my canine companions

our two dogs - both Labradors - preceeded emma by about a decade.

they had the run of the house, the entirety of my attentions and affections, and were not only fed well, given treats, and walked frequently, but they also enjoyed quite a bit of extracurricular fun:  swimming in nearby rivers, going to the beach, playing frisbee, hiking trails, and the list goes on and on.

these days, they settle for being well fed and walked (confession: walked a tad less frequently) and for still capturing my attention and affection, allbeit less so, since they are now shared with one miss apple cheeks.

who, it turns out, adores her canine companions from whom and for whom she has garnered and given a great deal of affection.

they treat emma gingerly, with a gentle care that i have never witnessed in either of these 75-80 pound dogs. they tip toe around emma as she crawls around and between them. they are careful to never pick up one of her many toys scattered across the floor - instead focusing only on their own stuffed animals. how they have learned to discern between them is beyond me. but, they do. and, while they still try to sneak into our bedroom at night, during a storm, or when it's loud in the main part of the house, they never veer into emma's room. in fact, they treat her, her toys, and her possesions with a reverence, a sanctity that is touching.

i used to refer to my doggies as my "babies."  not in the literal sense of course, but in an endearing way because they've always been there, through thick or thin, in great times, and not-so-great times. but, i've never loved them quite as much as i do now, when i see how selfless and loving they are to the real baby in my life:  our little e.


i paint because i can

if you've read any of my recent posts, you know our little apple cheeks has had a tough time of late.

she's seen the doctor more times than i can count in the past week. been to the hospital. is on lots of medicines.

still stuffy, congested, gagging when she eats, not sleeping much, feverish...sick...

this has meant that a lot of her therapy and other activities, like Gymboree and time at the children's library in the area, have gone by the wayside.

but, there was one thing we could do today that added a little levity to emma's experience.

it was the one thing she had the energy to do:  slather her hands in some non-toxic, children's finger paints and go to town.

it was the first smile i've seen on her face in many days.

here's our little artist at work:


words matter

many of you may already be well too aware of the recent kerfuffle surrounding GQ's publication of an article in which the author likened Bostonians' fashion sense to Down syndrome. i refuse to use the exact analogy employed by the author, but suffice it to say it stung many of us who have children or relatives with Down syndrome.

lots of folks have written very eloquent letters and complaints to GQ about the use of the analogy.  I favor one, in particular, because of its brevity, accuracy, and persuasiveness.  The author is a doctor at Children's National Hospital in Boston, works with individuals with Down syndrome, and has a sister with Down syndrome - so he qualifies as an expert on the issue as far as i am concerned. you can read his discussion of the GQ article here: Dr. Skotko response to GQ article

it's worth a read not only for those affected by Down syndrome - the parents, siblings, grandparents, extended family, friends, caretakers, educators, and the like - but also for the population at large.


well, simply put, words matter.

if you turn on the t.v., read the newspaper, listen to our politicians interact, overhear a conversation at a sporting event, or simply walk or drive down the street, you are likely all too often exposed to incivility in both word and action. i am just as culpable as anyone else, so i don't say this lightly or as though i am immune from the critique.

it is entirely too easy to speak in a gossipy, hostile, unkind, derrogatory, or aggressive manner. sometimes it may feel as though general society, from the workplace to the homefront, entices us to engage in incivility in our language. why? because all too often, power, authority, exclusiveness, and control are associated with it. indeed, what follows more closely on the heels of words than action?

many likely quandry "if i speak ill of another to advance my own agenda or persuade you to agree with my argument (which is not unlike what the GQ author did), and i am successful in doing so, why wouldn't i continue to employ such linguistic tactics?"

they are only words, after all.

but when it comes to defining in negative terms groups of people by a diagnosis or a disability or a physical attribute or any other distinguishing characteristic, we run the risk not only of undermining their power, individualism, and value in our world, but we also lessen ourselves. we become nothing more than mouthpieces for ignorance at best and vitriol at worst.

we become less human, less humane, and less able to truly experience the beauty and uniqueness of every person - be it someone with Down syndrome or not.

when you really think about it, we are all the "others" to someone else. we are all divisible by gender or race or weight or socio-economic status or sexual orientation or disability or diagnosis or educational background or skill set or job sector or, or, or....the list goes on and on. some love dogs, while others love cats. some are into politics and others abhor it. some are religious and others atheists. some are vegetarians while others are devout carnivores.

