a fan of the word "no" at ALL!  He sticks out his lip and wails out with sheer horror at the audacity the person who said "no" to him.  It's adorable.  No, for real, it's actually pretty adorable.  Except for today, when he did it like 743 times. Not quite as adorable when that happens.

I wish I could say it's all good, but that would be a big, fat lie.  We are having trouble with him hitting himself in the head, grabbing and pinching people's skin, and biting.  It's slowly getting better with serious amounts of consistency with the whole "no" word.  We have to say "no", put him down or take him away from whatever the situation we are in is, and then deal with the inevitable pouty lip wailing for a few minutes.

Sensory overload, common in children with Down syndrome, is definitely starting to make itself known.  Ben LOVES people!  LOVES THEM! However, he can get overwhelmed in group situations if i'm not careful.  I'm starting to learn some basic things that work for him. Sometimes, he just needs some quiet time with Mama for a little bit and all is good.  Other times, we have to call it a day.  As for me, this will not deter me.  I will still take him to the birthday parties, the zoo, etc.  I am going to be there for him, help him through it, and hope we do better every time.  It seems to me that he gets a little better in each situation and I am hoping it continues that way!

I think the greatest part about this last year has been watching all of this happen.  Watching him learn, grow, and develop is an absolute joy.  Every day now he's doing something he didn't do the day before, and it's absolutely fascinating!  My heart wells up with joy and pride with every single skill he learns. I love you my little sidekick.  Can't wait to see what you do next.

A Thank You Letter...

I had no idea how lucky I was at the time...

With Benny turning two years old next month (eek), I am doing a lot of reflecting.  I have made so many friends whom are all on this beautiful journey with me and have little ones with a little extra. Inevitably, when you first get to talking with someone who also has a child with Down syndrome, the question of, "How did you find out?" always comes up.  

I have heard the most upsetting horror stories that make me sick to my stomach.  Can you imagine the first thing your doctor tells you after finding out your child has Down syndrome being, "The life expectancy isn't great for them."?  

I've heard so much lack of compassion on the part of the many medical "professionals" that were there during the delicate time my friends were finding out about that one extra chromosome.  Stories of nurses giving attitude about it, doctor's referring to the child as "it", and parents being pushed towards termination time and time again.  

"You don't have to be a hero, you know."

"We will need an amnio ASAP in order to do the abortion this late, but don't worry we can still do it."

"You want to keep it?  Why?"

"You DO realize the quality of life you are looking at for the child and for yourself, right?"

These are some of the statements that my now dearest friends heard shortly after the diagnosis was given or suspected.  These statements are horrifying, poorly-timed to say the least, and also ALL second hand for me.

This is NOT the experience I had.

I love my OB.  She is hands down the best gift I could have asked for during my pregnancy with Benny.  I had no idea about it at the time, but now I know and I couldn't be more grateful for everything this woman did and said to me.

When Dr. Mazey first told me that it was confirmed, that Benjamin did indeed have Down syndrome, the situation was slightly tense.  This was the ONLY time, during my entire time with her, that she was slightly emotionless.  She quickly rattled off my options and next steps scenarios.  She was looking slightly off to the side and being very matter of fact about it, even though she was squeezing my hand the entire time.  She was very professional and very to the point in the least judgemental way possible.  I can tell, especially now with hindsight, that she wanted to make sure that she didn't persuade me one way or the other and I have nothing but respect for her for that.  She did her job brilliantly.  She used a lot of "IF you decide.." type statement to make sure I knew nothing was set in stone.  She did exactly what her oath would expect her to do.  

I told her that termination was not an option.

Then, she made teary eye contact and said the most powerful statement to me that I could have ever heard at that moment.  She looked me in the eyes and said, "This is YOUR baby in there.  He is still YOUR baby.  This changes NOTHING."  

