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...

Thursday, September 20, 2012


You should see my to do list.  I'm back to work, doing a million things all the time for Lilly (most importantly giving her a good foundation at home for the reading and writing that she is learning in Kindergarten this year, while giving her a fairytale perfect childhood), taking care of my sweet baby boy Ben, and the never ending chores around the house.  All while constantly planning vacations and quality family time.

And yet - on this "Ben's sick" day, so he's home from school, and I'm taking a break from work, to unload the dishwasher, put away 3 loads of laundry, and clean the house (until Lilly gets out of school this afternoon and I become the chauffeur for her back and forth to speech, feeding Ben while we wait for her) - I glance over at Ben in his exersaucer and take the time to really see him.  My recently turned 5 months old little boy, become a real baby, instead of little infant.  He is shouting at The View, hitting his little toys on the 'saucer, and occasionally spinning himself around to swipe something, before turning back to hit his frog toy.  And I fall a little more deeply in love with this little guy.

These kids are growing up too fast.  Life's pace is a little fast, too.  I want to slow down and appreciate them, as much as I can.  But they're doing great, and in a way, I feel like they are on their on track and all I can do is just love and support and provide them with the tools they need as they grow and accomplish.

Ben is a funny little guy.  He started with colic for 3 months, and was a horrible sleeper, but then something switched in him and he got happy.  He became funny and sweet and very aware of everything - a very sensitive - or sensory - little boy.  Which is maybe what the colic is all about - every little thing was very sensitive for him - if his diaper was a tiny bit wet, if he wasn't fed right when he wanted to be - he was outraged.  But he's more comfortable in his life now, and it is a joy to be with him.  And who knows, maybe the colic was his way to train us: I know you've had Lilly in this family, but I'm here now too, and pay attention to me RIGHT NOW.  So they are our equal little kids, each with their own needs and strengths.  But what is great is that they are both so sweet and special and we are in love with them both.

And what is even more amazing, is - as much as Lilly was excited about her brother when he was born - he is now starting to be pretty interactive with her.  He is laughing when she says "peek a boo" and it just takes a little encouragement from him, for her to totally devote herself to making him smile.  A brother and sister, completely starting to bond and love each other, is the most precious gift.

Lilly is doing great generally, too.  She started Kindergarten at her Catholic School.  This school is the answer to our prayers: they truly love her, accept her, and yet have high expectations of her.  It is such a faith based school, and it touches my heart to watch Lilly learn to recite "Hail Mary."  She has developed such authentic friendships with her peers.  The school work is hard, but she's keeping up well.  I *think* (hope?) she's paying attention pretty well in class.  And, she loves her uniform, thank goodness.

So that's a brief overview... Hope to catch up more soon, especially with some pictures!

Monday, June 18, 2012

Time Flies

Busy doesn't begin to describe the past couple months.  I finished up a not-very-comfortable pregnancy with a super easy delivery, and fell in love with my sweet little son, Ben.  Who proceeded to have colic for 2 months, until we just switched his formula (again, in addition to trying everything else) and now my little baby is as sweet as could be.  It was rocky during the cry-most-of-the-day-like-he's-on-fire period, but now that we're (hopefully) on the other side, it's all so enjoyable. 

Two kids is 10 times more work than 1.  And it was both an easy and a hard adjustment.  Lilly has had her crazy moments but for the most part she has been amazing lately, and she's been a very caring and helpful sister to Ben.  She finished up the school year with a great progress report (she's a smart little girl!) and great friendships.  She graduated pre-K singing songs with her class (which I'll post at some point), and is ready for kindergarten in the fall.  We feel so blessed that she is going to such a good school, that focuses not just on her education but on the relationships of kids and her spirituality and religion.  Watching my girl say her prayers, bless herself perfectly, and just be a good kind and polite child (most of the time) soothes my soul.

She has grown so much this year.  In the past few weeks she has a pretend sister name "Shunta." Lilly can draw so well - pictures of her family, dogs/cats, ice cream cones, anything.  She can write all her letters so well, and spell out names - perfectly for ones she's seen before, and guesses pretty well at other names she tries to sound out.  She is speaking so clearly, says so many new phrases, and has comprehension of so many things.  We are very proud of our girl.

