I think it's safe to say that everything I originally thought prior to Lilly's birth is wrong. I was small minded, short sighted, and naive - about Down syndrome, about kids generally, about life. Thank God Lilly changed everything.
I hate the initial information given to new or potential parents of a child with Down syndrome. Genetic counselors, ob's, random friends and family share so many things that are confusing, broad, wrong, outdated, and so many other not-so-helpful things. There were a few things that stand out to me regarding the first time we heard the words Down syndrome when I was 13 weeks pregnant. First, the ob said that she would probably have a heart defect (based on the potential DS diagnosis, not based on anything he saw in the scan), and encouraged us have more tests to basically abort if it was positive for DS (and yes I think that was all in his same sentence). And someone said she'd need glasses. I worried that she would not be independent and wouldn't be able to do things on her own, but - I swear this was one of my initial thoughts - she would be a great traveler so - in my slightly shocked random though, I remember thinking if she can't work and can't live independently, at least she and I can travel the world together someday. I remember wondering if she wouldn't be able to learn - especially learning to read. And that she wouldn't have friends, people wouldn't give her a chance, and it might be lonely for her, and for our family.
Breaking down this list: Lilly did have a small heart defect, but it wasn't a big deal and was fixed in an hour long catheterization procedure. I am so thankful we did not do further testing and amazingly grateful we never considered the option of abortion - but our first doctor was correct when he used the word "positive" and "Down syndrome" in the same sentence, although that's not exactly what he meant. Again - thank God Lilly is exactly who she is. And oddly, she is the only person in our family with perfect vision.
As far as independence, I am shocked at how much street smarts Lilly has. She can figure anything out - literally, anything. I can't say for certain if Lilly will be living on her own as an adult with no help whatsoever, but to be honest I could almost see her doing it as she is now, at age 6. The girl knows her routine, knows where everything is, knows what is right and wrong, knows money and transportation, knows social skills and how to get what she wants and needs. She especially knows how to take care of her brother, and I wouldn't be surprised if it's her taking care of Ben someday, and not the other way around.
And I must have seen into our future, that first day that we heard the word Down syndrome, because Lilly won't just be a great traveler as a grown up - she is the best child traveler that we've ever met. She loves hotels, handles long international flights like a pro, easily gets her way through airports - checking in, security, that last minute bagel on the way to a flight, and appreciates the heck out of every cultural and social experience.
And learning. I am so inspired as I watch her work much harder than her peers need to, to learn the same material - but she makes it look effortless and is keeping up so well with her class. Which means: she is reading. She is writing. She is counting, and counting by 5's and 10's, and telling me about presidents and religion and life. I always thought that reading was so important because it would give her freedom, and the fact that she is so enthusiastic and learning to read so well just makes me so proud of this little girl.
And friends? Ha. Lilly makes and keeps friends so much easier than the rest of us. She is social, likeable, sweet, and funny. It warms my heart to hear everyone at school love her, and the playdate invites are nonstop. Every week I'm not even over exaggerating, she averages probably 3 playdates with different people. Girls, boys, kids in her class, kids in other classes, kids in different grades, everyone wants to hang out with Lilly. And the friends she makes often makes us friends in the parents of her friends, so it has definitely been the opposite of a lonely isolated experience. (And this isn't even talking about the amazing community of families we've met that have children with DS or other special needs.)
Are things always easy? No, but I wouldn't relate that to Down syndrome necessarily - I think being a parent generally is harder than I every pictured it to be - especially the pressure of doing it all and having it all. I am both working and staying at home. I need to volunteer for everything, cook healthy meals, keep the house clean, be responsible for my work which often has tight last minute deadlines, and teach the kids everything they need to be responsible, happy, health, well mannered and well behaved little kids. And sometimes, they have an off day, or sometimes I do. And Jon does help so much, but he's still the primary work-outside-the-house person, and works crazy hours. Things are busy, crazy, but they're so worth it, and I wouldn't change anything about either child: Lilly's extra chromosome and Ben's extra sensitivity. We're all exactly who we're supposed to be. I just wish that - in the initial glimpse of information regarding Down syndrome showed a more clear picture of how beautiful our lives are.
Monday, March 4, 2013
Wednesday, February 13, 2013
Lent
Every year - for the past few years - I've given up Facebook for Lent. There is something actually really nice, in my opinion, about stepping back, unplugging, disconnecting, and no longer knowing every little detail of everyone's life that they are sharing on there. That being said, I love normally knowing these things: but the absence of it gives me time to reflect on my own life, time with the kids, time to spend with God, and just silence from the constant noise and feedback in my head that Facebook normally provides.