Dr. Mazey went through the rest of my pregnancy with me giving me the most unbelievable support an OB could give.  She held my hands when we had to talk about some things that may be difficult, she hugged me the few times I broke down in her office, and she made sure to explain every single bit of information to me in a way that informed me but did not scare me.  She called me occasionally to see how I was doing, and she called me out on my bullshit smiles I used to try to keep on my face when we were talking about the potential health problems Ben might have.  

By the way, once we told her that Benjamin would indeed be Benjamin, she never referred to him by anything but his name.  

Unfortunately, Dr. Mazey was out the day I delivered Ben, but her partner Dr. Gilbert is just as amazing as her and walked me through the delivery like the champ she is.  The next day, Dr. Mazey came to visit us.  She walked into my hospital room and snatched that baby up with as much love and excitement as anyone could possibly have.  She genuinely smiled at him, and at me, and gushed over how beautiful he was. 

I am so thankful for the experience I had.  Dr. Mazey and the entire staff at St. Johns in Detroit were prepared and perfect.  They all fell in love with my son and could have cared less about his diagnosis. They cared for my Benjamin, and not for "that Down syndrome baby in room 301".  

Thank You.  Thank You.  Thank You.

To all of you that weren't as lucky as I was, I wish I could change the past for you.

What I CAN do, is attempt to change the future.  What I CAN do is everything in my power to hope that those of you out there that have a diagnosis in your future and don't have the luxury of a Dr. Mazey can find hope and love in the words of myself and my friends as you begin your journey.

Please visit www.thedownsyndromediary.com to learn more about how we are trying to help.

- Jamie

The Unbearable Process of Weaning

I've been a bit of a mess lately...

Ok, let's rephrase.  I've been a bit MORE of a mess lately than I usually am.

Ben was 21 months old on the 5th of May, and he has boisterously decided that he is done nursing. The problem with that is that I had a PLAN!  A PLAN!  One of the very first things I learned about babies with Down syndrome is how vital breastfeeding can be in helping them form the oral motor skills needed for eating, drinking, and talking later on.  Benny's specialist told us, "There is absolutely nothing our speech therapists can do for him later that will help build those muscles up as much as nursing him will do, and I highly suggest you nurse until he is at least 24 months."

Mind you, this was told to me as I was feeding my little love a bottle of expressed breastmilk because he wouldn't latch on.  I was slightly less than devastated because of my, in my own mind, failure. You see, Benny HAD latched on right after birth.  My little man latched on and drank to his heart's content as soon as I was able to hold him to the awe of the doctors and nurses.  I was told that breastfeeding would be difficult for him due to that lovely extra chromosome, and probably unlikely, but he slurped in the face of negativity and drank on.  However, he then began having complications and was taken to the NICU where he spent the next 7 days on a bottle.  They tried to have me breastfeed him, but he was bottle spoiled and I was exhausted, and clumsy, and uncomfortable in this room full of anxious parents and their beautiful warrior babies.  So, I learned how to pump and pump I did.

Back to the oral motor skills...

Being that this tidbit about breastfeeding and how important it was for speech development was stuck in my head, I became a Mama with a mission.  I was absolutely determined to get Benny to latch again and give him this little extra boost, no matter how small, to help with those mouth muscles.  I became obsessed.  I tried EVERY SINGLE DAY to get him to latch.  I tried nipple shields, different positions, and anything else that was suggested to me.  Looking back, I think there was a bigger meaning here.  Looking back, I think that at this point when very few people still even knew about Ben having Down syndrome, this was the one thing that gave me the slightest bit of presumed control.  In my post-natal, hormonal brain, getting him to latch again was the first battle in the war of Jamie vs. Down syndrome.  It was the first battle, and damn it I would WIN it!

I won.  Exactly 8 weeks to the day Ben was born, Benny latched on and drank a full meal and never looked back.  I was victorious!  I had beaten the odds!  My child, who was bottle spoiled in the NICU AND had Down syndrome, was latched on and drinking like a champ!  It was beautiful, it was amazing, and it was ... was ... freaking painful!  HOLY CRAP!  What in God's name was going on! I was in so much pain, it was ridiculous.  It literally took me until Benny was almost six months old before I, along with a LOT of help from lactation consultants, my OB, and some APNO, finally found our groove.  He was happy, I was happy, and suddenly nursing became easy.