We are spending the next month away from home.  I'd like to - and we'll see if it happens - blog every day for this month to recap the past few months but also to memorialize this month.  This week we are at Disney World - just me, Lilly and Jon - for a few days to celebrate my beautiful daughter's 6th birthday.  Then, we are in Atlanta for 3 1/2 weeks while Lilly attends camp with her cousins, and Ben plays with his 3 triplet baby cousins.  Jon will be in Atlanta for 3 weekends out of 4, which is exciting.  This is the first summer in years that we haven't moved, but with Ben's arrival and our month away from home, it won't be boring. 

So it's 7 am on our first day in Orlando.  Time to get ready, check into the Beach Club, and begin our magical trip!  Lilly was beyond ecstatic when we arrived late last night - even just checking into the Homewood Suites and watching a Disney World commercial.  There is nothing she does better than appreciate life.  And my sweet Benji is with my parents in Atlanta and we do miss him so much.  That's all for now...

Thursday, May 3, 2012

Lilly and Ben

I don't know what I thought I'd get with this new little person that would join our family.  Part of me imagined a 2 or 3 year old demanding little child; part of me hoped for a repeat of sweet Lilly; but I don't think I pictured a precious little newborn boy like little Ben.

I shouldn't compare kids, but there's no right or wrong with my two little ones; there's no good or bad.  It's definitely interesting to see how "the same" they are, and how different, and how the experiences are completely different.  And we're only two weeks into this adventure.

We have realized what an easy baby Miss Lillian Grace Sherman was.  She didn't cry much, she was happy and content to eat, sleep and have her diapers changed.  She easily went with the flow, drank her bottles well and on the schedule we assigned to her, and slept through the night from about a month on (and we had to wake her every 4 hours before that).  Definitely easy.

Ben is the opposite, although he's still an easy baby.  But he is demanding: if his tummy is hungry, he screams.  If his diaper is being changed, most likely he's not happy.  Baths come with a scream like we're trying to murder him instead of just gently clean his little body.  He does sleep well, but wakes up every 3-4 hours to eat and needs his food right when he wants it.  But the majority of the time he is just a precious little baby, with big eyes that watch his new world closely, cautiously.  I think he doesn't quite trust us yet, but so far we're doing a good job for him.  He melts into our arms when he sleeps, and at night is very content in his own room in his crib.  As I told him two nights ago around 2 am as he was sweetly drinking his late night bottle, "Thank you God for Baby Ben."

But as easy a baby as Lilly was, and how probably more "typical" Ben is with the crying and demands, Lilly had other stuff going on that made it "hard."  Like, most newborns don't stay in the hospital special care nursery for two weeks, and come home with a nasal canula and an O2 monitor and oxygen tanks spread throughout the house.  Oddly, and maybe because Lilly was our first, that didn't bother us or even seem strange - it was our normalcy.  And the extra doctor's appointments to check our her heart, meet with a geneticist, and - of course - switch pediatricians, in addition to a developmental pediatrician and occupational, speech and physical therapist evaluations at the early age of 3 weeks!

Lilly's been in the hospital maybe 5 times in her life for overnight stays - most of the time, we are just trying to get her healthy so we can get home as quick as possible.  So when Ben was born on a Monday at 8:05 in the morning (and we arrive at the hospital only 4 hours earlier), my mom instinct was to try to escape as soon as possible.  I stayed the first night, by myself with the baby (Jon was home with Lilly, who we hadn't seen because of her 10 days in Atlanta), and decided the next morning that I didn't want to stay another night.  We were shocked when the ob and pediatrician said fine, we could leave that night.  After Ben had his circumcision at lunch time, we waited a few hours and were on our way to freedom (home).  And total opposite of Lilly's medical appointments: Ben has had two pediatrician appointments, and our wonderful doctor comes to the house for the new baby and 2 week visits, so that was super easy.  I kept waiting for someone - at the hospital, or the pediatrician - to tell us of a big medical problem, or something to watch our for, but little Ben has nothing to worry about, at this point. 