Last year, as I still updated my blog every so often during Lent, a few people criticized: you should give up everything - not just Facebook. Or implying that I was selfish because I was still "plugged in" to this and not that.
To me, Facebook is instant gratification, it is going on whenever you want, seeing everything everyone is posting, saying anything you want to get a response to, showing your own life - the good and the bad (which usually you get immediate support and feedback). A blog is different - to me. I'm not a professional or even quasi-decent blogger. It started to record our year in New Zealand for myself primarily and our friends back home in the US. And it continued, mostly, for me to memorialize Lilly's World for myself - to remember what it felt like when she started walking, to remember how happy she was at a birthday party, even to know my thoughts on this or that. And Ben came along, and as much as I want to record those things for him as well, the busy-ness of life overcame us, so it's only been occasional for the past 9 months. (Thankfully I missed Lilly's first 2 years - as far as blogging goes- as I started the blog right around her second birthday - so really I'm not so behind with Ben.)
So what I'm saying is, a blog isn't the showy immediate response Facebook world. I don't have many readers, people rarely comment, it's more to remember Lilly and Ben and our life. So that's my justification - as if I need a justification for what I give up for Lent. Shouldn't that be my business, and God's? And by the way, I'm giving up sweets and also want to write down each day the things I am grateful for and thank God for this long list of blessings He has given me.
Last year, as I still updated my blog every so often during Lent, a few people criticized: you should give up everything - not just Facebook. Or implying that I was selfish because I was still "plugged in" to this and not that.
To me, Facebook is instant gratification, it is going on whenever you want, seeing everything everyone is posting, saying anything you want to get a response to, showing your own life - the good and the bad (which usually you get immediate support and feedback). A blog is different - to me. I'm not a professional or even quasi-decent blogger. It started to record our year in New Zealand for myself primarily and our friends back home in the US. And it continued, mostly, for me to memorialize Lilly's World for myself - to remember what it felt like when she started walking, to remember how happy she was at a birthday party, even to know my thoughts on this or that. And Ben came along, and as much as I want to record those things for him as well, the busy-ness of life overcame us, so it's only been occasional for the past 9 months. (Thankfully I missed Lilly's first 2 years - as far as blogging goes- as I started the blog right around her second birthday - so really I'm not so behind with Ben.)
So what I'm saying is, a blog isn't the showy immediate response Facebook world. I don't have many readers, people rarely comment, it's more to remember Lilly and Ben and our life. So that's my justification - as if I need a justification for what I give up for Lent. Shouldn't that be my business, and God's? And by the way, I'm giving up sweets and also want to write down each day the things I am grateful for and thank God for this long list of blessings He has given me.
Monday, October 8, 2012
The Moms
All moms are superheros, really. Being a mom, you have a whole new respect for what your own mom has done, in raising you in a reasonable way, day after day, year after year, putting in insane amount of effort, love, ingenuity... Every minute is sometimes intense and you have to dig down to another level of patience.
But there's a group of moms that are especially amazing. Through the past 6 years of being Lilly's mamma, we've gotten to know many other families that have kids with various needs, and I am in awe to be part of this group. The moms of kids with Down syndrome, autism, cerebral palsy, physically delayed, intellectual disabilities, heart issues, multiple surgeries, seizure disorders, feeding issues, sleeping issues, and other disorders and disabilities.
It's not that we're better than other moms, or that our issues are necessarily harder than other moms who aren't dealing with the same things. Because in a lot of ways, in my own situation, Lilly is so much easier than a "typically developing" child - she is pure fun, she is magic, she is easy going, she is a great companion - and her needs really aren't all that special most of the time. But really, for us, and for those moms in this category of "special needs moms" the difficulty is in the complexity of what we deal with in our children's needs and the fact that we are the "off the beaten path" parents. There are few guidebooks when we are dealing with various health needs, physical needs, emotional needs, mental needs. I think that is what is hardest - because there's no set "normal" way to do anything, and we are leading our kids and guiding our family's direction, so there is a lot of pressure on our shoulders to do it "right," and however we feel is most appropriate for our situation.