Ever since then nursing him has been not only my own personal little triumph, but it has become something I look forward to.  It is OUR time.  I work full-time outside of the home, and I have an amazing Nanny that Benny loves, so coming home and nursing him feels like the ONE thing that I get, that is just me.  Nursing him is what reminds me that I am his Mama, and he has decided he doesn't want to do it anymore.

About a month ago, Ben has started going through a lot of changes.  He has become very mobile all of a sudden.  He's still not crawling, but he will and SOON.  He's butt scooting all over the place, trying like hell to pull himself up on anything and everything he can get his hands on, and generally just into everything.  He's starting to show likes and dislikes for things such as foods, drinks, and toys, and he has developed this wonderful little personality out of nowhere.  However, with all of these beautiful, amazing milestones, has come a strong frustration.  He has begun hitting himself in the head, pulling hair, scratching and pinching to the point of drawing blood on us, and biting. Oh...the biting.

I, to put it mildly, have been having a difficult time with this.  I have shed more tears than him i'm sure.  Rationally, I understand exactly where he is.  He's frustrated, he knows what he wants, but he doesn't know how to communicate it.  Emotionally, I am a mess.  I take every scratch, pinch, and bite personally.  I can't help it, it's just so upsetting.  Sometimes, he does it because he thinks it's funny, and that I can handle.  It's when he is upset with me that hurts the most.  My problem is that i'm scared to death and, first of all, am learning as I go here.  I don't know what parts of this are normal toddler behavior, and what parts are Down syndrome.  I don't know if this is nothing to worry about because all kids do it, and if this is the beginning of what could be my child wearing a helmet into his teenage years because i've never been able to break him of hitting himself in the head.  Yes, I know i'm crazy and am probably worrying myself over nothing, but I just can't help it.

So, this brings us to this past week.  On Monday, Benny decided that he was done nursing.  He decided to tell me this with two straight days of drawing blood on me by biting me, scratching me and pinching my face.  He went from this sweet baby that was cuddling and nursing his Mama on Sunday, to a Holy terror for the next two days.  I had a plan.  I was going to nurse him til he was 24 months old like the doctor said because that is what would help him.  He had another plan, and he was pulling rank.  I. Was. Devastated.

I was over the top stressed out, anxious, and just plain sad.  I cried so much this week, I had to blame allergy season on my puffy eyes.  My baby didn't want me anymore.  The ONE thing I have that makes me special, that makes me his Mama, was done.  It's over.  I no longer have anything that differentiates me from anyone else.  I will no longer have sweet baby cuddles with just him and I that make me feel like the luckiest Mama on the planet.

Those were my thoughts this week.  Yes, please, laugh your ass off at me.  I am well aware of how melodramatic that is, but unfortunately it's honest.  I went there, and I was wrong.

On Saturday morning, the beginning of Mother's Day weekend, I woke up to a sick baby and an even sicker husband.  All our plans for the weekend were cancelled and I went into nurse mode.  I gave Mark meds and a sippy cup filled with pineapple juice in bed.  Yes, Mark is my husband and, yes, I did give him a sippy cup...it was just convenient considering he couldn't sit up.  Don't Judge...  Side note: I so badly wanted to take a picture of this but didn't out of fear of retaliation.  Anyhow,  I cleaned out Ben's sinuses and loaded him up with Elderberry syrup and as many fluids as he would take.  Then...it happened.

I was lying in bed with my sick baby, and he began to play with my hair so sweetly.  He started giggling as I nuzzled his neck.  He was running his tiny, chubby, little hand up and down my face with no pinching or scratching at all.  He laid like this for hours while a movie played and just loved on me.  It was exactly what I needed.  In the midst of what seemed to be a horrible ending to an even worse week, my almost 2 year old gave me the best Mother's Day present I could have ever asked for. He reminded me that nursing him is not what makes me his Mama.  He reminded me that giving birth to him is not what made me his Mama.  He showed me that all the battles I win and the battles I lose are not what make me his Mama.  Ben reminded ME
that the unending love that I have for him, and that he has for me, even when things are so difficult I don't want to get out of bed, are exactly what makes me special.  Unconditional love is what makes me his Mama, and nothing will take that away.

