out with the old and in with the...

2011 has been a crazy year on a lot of fronts for our little family. we've laughed, we've cried, we've rejoiced, we've mourned. and, like a lot of families confronted with coming to terms with the reality of Down syndrome in their lives, we've grown. a lot.

this time last year, i was afraid of the diagnosis. fearful that emma would need heart surgery in the very near-term. scared that she would not enjoy all that life has to offer.

she's 18 months old now. and she can walk with assistance. she communicates constantly. she speaks two languages, actually: American Sign Language and spoken English. emma eats heartily. she drinks out of a variety of sippy cups on her own now. she dances to music. she plays drums. she plays at the playground. she loves Gymboree. she is a daddy's girl.

she's not unlike any typical child i know. because, like typical children, she is also independent-minded and is proud of her accomplishments (she claps each time she learns a new word or masters a new skill like stacking blocks or putting things "under" something). she gets sick. she cries. she says no when she doesn't want to do something.

emma is multi-dimensional. she is not simple.

and, it's taken us a while to really grasp that. because, truth be told, when emma entered our world in 2010, we had a lot of pre-existing notions about what Down syndrome would mean for her and for us. 

in 2011, we learned to throw most of those notions out the window.

now, we realize the main challenge is building a community for emma that will embrace her and love her as we do - without reservations or discomfort.  we've found that to be so much easier than we ever believed in some ways, and in others, much harder.  in some instances, the folks who we thought would be participants in our lives - our daughter's life -  haven't.  yet, folks we didn't even know would be in our world, have appeared. and, truthfully, i think we've pulled away some not knowing how to navigate our new world.

at the end of the day, as i reflect on 2011, i know we're tremendously blessed. emma is loved so much by so many, it often renders me speechless. and, we are so grateful for all of those well wishes, kind emails and comments, and old and new friends.

so, thank you. happy new year. may 2012 be a blessed year for you and yours.


an emma-zing month

given our silence over the past month (profuse apologies; it's been a hectic time), i thought you might like to know what miss emma has been up to.

here's the top ten in order of frequency:

1 surgery from which she is still recuperating.
2 seasonal children's train rides during which she waved at all the passers-by.
3 rounds of antibiotics.
4 plane rides in route to and from the home of her great-grandma and grandma and grandpa in Louisiana for Thanksgiving. such fun!
5 day trips, including Middleburg's most awesome holiday parade which features lots of doggies and horses; a visit to the Baltimore Aquarium; a tour of the region's art museums; enjoying a campfire and socializing with other kiddos at an area vineyard (that is super child and doggie friendly!); and visiting area orchards for seasonal fare. 
6 doctors visits completed.
7 new words spoken: under, duck, out, in, down, diaper, and hat.
8 gymboree art and play classes attended.
9 steps taken while holding my hand.
10 (times 2 plus a few more!) new words signed: thank you, please, sorry, sleepy, wash, bath, apple, horse, hat, mama, dada, grandma, brush, go, stop, up, down, cereal, banana, carrot, me, you, cold, hot, baby, signing, teeth, drink, and time.



the best two birthday gifts i have ever received:

1. for the first time, emma stood on her own on my birthday for 5 seconds, clapping and smiling the biggest, toothiest smile i've ever seen. such joy!

2. my husband, whose day is typically full of work and school and related responsibilities from 5 AM until 9:00 PM every day of the week, took the entire day off to spend it with me and emma. we lunched leisurely, we ate cupcakes, we worked with emma on her physical therapy, we celebrated with some of my family, and we went to dinner. i couldn't have asked for a better day.

i am so blessed.


border crossings

i was away on work travel all week.

in a part of the country where there is big sky and small, but fierce mountains.

where contrasts are stark; the land hard and dusty and pock-marked with prickly cactus, the pregnant sky at once blue and vibrant, heavy and ominous, seeming to foretell of what lies just beyond the borderline in the distance.

i thought about emma constantly while i was away. about how parenting her, too, is such a study in contrasts. countless hours dedicated to encouraging her independence, curiosity, capacity, vigor. countless hours inadvertently spent sheltering her from what (and who) lies outside, beyond the walls of the cozy cocoon we have created for her.

