Friday, July 29, 2016

Learning What "Normal" Looks Like

A few weeks back, at the whopping age of four months old, my beautiful little girl stuck her little tongue out and blew a raspberry at me.  She was imitating me blowing them at her and making my heart melt with that full out belly laugh she already has.  As I reveled and celebrated in this new milestone, I got a small lump in my throat.  This has been happening quite a bit...

I'll never forget the day we met Benny's early intervention team.  As they went through some information with us, they reluctantly informed us of some of the things that would be more difficult for Benny.

"He most likely won't walk until around 2, maybe 3 years old..."

Mark and I looked at each other, unfazed, and started cracking up.  This threw them off a little, so I quickly explained that we had no clue when a baby typically started walking, so this wasn't much of a shock to us.  Mark and I were completely baby illiterate.  We all had a good laugh at our expense and carried on.

This is how I spent the first two and a half years of Benny's life. I honestly didn't really understand how different his development was.  I thought I did, but I didn't.  I had the charts, I knew that he did things later on than most babies his age, but charts never fazed me.  I had friends who had kids within weeks of Benny, and seeing their development would make me take a step back for a moment, but then I would return home to our little bubble.

Then, on February 19th, 2016, at 9:03am, Ellie was born...and my bubble was popped.

It didn't take long for me to start noticing things were different with her.  I wasn't even closed up on the table after my C-Section when Ellie lifted her little head up off my chest to look around at the new world she had just arrived in.  She then scooted her beautiful little body over to perfectly latch on and feed to her little heart's content.  It was beautiful, and wonderful, and I had that lump in the back of my throat.  Benny didn't lift his head til he was around three months old.  Not at all.  He also didn't latch and nurse until the was eight weeks old.

For the next few days I started noticing more and more.  When I held Ellie she was firm.  She wriggled, and squirmed, and was just ... strong.  When you have a baby with Down syndrome, the doctor's use the term "floppy" often.  They told me Benny had "Severe Hypotonia" and that he was a very "Floppy" baby.  I always smiled in understanding when they told me this.  I totally got it...except I didn't.  I didn't understand what they meant until I had held Ellie for the first few hours of her life.  I started realizing that she didn't just melt into me the way Benny did.  Her arms and legs held strong and didn't just "flop" like Benny's did.  I call Benny "bug" to this day because he was such a little cuddle bug in the way that his little body molded right into mine.

It all kept happening...

There were certain things that I knew would happen earlier that were obvious, like when she began
rolling around at three months, but there were others I wasn't expecting.  When Ellie began babbling, she quickly progressed into making all sorts of sounds unlike anything I've ever heard Ben make.  Ellie, at five months, makes more sounds that Benny does at 3 years of age.  It made me think back to all the times I was asked on milestone questionaires, "What vowel/consonant sounds is Benny making?"  I would quickly answer with, "ALL KINDS!  He just babbles away!  He's a great talker!".  The problem was that he wasn't, but I had no idea.  No clue what "normal" was, so I thought he was doing great.

I don't really know why the lump forms.  I'm not sad about Benny's delays, because that is who Benny is.  Actually, I LOVE how much time I got to enjoy him being a newborn.  I LOVE how long it took before he wasn't just content being cuddled in my arms all day.  I think the lump forms because for the first time in his entire three years, I am being thrust into the light of knowing that my sweet boy is indeed very, very delayed.  I no longer live in my bubble.  I no longer only get pushed into the horrible pit of kid comparison on occasion, I have it happening right in front of my eye.

It's not sad, it's just a new understanding.  It humbles me, and makes me realize how little I still understand how brave my little boy is, and how it will always take him so much more effort to do things that will come easily to his little sister.

It makes me realize just how damn proud I am of him that he has come as far as he has now knowing exactly how hard it was for him.

I am in awe of his beautiful determination everyday.

I love you my little cuddle bug.


  1. I don't know what kind of comments you expect, but I am so taken up by the work you have done with your beautiful little boy. Don't doubt yourself-its obvious that God has blessed you by allowing you to have a beautiful little girl. Everyone needs both a girl & a boy. God chose you- love you, keep up your writing, very inspiringhoney. Aunt Marge

  2. I understand exactly what you mean about we don't see until we see. My sweet boy has a cousin that is just 3 months younger than he is and it has become very obvious the things that my Kellan is delayed in and also where his strengths are. My niece is crawling and pulling up and fully sitting up from a laying position while my sweet boy sits and watches her. The only time that I feel sad is when I watch him get frustrated with himself, which I see him do more now. He will be laying on his back and he will cry because he is no longer sitting up which is where he wants to be. I know I can't rescue him all the time that he needs to keep trying but it all seems to come so easy for my niece. I am very proud of Kellan his determination shows in his frustration, we have come so far in so many aspects and I understand what we take the ups with our downs.... But I wouldn't change him, his smile, his laugh and his sweet cuddles make life worth while. Our boys are such gifts. =)

  3. Amazing and fascinating article. Incredible things you've generally imparted to us. Much obliged. Simply keep making this kind out of post.

  4. You said it so well! Every parent of an "atypically" developing first child has felt like you when their "typical" child comes along. The one part that you left out (or maybe it's just me) is the guilt I felt enjoying my second baby so much.


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

-xoxo Jamie