Friday, March 21, 2014

Benny's 1st World Down Syndrome Day

Kind of ironic that almost EXACTLY one year ago today, Mark and I found out that Benny would most likely be born with Down Syndrome.  Funny how things work.

In honor of Benny's first World DS Day, I wanted to give a message to anyone out there that might be struggling with a pre or post-natal diagnosis.

Enjoy, but please excuse my high pitched voice!  LOL!

xoxoxo


Thursday, March 13, 2014

Happy Souls are Contagious

Tara from Happy Soul Project has asked me to guest blog and I couldn't be more honored!!!  So, in honor of Pip and the Happy Soul Project, here is my story about how one beautiful little girl brought back my smile. 

In November 2012, my husband and I FINALLY became pregnant with our first child.  We had been trying for years, to no avail.  We were ecstatic.  We didn't even wait to tell everyone, like they usually say you should.  We were in love with this little man even before we knew he was indeed a little man and not a little lady.  I don't think I stopped smiling from the moment those two little blue lines showed up until my 4 month appointment at the OB.  That's when the smiles stopped.

At that appointment my OB informed us that I had came back as high risk for Down Syndrome on my Quad Screen.  The next few weeks were filled with level 2 ultrasounds, blood tests, fears, and lots of crying.  We were terrified.  Finally, we got the final results back of the MaterniT21 test, and found out that there was a 99% chance Benjamin had Down Syndrome. 

The next two days are a blur.  My husband left work without saying a word to anyone he was leaving.  I crawled in bed and sobbed uncontrollably. I am embarrassed of the thoughts that were going through my head.  I didn't know anything about Down Syndrome.  My husband came home and crawled in bed with me.  We cried together til we finally fell asleep. 

The next few months were nothing but doctor's appointments and anxiety.  I started hearing all the horrible medical problems associated with Down Syndrome that the doctor's said Ben would have.  Every day I was more exhausted than the next.  All I wanted was a beautiful little baby.  I wanted to show him off.  I wanted people to coo over him, and instantly fall in love with him.  With all the horrible information I was being given, I felt like I was going to have this sick child that nobody would love but me.  The picture in my mind was nothing like the perfect child I had imagined dressing up and taking pictures of.  It was nothing like the child I imagined at all (This is so hard to type right now, because I don't think i've ever admitted that to myself or anyone else). 

Around 8-9 months pregnant, I decided to look up pictures of babies with Down Syndrome.  I just needed to see them.  I needed to know.  Enter Pip...



One of the first pictures that came up when I searched for babies with Down Syndrome in Google was of Pip's smiling face.  I will NEVER forget that first picture.  She was wearing nothing but her diaper, with the biggest, most precious smile I had ever seen on her beautiful little face.  She wasn't a baby with down syndrome.  She was a gorgeous, smiling little light that instantly brought me to tears!  I am crying now just typing this.  I felt better and ashamed all at the same time.  I was ashamed that I thought Down Syndrome would define Ben.  I was ashamed that I thought it would make him less than anything.  I was ashamed that I thought having a baby with Down Syndrome was anything less than beautiful.  I looked at Pip and my favorite emotion of laughter through tears came pouring out of me like never before.  I instantly began cyber-stalking Happy Soul Project.  Every picture I looked at made me me feel stronger and stronger.  Every smile on Pip made me realize how amazingly lucky I was to have been blessed with a child that has even an ounce of the beauty Pip has in her.  Pip made my smiles come back...



The day I had Ben wasn't a sad day.  It was the best day of my life!  I was ready for my baby boy!  I was excited to bring him into the world and COULD NOT WAIT to show him off!  He was and still is the most beautiful thing I have ever laid eyes on.  There was no fear, there was just love. 






Not only was I excited for him because of Pip's pictures, but I was also ready for him because of the information I read in Happy Soul Project.  Reading about Tara's struggles with Pip helped me prepare myself for what was to come with Ben.  I knew I could handle it because I gained strength and knowledge from Tara's stories.  Yes, I can get information on Down Syndrome from a lot of sites; however hearing about it from a fellow mama that has been there before me is much more helpful that a bunch of statistics.  It just helps your soul...






Today, I have started my own blog titled "Ben Through It All".  I know how much Pip and Happy Soul Project helped me, and I want to do that for someone else.  Getting that diagnosis is so difficult, but I thank God every day for that first picture of Pip.