we can find a reason to define ourselves by our differences in nearly any aspect of our lives. we can make others feel as though they are and should remain on the outside, or we can embrace others and enrich our tiny, self-defined worlds.

in the end, it is a choice.

so is our choice of words - and let's not kid ourselves. they matter. a lot.

so, with these humble words, i want to applaud Dr. Skotko and all of those who stand together beside and with those with Down syndrome. Who embrace them as one of "us" and do not seek to use them to distinguish them from anyone or anything in a negative or derrogatory way, even in the world of fashion.


an open letter from apple cheeks to her dada

dear dada:

well...it was bound to happen.

i grew up.

i know that you feel it happened too quickly, that it feels like you blinked and i went from fragile infant to a still-fragile-yet-stronger, rolly-polly, gregarious, fearless big girl.

i remember how worried you were in the first three months of my little life; worried that i might not make it just after birth; worried that one night you'd wake up and i would be gone. i strained to breath. you nearly lost me in the beginning. so, you would tip toe into my room, sometimes three or four times a night, just to make sure i was breathing. you were always there for me.

i remember all of the times this past year that you worked with me on my exercise ball, helped me ride my Rody Pony, assisted me with exercises to strengthen my abs so i could sit up, hold myself up, bend to the side, and eat.  you have been there for so many physical, speech, occupational, and special education therapy sessions.

you have become an expert massage therapist; learning all of the techniques my massage therapist taught you for helping me with my low muscle tone.

you have spent countless hours holding me as i slurp loudly at my bottle, pursing my little cheeks so i could get the right suction. you have prepared hot cereal and fruit for my breakfasts, steamed and seasoned veggies for my lunch, found low-mercury fish like salmon and prepared it for me for my dinners. you don't expose me to sugary or unhealthy food because you love me and want me healthy.

you have sung "the ants go marching" a thousand times because for some reason, that like no other song seems to lull me to sleep.

you have patiently held me when my tummy was writhing in pain because of my gastric reflux and my dairy protein intolerance.

you have played with drums and tambourines and triangles to teach me rythm and your fondness of music.

you have exposed me to your favorite jazz and blues artists. i have sat quietly and adoringly as you strummed your guitar for me and sang.

i have stared up into your chocolate brown eyes and felt calmed as you read one of my favorite dr. seuss books.

you make the best bubble baths ever and teach me to catch the bubbles and play with my yellow ducks.

you have rocked me to sleep. you have cuddled me. you have held me so close that i have felt safe and secure.

you have walked me through the house, through the neighborhood, on the local trails, in other states and other countries, teaching me the world. you have showed me what trees and leaves and flowers look and smell like.

you have kept me calm during countless doctor's appointments - from the ent to the neurologist, from the nurse administering my vaccines to the geneticist, you have been there by my side.

you were waiting for me after surgery and sang to me quietly, saying shhhhh, shhhh, shhhh, until i did.

you work so hard so i don't have to. you are there for me every morning, you work all day, you go to school in the evenings and you love my mama with all of your heart. sometimes you even walk the doggies and make us all dinner! you are amazing.

you make me feel loved and nurtured and cared for.

you ensure that every day of my life is one of as much joy and hope and calmness and love as possible.

you are with me and for me.

you are my dada. and, i love you with all that i am.


apple cheeks


spasms of the heart, a reprise

many of you who are faithful followers of Apple Cheeks Mcgillicutty already know of our recent medical concerns.  in Spasms of the Heart, i explained that our little apple cheeks had developed some concerning symptoms over the past month or so which ultimately led us to a trip to the neurologist.

and, then, an EEG.

and then, back to the neurologist, her pediatrician, a food consultant, and, soon, to a specialist at Children's Hospital.

that was a few weeks ago.

this past week, emma was at the doctor on thursday and friday. at the hospital on sunday. and will go back to the doctor tomorrow, monday.

needless to say, as her parents we are beside ourselves with worry, exhaustion, and overwhelmedness. we struggle to ensure that in the midst of all of this, emma has a "normal" childhood. that she is able to play, rest, eat, and feel the abundance of love that we have for her, even though she feels ill.

whether we are succeeding or not, i can't be sure.