Lilly and Ben love each other, no matter how similar or different they are.  It's interesting because, in the Down syndrome community, I hear people talk about how their child with Down syndrome may affect their other children.  But Lilly is our first, and to be honest I never worry about the way she will affect anything in life ever - she is perfect to me, as is Ben.  But to see her be such a great big sister - worrying about her brother, taking care of him... Who knows what the future holds, but I see Lilly as being so self-sufficient and independent - and I see her looking out for her brother as they grow up, the way big sisters always do, and I'm sure there will also be times when he returns the favor.  She has no jealousy towards this new person in our family, if anything, her only concern is getting him to be happy and comfortable.  She gives him bottles, burps him, holds him, kisses him, tells him to "shhh" when he's crying, blesses him and says nighttime prayers with him, and just loves him with her pure heart.  And he always pays extra attention when she is nearby, he loves hearing her voice.

So those are my kids, and I love them both so much.  Now, while the big one is at school and the little one is sleeping for a few minutes, I'm going to take a much needed shower!

Monday, April 23, 2012

Happy Birthday Ben

It's not just Lilly's World anymore.

One week ago today, I was in the hospital getting ready to welcome my sweet baby boy into the world. Benjamin Nicholas was born at 8:05 am on Monday morning April 16, 2012, at 8 pounds 12 ounces, 21.5 inches. He was a week and a half early.

Early last Monday morning at 3:30 I woke up having intense pains, 3 minutes apart. I think either our new comfy bedding kept me sleeping through the early contractions, or that labor must have come on really quickly. I jumped in the shower and washed my hair before realizing I wouldn't have time to dry it, things were speeding up and intense! I called out to Jon to wake up and call the doctor, and minutes later we were in the car headed to the hospital.

Lilly was with her grandparents for the past week, coming home that night, so we didn't have to worry about her. Every day that she had been gone, I thought I'd have the baby, even though it was early. Finally I was just so ready to come home, that Sunday night when I went to sleep it was the first time I thought: "I won't have the baby for a few more days"; I was so excited to see Lilly the next night, and planned a long list of things to do during the day Monday - grocery shopping, cleaning, filing, etc. Jon had a crazy week, with 5 operations scheduled from Monday to Wednesday. So of course that's when I go into labor.

We arrived at the hospital a little after 4; Jon parked in the parking garage because I didn't just want to get dropped off by myself at the ER. Every contraction was more and more intense, but I was just happy to be in labor. It's funny because through the pregnancy, and especially the past few days of feeling random contractions and other things, I had been pretty whiny and vocal about being uncomfortable, but during the real labor, I think I just breathed through the contractions and everything seemed very manageable - I wasn't yelling or screaming or anything. It took a while to check in at the ER, and by 5 we were upstairs getting into the room. My water broke as I got into the bed, and the pain got a little more intense. After blood work and waiting awhile, I got an epidural. I was 5 cm dilated at 5, and was 6 at 6:30. The nurses said they wouldn't check for awhile, but when my doctor arrived at 7:45 he checked me and I was at 10 cm, ready to push. He came back a few minutes later in scrubs and after 3 big pushes, he told me to stop - the baby was coming out on his own. Within 5 minutes, start to finish, baby Ben was in the world.

I'm awful at pregnancy - mentally, physically, I'm not myself and feel horrible. But apparently I'm great at labor and delivery. Lilly took a little longer from the first contraction to her arrival, but even she just took 20 minutes to push and she was 9 pounds 8 ounces.

It took a little while to get the cord blood banking stuff done, and the nurses were cleaning Ben, and finally they handed me my little boy.

Lilly was driving back from Savannah with her grandparents, and arrived at the house late that night. Jon brought her to the hospital the next day to meet her brother. She was thrilled.

Lilly is the best big sister. She's adjusted so well; we had a picture waiting at the house when she arrived that I had drawn (stick figures) of Mommy, Daddy, Lilly and Ben - and for Lilly it's just that easy - this is our family, Ben belongs here, and she's going to take care of her little brother. She's enjoyed taking on extra responsibilities - in fact she loves it - going to get his pacifier, giving him bottles and burping him, making sure she knows where he is at all times.