Tara, thank you.  You have no idea how much what you do can heal someone else.  Your words and your pictures saved me from spiraling into a very dark place.  You gave me hope, and that, my friend, is something not just anyone can give.  I can't wait til the day Benny gets to work some of his charm on sweet Pip.  God help him if Noal is around... XOXO













*All Professional Newborn and Maternity shots by Angela Hibbert Photography

34

What. A. Year.

This past Monday, I turned 34 years old.  Holy Crap, how did that happen?

I am a lucky girl though.  I can honestly say that I am extremely happy with what I have done with my life up until this point.  I love my life.  I love my family.  I am truly blessed.

My 34th birthday brings back a lot of emotions about my 33rd birthday.  My 33rd birthday was slightly less celebratory than this one.

My birthday is March 10th.  On March 11th, 2013, Mark and I found out that there was a slight possibility that our baby had Down Syndrome.  The next week, there was a lot of denial.  There was a lot of research, and there was a lot of praying.

There were a couple of things which I still find fascinating.  The day I went in to take the test to find out whether or not Ben did indeed have Down Syndrome, I saw something.  I walked into the office at the hospital where they were going to draw my blood, and there was a Mama about my age waiting patiently with her little boy whom had Down Syndrome.  This was, literally, right after getting my first of many Level 2 Ultrasounds.  This was the waiting room where I was waiting to get my blood drawn to find out if my little boy also had Down Syndrome.  Her little boy was about three years of age with blond hair and blue eyes.  He was a sweet little thing, but I feel horrible because as adorable as he was, seeing him at that moment brought me to tears.  I wish so strongly that I could go back to that moment and see him differently.  Instead of seeing that beautiful little boy, I saw all my ignorance and fears about a syndrome I was about to become very familiar with myself.  I still feel ashamed for that.  I feel like I am getting stabbed in the stomach when I think that someone, probably more than just one, will look at Ben through eyes of ignorance and fear someday.   This wasn't a pediatric unit or a Down Syndrome unit I was at in the hospital.  It was just the lab and nothing more.  I sometimes wonder if God put that mama and her sweet little man in there to help me in some way and I misread the sign.  I let my fears disguise the beauty and the kismet in that situation.

A few days later, before getting the results back, we closed on our house in Dearborn.  The same day  we closed, I had to go to Nashville for work.  My amazing husband immediately began going about the task of de-catting (getting rid of everything in that house with cat hair on it because I am deathly allergic) our new home.  While removing the carpet from the finished attic, Mark found a picture of a teenage boy with Down Syndrome.  His name, as was written on the back, was Mark.

Despite these two highly coincidental occurrences, I slowly began putting myself into some serious denial about Ben's potential diagnosis.  They saw nothing at all in the ultrasound that led them to believe he had Down Syndrome, so I was positive that the results were going to come back negative.  Exactly one week after going in for the test, one week after my birthday, I posted this on Facebook:


Literally moments after this post, on March 18th, 2013, I got the call to let me know that my Benjamin did indeed have Down Syndrome.  I have already described that moment here.

Three days later, on March 21st (3/21 for 3 21st Chromosomes), it was National Down Syndrome Day.  Down Syndrome was everywhere, and could not be ignored.  March 2013 was a rough month for me. My self-preservation method of burying the thing that was stressing me out was becoming very, very difficult.




March 2014 was much different.  MUCH, much different...

I celebrated my blessed life with my friends out painting and drinking the night away and I got a Lamborgini from my husband (hot wheels style)!  I had a blast!  On my actual birthday, I took half a day off of work and spent the rest of the day with just me and my little man.  I spent the entire day feeling so blessed I almost burst.

It's so funny how something can seem so devastating at one point in your life, and turn out to be such a blessing later on.  I wouldn't change a damn thing about Benjamin.  Not one damn chromosome!  I wouldn't change anything about my life right now.





My Facebook update from March 18th was ironic in a way.  Later that same day, I thought I had been wrong about 33 being an amazing year.  Turns out, I was dead on.  33 was, hands down, the most amazing and beautiful year of my life.  Bring it on 34!  You have some big shoes to fill!



I Forgot to Watch the Oscars...

I know, I know...

