Tuesday, November 17, 2009
I hear things like this all the time. All The Time. In many cases such as my new hairstylist, the person is somewhat of a stranger and doesn't know about Lilly - it is just a statement many women say (and believe, I guess) because they have fears of the "higher risks" of a pregnancy in your late thirties. On one hand, I get that fertility goes down as a woman ages, so I understand wanting to have kids while you still can. But really, I don't think that's what many women are talking about.
What's more surprising to me are the people that say this fully knowing our situation. Who see Lilly playing, singing, dancing, and still think it's a good comment to make that they wouldn't "risk" having a child in their late thirties or older. Really? Even if you believed that, there are some things you just don't say to someone because it is rude.
Don't get me wrong - there are a variety of higher risks of pregnancies in the late thirties and forties and I'm not trivializing these - but it seems as though the "risk" that most people are referring to is Down syndrome. That is the one that is all over the "What to Expect" books and the "first and second trimester ultrasound screenings" for pregnancy. It is so common to talk about - and try to "rule out" a genetic abnormality such as Down syndrome, that before I went in for my first ultrasound at 3 months of pregnancy - at the age of 24 - I had it on my mind. Because all the stupid baby message boards talked about ultrasounds and ruling out Down syndrome and the chance of a "bad" test result which would lead to an amnio which "of course" would turn out ok. Yet I was the odd seed that went into that first ultrasound, before even knowing anything about my ladybug, feeling strongly that I did not want any genetic testing because I would love my child regardless, and it would just make me worry the entire pregnancy if the results came out positive for Down syndrome.
I am the exception. But thank God, I was also the lucky one in 700 that was blessed with a child with Down syndrome, because we chose to have and love our baby girl regardless of her chromosomes. And now we see that it is such a small part of who she is.
Sometimes I wonder if I'm in denial. Because I look at my child and see a perfect little girl. I see me in her, and Jon, and a little of my mom and my Grandma Lillian for whom she is named after, and I see her cousins in her, and half of her is total princess as well. (I even see a little Julie Andrews in her lately.) :) But I wonder - what the heck is going on when I am living life each day with such a fun, sweet, cheeky, smart, beautiful little girl? Why is the abortion rate for kids with DS 90%, when I feel like we won the lottery, not that we got hit by lightening like other couples seem to feel. I wonder if I am in denial - because is there something going on that I can't see? Is our life horrible and I just didn't get the memo? Is Lilly so challenging but I just don't realize because I'm a (relatively) new parent?
Absolutely no. Lilly is delightful and a joy because that's who she is. I mean, I have to think that because I'm her mommy, but the fact that her teachers, her family, her friends, and everyone she meets seems to think she's amazing just justifies that I'm not delusional. She really is a great little kid.
And I do recognize that there are differences about Lilly - it takes her longer to learn certain things - but not all things, and usually she's just a few months behind the "typically developing" curve. She does have a heart defect that we will fix in January through a catheterization surgery which will put a tiny device to close a little hole. And while I completely acknowledge that it's a big deal, I put Lilly in God's hands and pray that he will take good care of our little girl.
The ways that Lilly is "different" that are likely attributed to Down syndrome, do not make her less than a wonderful person - but they do make me love her even more, and they make her a more special person. I see every accomplishment of Lilly's as being amazing, whether it is a new skill (like putting on her coat all by herself) or a new word that she says (or reads! She can now sight read a handful of words, including Daddy!) or whether it is memorizing the words and choreography to "Sixteen Going on Seventeen" and acts/sings the entire song out with her daddy. I hate to be "gushy" or "sentimental" but I am just in so much awe of everything she does, and the hard work and effort that goes along with it.
So I don't know. I don't know if there is something wrong with me that I don't see the "bad" in my child the way so many strangers with no association to Down syndrome feel. But I do know that everyone who meets Lilly falls in love with her. I know that children and adults with Down syndrome are incredible for overcoming so many things - from medical issues to working hard in school and graduating high school - and these amazing people couldn't do it without supportive people in their lives.
So it just kind of seems like there is this runaway train of negativity, led by outdated stereotypes and genetic counselors and ob's who have no real knowledge of what life is really like for a family with a child with Down syndrome, which seems to make people believe that it really would be a "worst case scenario" to end up in our shoes.
