"millions of fingers, millions of thumbs, millions of monkeys drumming on drums"

and so goes one of emma's favorite books.

"dum dity, dum dity, dum dum dum. so many monkeys drumming on drums!"

the exaltation!

she giggles when we read it. she practically bowls over in laughter when mommy tries to put a tune to it.

. . .

my sister recently shared with me a video she captured on her cell phone. it was of me, singing unabashedly to emma, as we read that Doctor Seuss book. and, again, as emma rode her Rody Pony (if you don't know what it is, you must Google it, and then buy it for the young child in your life. So fun for typical and special needs children alike!).

i watched the video in half embarassment and half awe.

who was that woman singing so freely and openly and happily? Without a care in the world?

. . .

i was struck recently by something a friend said to me. she mentioned that she loved a Buddhist (i think) notion that as people, we go leaking out little pieces of ourselves in any given moment. pieces, aspects of self that we aren't necessarily intentionally showing the world, or are even unaware of perhaps. but, we leak out those aspects of ourselves and a watchful eye, a careful study, might catch a glimpse of us that we didn't know was unshrouded, left open and vulnerable for others to discover.

when i watched that video the other day, it struck me how much joy and childlike glee was "leaking" out that i didn't necessarily know i felt in the moment - as i recall it, i was more driven by and focused on a desire to entertain and educate my daughter.

. . .

my husband and i have been massaging the idea of having another child.  as we've done so we have talked over every work/life/financial scenario. we've discussed the pros and the cons. we've identified our fears and our hopes.

but, i am not sure we've really assessed fully the degree to which these wonderous, joyful, and contented aspects of ourselves - who we may not have known as clearly before emma - are rising up, coming to the surface, and slowly leaking out in our daily interactions with our little apple cheeks, with each other, with the world. how much she has caressed our souls and called upon our best selves to be present in the daily

"hum drum. hum drum. hum drum hum...."

. . .

"so many monkeys drumming on drums. dum ditty. dum ditty. dum, dum, dum."


there, there mama

i think i mentioned a few posts ago that we recently celebrated our little apple cheeks' first birthday.

and what a celebration it was!

so much food, so many friends and family, so many children running and playing and dancing and banging on instruments. it was fabulous.

i was bursting with love (and exhaustion) for our once-a-baby-now-a-young-girl.

truth be told, i think the day was better for us than for her, though. she was fairly overwhelmed by all the chaos and noise. she never had a melt down (she has had like only 3 of those in her entire year of life) but she kind of shut down.

when encircled by several dozen of her parents' friends and her extended family, listening to everyone singing HAPPY BIRTHDAY TO YOU. HAPPY BIRTHDAY DEAR EMMA. HAPPY BIRTHDAY TO YOU, and face to face with a huge, round cake with as many candles as it took to spell the letter E, emma was wide-eyed and silent. she kicked the cake instead of smashing it. and, when i gave her a tiny bit of icing to taste she wiped it off her mouth.

(we are learning she prefers sour tastes over sweet, thank you very much)

it struck me that this little girl who literally tumbles over in exuberation and joy grows so silent when confronted by it on a large scale in return. 

and therein lies the rub for me. she gives us SO MUCH LOVE. i don't know how to give it back properly.

i do it by trying to provide her opportunities. by creating a loving, safe home. by celebrating the joys and supporting her through her struggles. but to really give back all the love she gives us. all that joy?

i am not sure i can. i am concerned that i don't know how to ever repay the debt that emma has created in my heart. i feel a constant need to give back to her what i gain.

i wonder sometimes if i would feel differently if she were a "typical" child. would i feel as much love? or a different kind of love?

the kind i have for her is such a grateful love. i am grateful for her accomplishments, large and small.

for example, if you were to stop by our home on any given morning you would find that we cheer- quite literally- when she manages to paw a fist of cereal into her mouth, after repeated attempts to transfer it back and forth between her hands, dropping it, occassionally giving up on it, laying her head down on the table, with her mouth open like a bird trying to scoop up the food to no avail. but then, she'll try again and somehow manage to shove the piece or two of cereal in her mouth.