On Mother's Day, I hope that each and every one of you remembers that.  It's not whether or not you gave birth, or nursing, or choice of formula that makes you a Mama.  It's not your choice to stay home, your choice to go back to work, or how long you pumped for that validates you as a Mama. It's not your wins or your losses.  It's not your guilt or your feelings of inadequacy that define you as a Mama.

It's just LOVE.  Love is what makes you special to them, because the love between a mother and child is the most magical thing on this earth.

Happy Mother's Day

7 Things About Me That Will Make You Feel Better About You

I like to give, so today I have a gift for you.  My gift is to tell you a few things about me that are absolutely sure to make you feel better about you.  I came up with 7 for today, but trust me, there are plenty more to come.

Here ya go!

1. My son is almost 21 months old, and I still struggle with changing a mutha scratchin diaper.  I mean, come on!  That's like the most basic thing you do as a Mom, right!  I get peed on or I get shit everywhere ( and I mean literal shit ) and have to drop everything to give him a bath and do a load of laundry.  I just plain struggle with holding the damn baby still while I handle the diaper changing process.  Sometimes, I can't find the sticky things for the side, because I didn't put the diaper under him right, or perhaps I pulled it too high in the back or too high in the front.  From time to time... I even put the thing down backwards.  This is basic... BASIC... and I struggle with it.  It's ridiculous.  I am ashamed. 
2. I once forgot to feed Ben dinner.  Yup, you read that right.  I flipping forgot to feed my baby!  It was Thanksgiving.  I was cooking sweet potatoes all morning and Ben was a teething mess.  On the way to my grandparents, my husband opened the back door of the car to grab something during a convenience store stop and BAM went the sweet potatoes all over 7-11's parking lot.  A ridiculous fight then ensued between Mark and I, I was a complete ball of stress at Thanksgiving, and Ben was continuously getting fussier and fussier.  Once he went into complete meltdown state, it had hit me that I had FORGOTTEN to freaking feed him.  He was, at this point, almost 3 hours late for lunch.  I am the worst mother in the history of maternal faux pas.  Who the eff forgets to feed their (at the time) 15 month old?  This girl does.  
3. I bit my tongue, the MIDDLE of my tongue, so hard about a month or two ago that it still hasn't healed.  I literally have a flap on my tongue now.  I'm not kidding.  How?  Great freaking question!  HOW THE HELL DOES SOMEONE BITE THE MIDDLE OF THEIR OWN TONGUE?!?!  Apparently eating dinner, feeding Ben, and attempting to talk to my husband all at the same time is just too much for this genius.
4. I went to work with poop on my shirt once and didn't notice until I was home later that night.  If you are wondering how...see #1.  Ok!  GEEZ!  I'm lying!!!  It was twice...
5. A few months ago, while on a roadtrip to Canada, I had to stop at a rest stop with Ben due to a major car accident.  I had no high chair or anywhere safe for Ben to eat and he was hungry (no I didn't FORGET this time, there was a goshdarn car accident!).  Since I had no place safe, I improvised.  I used my Moby Wrap to tie him to the back of a chair in the dining area and fed him that way.  I am pretty sure there was more than one person who casually acted as though they were looking at their phone and took a picture of the crazy American lady that tied her happy little boy to a chair to feed him.  Whatever...I thought it was clever.  Looking back, I probably should have fed him in the car.
6. For the first 7-8 months of Benjamin's life, I mispronounced and misspelled his diagnosis.  Ben has Trisomy 21.  I, however, told everyone he had Trisonomy 21.  Where the EFF did I get "trisonomy"?  WHAT is wrong with me?!?!  It's a whole made up word!  I added a whole ono in there.  Awesome...  I'm clever.  Nice Job Jamie Renee...
7. I once got so competitive and uber excited during a work scavenger hunt, I tore two tendons in my ankle running after a potential clue.  I was in my position for all of two months at that point, yet (since we were in downtown Columbus, OH and there was no access for cars where we were) my boss's boss had to CARRY me for about three blocks.  That...wasn't embarrassing at all.   Oh...side note...that's the same meeting I asked, in front of about 200 people, what ROI stood for.  I'd like to think I left a lasting impression...