We love our kids as much or more - because the need it and because they just are amazing. Our kids have incredible strength, perseverance, and they really do inspire us to keep on giving after we've exhausted all our efforts. And not just in mental and physical energy, but we are constantly having to figure things out. We read everything we can possibly read, talk to as many other parents who have been through what we are going through, and then we - after debating - often times throw away everything we've learned and go on our gut instinct on what is best for our own child. As with any child, parenting is not a one size fit all package, so we really have to know our child and our family. Even doctors and therapists can sometimes give us advice that we ignore based on our own judgment.
And many times these moms are doing everything to provide the top support - and love - for their child, while juggling other kids, jobs/careers, and husbands with long hours. Many of us don't live near family, or are dealing with tight household budgets - trying to find financial support to add a new therapy or something that may change our child's life. We struggle with finding enough hours in the day.
Recently a fellow kindergarten mom and I were talking, and I said how I was teaching Lilly so much outside school to make sure she stays up with everything - and she said "it's only kindergarten!" And I just thought... you know, it's only kindergarten to you - your child learns typically and will learn this material no matter how it's presented in school, and whether or not you do anything outside of the classroom. But for me - there is barely a moment where I'm not thinking of ways to help Lilly learn, grow, thrive.
And most of the time, we are not resentful, and we wouldn't change our situations or our children. We - the moms of these kids with special, or different, needs, are in love with our children and just want to give them the amazing lives they are worthy of. When I spend time with these moms, I am recharged by their energy. God has entrusted us with such special gifts, and I am proud to be part of this great group of women.
But there's a group of moms that are especially amazing. Through the past 6 years of being Lilly's mamma, we've gotten to know many other families that have kids with various needs, and I am in awe to be part of this group. The moms of kids with Down syndrome, autism, cerebral palsy, physically delayed, intellectual disabilities, heart issues, multiple surgeries, seizure disorders, feeding issues, sleeping issues, and other disorders and disabilities.
It's not that we're better than other moms, or that our issues are necessarily harder than other moms who aren't dealing with the same things. Because in a lot of ways, in my own situation, Lilly is so much easier than a "typically developing" child - she is pure fun, she is magic, she is easy going, she is a great companion - and her needs really aren't all that special most of the time. But really, for us, and for those moms in this category of "special needs moms" the difficulty is in the complexity of what we deal with in our children's needs and the fact that we are the "off the beaten path" parents. There are few guidebooks when we are dealing with various health needs, physical needs, emotional needs, mental needs. I think that is what is hardest - because there's no set "normal" way to do anything, and we are leading our kids and guiding our family's direction, so there is a lot of pressure on our shoulders to do it "right," and however we feel is most appropriate for our situation.
We love our kids as much or more - because the need it and because they just are amazing. Our kids have incredible strength, perseverance, and they really do inspire us to keep on giving after we've exhausted all our efforts. And not just in mental and physical energy, but we are constantly having to figure things out. We read everything we can possibly read, talk to as many other parents who have been through what we are going through, and then we - after debating - often times throw away everything we've learned and go on our gut instinct on what is best for our own child. As with any child, parenting is not a one size fit all package, so we really have to know our child and our family. Even doctors and therapists can sometimes give us advice that we ignore based on our own judgment.
And many times these moms are doing everything to provide the top support - and love - for their child, while juggling other kids, jobs/careers, and husbands with long hours. Many of us don't live near family, or are dealing with tight household budgets - trying to find financial support to add a new therapy or something that may change our child's life. We struggle with finding enough hours in the day.
Recently a fellow kindergarten mom and I were talking, and I said how I was teaching Lilly so much outside school to make sure she stays up with everything - and she said "it's only kindergarten!" And I just thought... you know, it's only kindergarten to you - your child learns typically and will learn this material no matter how it's presented in school, and whether or not you do anything outside of the classroom. But for me - there is barely a moment where I'm not thinking of ways to help Lilly learn, grow, thrive.
And most of the time, we are not resentful, and we wouldn't change our situations or our children. We - the moms of these kids with special, or different, needs, are in love with our children and just want to give them the amazing lives they are worthy of. When I spend time with these moms, I am recharged by their energy. God has entrusted us with such special gifts, and I am proud to be part of this great group of women.
Sunday, October 7, 2012
You've got a friend
Making friends isn't easy. I'm always impressed by Lilly's ability to make true genuine friendships - it comes much easier to her than it does for most people. I'm grateful, because my girl has confidence and she is surrounded by people who care about her.
As she's grown I've wondered how it might change at some point. Because being the sweet funny adorable little girl who makes other people feel special is a great person to befriend, but what about when friendships get more complicated?