and i squeal with delight. (not her, mind you, me)

i am SOOOOO proud of her endurance, perseverance, repeated attempts against her physiology to do what often comes so much easier for some of her peers.

and she just looks at me in return with this really mom? look and then slowly gives me a little grin like she gets what an accomplishment it was and places her hand on my cheek as if to say

there, there. everything is going to be alright, mama.

and, i am starting to trust that it is.


and another one bites the dust...

i am a new parent. i haven't done this before.

and, although our two dogs continuously give us a run for our money (literally and figuratively), they didn't really prepare me for this role.

they prepared me to be a good caretaker. to put their needs before mine oftentimes (i gave up on happy hours and after-work dinners over a decade ago after i brought the dogs home). to create a home that was comfortable for them. to exercise them and provide them proper nutrition and medical care.

but they never prepared me to be The Advocate.

i went to lawschool for that. i have practiced law to do that. but, i never understood before now how much i would need to employ those skills in my role as a mother.

.  .  .

because emma has Down syndrome, she qualifies for services provided by the states pursuant to the federal Individuals with Disabilities Education (IDEA) Act of 2004. 

i'll refrain from getting into the details of the Act here. but, i will say that pursuant to the Act, emma qualifies for a host of early intervention therapies to ensure that she is best equipped to thrive, including phsyical therapy, occupational therapy, speech pathology, and special education, among others as needed.* 

this past week, a series of concerns emma's father and i have raised over the past several months resulted in a summit of sorts between us and the director of emma's early intervention program in the county where we live and others on her therapeutic team.

this is not the first time we have had to have a formal meeting with the team. before, though, it was via telephone. 

to date, our advocacy has resulted in the replacement of three of emma's therapists. this isn't because we're picky or they are poor at what they do. it's because there has been a serious disconnect between the implementation of the early intervention program in emma's case and the intent of the law - both federal and state.

that i had to outline the intent of the IDEA Act and corresponding state law, the criteria for eligibility for services, the types of services provided, and our rights as parents in the therapeutic process was disheartening. that it had to come to this after repeated conversations and formal requests for action was exhausting. that it required our leave from work to meet, in addition to the copious amounts of leave we find we must take to attend emma's doctors appointments and therapy sessions, was stressful.

that i had to advocate for my daughter so vociferously, so formally, to get basic needs met in compliance with the law was overwhelming.

and, i am a lawyer.

i think of all of the parents who either don't know the law or don't know their rights to ensure its enforcement. i think of all of the parents who don't have good employers who provide the flexibility to attend such meetings(also in compliance with other, pertinent laws). i think of all of the parents who don't know how to navigate the system to even have such meetings.

outreach and education are fundamental to ensuring that all parents are aware of their rights and are able to exercise them.  whose role that is may be debateable - is it incumbent upon the parents to find out? or is it the responsibility of our federal and state administrations to educate families on these matters? not-for-profit organizations in our communities? all of the above?

there aren't easy answers for this one. but, at the least, we as parents can educate each other- from one parent to another - about what opportunities and rights our children have, special needs or not.

because in the end, if we don't, it is our child who suffers. a child who is dependent upon us to clear the path that lies ahead of her, so that she can advance through life with as few obstacles as possible, as well equiped as possible to tackle the challenges and take advantage of the opportunities.

advocating isn't easy. it's hard and tiring and inherently conflictual sometimes.  but, i am slowly learning that it is one of the most important aspects of being a mother.

whether i like it or not.

*general disclaimer here: nothing in this post (or this site generally) is, nor is intended to be, legal advice upon which you should rely or act. you should contact your attorney to obtain advice on any particluar problem or issue.


on how to travel 11 days with an 11 month old in another country

As I mentioned in my last post, our family traveled to Spain for 11 days or so recently. We flew into Madrid and then rented a car, traveling through Granada, Marbella, Sevilla, and Cordoba where we stayed several nights in each locale (with the exception of Cordoba which was a fly-by of sorts). We also swung through Gibraltar and Jerez de la Frontera for a day. 