Well, there ya go!  If you don't feel better about yourself and your own faults yet, just keeping reading my blog! I am certain I can help you out. :)

As Love Evolves

Sometimes, when i'm lucky enough, I find myself at the exact right place at the exact right time for the world to show me something so beautiful that it sticks with me for always.

If you've never been to the fishing town of Leland, in Northern Michigan, then you are missing out on one of the few places i've been where I am absolutely sure magic still exists.  I don't know if I could tell you why, but there is an ethereal aura in this town that made me feel as though I belonged there.  I felt like I was in a dream that I didn't want to wake up from.

Mark and I were walking around the shore where all the old fishing shanties were turned into shops selling homemade novelties of all sorts to the tourists.  We split up at some point, and I found myself wandering into a clothing shop filled with an array of bohemian styled items that all seemed to scream my name.  Inside this shop were two young girls.  They were both so beautiful in the way they held themselves.  You could tell, just by looking at them, that neither had ever had their heart's broken before.  They were sisters, I assumed.  Each had shelled necklaces and sandy blonde hair that looked as if it worshipped the sun at every chance.  They had Taylor Swift's song, Fifteen, playing loudly over the speakers in the store.  The younger of the two girls was twirling through the racks of clothes as she hung up loose items, sashaying with the occasional hanger as she worked. As she sang the lyrics out loud you could hear her thoughts between every word shouting to the world that she simply could not wait until the day finally came that she would fall in love.  It made me smile inside so brightly and with such longing remembering exactly what it felt like to be that girl, to be that innocent, to be that open.

Her sister, the older of the two, was working the register.  She was also singing the words out loud in a beautiful voice, and she too had a story she was telling between the words she was singing, but hers was very different.  She was in love.  Every muscle on her face gave it away with that look that any woman whom has loved someone before would know.  She was in love, and she just knew it would last for all time.  This too made me nostalgic, for who doesn't remember how delightfully consuming it feels when falling in love for the first time?  I know I do.  I remember it well.

"Cause when you're fifteen, and someone tells you they love you, you're gonna believe them..."

The energy the two girls were omitting was so positive and so delightful that I found myself deep in thought for the rest of the day.  Isn't is so beautiful how love evolves throughout your life??  Isn't is so devastatingly breathtaking how we think we know what love is, something happens that burns that understanding down to nothing but ambers, leaving an even more beautiful understanding in it's place rising from the ashes?

When you are a small child, your understanding of love is completely selfish.  Most of us first experience it as the love we have for our parents and family.  We love them because they are our caregivers.  We love them because they protect us, love us, care for us, feed us, etc.  We love them because we need them, and that's ok.  We know nothing at this point of what that same love means to our family, our Dads, our Moms.

As you grow into adolescence, you begin to think of love in more of a romantic light.  As a girl, you dream of love, like the young girl in the shop that day.  Your ideas of love are so pure, honest, and full of hope.  You ideas of love are based on the parts of relationships you are allowed to see in your every day life, such as your parent's relationship.  They are based on movies, fairy tales, and TV. Your understanding of love has nothing to do with feeling, but of observation.

Then it happens.  Your first love, followed inevitably by your first heartbreak.  It's as though you've taken your first breath of oxygen only to have the wind knocked out of you before you can exhale on your own.  All your ideas of what love is or can be are shattered.  The fairy tales are thrown in the trash, and you think you can't go on.  You think you simply cannot live one more day without that person, with that person, on this roller coaster.  You are consumed, and it is crushing.

