For awhile I was obsessed with Down syndrome. The birth of The Blessing sparked in me a wild fire of curiosity and I spent many hours researching trisomy 21 with it’s many and varied complications, reading blogs written by mothers of children with Down syndrome, and requesting stacks and stacks of books from the library. My conversations were centered around The Blessing and her extra chromosome, my mind continuously mulled over the ramifications of it, and when I gazed at my tiny infant’s face, I wondered what she would have been like if she had been born “normal”.
But soon all of the information, emotion, and fear faded away, leaving only a gorgeous baby in my arms. She has started smiling, laughing, interacting with us just like a “normal” baby. She breastfeeds and gains weight, she grows and learns, she sleeps all night and smiles all day. I sort of started to forget her diagnosis except when in public (but that is another post) or when browsing my Facebook page (which is now subscribed to all sorts of Down syndrome related pages).
The other night was like any night. All of the kids were in bed asleep and it was quiet in the house as The Man surfed the web and I sat knitting on the couch. The Blessing had to be woken up to one last time that day, around 9:00 (or she will go too long between feedings), and so I put up my knitting and got her sweet, sleepy self out of her crib. She stretched and complained a little at being wakened, and then she curled into my chest and fell right back to sleep, as her sock fell off of her foot and onto the floor. I swooped down to pick it up as I walked out of the room.
I sat down on the couch and started to put her sock on her foot. And then I saw it. Now, I know her sweet little feet, so cute and tiny. And I have noticed her “sandal toe” before, many times, in fact. It was just that in that moment I had forgotten that she was my baby with Down syndrome. In that moment she was simply my baby. I looked at her itty bitty toes and pulled a little bit of lint out from between them. She stretched again and opened her eyes, squinting at me in the bright light. I saw afresh the shape of her eyes and felt a stab of sadness in my chest. And something else. Pity.
Right now, she knows only love. She knows our faces and our smiles. She hears the lullabies that The Princess sings to her. She feels the tight squeezes of The Munchkin’s hugs. She is continuously talked to, kissed, cuddled, sung to, and played with. She is surrounded by a cloud of happy people, people who don’t care (or don’t know) that she is different. She doesn’t know that she is different.
But someday she will.
When I think of my other children and their futures in this world, I have no doubt that they will be successful, liked, and happy. I see for them great accomplishment, independence, and joy. And, most of the time, when I think of The Blessing’s future, I think of the joy and sunshine she will bring (and has already brought) into our lives. I consider the options we have and the steps we must take to help her. I think about doing whatever it takes to ensure she gets every opportunity to succeed. And I have hope.
But that night, my heart swelled with pity for my little girl. Life will be harder for her, won’t it? She will encounter more prejudice and stupidity than her siblings will. She will have to work harder to get less. She will struggle with things that we take for granted. Her life will be very different than ours.
When I shared this with The Man he was quiet for a few minutes as he pondered my words. We both sat looking at our daughter who lay on the couch between us, kicking and smiling. I felt tears stinging my eyes as I processed the sadness that had welled up inside.
Finally, The Man said quietly, “We just have to enjoy this time that we have right now.”
So, I packed up my pity, picked up my baby and tickled her so that she wiggled and giggled and her eyes sparkled. And I enjoyed her.