Living In The Moment

I am a daydreamer--always have been, and I imagine that I always will be.  Before the iPhone opened up inconceivable opportunities for mental stimulation and entertainment, I could easily pass the time sitting in line at a busy DMV or ER waiting room by simply picking an aspect of my imagined future and letting my creative thinking run wild; I’d brainstorm ideas for our 50th wedding anniversary soiree, mentally decorate the beautiful house on a tree-lined street that we would one day call home and pick names for my future children.  Give me five free minutes with just my brain and I’ll paint a glorious picture of my years to come with the brush of my own creative thoughts.  I would say that most people are probably this way to some extent--there is something so magical about looking forward and writing the story of your future.

Moms are particularly well-known for dreaming of our children's future; we imagine them proudly marching down the aisle at their medical school graduation, picking out our mother-of-the-bride/groom dress and plan the photo shoot for their first prom—and all this in the first trimester!  So, naturally, the moment that little pregnancy test showed two lines for the very first time, my future-goggles kicked into overdrive...future Halloween costumes, deep conversations about life, piano recitals and first job interviews all had their place on my mental stage.  As the nursery came together I would sit on the floor in the very middle, close my eyes and imagine holding my baby and in a single breath see her future life flash before my eyes…those were beautiful, cherished and tender moments in my memory.

However, something changed in me after that phone call with the news of Rachel’s diagnosis.  Try as I might, I just could not seem to daydream about this child.  Don’t get me wrong, I would try—but my own worries, doubts, fears and unknowns would inevitably bring any whimsical, dreamy attempts to a wrenching halt.  I would begin to envision the look on Rachel’s face the first time she got asked out on a date; the elation, the extravagant joy…wait.  What if no boys ever ask her out on any dates?  What if she never experiences those feelings?  What if her heart isn’t healthy and she doesn’t even make it to her teen years?

Crash.

I’d wrap my arms around myself, duck my head down and let the sobs loose—another daydream dashed by uncertainty.  I prayed that this would change once she was actually born so I put daydreaming about her future on hiatus until I could hold her in my arms.  And yet still, even with ten tiny fingers and ten tiny toes wrapped in a fuzzy pink blanket and nuzzled in my arms, the dreams wouldn’t come.  For every dreamy “what if” that my heart would query, my brain would counter with a sobering “what if”.  Each attempt would leave me weeping with fear for what was lying ahead.  Periodically throughout Rachel’s life I have tried again to think about her adult years, or high school years, or middle school or even elementary years and I’ve come to the conclusion that I just can’t emotionally handle the unknown before me.  To be honest, even now as I type, I can not envision Rachel past right now.  I can't see her tomorrow or 10 years from now, I can only see her as the girl that she was when I dropped her off at daycare 2 hours ago.

Until recently my inability to daydream about Rachel's future has really bothered me.  How is it that I can pick out imaginary tile patterns to go in an imaginary bathroom in an imaginary house that I own in my imagination, but I can’t visualize Rachel learning how to drive a car?  Moreover, I can imagine Kaia's high school graduation and hosting sleepovers in junior high...why can't I do that with Rachel?  I have felt robbed of this particular joy and deeply annoyed by my limited ability to push past the potential “what ifs” that living her life with Down Syndrome may pose.  I’ve pouted, cried and whined about this to God more times than I could possibly number.  Completely unfair.

In a quiet moment while watching Rachel sleep just last week, God revealed to me His beautiful purpose for closing the curtains on my imagination.  Speaking to my soul in the sweet, soothing voice that He saves for tender moments like this, He said:

“I want you to enjoy Rachel right now, in this moment.  

You spend so much time living in the future that you often miss the beauty 

of the present.  I gave you Rachel so that you could experience what it is like to stop dreaming of tomorrow and start relishing today. Don’t worry about whether or not she will experience the real and lasting love of romance in the future, soak in the passionate love the two of you share

 for each other right now.  Rather than wondering if she will be able to hold down a

 job one day choose to notice each and every one of her brilliant daily 

accomplishments.  I promise that I will take care of her future, 

if you will hold her hand in the present.”

It’s not every day that I am so keenly aware of how deeply intertwined God’s presence is with my daily life.  But those times when He rushes through my soul like wind through a forest I am refreshed; I stand in awe at the purposefulness of His love for me.  He did not choose me out of a billion women to be Rachel’s mother because she needed me, He chose me to be Rachel’s mother because He knew that I needed her.

Thank you, Father, for knowing me better than I know myself.

Facing the Cheerios Bowl

I love to watch Rachel eat cold cereal.