Then you move on...

You fall in and out of love a few more times, each time learning more about yourself.  You learn the art of compromise.  You learn that no one is perfect.  You learn that lust is love's evil twin and eventually start being able to tell the two apart.  You re-write your understanding.

Then you find the one...

You get married to the one person that you finally decide can make you happy for the rest of your life, and it's beautiful!!  It's magical!  However, you missed something when you were figuring it all out.  You missed one very, VERY important lesson.  You missed the part where someone else can never make you happy.  You are now learning that the only person that truly dictates your happiness... is you.  Your understanding of love comes crashing down around you in flames once again.  If this person cannot make YOU happy, then what is marriage?!!?  What is this!  Why are we...

Then it hits you.

Another rewrite of your understanding of love begins to piece together.  You must LOVE yourself.   And that person, that person you loved and married...well loving them has nothing to do with how happy they are going to make you...because they don't control that.  You do.  Loving them is something much more difficult.  Much more selfless.  Loving them means wanting to give yourself to them expecting nothing in return more than for them to continue being...them.

You hit this understanding...and then (at least in my experience) there is a peace.  There is a new bond formed better than any you ever thought possible.

Then it changes on you...one more time.

You have this whole love thing figured out FINALLY, and then you have a child.

You're back at the beginning.  You are back at the pure, the honest, untainted love of your adolescence ... but it's more than that.  It is every single definition of love you've ever experienced, and then some.  It is all consuming, it is selfless, it is terrifying, and it suddenly makes sense.  You understand, for the first time, what it feels like to truly love expecting nothing in return.

I had Benny with me in that shop that day.  As I held him, and felt the energy around me omitting from the two lovely ladies, I wanted so badly to let them in on the secrets I have learned so as to potentially protect them from all the heartbreaking between where they are and where I am.  I wanted to let them know that that all of those emotions and tears they will experience have a purpose, a vision.  I just wanted them to know that it will be hard, but it will be worth it.

I walked back out of that shop with a smile on my face and a swelled up heart.  I am so blessed to have known love on so many levels in my life, but I am even more blessed to know it as I have it today.  I am thankful for each and every heartbreak, each and every lesson, and each and every understanding along the way.

As I walked back to my car with my husband and child, I softly sang to myself...

"And when your fifteen, don't forget to love before you fall
I've found time can heal most anything
And you just might find who you're supposed to be
I didn't know who I was supposed to be
at Fifteen"

Dear Down Syndrome,

The Mighty has asked everyone to write a letter to the specific disability or disease that you or a loved one is living with.  Here is my letter to Down syndrome:


Dear Down Syndrome,

I am writing you a letter, to say Thank You.

I want to thank you, first of all, for giving me the scare of my life that turned out to be not so scary after all.  When I found out that, upon Benjamin's birth,  you were going to be a permanent part of my life as well

, I was terrified.  However, you are like the best haunted house i've ever been to.  You scared the crap out of me, made me question every action I had ever taken to get to where I was at that very moment, and then came out from behind the scary black wall to give me a hug and say, "I was just messing with you, don't be scared!"  You were like the terrifying horror flick that has a surprising twist at the end that turned into the feel-good hit of the summer.  I love a good scare, so for that, I say "Thank You".

Thank you for the awareness and clarity you have brought into my soul.  Down syndrome, before you were in my life I didn't know what it truly mean to be aware.  It's true, like so many say, that I never did anything intentionally to hurt others, but hurt others I did.  I used words, and phrases that made others feel less than without realizing I was doing it.  I judged others and situations without truly understanding what it was that they were going through.  Thank you for opening up my my mind, my heart, and my soul to truly begin seeing myself and others with a new truth.  Thank you for leading me down a path to a person who, today, is very aware of the words she uses, the path of the people she sees, and the beauty that is the world around her.  I am still not perfect, but with you by my side I know that I will continue to walk this path becoming more aware every single day.