We decided it would be a good idea to show our little apple cheeks the world. And why not start now?

Well, i can think of a few reasons to not start at 11 months:

  • the five pieces of luggage we had dedicated simply to her which the United representative said was going to cost us an extra 180 Euros to leave Spain upon our return
  • the large quantities of formula, food, medicine, and other provisions, like diapers that we had to amass and take through security multiple times
  • the massive Bob Ironman stroller we took through metal detectors, x-ray machines, and which had to be hand-screened for explosives or other such matters, delaying our rushed movement toward the boarding gate by a good twenty-five minutes
  • and standing in numerous lines for tickets, boarding, luggage, immigration with a squirming 11 month old who did anything in her power to climb out of our arms and onto the stranger next to us or better yet, roll around on the dirty floor below
BUT, i can think of many, many more reasons to start at such a young age.  Even at only 11 months, Emma explored Andalucia as much as we did. She saw the sights. She ate delicious new foods. She spent lots of quality time with mommy and daddy (and grandmommy), enjoying the family time. She got lots of fresh air in beautiful parks and by the Mediterranean Sea. She was exposed to beautiful art, architecture, and music.  She heard another language for nearly two full weeks and left babbling different, new sounds. And, she was our little Ambassador, reaching out to others in ways we couldn't have alone. She drew the kindest strangers to us, who welcomed us, embraced us, and enriched our journey through a gorgeous country. 

So, for what it's worth, here are a few of my recommendations based on our successful trip:

1. Pack EVERYTHING she owns and take it with you. You will need it. We had a bag of toys. A bag of diapers and creams and wipes. A bag of clothes. A stroller. A pack and play. A bag of books. A bag of formula and bottles and organic food. And, a (smaller) bag with her medicines and vitamins.

2. Buy the Ear Band-It Earplug Retaining Headband. What's that you ask? If you have a child with chronic ear infections, like Emma, you'll want to get it. And, even though Emma recently had ear tubes placed in both of her ears, we were still concerned about water getting in them should we decide to take her swimming. We never did because the water was too chilly, but we did use the Ear Band-It for another great purpose:  in flight.  We flew on an overnight flight to Madrid.  Before we boarded the plane, we put the earplugs in Emma's ears and then covered them with the Ear Band-It. Since we were flying around Emma's bedtime, we didn't want her to be over-stimulated by the noise of the announcements, other passengers, and ultimately the plane itself. The Ear Band-It quieted the entire journey for her to a doable decible level, and she ended up sleeping almost the entire flight.

3. When flying, REQUEST THE BULKHEAD SEATS. Why? With an 11 month old flying at her bedtime, you want the option of using the airline-provided bassinett. You may already know about this, but I had no clue before the wonderful Iberia Airline flight attendants told us about it.  They asked some other passengers to swap seats with us, and before you knew it, we were in the bulkhead seats, with a bassinett attached to the airplane wall, in which Emma was suspended, happily, and adorably to sleep throughout the flight. They gave us a blanket and a cute little in-flight pack of wipes, diapers, and an Iberia bib. Great memorabilia when she's older.

4. Request a carseat ahead of time from the rental company. Avis had a great one which Emma fit in nicely.

5. Bring a Bob Ironman stroller. First, they are collapsable. Second, they are feather light. Third, they are easily loaded up with your purses, diaper bags, and purchases for the day. And, baby still enjoys a lovely ride, with shade from the sun. It also fits nicely in the back of an overloaded rental car since the wheels come on and off easily. 

6. Bring a decent sized blanket you can plop down on an airport floor or a hotel floor and she can crawl around and play without concern about germs. You can always have the blanket laundered at a hotel or you can even wash it out in the hotel sink and dry it overnight as needed.

