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.

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!

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  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 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


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.

Tuesday, October 2, 2012

PreK Graduation

Lilly had an amazing year of Pre-K last year. We are so grateful that she was in a school that was so good to her (and we're so glad she's doing so well still there in Kindergarten this year!)  Here are some pics and videos of graduation day. 
Getting ready for graduation...
 Lilly and daddy going in the car...
 Mommy, Lilly and Ben outside the school

Monday, October 1, 2012

31 for 21.

I have never done this before - and it scares me to think about the commitment - but for the first time I'm going to participate in 31 for 21.  31 blog posts this month - October is Down syndrome awareness month - in honor of the 3 copies of the 21st chromosome that my sweet daughter has.

The common theme to the blog - and our lives - is that Lilly is the best thing that has ever happened to us - of course, now tied with her little brother Ben.  But there is nothing - not a single thing - about her, her chromosomes, her being, her life, that is anything less than amazing, and I am so grateful each day that God gave her to us exactly as she is.

I also believe, so strongly, that the world needs to take notice of her, of our kids with an extra chromosome, and discover that they are just as important, just as funny, as sweet, as silly, as beautiful, as amazing, as any other kids.  Possibly moreso, because of the challenges they face and overcome, the strength they have.  I am so proud of my girl every day for giving life 100% effort, for keeping up with her class, for being good and kind and sweet and smart.  Down syndrome, in our lives, is not at all negative, and - in my opinion - not anything at all worth obliterating from existence, or weeding out (although that, is a topic for another post).  While it does have it's challenges at times - like, learning how to read is harder for L, although amazingly she is learning well and so proud of herself - there are also so many parts of my day where I am wishing I had some of her characteristics - like her patience, her imagination, her beauty, her wit, and mostly her ability to see the best all around her.  And even moreso, her ability to bring the best out of those around her.

So today, on this first day of October in 2012, I am just so very grateful for the gift of my daughter.  (And my son too, of course; poor Ben and his typical chromosomes.)  God has given us two amazing - and equal - gifts in our two children.  And, if you don't have a child with Down syndrome, remember that.  Lilly is nothing less than the best thing that has happened to us, just as her brother is.

Today I am grateful for going into Lilly's room this morning as she was starting to wake up, and giving her a kiss on the cheek.  She promptly told me to "move, mommy!!" as apparently I had touched her Barbie doll (Tiana, to be exact) who was sleeping next to her in bed.  She got out of bed, turned on the light, and started playing with her Barbies, and it took all the tricks in the book to get her to finally get dressed for school.  I remember being exactly her age - 6 years old - waking up each morning and seeing my Barbies and picking up right where I left off the night before.  Coming up with ideas and scenarios, just as Lilly does.  Putting them in their cars, sitting them in their dream house, having them interact and letting my imagination blossom - just as my daughter is each day.  Love watching her become my mini me- does that make me egotistical? Or just nostalgic for the magic and wonder of being a little girl again...