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.
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
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 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.