all i know is that we'll never stop trying to give her all that we are in every instant.

i am sure that most parents feel compelled to do the same. children, childhood, that innocence, that unabashed joy, is so fragile and so easily squandered or squelched by experience or adults who don't realize the treasure it is. 

i was reminded of this recently as i sat in a waiting room for yet another doctor appointment for emma and watched another mother with her 1 year old daughter. i was struck by how many times in the 10 minutes we shared that space, that the mother told her daughter "no," "stop that." "enough," "what did i say?" when all the child was doing was exploring, asking for attention, feeling needy, and wanting affection.

it crushed me to watch another child beg for, yet not receive, what my husband and i attempt to shower emma with daily.

perhaps we do it because emma's physiological fragility is so apparent to us on a daily basis. perhaps we do it because that's the kind of parents we have chosen to be. i don't know.

all i know is that we will continue to do so, every day, EEG or not, doctor's appointment or not, therapy session or not, achievement or falling behind. we will love her, praise her, celebrate with her, engage her, and treasure her with all of the abundance we have in ourselves to give.

. . .

for those of you curious about the outcome of the EEG - it was normal! but, we have to pursue other avenues to accurately determine what is causing emma's symptoms, which the doctors agree, aren't "normal."

despite the positive outcome, the process of undergoing an EEG - like many procedures of late, from vaccinations, to eye exams, to the EEG, have been challenging. 

somehow, though, emma always gets through them (seemingly less scathed than her mama and dada who suffer heartache each time).

the EEG

the eye exam: emma seemed to like having her pupils dialated (at least at first!)


on how to drink, pick up food, and eat

it may strike some of you as ironic that for all that i talk about emma's love of good food and our culinary adventures, we have to spend a significant chunk of time on eating-related therapy.

because she has Down syndrome, emma has low muscle tone. and, this low muscle tone contributes to a number of challenges she confronts when attempting to do much of what i might take for granted - picking food up, placing it in my mouth, swallowing, holding a cup, and drinking - to name just a few.  so, beyond the learning process that any child must undertake when learning these new tasks, emma is confronted by the reality that oftentimes her body simply just won't cooperate with her will.

and, she does have a strong will. and determination. and tremendous perseverence.

so, it's not for a lack of understanding or desire or repeatedly trying to pick up a piece of cereal and place it in her mouth or drink milk from a cup that impedes her progress.  it's her physiology.

as part of emma's therapy regimine (physical, occupational, speech, and special education therapy), emma is also seeing a specialist who assists with her feeding/eating skills. this therapist teaches us things like don't even attempt using sippy cups - they are unwieldy, hard to hold, and won't promote the pursing of the lips necessary to really sip/suck out the liquid. this, of course, means that the 9 - yes, 9 - different sippy cups we have purchased in the hopes that one of them would be the right fit for our little apple cheeks are going the way of hand-me-downs to her future cousin. 

instead, we have learned that we should be using a regular straw to encourage emma to purse her lips around the straw and eventually strengthen her mouth muscles enough to suck liquid through it. once she does that, she can move on to other sippy-cup-like, non-bottle milk delivery devices.

we have also learned that we should be stimulating the inside of her cheeks with a small tooth-brush or similar object, so that her muscles "come alive" and she develops a greater awareness of them.

we were also encouraged to give emma dried fruit to develop her mouth muscles - it's tougher, yet pliable and healthy, so a good option for mouth muscle and food manipulation development.

and, we have been shown different techniques for encouraging emma's development of the pincer grasp (the use of the thumb and forefinger) to pick up a piece of food, like a blackberry or a piece of dry cereal. in addition to repeatedly encouraging it, our occupational therapist told us to try to help her to use only the thumb and forefinger to grasp something by periodically holding down the other three fingers. it seems to be working - she is getting a feel for what it's like to use only the thumb and forefinger and begin to grasp food and other items.

it may seem like these are fairly obvious techniques, but when you are thinking each day about how to teach your child how to lift her torso and move her legs to eventually crawl, or strengthen her torso so she can sit upright without flopping forward, or develop arm strength sufficient to reach over her head to grab a toy and pull on it, all of the other pieces of the puzzle don't necessarily seem so obvious or clear.

to the contrary, learning these techniques has been illuminating and humbling; there is so much we don't know. and, aside from the therapist and a handful of parents of children with Down syndrome, we really don't have other folks to turn to for advice. (if any readers have suggestions, i warmly welcome them!)

i would imagine that unless you have a child with these issues, it's hard to even conceptualize having to focus on them. indeed, from what i have been told by emma's therapists and other parents, most of these skills develop naturally over time for typical children. they require encouragement and assistance, for sure. but, not to this level of detail or this degree of intensity.

it requires daily, repetetive instruction and assistance and consciousness on all of our parts - mama's, dada's, and emma's. we have to will these things to happen. and, they do, but only because we are all focused so intensely on them each day.