. . .

i recently read a blog post by another mom embarking upon pregnancy - this one particularly hard-won, after years of trying without success.  now pregnant, she wrote of her recent amniocentisis and the fear she felt waiting for the results. her fear of being told that there was a flattened nasal bridge, a thickened nuchal fold, an extra chromosome, and having her dreams crushed, her hopes splintered like some cruel joke.

part of me understood all too well what lies at the heart of that fear. another part of me, though, now on the other side of the border that lies between inexperience with Down syndrome and having emma bless my world, was hurt by the language she used.

i pondered how she could speak about a child - like my child - with such horror, such dread. beyond no longer understanding such a dehumanization of individuals with Down syndrome, i also no longer have a tolerance for it.

emma is many things (gorgeous, precocious, inquisitive, capable) but she is not a mere compilation of physical traits. she is not only an extra chromosome. not a simpleton. not an always-happy court jester. not a one-note wonder.

she is as complex and interesting and engaging as any child.

as all children.
. . .

on the other side of the once-seemingly impassable divide between my own ignorance and today, i am coming to understand that emma is not really the one with special needs.

she is special, for sure.

she has needs, no doubt.

but, emma can learn and do and be. i am realizing that the challenge is for me, for us, to learn how to teach her in a way she can understand. to accept her in a way that honors her humanity. to embrace her as we should and would any other child.

if i, if we, fail to meet that challenge, we are the ones who are delayed. not her.


information overload

i've been drowning in an information overload. i have found that i have access to so much information, that i don't know how to assess the value of that information to me, to my life. and, oftentimes, it seems that despite the great quantity of information i have access to, the less i feel informed about what really matters to me, my family, my community.

i read a lot. and, most of it, i read online.  newspapers. childrearing websites.  developmental disability websites. health websites. design websites. foodie websites. cooking websites. work-related websites. travel websites. dog websites. clothing websites. homegoods websites. various blogs. the list goes on and on and on.

recently, i have been asking myself how i place a value on the information i can and do access on a daily basis? how do i identify the golden nuggets of information that serve as a value-add to my life, not a time-drain? how do i discern what enriches my world from that which simply overloads it?

if you were hoping i had a clear answer to this conundrum, i don't. not really. it's more a reflection-question for you.

but, i have reached a little bit of clarity on the matter, for me anyway. i am just starting to realize that the information i find most enriching is that which comes from each of you. meaning, my community of friends, family, and strangers who are not quite strangers anymore thanks to the connection we share as parents, as parents/friends/family members of someone with a developmental disability, as individuals doing the best they can to provide as enriching a life as possible for themselves and their families.

that the information i find most valuable is that which you share with me - the parenting advice. the tips on typical health ailments confronting children with Down sydrome. the advice about what doctors to frequent in my hometown. the heads-up about special events about town. the advice on good physical therapy interventions. its the non-philosophical, practical, day-to-day, home-tested tools and information that other moms and dads in the know share freely, openly, willingly in their blogs, chat forums, and networks.

and, to think that i had never really read a non-newspaper-linked blog before a few months ago when i started writing this! the other information matters, too, of course. but what really feeds me right now is what i learn from each of you out there.

so, thank you.

how about you? where do you go for the information that enriches you most? is it a newspaper? a blogpost? a theme-based website?


simple pleasures

our recent excursion to Whole Foods.

it's an oasis of food and friends for emma to explore. we touch and smell and name the fruits and vegetables. we watch the visiting cook prepare a yummy meal. we say hi to the friendly customers. and, we grab a quick snack.

this trip, it was a pretzel.  have you ever seen a pretzel bring so much joy?!



emma doesn't realize it yet. at least, i don't think she does.

but, she's a tremendous achiever. she achieves nearly every day. not unlike a typical child, actually. 

i am learning that all kids at this age grow, absorb, learn, and practice new skills on a daily - even hourly - basis. it has been a real revelation for me to realize this. it's like watching a flower slowly unfold, one lovely petal at a time - each petal its own study in beauty. each petal it's own achievement. 

since emma is an only child, we make a conscious effort to expose her as often as possible to other kids - typical and special needs alike - on a fairly constant basis so she can learn not only alongside them, but also from them. so, each week, emma now goes to Gymboree Play and Music, attends a class at Imagination Stage, and visits the local children's library (which is a real gem- founded in 1893 and one of only three public libraries in the country established just for children).  and, she gets to engage with new friends and family members as often as possible.

when she does so, emma observes. she studies. she watches intently. she even stares, sometimes.

she absorbs it all. learning from her peers. watching them walk and talk and run and play.

and, she practices constantly, now starting to mimick much of what she observes others doing. but, as i've written before, emma's physiology sometimes fails her, belying her cognitive abilities. because she understands. she gets it. and she wants it. she wants to talk. to walk. to sit in her own chair without falling forward. she wants to stand on her own without needing support.  but, she isn't there just yet.

so, we keep providing opportunities to study, observe, learn; emma keeps observing; and together with our assistance and that of her physical and occupational therapists, emma practices hard. she's now standing on her own, while leaning on something. she can stand up and sit down and climb stairs. she can cruise alongside the sofa on her own. with assistance, she takes a few steps forward. and, she talks all the time. we're working with a speech therapist to finess those natural skills. in the meantime, emma is a communicative rock star, telling us what she needs when she needs it with sign language. she has demonstrated an understanding of a fairly large vocabulary, which grows weekly.

