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