7. Keep her on U.S. time. Emma usually goes to sleep at 7:00 each evening and typically wakes up nearly 12 hours later, at 7:00 in the morning, give or take 30 minutes or so. While in Spain, we kept her on the same schedule, so the transition back would be as seamless as possible. It worked. She went to bed at midnight, after we enjoyed our family outing for tapas (which she loved, but more on that later) and woke usually around 11:00 AM, give or take 30 minutes or so. So, she was usually well-rested and able to join us for all the meals without being over-tired or off her food, sleep cycle. When we returned stateside, Emma transitioned back into her 7 to 7 routine automatically. 

8. Make her a part of the food enjoying experience.  Spain's culinary scene is fun, filling, and delicious. Emma loved it as much as we did. She was able to slurp up gazpacho when we did and partake of the fresh fish (in moderation) and fresh fruit and veggies. She ate at the table with us and was even occassionally given a highchair. She loved it. And, we loved sharing the experience with her.

9. Bring Grandmommy. I can't stress this one enough! Emma's grandmother joined us on the trip, providing an additional set of hands to carry our many baby bags, hold Emma, and provide care when my husband and I wanted a little down time.

10. Above all else, don't be fearful that because she is young, or because she has special needs, that the trip is not doable. Emma has heart issues, so we were cleared by her cardiologist and pediatrician before traveling. She also has ear issues, and we were cleared by her ENT specialist within weeks of her ear tube procedure. She was on antibiotics for an infection, but she would have been stateside, too. And, everywhere we went, Spaniards embraced her and us, constantly doting on her with affection and kindness.

The trip was so easy it was surprising and opened us back up to the possibilities that lie ahead with Emma.

Not the limitations.




5 percent

Five percent.

According to the World Health Organization (WHO) and the World Bank, five percent of the world's children have a significant physical or mental disability.

This is not an insignificant sum. It represents tens of millions of children worldwide.

Yet, from the very narrow vantage point of one's own back yard, having a child with a disability can be extremely isolating.

Even in this age of blogs and listserves and online social networks galore.

Yes, there exist an abundance of means to communicate with other adults who have children with disabilities. We can network - and doing so is vital for information sharing and community building - and we can engage in group walks and play dates and substantive workshops.

Yet, for all of this interconnection, when you give birth to a child with a serious disability, you feel terribly, painfully alone. I speak from personal experience of course and don't pretend to speak for every parent out there who has gone through a similiar situation. Yet, I gather from my discussions with other parents with children with disabilities that many of you out there have felt similarly.

I guess it's feeling that your child already, before even being able to perceive the world around her or introduce herself to it, has been labled by society as "the other." The One Not Like Us. Different. Special. Delayed. Slow. Disabled.

And, in truth, my daughter is many of those things. Yet, she is none of them, too. She is unique and glorious and gorgeous and happy and kind and engaging and intelligent and curious and adorable and gentle and I could go on and on.  Every day she presents to us a new gift or facet of her personality that we did not know the day before.

Yet, from day one I have had the sense that her life will consist of largely looking from the outside in. Not quite separate but never really fully a part.

But, I am slowly learning that perhaps that is me I am talking about- me as the parent of a child with a disability - and not really her at all.  Emma has a community of family and friends. She is embraced everywhere we go. Her father calls her our little Ambassador, because wherever we go, she attracts smiles and kind words and affection and really the most warmth I have ever experienced from strangers.

A few weeks ago, we traveled as family to Spain. We were in Madrid, stepping out of a cab, to go into our hotel on the Plaza de la Independencia.  If you've been to Madrid, you know this Plaza- it's large, circular, highly trafficked, and at the entrace of the Parque del Retiro and near the major museums.  It is in the heart of Madrid. 

We walked out of the cab and while my husband and Emma's grandmother were gathering other items, I held Emma and looked toward the hotel.

I was frozen- captivated by a framed poster in front of our hotel entrance.

On it was the picture of a young girl, smiling from ear to ear. She had Down syndrome. I was stunned- what a coincidence. I said look Emma, look at the pretty girl.

Emma was unphased. But, I was rattled.

Then when I turned to say something to my husband, there was a mother and father, strolling by looking at the picture. In their stroller was a child with Down syndrome. The mother asked me how old Emma was. Her daughter was two. We chatted briefly about their different heart conditions. She wished me well. I did the same.