. . .

in the spirit of sharing what we have learned, here are three of the food products that have helped us work with emma, particularly on the mouth strengthening, pincer grasp development, and self-feeding. of course, we use many, many others, including lots of fresh veggies and fruit -  like blackberries which fall apart easily in her mouth and dissolve.

1. Mum-Mums (a rice-husk,cracker-like product without any additives or extra flavors or sugars that is easy for her to pick up, hold, and manipulate and one of the first things she was able to self-feed successfully).

2. dried fruit (emma's therapist suggested that this is a great for us to cut into smaller pieces for her to manipulate in her mouth with her tongue and attempt to chew with her four tiny teeth. and, they are great for her to pick up on her own and attempt to self-feed). So far, we've tried dried mango and dried apricots to mixed reviews from our little apple cheeks.)

3. organic Kamut Puffs cereal. this organic cereal has no sugar or additives. just Kamut. it's wholesome and nutritious and tiny, yet sturdy, enough for emma to practice her pincer grasp and self-feed. it's really quite amazing to watch her pick up each individual piece of cereal, manipulate it in her hand and paw it into her mouth. many pieces fall by the wayside, for sure. (that's where the doggies come in) but, each piece she does feed herself is an accomplishment and forms part of her growing repetoire of skills.



well, dear readers, it seems that there is great truth to the maxim that all good plans (in this case, of mamas and dadas) go awry...

as i mentioned in taking it to the streets..., we had a grand plan this past weekend. well, more accurately, it was a grand plan to not plan.

a plan to be spontaneous.

i know, i know. there's only a little bit of irony in that.

but, really, we set out this past Friday believing that a few things were possible:

1. we could arrange for dog care for our two Labradors for the weekend
2. we could pack all of e's clothes, diapers, stroller, pack-and-play, food, toys, and books and our gear
3. we could work a full day and still manage to get on the road to a-destination-not-yet-determined and arrive at a decent hour; and
4. we could find accomodations wherever we decided to go

and do all of that in order to leave at a decent hour on Friday to start our weekend of fun.

well, as you can imagine by my silence over the weekend, that did not happen.

we both worked all of Friday, and by the time we identified all of the items we needed to pack and managed to feed emma, bath her, and get her ready for bed, we realized we simply couldn't get anywhere worth getting before midnight.

so...we went to bed with the best of intentions to leave saturday morning.

of course, along came saturday and we needed to feed and cloth emma, do some of her therapy before leaving, pack the car, and give the doggies lots of attention and reassurance that the dog walker would be coming several times a day to check in, feed, and provide them with water.

needless to say, we didn't leave the house until 10:30 or so.

but, once on the road, we naturally veered toward water. and, after about 3.5 hours of driving, found ourselves happily on the Delaware shores... 

without a place to stay.

we didn't exactly realize how much planning really needs to go into spontaneity. we parked our car, and with little e in tow, walked from hotel to hotel looking for a place with a room. after an hour, we found one. according to most of the staff at the hotels we first visited, it was the only hotel room (or room at an inn or bed&breakfast) left for Saturday night. since it wasn't a place i'd necessarily pick and wasn't worth returning to for a variety of reasons, i'll refrain from mentioning it.

we eventually settled in, let emma roam around a bit, and then headed to the beach, where her first real experience with sand and surf was a wonderful one.

and so went our weekend.

it turns out that when you have two dogs, a house, a baby, and no grandmommy to help during the trip (insert sad face), going somewhere locally, on a whim, was a bit more of a challenge than our trek to Spain (for more on that, read: on how to travel 11 days with an 11-month-old in Spain).

but, a few things made it very worthwhile. they are, in no particular order:

1. our first real glimpse of water:

2. La Placita Tacos - a tiny little taqueria on the road heading to the Delaware shore. simple, homemade, yummy food that emma adored.