Ben is the sweetest little boy. I can't tell who he resembles yet but he looks a lot like Lilly did at the beginning (which looks nothing like her now) - but he has dark eyes, huge sweet lips, and the softest skin. He feels so little compared to her though - she was just a little bigger and he's so long and skinny, he feels more fragile. He's been doing great though, adjusting to life outside - he's on somewhat of a regular eating/sleeping schedule, although he likes to be up late at night like he was in my belly. He is definitely loud when he's uncomfortable (wet diaper, hungry, etc) - but we are in love yet again and are grateful that God has blessed us with two perfect children.

Thursday, April 12, 2012

Learning and growing

Lilly writing her letters.

Lilly's haircut and first blow dry! My mom took her in Atlanta this week.

As we approach the birth day of our new little one (sometime in the next week), I can't help but look back at the past almost 6 years with my first little one, and express such extreme gratitude.

I remember the day she was born, and the doctors being concerned that she had Down syndrome. And me, the very first thing I noticed about her, being her beautiful pink lips and all the kisses we'd get from her, and all the potential and mystery locked within her.

She has not disappointed us, she's been amazing. All babies, all kids really, are amazing. But sometimes I feel like kids with "special needs" have to prove themselves a little more to the outside world. But not to their mamas.

What a smart, beautiful, sweet girl I have. But when she was born, I didn't know what she could do. I thought she'd have limits - but she's surprised me that she doesn't.

Last week, we went out for pancakes, just she and I. And at the pancake house, she started drawing stick figure pictures, as she usually does, of a family. And she drew the mommy and wrote "Momoy" underneath. I've never seen her write letters independently (aside from her own name), let alone spell things by memory. Then she drew the Lilly and Daddy and wrote "Lilly" and "Dady." Then she drew a circle in mommy's tummy and wrote "BHI" for Ben, her soon to be little brother. Blew me away - we've never talked about how to spell the baby's name, I had no idea she knew Ben started with a B but she knew it. And then of course she drew and spelled perfectly Elmo and then her friends Ethan, Wyatt, and Hiwot from school, and her cousin Julianne (spelled JuHIJK I think).

She's doing these things, and she's 5. She's in pre-K, getting ready for Kindergarten in the fall. And she's drawing and writing and spelling, and remembering and learning and being proud of herself.

I thought there would be delays, and there are some. But I didn't realize that there wouldn't be delays as well; that many things she can just pick up on and do. Or if we take the time to teach her a little extra, or in a different way, that she'd learn everything.

We had a parent teacher conference the other week and I was amazed by all that her teacher told us about what Lilly can do, what she knows. And the funny thing is, any time she'd tell us something that Lilly has a harder time with - like her attention span during story time - Jon would pipe up and say that he can't pay attention either. Or when she looks closely at her work when she writes - she actually has perfect vision but is imitating her mom because my vision is bad and I write that way. Sometimes she likes to pop into the principal or office staff's offices to say hi, and the teacher is trying to teach her you can't just go in unannounced - and Jon shared me with after how he does that with his colleagues at work.

Everything she can do we attribute to her just being an amazing hard-working kid - and all her hardships are actually brought on by her less-than-perfect parents.

We are so in love with our girl, and can't wait to meet our new little boy who will undoubtedly make us fall in love with him in just the same ways. I can't wait to see big sister and little brother as we become an even more perfect family. I feel blessed.

Tuesday, March 20, 2012

Boy vs Girl

With 4 weeks to go, I'm wondering about the dynamics of having a boy versus having a very girly girl.

We didn't purposefully raise a girly girl. I don't remember being particularly girly as a child, but from the moment I met Lilly, I knew she was a pink princess.

Lately I've been trying to get her to be slightly more gender neutral. A) Because we're about to be a split household of 2 boys 2 girls, and B) because she has a lot of boy friends at school and I want her to be able to easily fit in with both the girls and the boys.

But is it nature versus nurture, in what kids like or respond to?

Recently I got my first Kate Spade purse. It came in the mail, and while it's definitely very nice, it feels a little too much to me. (I'm a Target purse girl; a splurge to me is a Banana Republic purse once every couple years.) As I started to examine it to see if I could actually feel comfortable with a nice purse, Lilly took it from me and said "Wow, I like my new purse." Then she looked inside, and asked for a wallet and money.