and, i am very very very proud to report another huge achievement.

our little apple cheeks is now drinking out of her own cup.

as many of you have read in several of my blog posts, we've been working really hard to encourage emma to move beyond the bottle (not there yet) and onto drinking out of a cup. but, she's had a tough time lifting a cup on her own. and, because her lip closure and suck/swallow mechanisms are still weak, she hasn't been able to suck a drink out of a straw or sippy cup lip. working with a feeding specialist, we've tried various techniques to encourage her progress.

this past week, we employed a new strategy. we went back to the basics and we made several different sippy cups available to emma in the event she was thirsty or asked for a bottle. we had them scattered about her playroom and offered them to her when she asked for something to drink (aka: bottle of milk).  most of the cups have been non-starters because they are too heavy for her to lift up to her mouth on her own or have difficult-to-maneuver straws or require too much force to extract the liquid. but, thanks to emma's grandmommy, we found one that worked (after her grandmommy had the smart idea to take out the plug in the sippy cup so the liquid now flows freely without requiring emma to suck it out).

and, in the past week or so, emma has nearly mastered it. she can hold it and drink out of it and pace her drinking and breathing so she doesn't choke on the water or milk she's drinking.

we have literally cried and cheered (sometimes at the same time) watching her pick up her cup and drink some liquid out of it.  it's such a hard-earned achievement.

now, all we have to do is figure a way to discourage her strong penchant for pouring said liquid all over the floor when she's done!



Happy Halloween!

you may be surprised to hear that even though we had a Halloween costume (a gift from emma's generous godmommy) waiting and ready for miss emma, we did not dress her up this year for Halloween because: (1) she is only 16 months old and can't walk yet; (2) her bedtime is 7:00 pm - the witching hour in most towns; (3) she's sick again and on antibiotics and needs her sleep; and (4) she is just learning to chew and swallow, so candy isn't really an option anyway. and, we both had work to do this evening.

but, never fear.  our little apple cheeks mcgillicutty still enjoyed herself this past weekend.

on saturday, we took advantage of our home town's many (oftentimes, free) opportunities for kiddos. from mid-October through mid-November, the embassies of the European Union are hosting the Kids Euro Festival 2011. This month-long performing arts extravaganza (see here for more info) is hosted by the various embassies of the 27 European Union member states and brings to D.C. a bevy of wonderful performing artists for free-to-the-public, kid-friendly performances around town.

this past weekend, the French Embassy hosted a day-long event especially for special needs kids. it was designed to ensure that they had full access to the festivities, while avoiding the typically large crowds.

it was wonderful.

emma ate and danced and watched a puppet show. witness her happiness as we participated in a zumba dancing class (emma wasn't in to standing up, so we danced while sitting):


some of the kiddos came dressed in their Halloween costumes, which emma got a kick out of (unfortunately, we didn't think to bring hers). and, she met a new friend - a 16-month-old adorable boy with Down syndrome.

so, while we didn't manage to do the Halloween thing this year (we will next year, i promise godmommy), we did have a blast enjoying one of the area's many Fall festivities.

how about you? what did you do with your little one this past weekend? any fun Fall or Halloween-related events in your hometown?



friday fun stuff

hi everyone! applecheeks is officially back from an October-long hiatus. 

as many of you know, little emma has been sick for most of the fall so far.

but, we've managed to squeeze in some fun times that i thought you might like to see.  several weeks ago, in between emma's infections, matt and i took our little apple cheeks mcgillicutty on a whirlwind tour of the area's two larger, more trafficked family farms:  Butler's Orchard and Homestead Farms. 

they both have their own special charms. we visited Butler's Orchard intentionally. we only landed upon Homestead Farms by (happy) accident while we were driving around Potomac, Maryland one lovely, sunny, October Sunday several weeks ago.

both were a big hit with emma because they offered a magical combination of games, farm animals (think sheep and goats and cows and pigs and chickens and ducks, oh my!), hay rides, and pumpkins, pumpkins everywhere. 

Butler's Orchard had ponies though, which made our day there all-the-more special because emma had never ridden a pony before. and, although she didn't seem to love it quite as much as we'd hoped, we had a blast taking our little angel on a pony ride.

in fact, i think we may have had more fun than emma doing just about everything that weekend. it was just such a joy to be outside on two of the prettiest days of the year, celebrating Fall and its bounty with the light of our lives. 

it was one of the best weekends i have ever had and has made the rest of the month, which has been challenging for emma medically, more easily endured.

here are some fun photos of our farm festivities for your friday enjoyment.

happy friday everyone! apple cheeks will be back and running full steam on monday.

until then,
apple cheeks' mama.