That may sound strange to you, although if you’ve been reading along you probably know that I have some story to share with you that makes it sound far from strange but rather inspirational, victorious and possibly tear-jerking; I will not disappoint. :)

You see, one of the blessings of having a child with special needs is receiving special services.  Ahhhhh, special services.  Seriously, I don’t know how the rest of you parents navigate early parenthood without this valuable resource!  Every other week we had trained professionals with degrees of higher education in the areas of early childhood education, special education, occupational therapy and more visit our home.  They gave us advice, worked with Rachel on daily living skills, taught us how to work with Rachel and answered my plethora of questions about babies and their development.  Sometimes these questions were related to Rachel’s diagnosis, sometimes they were a desperate plea for help with figuring out how to get Rachel to sleep through the night.  No matter the question, they always had wonderful, helpful answers backed by years of therapy experience, book learning and individual research.  I could not have done parenting without this support team.

One of the many things that I learned from our lead development specialist was how much work it takes for the mouth and brain to learn how to eat cereal with milk.  In order for this intricate feat to take place without food spilling all over the muscles need to work together to simultaneously push the solid food to the front of the mouth while swishing the liquid food to the rear of the mouth and manage to not swallow the liquid nor spit out the solid.  Then it has to tell the jaw to chew it carefully so that each component of the mouthful stays in it’s designated location.  The tongue also has to work up and down while the jaw chews and yet still help to create a seal at the front of the mouth to keep the food and liquid from oozing out of the mouth.  It is a complex muscular task that we tend to take for granted.  To a typical mouth this action is fairly intuitive and doesn’t necessarily take training, but to a mouth with low muscle tone and oral-motor skills that like to do their own thing, eating cereal in a civilized manner is nothing short of triumphant.

It was a long time before Rachel would even try cereal with milk; on some level she seemed to know that it was going to take a lot of work, and she didn’t want to work she just wanted to eat.  Who could blame her?  I’d coax her with airplane-spoons that zoomed and performed loops while on course to her mouth, but she was too smart for me and not beguiled by my trickery.  Occasionally I was sneaky enough to get the spoon in her mouth, but the contents were immediately spit out as her oral muscles revolted against the unfair labor that was being asked of them.  After a while I just stopped trying and figured that maybe she would just be an oatmeal eater all the days of her life.

Then one day, it happened.  I was eating a bowl of Cheerios on the couch when Rachel toddled up to me to see what I was doing.  She peered over the side of my bowl and pointed to my cereal then looked questioningly at me and signed the word “eat?”

“Do you want some of mommy’s cereal, Rachel?” I queried.

Rachel nodded emphatically with a sizeable smile on her face.

So, we went for it.  Spoon loaded with oaty cereal and just enough milk to not spill over the stainless steel brim, I steered carefully toward her eagerly awaiting mouth.  In went the spoon and her lips closed down, scooping the contents into her mouth.  I held my breath as I watched her tiny face; her lips pursed tightly and I watched as her mandibles chomped up and down, up and down—no spillage.  Chomp, chomp, chomp, swish, swish, swish—she even maneuvered a slick cheek-to-cheek exchange of food with not a drip of milk slipping between her lips.  Chew, chew, chew, swallow.  SUCCESS!!  With a grin she opened up her tiny little mouth and vigorously gave me the sign for “more”.

I cried.  Sure it sounds silly, but I sat there with my cereal bowl and empty spoon in hand and shed tears of joy and triumph.  I gave her a big squeeze and told her how proud I was of her heroic accomplishment then proceeded to feed her the entire remaining contents of my bowl.  Those five minutes of my life were filled with such intense and unexpected joy, and to this day I can’t help but smile every time I watch her eat cereal.  To me it is a symbol of what a girl with odds stacked against her can accomplish, and I feel privileged to be the one who gets to cheer her on.

Sisters

"A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life." – Isadora James

Me & my siblings.  My "trio of sisters" are the bridesmaids in this picture

I am blessed to be the youngest in a trio of sisters, and can attest first-hand that the sister relationship is one that is as sweet as it is unique.  Having a sister is a like participating in a friendship where secrets, silly jokes that no one else would get and wild antics past bedtimes prevail.  It is also a full-disclosure situation in which both can be completely and entirely themselves—the good, the bad and the ugly—and know that at the end of the day the love of their sister will still be there.  Sisterhood is a girls club, a debate team, a dramatic arts society and, above all, an unbreakable bond.

Kaia

In case you are one who doesn’t actually know me and my beautiful little family, I’d like to introduce you to Rachel’s sister, Kaia Michelle Taaffe.  Kaia is 23 months younger than Rachel, born on January 13, 2010.  From moment one that these two met each other I knew that they would be both an infinite blessing and an exasperating handful all at one time.  Kaia is a little ball of fire with a confident personality and a definite grasp on what she wants and does not want.  She is tender yet fierce, cuddly yet strong-willed, sweet-hearted yet steadfastly stubborn.  Kaia is a verbose 2 ½ year old who is a perfect mimic of anyone she chooses to watch closely…so be careful what you say around this little girl; inevitably you’ll hear your words come out of her mouth and either grin with pride or hide your face in chagrin.