3. emma's reaction when the wave came crashing at her feet as we held her tightly on the shoreline.

4. Henlopen City Oyster House and their oh-so-yummy lobster mac-and-cheese. (while emma couldn't eat this, mama and dada could, and it was good....)

5. little emma chilling by the seashore as we walked her around to lure her into her afternoon nap...

 6. Ava's Pizzeria in St. Michael's for a quick (vegan) dinner, which emma could enjoy with us, on the return home

7. this face:


taking it to the streets...

so, Apple Cheeks McGillicutty, and her namesake emma, and emma's mama and dada, are going on a little excursion this weekend.

where to, you ask?

we're not sure.

all we know is that we are packing:

1. soy milk - because e's finally transitioned from formula and can't have dairy yet, so soy it is.
2. a LOT of diapers (that really should be number 1)
3. some toys and some books
4. her sweet pea (picture to come forthwith in her favorites section)
5. some mumums (a rice husk organic snack), some dried fruit, e's kamut cereal, and some other food items for the road and eating utensils
6. a bag of clothes and toiletries
7. crayons, a drawing book, finger paints, and some markers
8. the BOB (stroller)
9. a pack-and-play
10. mama's computer and camera (and dada's even bigger camera)

and, we're going where our fancy takes us. 

we have set a budget (more on that later), identified a general geographic region, and decided that we have to be able to get there - wherever there is - by car and within a four hour timeframe, give or take a half an hour...and, that's all we have planned.

i promise to try to keep you posted along the way.

stay tuned....


up bubble up

emma turns 13 months tomorrow.

and, on the eve of this milestone, she decided to say a new word and combine two of her now four-word vocabulary.

she was in the bathtub this evening and, while playing, she said BUBBBBB   BBBBBLLEEE ....BUBBB....BBBB....BBBBUUUBBBB  BBBBBLLL.

she repeated this about ten times as she shook her hands to stir up the bubbles in her little tub.

upon witnessing this, her grandmommy did a little dance. and, well, her mama (that would be me), squealed.

then, she said




so, now on the eve of 13 months, emma can say:

dada, bubb buublll, up, and (on a rare occassion) a variation of hi. (more like hhhhaaaaaaaa).

we're so proud of our little apple cheeks.



we went shopping at Whole Foods today on our weekly grocery run. 

with emma in toe, we scoured the isles for healthy, wholesome, mostly organic foods that we could all eat together during the week - keeping in mind e's food limitations (such as a dairy protein allergy), my husband's organic-only, largely fish and fresh greens-based diet requirement, and my desire to eat locally-grown, wholesome foods.

needless to say, our shopping adventure took us two hours - which is not uncommon.

when we were standing in the line to check-out, and as my husband loaded the groceries to be scanned, i indulged in my weekly ritual of reading as many of the magazines on display as i could.

this week, Whole Living caught my attention - not so much because of the pictures or the articles inside, but more because of its title.

here i was, in Whole Foods, reading Whole Living, preocuppied with preparing whole meals for my whole family.

but, what really, does any of that mean for us? or for emma?

i think i have spent the better part of my adult life striving for wholeness - wholeness of mind, body, and spirit. i was a vegetarian for over a decade and have been a pescatarian for the better part of the last 8 years. my husband, too, has gone from vegan to raw foodie to vegetarian to pescatarian over the past 17 years. And, we have both together and separately practiced yoga, exercised, traveled as much as possible to be as worldly as possible, explored our spirituality, and tried to give back to our communities in our own ways.

yet, when it comes to emma, i am a little stumped as to what whole living really means.  is it the same for a typical and a special needs child? what makes her prosper and thrive? what do my choices regarding her health care, nutrition, and sleep habits mean for her future well being? are we imposing an impossible standard on her or doing too little?

emma eats what we eat, with the exception of dairy given her dairy protein intolerance. she also drinks soy milk and lots of water. she eats on BPA-free plates and drinks out of BPA-free cups. She plays with friends, goes to Gymboree, attends music class, and visits the local children's library two times a week or more. she visits local museums almost weekly and goes on a walk daily, weather and health permitting. she attends church, is read to, uses speech apps on the I-Pad, and plays with lots of toys.