Thank you, Down syndrome, for my friends.  Because of you I have met so many amazing new people!  I have met Mamas and Daddies from all over the world whose lives have been blessed by you and they are an inspiration!  Thank you for leading me to this community of hope and love that has been my rock through every hurdle Benny and I encounter.  I can't imagine going through life and not knowing about all the wonderful people and the wonderful things they do to educate the world about you.

Thank you for making me smarter.  Thank you for making me be super diligent, something I never was before for myself, about what I cook, what products I buy, how much exercise we get.  I am better at paying attention to what goes on at the doctor, understanding medical terminology, and knowing warning signs of thyroid issues.  I am smarter, which makes me a better Mama, and I thank you.

Thank You, most of all, for every single way in which you make my Benjamin different.  Thank you for his beautiful eyes, his super-flexibility, and his cute little simian crease.  Thank you for giving me the opportunity, that most parents pray for, to keep my baby a baby just a little bit longer than most. Thank you for the extended nursing time I probably wouldn't have had without you.  Thank you for the slow progression into knowing what it's like to have a baby "get into things" and allowing me to just enjoy sitting and playing with him on the floor. Thank you for being a part of my Benny because he is just perfect, and without you he wouldn't be him.

Love Always,

Jamie Freeman

Benjamin's Loving Mama & Down syndrome's Biggest Fan

Why Do They Stare and Do I Care?

I'm going to start this post by admitting that I, Jamie Renee Freeman, have never, EVER shied away from attention.  EVER.  I did theatre and some other acting for most of my life and loved the spotlight more than I sometimes care to admit.  Sigh...  We all have our flaws, right? :)

This being said, I don't always know how I feel about attention aimed at Benny.  On one hand my proud Mama self thinks, "YES, my baby is adorable and I know it!!!"  Then there's that other hand...the less optimistic hand....that thinks, "Are you staring because you think there's something up with him?".

Saturday, my husband and I took Ben to Panera for lunch while we were out.  For those of you that have met Benny in person, you know that he is just one happy dude.  He is VERY happy, but not necessarily quiet.  He draws a LOT of attention!  Anyhow, we were sitting smack dab in the middle of Panera eating our lunch.  Ben was happily making noises here and there squealing and giggling, but mostly just allowing Mama to stuff his face.  Boy likes to eat, and he was a BIG fan of the turkey chili!  All the time we were there, I just couldn't help but notice the massive amount of people that would just stare at him.  Like, REALLY stare, for a long period of time, and keep looking back again and again.

It all started when we first got there and I took him to the bathroom.  There was one lady we passed that did a double take on us as we walked by her.  That one kind of caught my attention, but I didn't really think too much of it.

Then, on our way back from the bathroom, she was staring again.  She continued to stare off an on at us throughout the entire time she was there.  We outlasted just about everyone, as Ben takes an extremely long time to eat now that we are in the world of big boy food.

Throughout the course of our lunch, there were many folks staring.  There were too little elder ladies that would stare, talk, stare again.  A mom with her kids just in front of me would look, smile, look away, then look again.  Two other families that came in and left that were kiddie corner to us that kept staring and smiling...you get the drift.

My immediate feeling when I see people staring is pride.  I see people staring and smiling at Ben, and my chest wells up with Mama pride because I just KNOW they are staring because he's the cutest thing in there.  I just KNOW they are getting a kick out of him smiling at me during his wide open-mouthed chewing as I open and close my mouth saying, "CHEW CHEW CHEW BENNY!".  I just KNOW that when he claps after every bite they are melting just like I do at the sheer adorableness that is my son.

I just KNOW!  I just...know.  I just... I....  I don't know...

Then the doubt creeps in.  "Are they staring at Benny because he's cute?  Do all babies get stared at like this?  They've been staring a LONG time!  They're staring because he's different aren't they? They are staring because they know something is different, and they perhaps can't quite put their finger on what."

This is what happens in my mind.  I don't know why.  I REALLY don't.