She's only 6, but so far so good. The girls in her class are pretty verbal, and while Lilly talks a lot, she doesn't hold a candle to these chatty girls, and at times you can't understand everything she says. But lately - in watching these friendships develop in playdates and seeing them in the mornings and afternoons at school - I notice it doesn't even matter. The girls love Lilly. They don't look at her in a negative way at all. I think one thing she has in her favor at school is that it is a diverse school in many ways, even being private, so differences are celebrated.
And the boys at school: Lilly does well with them because I don't think she's intimidating to them the way other girls are with them. She's just fun loving and will jump into games and the way she's not hyperverbal the way other kindergarteners do, makes her an easy friend to have. What you see is what you get.
Whatever the reason, I am grateful that Lilly has a variety of friends. It is a huge relief knowing my girl can hold her own with her friends, with all their similarities and differences. At some point I hope she will teach me a lesson with making friends so easily!
As she's grown I've wondered how it might change at some point. Because being the sweet funny adorable little girl who makes other people feel special is a great person to befriend, but what about when friendships get more complicated?
She's only 6, but so far so good. The girls in her class are pretty verbal, and while Lilly talks a lot, she doesn't hold a candle to these chatty girls, and at times you can't understand everything she says. But lately - in watching these friendships develop in playdates and seeing them in the mornings and afternoons at school - I notice it doesn't even matter. The girls love Lilly. They don't look at her in a negative way at all. I think one thing she has in her favor at school is that it is a diverse school in many ways, even being private, so differences are celebrated.
And the boys at school: Lilly does well with them because I don't think she's intimidating to them the way other girls are with them. She's just fun loving and will jump into games and the way she's not hyperverbal the way other kindergarteners do, makes her an easy friend to have. What you see is what you get.
Whatever the reason, I am grateful that Lilly has a variety of friends. It is a huge relief knowing my girl can hold her own with her friends, with all their similarities and differences. At some point I hope she will teach me a lesson with making friends so easily!
Saturday, October 6, 2012
Knock knock, who's there?
Since Lilly started Kindergarten, she has loved the morning routine. Come into school, stand in line with her class (the entire school meets in the gym, lined up by class), morning announcements, prayers, pledge of allegiance, joke of the day, and finally walking out with her class to her classroom.
It's nice because, honestly, it could be a scary time for her - it is a little intimidating, and I know she feels it sometimes, but really she loves the routine and all the parts of it. I get emotional almost daily, as I watch her recite her prayers while holding her hands perfectly together.
She loves to make announcements, and luckily the principal is generous with calling on her. Most days it is just "Mommy and Ben are here today!" (You'd think that would get old, since we're there every.single.day.) But after her confidence with making frivolous announcements, she decided it was time to conquer the joke of the day.
There's a box at the front of the school where kids can submit their jokes. A bunch of jokes in a box, one pulled out each day, and the lucky child is called up to recite their joke. Lilly loves that they are called on, and come to the front for attention and laughter. She was dying to tell her own joke.
The only problem was that we had to come up with a joke. Lilly apparently came up with a funny joke which goes like this: "Q: What does a cow drink milk?" "A: Cow! hahaha" Yeah, I didn't get it either, but Lilly apparently thought it was hilarious. I tried to figure out a joke dealing with cows or milk since she really liked that kind of joke, but couldn't figure out a good one. So I diverted her to a new kind of joke: the knock knock.
We practiced, literally, for a couple weeks. Then one Monday morning I had her write it down. The whole joke. It took a whole piece of paper (she writes in very large kindergarten handwriting). She was so proud of herself, and turned her joke in when we walked into school. I warned her that she wouldn't get called on that day, it might take weeks. However, my girl, full of faith and magic, stood at the front of her line that day (usually she prefers mid to back of the line), hoping that it would be her day.
Nope, not that Monday. Tuesday, I downplayed it. I told her it would probably be the next week, and to not be disappointed. And, when it was time for the special joke of the day, the principal called... Lilly Sherman! She went to the front, proudly, stood up tall while the principal made a couple last minute announcements, and finally she told her joke.
Knock knock.
Who's there? the entire school responded
Boo.
Boo who?
Don't cry!
She was so proud of herself. The entire gym laughed and clapped and enthusiastically responded to my girl. Not because it was hilarious but because they love her and it is a cute little joke coming out of a 6 year old. Lilly was on top of the world.
Since then she talks about that morning a lot. It made a huge impression. She felt important, and funny. And her school makes such a big deal about making her an integral part of the school - not because of who she is or despite who she is, but just because she's a normal kid and they love her. And we love this school that gives so much back to Lilly each day.