She wasn't raised on fancy things, yet she somehow looks at them and appreciates them in ways that don't feel natural to me. And by the way? She's been carrying that purse nonstop for 2 weeks. Like, everywhere. I've had to convince her to leave it in the car instead of taking it into school in the mornings.

I've also been trying to get her to watch more gender-neutral movies. While I love Tangled and Princess and the Frog and Enchanted, for the past couple months we've been pushing Muppets and Toy Story on her. And she definitely appreciates them as well. I even got her little Toy Story figures for the bath. (She has a group of "everybodies" that she plays with in the bath which includes Sesame Street characters, princesses, Winnie the Pooh, etc.) But, I think I've realized - you can only do so much to shape your child with what they want, and how they relate to it. As much as she completely loves Toy Story - and she certainly does - I realized her favorite new bath game is having Woody and Jessie lie on a washcloth as the "girl and boy", while Buzz Lightyear plays Mary Poppins and sings "Feed the Birds" to them. This girl is not going to be persuaded to play superhero with her new toys.

But we'll see, in a few weeks she'll start seeing more blue, and maybe in the car we'll stop listening to as much Broadway and start doing more gender neutral songs and activities. But as hard as it was to adjust to Lilly's girliness, I think I'm going to find the boy-world even more uncomfortable.

a family

I love things like this.

Loving Lilly, living with Lilly, being Lilly's mommy, raising this beautiful girl, is the easiest thing I've ever done. The most natural. It's the one thing in my life that I've never questioned, that has always made sense to me. She made Jon and I a daddy and a mommy, she made us a family.

She makes us prioritize. And I don't mean by teaching and therapies and thinking about the bigger picture. But because of her, we sit and laugh. We plan - from vacations to the theatre to doing anything that inspires us to make the most out of each day, each moment. Appreciating each other and all the little things.

We go to plays, we go to the movies, we go to restaurants, we go to Disney World and Europe and all over New Zealand and the US, to the beach, anywhere, because we love it - and it's what families do - but also to show others that life doesn't change. It's not hard. It's not hard to take a baby which God has given to a marriage and love it and just live life. It's not that everything is always easy 100% of the time, but debating with a 5 year old over bedtime is certainly not unusual, and the hugs she gives me once she's ready for bed are priceless. It's worth it, she's worth it, and no one should be defining the worth - or the worthiness to live - of a child anyway.

When she was born, I didn't know what exactly to do with the hopes and dreams I had of a typically developing child. But knowing her, loving her, watching all that she is and can be, my dreams are somehow bigger, grander. She can move mountains, she can influence, she can touch many lives; and she makes so many people so very happy. I can be frustrated with the ordinary momness of life moments, and then she'll do a complicated puzzle without any help - something I questioned even recently whether she'd be able to do - and suddenly I'm so proud in a way that I never had experienced pre-Lilly.

She makes us happy, and we make her happy, and thank God we exist together, as a family.

Monday, March 19, 2012

God Bless the USA, by Lilly Sherman

Every morning, my sweet girl gets to school, goes straight to the gym, and gets into line with her class. Each grade, from the 3 year olds to the 8th graders, are lined up just like her pre-K class. The principal stands in the front and asks for announcements from the students - anything from birthdays to teeth falling out to new shoes to upcoming vacations. After a few minutes, the kids all bow their heads to pray, followed by the pledge of allegiance, and a patriotic song, which changes each month. Finally the teachers make a few announcements and a child is picked to tell a joke of the day. The children then walk out, grade by grade, to their classroom.

This morning routine is exactly what I wanted for my girl. Sometimes she gets overwhelmed - standing for 10-20 minutes is a long time, and sometimes it's hard to pay attention.

But standing with her friends and the school and many of the parents as a community, listening to the kids share special moments of their lives, watching everyone pray together, and seeing the entire school - no matter what each individual's political beliefs - be thankful that we live in such a great country, is beyond touching. Aside from my morning cup of coffee (which I gave up for just the first trimester), it's the best start to the day.

This month, the patriotic song is Lee Greenwood's "God Bless the USA." First day I heard it, I flash backed to being a girl scout and singing it around the campfire. Then I remembered how cheesy it is. And on the second day, something changed.