However, here's the funny thing.  I don't care.  I REALLY don't.  If that's why they are staring, then stare away!  Whatever...go on with your bad selves!  Don't get me wrong... I notice.  I note it in my head, but then I simply move on.  I need to be aware of things for Benny, but at the same time I just plain ol' don't give a crap.

The truth is, that regardless of why they are looking, they are looking at Ben.  They are looking at Ben because he has captured their attention with his magnetic personality.  They are looking at Ben and they are seeing a healthy, happy, BEAUTIFUL baby boy!  They are seeing a happy family eating lunch with that beautiful baby boy.  They are seeing a very important truth that I hope to one day show to the whole world.  That truth is that Benny is the best damn thing that could have ever happened to Mark and I.  The truth is that Down syndrome is not a curse.  It is not a burden.  It is NOT the end of your lives.  Most of all, it is definitely not a situation that requires any type of pity.

So, if you were in Panera the other day and saw that happy family eating (loudly) in the middle of the dining area, I hope that Benny put a smile on your face.  If you were trying to figure out if he was different, he most certainly is.  You'd have to be the best kind of different to capture the attention of an entire restaurant and leave most of them walking away happier than when they came in.

The Diary Read Round The World

I remember it like it was yesterday...

I was lying in bed having one of those nights where my brain wouldn't shut off, and a thought occurred to me.  I wondered why I didn't write in my journal anymore.  I always kept a diary.  I have diaries from as far back as elementary school.  I write my deepest, darkest, and brightest thoughts in them and they have each in their own way become a friend to me in the time that I needed them.

I then thought about my blog.  This blog...  I thought about how cathartic it has been to share my thoughts and feelings with those I care about and a few thousand complete strangers as well.  I thought about all the "friends" I had made thus far that have blogs and Facebook pages and twitter accounts as well and how each and every one is brave enough to share their story.

I thought, and I thought, and I....BAM!  It hit me...

What if I could have the honesty of a handwritten diary that culminates a whole beautiful mess of people who have one thing in common?

What if this book could travel around the world, being handwritten in by mamas, daddies, brothers, sisters, you name it that all have a loved one with Down syndrome?

What if, when this book was finished with it's journey, we could share our stories with those that are just beginning the journey?

Wouldn't that be something??

Well, my friends, it's more than something.  This book is real, and this book is beautiful.

What started as a nighttime thought has turned into a project that has done more for my soul than I could begin to explain.  This diary is currently with it's fifth writer, who also happens to be a photographer.  It is about to travel to it's 2nd country out of the four it will be visiting, and it is changing lives.

You see, I was really excited about this book being a catalyst to change the lives of those who are just receiving a diagnosis of Down syndrome, and I still am!  I am certain this book will make it's way into the hands of hundreds, hell THOUSANDS, that need it!

But...

What I didn't expect...what I didn't realize was going to happen in the process...was something even more extraordinary.

What is happening is that this book has formed a bond between, so far, 25 people that will be writing in it.  This book has unified a group of advocates, forming friendships, that I am pretty damn sure will be connected for life after this.

This book is better than a support group.  This book, these writers, are slowly one by one becoming family to me.

I started this book because I thought so many new parents would need it, and they do, but what I didn't realize...what I didn't expect...was how much I needed it.

Thanks to Kelly Searle from www.kellysearlephotography.com and the amazing photoshoot she did while having her turn with it.  Because of this, tonight, for the first time, I got a glimpse into what kind of beauty my friends were filling this diary with, and I lost it.  I read a few lines from the picture just below, and I haven't stopped crying since. This diary will be put into the hands of those who need it, but I think it's higher purpose has begun to be revealed.  It's higher purpose is bringing together those of us that didn't realize how badly we needed one another.

I hope you will continue to follow with us along the path of The Down Syndrome Diary as it travels around the world from home to loving home.  Find us at www.facebook.com/thedownsyndromediary

Tell Your Story...

Your ending may change someone else's beginning.

Those of you that are already a part of this with me, you have already changed me.



Jamie