It's nice because, honestly, it could be a scary time for her - it is a little intimidating, and I know she feels it sometimes, but really she loves the routine and all the parts of it. I get emotional almost daily, as I watch her recite her prayers while holding her hands perfectly together.
She loves to make announcements, and luckily the principal is generous with calling on her. Most days it is just "Mommy and Ben are here today!" (You'd think that would get old, since we're there every.single.day.) But after her confidence with making frivolous announcements, she decided it was time to conquer the joke of the day.
There's a box at the front of the school where kids can submit their jokes. A bunch of jokes in a box, one pulled out each day, and the lucky child is called up to recite their joke. Lilly loves that they are called on, and come to the front for attention and laughter. She was dying to tell her own joke.
The only problem was that we had to come up with a joke. Lilly apparently came up with a funny joke which goes like this: "Q: What does a cow drink milk?" "A: Cow! hahaha" Yeah, I didn't get it either, but Lilly apparently thought it was hilarious. I tried to figure out a joke dealing with cows or milk since she really liked that kind of joke, but couldn't figure out a good one. So I diverted her to a new kind of joke: the knock knock.
We practiced, literally, for a couple weeks. Then one Monday morning I had her write it down. The whole joke. It took a whole piece of paper (she writes in very large kindergarten handwriting). She was so proud of herself, and turned her joke in when we walked into school. I warned her that she wouldn't get called on that day, it might take weeks. However, my girl, full of faith and magic, stood at the front of her line that day (usually she prefers mid to back of the line), hoping that it would be her day.
Nope, not that Monday. Tuesday, I downplayed it. I told her it would probably be the next week, and to not be disappointed. And, when it was time for the special joke of the day, the principal called... Lilly Sherman! She went to the front, proudly, stood up tall while the principal made a couple last minute announcements, and finally she told her joke.
Knock knock.
Who's there? the entire school responded
Boo.
Boo who?
Don't cry!
She was so proud of herself. The entire gym laughed and clapped and enthusiastically responded to my girl. Not because it was hilarious but because they love her and it is a cute little joke coming out of a 6 year old. Lilly was on top of the world.
Since then she talks about that morning a lot. It made a huge impression. She felt important, and funny. And her school makes such a big deal about making her an integral part of the school - not because of who she is or despite who she is, but just because she's a normal kid and they love her. And we love this school that gives so much back to Lilly each day.
Friday, October 5, 2012
Happy 6th birthday to my best girl!
So, I actually committed to 31 posts within the 31 days of October... so while I didn't have time to post yesterday, I'll double up today. And I swear I will try to accomplish these 31 posts!
Lilly had an amazing year last year (ok, when has Lilly not had an amazing year?). But really, her school, her friends, it was all just really good. We celebrated her 6th birthday in June by going to the Little Gym with all her friends.
This was her second Little Gym party - she had one in Charlottesville 2 years before, for her 4th birthday, and it was a lot of fun. This year was just as good - they just throw a nice, easy party, and totally know how to get the kids excited and to have fun. And all we needed to bring was the cake! (And a check.)
I wasn't into taking too many pictures but here are just a few random shots of L and her friends... And I threw one of Ben in too so you know he made his appearance.
Wednesday, October 3, 2012
Disconnect
Sometimes I want to write here- to rant all about the injustices, the ridiculousness, the hypocrisy and the downfall of our society because so many people refuse to accept less than perfect, and in doing so, in chasing that dream of perfection, have a much less "perfect" life. While I would classify myself as pro-choice - to be honest, after 2 rough (physically) pregnancies, I would have a hard time forcing someone else to go through with a pregnancy that they decide they cannot handle, although personally I do not support abortion, would never consider it for myself, but really I wouldn't put my personal beliefs on someone else - but I hate the fact that due to a tiny glimpse into a tiny inaccurate biased portion of what Down syndrome is, so many people are trying to avoid it, kill it, and just generally be against it.
Because "it" is my daughter, and she's pretty close to perfect (or as close as any child I've ever seen). And it could be your daughter, your son, your grandchild or niece or neighbor or student or friend.