The kids came up with signs to go along with this song. And they started letting some of the kids go up to the front to perform it, in front of the school, while everyone else sings and signs along with their classes. An enthusiastic Lilly is picked every day (or, she volunteers herself and doesn't take no for an answer, not sure which is the case). But each day she is up in front of a few hundred people (in the spotlight, where she thrives), singing her heart and soul out, about how proud she is to be an American, where at least she knows she's free, and she won't forget the men that died that gave that right to her. It's a sight to see, and I couldn't be more proud.

It reaffirms to me, each morning, that we are in the right place now. What more could a mom ask for, than raising a happy, positive, religious, patriotic, appreciative little girl?

Friday, March 16, 2012

Same and different

One of the reasons why I think pregnancy has been hard on me this time around - aside from feeling bad physically 24/7/9months - is because it's made me aware of things I hadn't really thought of before.

Like, pregnancy generally, genetic tests, abortion, etc. Last time we went through our pregnancy, had red flags raised by tests we hadn't wanted, and decided to love - and raise - our daughter regardless, while feeling sort of sad and lost during the pregnancy itself, and then meeting her and falling into deep love and never turning back. But this time, we're on the other side. We didn't do real "testing" but we did the normal two ultrasounds to look for anything major (to be prepared for at birth) - but this baby is totally healthy. And it's strange because in some ways it makes me sad. That in theory we should have relief that this child doesn't have a heart defect like Lilly did, or potential medical complications. Because honestly I don't think Lilly is anything "less" than she should be, and I don't like going through a pregnancy where people are excited that this baby doesn't (probably) have anything chromosomal or medical going on with it. I literally cried through my 20 week ultrasound, as they showed me his perfect heart. I felt such a protective connection to Lilly when she was in my belly, and this time the baby is just... normal. And so is Lilly, but you know what I mean.

And his normalness is putting a spotlight on Miss Lilly and her extra chromosomes, which is awareness number 2. Maybe this is how parents feel who first have a typically developing child and then a child with special needs. But Lilly is our first, and for almost 6 years she's been our measurement of what a normal little girl is like. She's been amazing, funny, silly, beautiful, smart, perfect, and she still is. She is unique, but she's grown with us as we've grown with her, and she is exactly who she should be, and I've never really questioned anything. But now with this new baby coming - who will most likely be like the "average" kid out there, it makes me think about the ways our lives are currently just a little abnormal. And not in a bad way, but I just never really thought about Lilly's differences, or my differences in parenting because of her. And I still wouldn't change anything even if I could - I really think every child should be like her, and not the other way around - but it does make me look at things a little differently. And it makes me realize that - in some ways - being her mom is a little more work, or a little different, than what other moms go through - but in the same way I totally think being her mom is a lot easier and we have a lot more fun. Today I read this article 7 things you don't know about being a special needs parent and so much of it is true for me - as much as we're having the time of our lives with Lilly Lou, it is exhausting, it is a lot of work. But oh my goodness, the rewards... For example other parents with kids Lilly's age are just having them go to school, pick up knowledge, and being confident that they'll succeed. But each day I feel like there's not a moment that I'm not trying to teach Lilly something, shape her life, give her confidence... and she's doing amazingly so there's definitely huge benefits- but how much do other parents take for granted just being on autopilot in so many ways, when I feel like I'm in a time-crunch pressure cooker trying to optimize Lilly's potential?

And it's not necessarily the "baby" that's pulling out all this awareness - but I feel like we were able to live in Lilly's World for 6 years, and now we're going to open it up to make it Lilly and her Brother's World. Change is uncomfortable sometimes - but as much as we've had major changes many times in the past few years, we'll do it well. Interestingly, Lilly is the one who takes adjustments the easiest, and I'm sure she'll guide us through having this little baby becoming part of our family with the grace and charm that she always does.

Tuesday, March 13, 2012

this and that

It's been a couple months since I last blogged. Partly because I don't know if I have anything to say, or maybe it's because I have too much to say and don't know where to begin, or it's too much to put out here in the too-public-blog-world.