she also has two to three therapy sessions a week - physical therapy, special education, occupational therapy, speech therapy, feeding therapy. and, she more often than not, has at least one doctor's appointment a week. in the last week or so, for example, she had physical therapy, occupational therapy, special education, saw her pediatrician for her annual check-up and three immunizations, went to the hospital for an EEG, saw a neurologist for an examination, and saw a pediatric opthamologist.

this is a lot, but not uncommon.

in that same time, she also abruptly stopped her twice-daily naps, quit babbling, and started trying to pull up to stand - a mixed bag of blessings and concerns.

i know most of this does not make emma unique- lots of kids, typical or not, have similarly-looking weeks and similar achievements and challenges.

for instance, i was talking with a friend recently whose youngest - typical - child has developed a number of concerning symptoms - symptoms of what she is not sure. she characterized it as a puzzle. trying to fit all of the pieces together and look at her child holistically in an attempt to discern what, in the big picture, all of those symptoms mean. she has no clear answers yet and her many doctors didn't either. perhaps a diagnosis would make the picture clearer?

yet, based on our experience, i am not sure.

i was thinking over all of this this evening sitting on our back patio, after emma went to bed, and as the sun was going down outside. i noticed our potted herbs. earlier this summer, my husband and i proudly planted basil, mint, thyme, oregano, parsley, lavendar, sage, rosemary, and dill. after my husband worked his magic with some great, organic soil and a few dozen worms, they started to grow to the now robust, bountiful herbs that we enjoy in our meals each week.

the basil, in particular, is pretty stunning. it has grown to the size of a small bush and is leaning very markedly toward the direction of the sun. what is so unique that makes it thrive this year more than any past, i wondered? the sun? the frequent rain? the worms? the special soil? our tending to it frequently? all of the above?

what will make emma thrive? does her diagnosis change the equation for us? though she needs the early intervention and we are firm believers in its importance and the importance of constant and preventative medical care, should we shield her from too much at any given time? should we space it all out? or should we chase down every possible concern that every doctor identifies in an attempt to diagnose random sypmtoms and head off any larger issues that could preclude her growth and development? what does it mean to have balance of mind, body, soul with a Down syndrome diagnosis?

i don't have answers to this.

for now, we've been focused on cultivating as constant a smile on emma's face as possible, as hearty a laugh as possible, and  as much contentment as possible in her daily life. we've celebrated her daily joys and attempted to empower her to confront her current and future challenges.

is that wholeness?

i certainly hope so.


an apple cheeks food journal: week of july 4

if you had a window into our home for a week, you would be witness to lots of mayhem...particularly around emma's meal time.

she gets jazzed. she gets razzed. she gets pretty darn excited about food.

when she's hungry, once she's sitting in her high chair, she goes mad for food. she pounds her fists and squeals and laughs and waits hungrily for the first bite.

and, when you give it, you instantly know whether you did well or not.  meaning, the food passes our little apple cheeks' refined culinary sensibilities or NOT.

so, in the spirit of sharing in the hopes that someone out there might glean something from our little e's food intake habits, here's some of what has worked in the last week:

exhibit 1:  the veggie medley
verdict:  WORKED, resoundingly worked.


some fingerling potatoes
some carrots
some cherry tomatoes
some yellow heirloom tomatoes
frozen peas, thawed
some fresh parsely, basil, and rosemary
some olive oil
a splash of sherry wine vinegar
fresh ground pepper

steam veggies together in the BEABA. then pulse steamed veggies until semi-pureed, add peas, some fresh tomato, herbs, olive oil, vinegar and pepper. 

exhibit 2:  mama's gazpacho (adapted from a Bon Apetit recipe)
verdict: WILD success


roast four pounds roma tomatoes in olive oil.sea salt.pepper in 450 degree oven.
roast four large red onions (same as above)
roast five red peppers (same as above)
once all roasted (about 1 hour) peel off tomato skins and charred red pepper skins and discard.
poor pan juices and roasted veggies in blender. blend all.
add 2 cups of cold water to mix.
add a few splashes of hot pepper sauce
add three or four tablespoons of sherry wine vinegar.
chill overnight.

witness:  the apple cheeks stamp of approval (a contented, food-covered face)