Sometimes I believe God chose Jon and I - because we are so loving and unbiased and we are so grateful that God gave us this special gift of a daughter. But sometimes I think - while He made Lilly so perfectly the way that he makes all children, perhaps it is just a fluke that He sent her to us instead of another family. And either way, I do believe that He made her - that her chromosomes are not an accident and that she is very intentionally exactly the way she is (and it is hard to believe otherwise, when you see her intense positive impact on the world) - and as such, it is not just us "dealing" with this child within our own family - but that she was given to us but moreso to the world. It is our responsibility to take care of her. I'm not talking about money, or resources necessarily, but taking care of her, as a valued member of our society. Like when you see my daughter, to not judge her but instead to see that she's just a 6 year old girl who is in love with Barbies, Justin Bieber, dance parties, and traveling. That she might have a lot in common with your own child, or that she has a lot to teach you about life, and living life to its fullest.
My child has Down syndrome, but even more than that, she has courage, she has strength, she has wisdom, she has beauty, and she has the biggest heart. She has faith that the world will be good to her, and generally, it is. On a personal level, it almost always is. But that's what kills me, is that there is this huge movement - among doctors, and genetic testing, and pregnant moms, sometimes the education system, and even in the media generally, that my child is part of a class of citizens that is not enough. And trust me, she is.
7 years ago, when we got that first genetic test with the 1 in 10 chance of my unborn baby having Down syndrome (which a week later turned to 1 in 5), we quickly wondered if we were unlucky. But every day of Lilly's beautiful life I feel the biggest hugest amount of lucky that a person could feel. Like I won the lottery, with this girl. How can we change the way that moms like me originally feel, based on - basically - nothing? Why did I feel sad, when the reality is actually the happiest our family could possibly be? I can't even imagine things turning out differently, and thank God they didn't. So why is there this disconnect between a hypothetical "Down syndrome" and having an actual child with Down syndrome?
To anyone that is in our shoes, or to anyone who wonders what it is like for us, the honest truth is, having Lilly was the best thing that ever happened to us. She is a ray of sunshine, she is smart, she has an admirable sense of self and a strong work ethic and the courage to face anything. She is everything I've ever wanted in a daughter and more. So as much as I've said things like this over and over again on this blog, I think it bears repeating, because not a day goes by that I don't think of how amazing my little girl is.
Because "it" is my daughter, and she's pretty close to perfect (or as close as any child I've ever seen). And it could be your daughter, your son, your grandchild or niece or neighbor or student or friend.
Sometimes I believe God chose Jon and I - because we are so loving and unbiased and we are so grateful that God gave us this special gift of a daughter. But sometimes I think - while He made Lilly so perfectly the way that he makes all children, perhaps it is just a fluke that He sent her to us instead of another family. And either way, I do believe that He made her - that her chromosomes are not an accident and that she is very intentionally exactly the way she is (and it is hard to believe otherwise, when you see her intense positive impact on the world) - and as such, it is not just us "dealing" with this child within our own family - but that she was given to us but moreso to the world. It is our responsibility to take care of her. I'm not talking about money, or resources necessarily, but taking care of her, as a valued member of our society. Like when you see my daughter, to not judge her but instead to see that she's just a 6 year old girl who is in love with Barbies, Justin Bieber, dance parties, and traveling. That she might have a lot in common with your own child, or that she has a lot to teach you about life, and living life to its fullest.
My child has Down syndrome, but even more than that, she has courage, she has strength, she has wisdom, she has beauty, and she has the biggest heart. She has faith that the world will be good to her, and generally, it is. On a personal level, it almost always is. But that's what kills me, is that there is this huge movement - among doctors, and genetic testing, and pregnant moms, sometimes the education system, and even in the media generally, that my child is part of a class of citizens that is not enough. And trust me, she is.
7 years ago, when we got that first genetic test with the 1 in 10 chance of my unborn baby having Down syndrome (which a week later turned to 1 in 5), we quickly wondered if we were unlucky. But every day of Lilly's beautiful life I feel the biggest hugest amount of lucky that a person could feel. Like I won the lottery, with this girl. How can we change the way that moms like me originally feel, based on - basically - nothing? Why did I feel sad, when the reality is actually the happiest our family could possibly be? I can't even imagine things turning out differently, and thank God they didn't. So why is there this disconnect between a hypothetical "Down syndrome" and having an actual child with Down syndrome?
To anyone that is in our shoes, or to anyone who wonders what it is like for us, the honest truth is, having Lilly was the best thing that ever happened to us. She is a ray of sunshine, she is smart, she has an admirable sense of self and a strong work ethic and the courage to face anything. She is everything I've ever wanted in a daughter and more. So as much as I've said things like this over and over again on this blog, I think it bears repeating, because not a day goes by that I don't think of how amazing my little girl is.
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