Thursday, November 21, 2013


In the first year of a baby's life, there are a TON of milestones they are supposed to hit.  There are things like rolling over, following sounds with their eyes, picking up toys, and the list goes on and on.  These  milestones are important parts of a baby's development and are a good indicator of potential developmental delays.  Ever since we found out that Benny was rockin' an extra chromosome, we have been told how he will most likely be a little slower hitting these milestones.  This, honestly, has never bothered me with the exception of a few moments I experienced recently.  I'll get to that in a minute...

When the doctors at the hospital starting talking about Benny's potential developmental delays with Mark and I, it was pretty flipping hilarious if you ask me.  The doctor told us very delicately that Ben would probably not walk until he was at least two years of age.  Mark and I, true to our nature, started laughing.  We immediately knew what the other was laughing about, but the doctor had no clue.  Mark then spoke up and said, "We have no clue whatsoever when a baby is supposed to start walking, so we would have never known the difference until someone told us!"  

I am the baby of my family, and Mark and his siblings are very close in age.  For this reason, neither one of us has ever spent any significant time around babies.  As a matter of fact, Ben is the first newborn baby Mark has ever held.  I think that's pretty dang special.  Take all this into account, and the fact that Ben is our first child, and you can understand why we don't know much about the milestones of small children.  To be honest, we don't know much about babies or kids at all!  We definitely know more now that we did three and a half months ago, but we are still pretty ignorant. 

Anyway, we went to meet with the doctor that will be Benny's Down Syndrome specialist for the first time this week.  She went through a lot of information with us, and most of it was about...once again...milestones.  We got all good news throughout the appointment.  She obviously can't tell much at this point, but what she could tell was very positive. Benny is a healthy little man!!  However, once we got our paperwork at the end of the appointment I noticed it said "severe hypotonia" under his diagnosis.  Hypotonia is a fancy name for low muscle tone, which is the norm for babies with Down Syndrome.  Now, I already knew this but for some reason it sent me back to something that happened a few weeks before.

I have a few friends that had babies right around the same time I had Ben.  My best friend's little girl, Addison, is almost exactly a month older than Ben.
Miss Addison and Benny

 I was playing with her and I couldn't help but notice how solid she was.  She's holding her head up all by herself with almost full control!  Now, this worried me for a moment because Ben can't hold his head up much at all yet, but Addison is a month older so I shrugged it off.  Then, the next day, we were hanging out at Mark's buddy's house.  Him and his wife had just had a baby girl, Viviana, two weeks before Ben.  First of all, these little girls are way too cute and I totally have bow envy.  I might have to put one or two on Ben when Mark's not looking!!  Anyhow, I digress.  While playing with Viviana I realized how much stronger than Ben she was as well.  This, was my moment.  I had heard from so many people, so many times about how Ben was going to be a little slower hitting these milestones.  Hearing it, however, is very different from when you actually notice it.

Viviana and Benny
It's not like I had a breakdown and starting screaming "WHY GOD, WHY?!!?" at the ceiling or anything, but I did have a moment.  It just kind of gave me a lump in my throat.  My son will be behind other kids.  He will be...slower.  I don't know why it hit me funny, but it just did.

Looking at that page that said, "Severe Hypotonia",  I suddenly remembered that feeling I had holding Vivi.  It wasn't a scared feeling, or a sad feeling per se, it just was a realization.  Ok, maybe a little scared, but definitely not sad.  You see, I am at an amazing place in my life right now.  Ben's diagnosis doesn't bother me anymore.  It hasn't since before I had him.  However, sometimes I think that might possibly be because he hasn't been any different yet.  He's just been the sweetest, calmest, cutest, most precious baby ever!  I am so not biased...

The next week after the specialist appointment, we had a visit from Ben's physical therapist for the first time.  She brought to our attention, as I had started to suspect, that he was favoring his left side and was starting to get an uneven head.  Ugh...  This, of course, sparked a bunch of questions from me.  It's weird though how people avoid my questions sometimes.  I keep asking people how he is doing with holding his head up as compared to where he is "supposed" to be, and nobody really gives me a straight answer.  This unfortunately scares the crap out of me and makes me think it's really bad and nobody has the heart to tell me.  Once again....I had a moment.

It's almost as if I keep experiencing a manic depressive reaction to Ben's diagnosis.  I go for a really long time on an extreme high, and then something scares the crap out of me and I hit a low for a...well...moment.  I never, ever feel the whole "why me" thing, or feel bad about the fact that he has Down Syndrome.  I just get scared that I am going to do something wrong that keeps him from reaching his potential.  I am terrified that, because I don't know much about kids, he is going to miss a milestone and I am going to have no idea.  I am petrified about the possibility of failing him.

I always thought, before getting pregnant, that if I ever got the diagnosis that my child had a birth defect  my life would be ruined.  It's quite the opposite actually.  I, and I mean this, honestly feel lucky that I get to raise Ben.  I feel like I hit the lottery by Ben having Down Syndrome because there are so many more ups to it than downs (no pun intended).  My life isn't even close to ruined because of this, it has been transformed in the most positive way.  For this reason, my fears aren't about him.  My fears, or my moments, are about me.  Am I going to be able to give him everything he needs to reach his full potential?  Am I going to be able to handle it well when I realize that his full potential is different than his peers?  It seems, as a mama, that I am going to have a lot of milestones that I have to work towards as well.  The only thing I know for sure I am doing right is loving him.  That milestone has a big, huge double check with a line of gold stars! 

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Would love to hear your thought, comments, advice, or emotional outbursts!

-xoxo Jamie