I'm not good at being pregnant, for one. I'm great at actually growing a huge baby in my belly, but I feel sick, uncomfortable, dizzy, and just not myself for 9 months, and I don't love feeling this way. And yet while whining about how crappy I feel - physically and mentally - I'm thrown into the reality that things could be a whole lot worse. A friend recently lost her little boy - a day after he was born. She is amazing and he was such a strong fighter, and I'm a horrible person for complaining about all that's going on with me, when meanwhile an incredible mom is missing her little one with such intensity that I feel the pain of his absence too. I'm continuing to pray for this family and think of their sweet angel often.

And on the flip side, a family just won a court case for a couple million dollars because their child has Down syndrome, and had they known in advance, they would have aborted. The theory is wrongful life - this little girl (in her parents' eyes) should not have been given the right to be born. And yet here she is, living with them, a few years old now - I wonder if she's aware of how much she wasn't (isn't?) wanted by them?

I'm not saying having a child with Down syndrome is super easy. And finding out the news is a complete shock, no matter what your beliefs. And 90+% of people who find out during pregnancy do abort, although it still makes me sick to think about it. But oh my God, as soon as I held Lilly in my arms I fell in love with that girl. And whatever "challenges" we face by her having an extra chromosome, are hundreds - millions - of ways that our lives are also easier, better, because of exactly who she is.

It's actually interesting to me because I think I adjusted so much better 6 years ago being pregnant with a child with quote special needs, than I am this time just being pregnant with a second child. And I have to take that faith I had with Lilly - that "everything's gonna be alright" wholehearted belief - and apply it this time as well.

No matter how kids come into this world, they deserve parents who love them and fight for them, and if things turn out different than we plan, they need that support even more.

So that's just a little portion of what's going on in my head. I'm up 43 pounds, and have about a month until D-date. Baby's room is ready, the Bob double jogger is purchased (I can't wait to start moving again after baby arrives!), and Lilly is excited to be a big sister.

I'm trying not to take anything for granted - my little girl with her extra specialness who is oh-so-perfect, no matter what precedent the courts have just set; and our new little baby who is joining our family as an angel leaves another family.

And, unrelated, Lilly is learning to read. More on that later, but I am loving teaching her with tons of fun "games" and she is such an eager learner.

Hoping the next month flies by...

Thursday, January 19, 2012

everyday life

So we're back on the tv. Not crazy amounts, every day, but after a good 5 day stretch, I gave in. Lilly survived 5 weeknights without tv, but then a 4 day weekend was calling for something a little extra to fill our time.

Lilly did great though. It's not even an issue - we still haven't turned on the tv in the morning in over a week, and most weeknights, it's an afterthought if it turns on at all. Weekends are different: she can relax, unwind, watch the Muppets or Tangled or Lion King. But during the week, we've done a lot more puzzles, games, etc. It's more work on me to keep her stimulated and give her attention the whole afternoon/evening without a break, but it's been worth it.

I tried explaining to Lilly on Monday about Martin Luther King, Jr. They studied him at school last week, so he should be familiar to her. But instead, after listening to me for a few minutes, she asked to watch the Cosby Show. No problemo, little girl.

We went to the local theater's version of Hairspray on Saturday. A bunch of high schoolers performing, but it was still good. I just love the story and the music, so powerful, such a strong positive message. Inclusion. Integration. Life's problems solved by loving and dancing and singing, just as it should be. We are all more alike than different.

And finally, food. Since we've been more tv-restricted lately, it's a perfect time to insist on better meals together as a family. Mornings are just me and Lilly, but some nights Jon is around to join us for dinner, and we are sitting in the dining room these days. Lilly is helping to cook, and set the table herself. And interestingly, she is eating a lot more variety (although she seems to be eating less overall). She's not the pickiest kid ever, but she definitely has the foods she likes and the foods she doesn't. And in the past week, she's been a lot more willing to give different foods a chance. She's eaten strawberries, cereal, red pepper, squash, and zucchini, even though she formerly didn't like these foods. And she switched over to skim milk. And we've said adios to the sippy cup - which she didn't use exclusively, but we always fell back on it because it was easy for her to carry around or not spill - but now all drinking is done at the table so she's good with open cups, straws, etc. Overall, she's done a great job.