Tuesday, September 20, 2011
don't compare them. don't compare them. don't compare them.
The first baby placed into my arms, making me a mother, has an extra chromosome. With that extra chromosome comes a lot of different labels, one of the harder ones to swallow being "mentally retarded"
She was my normal. She was all I knew. I rarely thought of the mental retardation label or how different her babyhood has been because to me, she was a genius- every act that she completed was appropriately celebrated- she was perfect and just the way she was meant to be.
Enter into my life a brand new baby. Carter. A very average, normal baby.
When he lifted his head off of my chest and stared me in the eye when he was only a couple of hours old, I almost had a heart attack. Babies can do that without months of therapy? When he flipped his strong body into a roll over for the first time last week, I was even more amazed. When I saw him scoot forward in his crib the other day, I shook my head and wondered what I had gotten myself into.
He has already "accomplished" more in his meager 2 weeks of life than Addison had in her first 6 months (he can breathe and eat...so he already had her there)
All of a sudden I realize, what exactly I missed out on with Addison. All of a sudden, her delays seem loud and glaring whereas before they were merely part of her uniqueness. I see the way that Carter looks at me with such clarity whereas Addison's gaze leaves me wondering if she's comprehending anything I say. I see how strong he is and I joy in the act of nursing my baby. I cuddle him and love on him and remember that at this point in Addison's life, I still wasn't allowed to hold her. He holds with a tight grip onto my finger while he eats, sucking with such ease. I worked nonstop with Addison for FOUR MONTHS to get her to be able to sustain herself by drinking from a bottle. When he wants something- he screams a bloodcurdling, over-the-top dramatic scream and waves his arms desperately. Addison's lungs were so compromised that she never truly screamed and her cries were weak and short lived.
She is almost 20 months old and yet she is still getting several bottles a day. She's not talking. She's not walking. She refuses to sign. She is very much like a baby still herself, her achievements belying her age. She is very delayed, and I'm noticing in a new way everything that she should be doing.
It just seems like now I can step back and see her the way perhaps the world sees her. I envision the slowness that I'm now seeing creeping up into her girlhood, her teenage years, her adulthood...and it hurts.
Because to me she will always be my perfect Addison. Her almond eyes, rosebud lips and button nose scream gorgeous perfection. Her giggles and face swallowing smiles are the light of my life. But seeing it-really seeing her slowness...breaks my heart. Because while I know that it doesn't take away from my love for her, I worry how the world will treat her as she grows. I worry what this means for how functional she will be as she grows. What if she never talks? What if she can never truly take care of herself?
I hold no regrets in everything I've done for Addison. I would do it all again because she is worth every little thing that we went through to sustain her through her very difficult first year of life.
But now I remember why I was so scared of Down syndrome. After all, isn't this every mother's worst nightmare? Isn't this why they're coming out with new tests to tell sooner and abort faster? Isn't this why 90% of women with this diagnosis choose to eliminate the unwanted fetus?
The way I see it- my life needs both of these colors. The softer color will balance out the bright color. The bright color will bring out new hues in the soft color that I didn't notice before. They will both be better because of each other.
Even though the diagnosis and labels now scare me in a new way, I don't hate Down syndrome. It just happens to be part of who Addison is, but in no way defines who she is. Her amazingly unique personality can't be fit into any stereotype, and she certainly isn't any less worthy of life than any other child.
And I love her. All of her. She is seriously so amazing- she has changed me so much it's taken a year and a half of constant blog posts to barely scratch the surface of those changes.
I've noticed Addison's slowness in a new way, but I'm moving on. I'm not going to let this drag me down and depress me (the lack of sleep is doing that pretty well on its own)
After all, every child is different; every child is unique; every child is perfect. I wrote a book about it, remember? (My agent is currently has my book...I'm taking a maternity leave of sorts...in case you were wondering)
I love my two perfectly created children. My house is a bit like a circus these days as they are both crying and wanting attention at the exact same time. My nights are split into tiny chunks feeding my newborn and checking in on my big girl. I shed new tears over things that I thought were long ago resolved.
But I wouldn't change my life. I love my little family and I love my nurturing role.
Mother. Such a complex word....