I looked at my husband in awe- how could this be?

Then, I looked farther ahead and saw dozens of photos on large posters scattered throughout the Plaza- pictures of infants and young girls and boys, of pre-adolescents, all children living in and around Madrid whose parents were part of the Down Syndrome Network of Madrid and who wanted Madrilenos- and all those who visited Madrid - to see their children not for their diagnosis, but for their beauty, their talents, their youthful innocence, their humanity. To see beyond the physicality of their diagnosis and see their essence.

I walked the entire plaza. My husband did the same, taking photos of the exhibit. I ran across various families of children with Down syndrome, some of whom were pictured in the exhibit and standing proudly in front of their photo. 

I cried openly and happily.

I have never, in Emma's first year of life, ever felt more of a sense of community, understanding, acceptance, or appreciation than I did in that moment. 

Perhaps that is because I felt that Emma was not separate. Not the "other" but instead part of a large, beautiful world where others who looked like her and struggled similar struggles as her were, for a brief moment in time, in the majority. They were the ones on the posters - not fashion models.

After staring at the 120 photos long enough, watching people eat and drink and chat around them, it started to feel like the norm - like images of people with Down syndrome was common place and "normal."

It started to feel like as a parent of a child with Down syndrome, I was in the norm, I was OK.

That is community.


a lightness of being

nearly a year ago, emma entered our world with a thunderous clap.

i watched her from across the operating room, me in the midst of the final stages of an emergency c-section, her undergoing resuscitation.  we were a pair the two of us.  my red, life-filled blood overflowed the operating table, yet she was listless and blue. 

after an unbearably long, cold, metallic silence, i learned through my husband's eyes that something was very wrong. no one was speaking. i didn't hear emma. i asked what was happening. the doctors and nurses were tightlipped.

then, finally, emma screeched.

but before i could see her, touch her, kiss her, she was wisked away to the neonatal unit where she stayed for over a week.  a scattering of doctors and nurses slowly, cautiously informed emma's father and me about her numerous heart defects and the many other markings of her "diagnosis." 

because of the newness of it all, the shock, the grief at the time, i couldn't see - or maybe, i wouldn't see - the markings of her strength and beauty.  i saw only the curved pinky fingers. the thickened neck. the slanted, star-filled eyes. the flattened nasal bridge. the crease in her palms. the struggle to breath. the struggle to be. the struggles that lie ahead for her, for us. 

she wasn't who we expected. we had prayed for a different child.  for one who was healthy and strong.

from my vantage point, my heavy heart, all i could see at the time were her "weaknesses," her differences - the things, the features, the "defects" that would lead to a life of challenges and grief.

in truth, all i could see was me. i didn't see emma at all. i saw all of my real and perceived flaws and failings embodied in her 6 plus pound little body.  sometimes, i still do.

but, i also see this gorgeous little ball of light and love and kindness and fun. this wonderous child who with all of her struggles (and she does have them), manages to show her father and me (and virtually anyone else who comes into contact with her) what it means to live. 

really live.

to squeal with delight when she hugs her favorite doll or sees her daddy when he's returned home from work. to smile with her whole body when she wakes up in the morning and sees her mommy staring adoringly into the blue pools of her eyes. to giggle hysterically when she plays with the tamborine or drum or plays "airplane" in daddy's arms. to smack her lips voraciously over the darndest foods- from gazpacho to fennel and parsley-laden orzo, from hummus to fresh avocados.

to quietly listen as her parents say her (their) prayers at night with her ("now i lay me down to sleep, i pray the lord my soul to keep, thy shall guard me throughout the night (our adaptation to the traditional prayer) and wake me with lots of morning sunlight").

and then, when she's told she is sleepy and it's time to go to bed, she stares up at us, lets out a little grunt/squeal and flips to her belly and falls quietly, quickly asleep holding my hand tightly just as she did the first time i met her in the neonatal unit, emma laying on her back looking up with a rosey-cheeked smile through the plastic incubator, me reaching my hand in ever-so-gingerly to say hello.