Forgetting to watch the Academy Awards is something that most people I know do on purpose, yet I LOVE watching them!  I've done community theatre my entire life, so watching the Oscar's is to me what watching the Grammys is to a musician.  It is my art, and winning an Academy Award is the highest honor for artists like myself.  Don't get me wrong, i'm not delusional.  Well, not about that anyway!  I know I will never win an Academy Award! I just like to watch all the people who do!  I love to look at the clothes and the dates.  I LOVE hearing their acceptance speeches!  It's just all so thrilling to me!  However, this Sunday, I completely forgot they were on...

I decided, after a long talk with Ben's specialist, that I would make my own baby food.  If this sounds insane to you, then you are not alone.  It sounded insane to me as well before I found myself in this situation.  Of course, a lot of things moms do that seemed insane to me prior to Ben being born, seem perfectly normal now.

Ben, as you already know if you have read my blog, has Down Syndrome.  Along with Down Syndrome, you often times get a finicky digestive system.  Babies with Down Syndrome have low muscle tone problems.  What most people, including myself prior to having Ben, don't realize is that low muscle tone is a much bigger problem than you would think.  We aren't just talking about legs, arms, and core here.  Your digestive system is a series of muscles too.  So, being that those muscles are also weaker, our poor babies with an extra chromosome have a little trouble digesting food.  Ben, is definitely one of them.  If you have ever been around my sweet little guy, you will know he has some seriously stinky farts.  I mean, clear an entire concert hall not just a room type of farts!  They are toxic!  Luckily for him, he comes by it honestly.  Our family happens to think farts are hilarious, and poop conversations are the norm.  We all have digestive issues in my family, so poor little Benny had no chance.

Because of all these digestive issues, making my own baby food came highly recommended.  We wanted Ben's first solids to be made using only my breastmilk (which he was used to) and whole foods.  Therefore, on Sunday night, I set about making a batch of Sweet Potatoes a la Jamie.  It was super easy!  I made an entire week's worth of baby food in just a few hours.  It probably would have taken me WAY less time than that, but I also had to figure out my brand new immersion blender as I was using it for the first time (Side NOTE: Mamas making your own baby food - Immersion blender comes HIGHLY recommended!  Work unbelievably well, it's quick, and...the big win for me...it's super freakin' easy to clean!).  I was having so much fun making all these cute little cups of food!  When I was done, I have to admit, I felt a little bit like a bad ass!  I mean, who would have thought that I, Jamie Renee Freeman, would be making my own baby food?  The best part is that it was super easy!  WOO HOO!

After feeling pretty darn proud of myself, I sat down on the couch to pump and have a nice, hot cup of tea.  I turned on the television, and BAM!  There's my favorite gal Ellen hosting the Oscars.  WHAT?!?  I couldn't believe I forgot about it!  I mean, heck, there was only an hour left!  I was so amazed.  For a second, I was highly disappointed, but then I laughed.  This was a perfect example of the point I had been making to so many of my friends lately.  So many people have asked me, "What it is like to be a mother.  What was it like when Ben was handed to me?".  My answer every time has been the same.

When that baby is handed to you, and you look at him for the first time, there are two incredible things that happen.  First, for me anyhow, you see God for the first time.  I mean REALLY see God.  You get this feeling of understanding and purpose for why you have been blessed with this amazing life.  It is incredible.  Second, it is as though somebody hits the shuffle button on your internal list of priorities.  It was as if everything I EVER thought was important in my life became less than.  There were so many things such as traveling to certain parts of the world, playing certain roles on stage, career aspirations, and personal development endeavors that I had always felt that I NEEDED to accomplish before I died in order to feel I had a fulfilling life.  There were so many things that I felt needed my utmost attention above all else on a daily basis.  ALL of these things, were suddenly not as important.  Suddenly, I realized if I sat on my deathbed and had never been to Ireland, never became the CEO of a company, never got my PHD, or never spent Oktoberfest in Germany, I wouldn't mind.  Don't get me wrong, I would still love to do all this things, but if I don't, I am still fulfilled.  When that baby was handed to me, HE became my priority.  He changed everything about everything I ever thought was important, and that was more than ok.