I know a child with special needs is not what a parent asks for when they get pregnant. There are tough things that go along with it. But for anyone who's read my blog on a regular basis, you see that we are just normal people living a normal life. A resident husband who works a million hours a week but who loves his wife and child with all his heart. A lawyer wife who also works full time who is a constant advocate for her child with special needs but who is also very concerned with making sure that her daughter learns how to bake, and that they get the right princess dress for Halloween. A beautiful 3 year old girl who has flown more than the average adult and who has traveled all over the world, and lived in New Zealand for a third of her life. Proud parents, and a little girl with the funniest sense of humor and feet that are like speedy gonzales when she's running around the house - faster than I can chase her! Parents who will give their girl the best that life can offer, and will be proud of her successes no matter what they are - the bar is not set too high nor too low for this little girl; in fact, there is no bar but a fairy wand which Lilly holds and gracefully twirls with mommy and then wacks daddy upside the head with it. She is a child who makes friends easily, who catches on to new things at preschool, who is so proud of herself when she accomplishes anything, and who does a victory dance & shouts "hooway!" in the middle of the grocery store aisle when I let her pick out cookie mix. This is a little girl whose favorite songs to sing are Michael Jackson's "I'll be there" and "It's a Small World" and "John Jacob Jingleheimer Schmidt." She is a little girl with powerful hugs which embrace my entire heart.
Not that our lives are perfect. But my biggest complaint is Jon's busy schedule (although I 100% support his career, but I'm just saying); and I'm sure his biggest complaint is that I'm a backseat driver. And if we had anything remotely negative to say about Lilly, I'd think Jon would say it was the time she peed on his shoe - while he was wearing it - on purpose, because she was fairly potty trained so she should have known better; and for me I'd say I wish she didn't always want to type on my laptop. Our family complaints have nothing to do with Down syndrome, and we are blessed that there is so much love between the three of us (especially when Lilly hugs both of us and sings at the top of her lungs the "I love you, you love me" Barney song). And for the record, Lilly's complaints about her parents are that her daddy washes her hair, which annoys her, and that I won't let her wear makeup more often. It's a tough life for her, I know.
I wish in the midst of the fear of being an "older mom" and its associated risks, a woman and her doctor could take a little peek into our world, Lilly's World, and see how amazing our lives really are.
Saturday, November 7, 2009
Just want to share all the wonderful things she can do:
Lilly can go potty all by herself - in fact, she prefers no help. She pulls down her pants, goes, flushes, washes her hands all on her own. No more diapers or pullups for this little girl! (During the day, at least.)
Lilly can also drink out of an open cup, get her own water from the fridge, and she can eat with chopsticks!
Lilly is learning to dress herself. She can put on her own jacket (the preschool upside down flip way), put on her own socks, and she loves putting on and wearing headbands and hats.
Lilly is also talking so much, and I love hearing her sing. She and I also have our first "inside joke" - I'd share it but it's inside - but she came up with it herself. She has a wonderful sense of humor. Also she has just come up with a "sign" for "cheeky" and has started signing sentences.
Lilly is also pre-reading. She is recognizing the words "sesame street" "hannah montana" and "mcdonalds" among others.
I also like to call Lilly my "backseat garmin" - she has a good sense of direction, and when we're in the car, she always tells me "go dat way" or "go da oder way" and points. She knows if you go right on a certain street, you end up at her school, and which road goes down to her neighborhood. She yells out if I don't go the way she wants when we drive around town.
I am so proud of my girl. She is a quick learner and seems to be a sponge when it comes to taking in new things.
Monday, November 2, 2009
2006, Lilly was a baby chick.
2007, Lilly was a neurosurgeon (and Jon & I were her residents).
2008, Halloween wasn't really celebrated in New Zealand (no trick or treating!) so Lilly was Cinderella (we got the costume from our Disneyland trip). Lilly's twin boyfriends came over for a party and wore their Thomas the Train shirts and boots.
This year, Lilly dressed up as the Holiday edition of Belle from Beauty and the Beast. The dress was so super gorgeous (and multi-purpose - she's going to wear it on our December trip to Disney World/Disney Cruise).
We carved an Elmo pumpkin, which Lilly LOVED. She even liked eating the pumpking seeds that I baked - half the batch was salt and the other half was cinnamon sugar.
On Saturday (Halloween), we only went to a few houses for trick or treating. After the first house, Lilly opened up her M&M's that she just got and started eating them, which kind of took away the incentive to do too much more trick or treating. Then after another house or two, Lilly started singing "Rain, rain, go away, come again another day." Jon and I looked at each other confused and then we felt the rain drops. :)
Then we handed out candy for awhile at the house. Our subdivision must get most of the trick or treating population in Charlottesville - it was busy until we turned the lights out at 9 pm! Lilly loved opening the door and distributing candy. Although, she tried to give one piece of candy that was half eaten (by her). She also liked going outside and walking halfway down the driveway, and then coming back to the door like she was a trick or treater, and she got lots of candy from us that way! Overall it was a low key but good Halloween. :)