Back to the Oscars.  As I was sitting on my couch that night, smiling at the fact that I had forgot the Academy Awards were on, I thought about that feeling.  I thought about the shuffle button that was pushed on my priorities and I laughed.  It's amazing how one little dude changed everything I ever thought I knew about myself in an instant.  I forgot to Watch the Oscars, and I couldn't have cared less.  Also, I would be able to watch all the good parts on YouTube the next day anyhow! ;)

Not Enough

Seriously, Mama?
I feel like everything in life is a complete failure if I don't do it perfectly.  Yes, this is quite a melodramatic way of looking at things, but that's just me.  If I do 17 loads of laundry, but the 18th is left on the floor, I feel as though I failed at laundry.  If I clean my entire house, but the floors go un-mopped, I feel as though I have failed at cleaning my house.  If I get insane accolades at work on 5 projects, but get feedback that the 6th was just ok, I feel as though I am failing at my job.  I am sure you get the point by now.  It's insanity, really, this complex that I have.  It's because I never get a sense of fulfillment, unless the job is COMPLETELY finished.  If one part goes unfinished, or is not up to par, I feel like a failure.   However, no amount of beating up myself about inadequacies at work, as a wife, or as a homemaker can even hold a candle to how I beat myself up about whether or not I am being the best mother I can be.  I think the best describe where I am with that will be to explain where I started.

About two bottles of wine into a tired night in a hotel, I made a confession to my best friend Ramie, my sister Tami, and friend Shannon.  We were on an east coast road trip and, after a very wild night in P-Town, were taking it easy and staying in at a hotel just outside Martha's Vineyard.  (Side note... Martha's Vineyard has no wine.  NO alcohol at all!  It is a dry island.  Who the crap knew?!?!) We were all getting kind of deep talking about everything from the meaning of life to whether or not we REALLY saw a naked man dancing with rainbow butterfly wings the night before, or if it was just a mass hallucination brought on by way too much tequila.  Amidst this conversation, we began talking about having children.  This was few years back, and none of us had any children yet.  Shannon and Tami were certain that they never wanted kids, while Ramie and I were certain we both did.  This led to a barrage of questions going either way of why we either did or didn't want kids.  This is when I made my confession.

 "I am terrified that I am going to suck at being a mother.  I have no motherly instinct at all!  I never baby-sat, I never even wanted to!  And, to tell the honest truth, I know I want kids but what if I have them and then realize I don't like them!?  What if I hate my kids?!?!"

Yes, my friends.  I actually said this, and I meant it.  I was terrified that I wouldn't like my kids once I had them.  NOW before you judge me, you have to understand something.  I know a LOT of people that, I am pretty sure, do not like their children.  I don't mean they are horrible people that hurt their kids or anything, but they literally seem as though their children ruined their lives!  They are miserable all of the time and just have no desire to even be around their own kids.  They, simply put, think their children are assholes.  Since I am a believer that you truly never know how you will act in any situation until you are actually in that situation, it seemed completely plausible that I could end of being one of those people!!  I was horribly terrified...

On August 5, 2013, I got my answer.  At exactly 9:33pm, Benjamin James Freeman came in to this world.  At that exact moment, something miraculous happened.  Every fear I had about being a mom disappeared.  Now, don't misunderstand here.  I repeat, every fear I had about being a mom completely disappeared because those fears were ridiculous and just plain stupid.  Now, I had a whole new slew of more rational and reasonable fears about being a mom!  Also, they weren't just hypothetical fears anymore.  Now, they were fears directly related to this little life that was in my arms that I instantly loved more than words could ever describe.  

Over the last seven months of Benjamin's amazing life, some of these fears have disappeared and others have hit me dead in the face.  I wonder on a regular basis whether or not I am enough for him.  I wonder if I am giving him enough of myself.  I wonder whether or not I spend too much time holding him, or not enough time holding him.  I worry whether or not I do his physical therapy exercises enough, and whether or not the things I am or am not doing are holding him back from hitting his milestones.  I fear things, and I worry about things, constantly all day, every day.  But...it's different.

These fears and worries, these feelings of inadequacy, they are all different than anything I have felt before.  It's ironic really, that the one thing in life that I know for certain I will fail at time and again somehow makes me happier than anything else I have ever experienced.  I will fail at being a mother, but I will also soar.  When I know I can't do all 18 loads of laundry, I often times blow it off.  When I can't clean my whole house, sometimes I don't clean anything at all.  With Ben, it's different.  I will give him everything I can every single day and never be enough, and I don't care.  With Ben, no matter how often I feel like I am not enough,  I get to look at him and realize that HE is enough.  You see, I beat myself up about being a good mom but I NEVER want to throw in the towel.  I don't feel a sense of fulfillment if I can't do ALL the laundry, but every second I spend with my little dude is more fulfilling than anything i've ever done before.  I may not be a perfect mom, but man do I enjoy every moment of trying!