Kaia is absolutely, head-over-heels in love with her older sister.  From the time that Kaia’s big personality began to make it’s appearance on our family’s stage we could tell that she would always be an advocate and protector of Rachel.  Patrick and I have numerous times commented that when the girls are both in school we will not be shocked to hear that Kaia was sent to the principal’s office for punching someone in the face who mocked her big sister…and we secretly wonder if we will high-five each other before putting on our stern faces to address the situation.  Kaia knows Rachel like no one else does; she can translate everything that Rachel says, she knows Rachel’s likes and favorites, and can comfort her in ways that only the two of them truly understand.

I was reminded again last night of what a sweet blessing this special relationship is, and will be, to both of them throughout their lives.  The two of them were in the bathtub while I busily wiped down the bathroom counters and mirrors when I overheard uncontrollable giggling from the bubbly tub.  I glanced over and smiled quietly as I watched them play together; they had concocted a game that clearly made perfect sense to them where one of them would say, “Close your eyes!” and then while the other closed their eyes they would pour a brimming cup of sudsy water down the dutiful participant’s back.  >>Insert immediate and heart-warming laughter here.<< They would take turns passing the cup back and forth and dousing each other with warm bath water, each time coming unglued with laughter.  I couldn’t help but begin chuckling, then chortling, then guffawing at the hilarity of their silly little game.

As I watched them play so beautifully together I was struck with the wonderful thought that no matter what, Rachel will always have a best friend in Kaia.  A friend who will love her genuinely for who she is, a friend who will always see her as just Rachel not as “my friend with Down Syndrome” and a friend who will stand up for her because they are friends not just because it’s the right thing to do.  Rachel will always have someone to talk to, someone to share her hurts and joys with, someone to giggle about cute boys with and someone to ask advice from.  Even if the whole world were to push Rachel to the periphery of their view, she will always be right in the middle of Kaia’s view—what a lucky girl.

Not only that, Kaia is lucky too!  She will grow up viewing the world through the goggles of compassion, be more apt to love others regardless of their station in life and value friendships that others may take for granted. I am so thankful that my children have each other, and endlessly humbled that God gave them both to me.

My Thoughts On The "R Word"

First off, it is uncharted territory for me that suddenly I have been thrust into a sub-culture to which a “bad” or derogatory word has been assigned.  I fully realize that the reason this is strange to me is because I am a 31 year old, middle-class, white, American, brunette female.  I’ve never had to deal with the atrocity that is racism, I have not ever felt the judgmental sting of sexism, I don’t recall ever being on the receiving end of any kind of negative slur…it is completely foreign to me that I now have to contemplate my views on the “R word”.

For those of you who are fortunate to have no idea what word I am referring to, I’m talking about the word “retarded”.  Before I go any further, I want to forewarn you that my view on the use of this word may differ from someone else’s view who is in my same boat; but I have pondered this subject quite a bit and feel that it is appropriate for me to delicately discuss this somewhat volatile subject with the end goal of creating a more loving and compassionate world.

Let’s begin with the origin of this word and track it’s revolution in our lexicon.  I did a little looking around online to see what I could find on the origin of this word, and found a blog here that had some really great information if you are interested. Basically, as is the case with most words that our vernacular deems inappropriate or foul, the word was first used as a verb to communicate the slowing of an action:  Construction progress on the Hightower building has been retarded, or Retard your descent as you reach the desired depth, or The retarding of the grocery line while shopping with two preschoolers was causing a dip in her sanity. It was no more derogatory than any other verb that means “to slow”; decelerate, brake, reduce, slacken, etc.  Later the word was used medically in conjunction with the word “mental”  to describe brain function that was slower than average.  It was not terribly long after the medical  use of the word became commonplace that lay people began to use the word “retarded” as an adjective to describe the outward appearance and attributes of the mentally delayed community. Then it was just a little while longer until people began to use the word as a noun, or a label, to place upon those who are mentally delayed or to compare a normal person to the mentally handicapped in order to insult them. Use of the word in this way became heavy and prevalent for quite a while, and still is.  Taking the revolution even further, the word “retarded” has now taken on a lighter tone and is thrown about in everyday conversation by the average person as a synonym for obnoxious, ridiculous or adverse; This homework assignment is retarded, or I was walking around looking retarded with my dress tucked into my pantyhose or It is retarded how many loads of laundry I still have to fold.

The mentally delayed community, their family members and supporters have taken a strong stance against the flippant use of this word because they feel that it demeans those who medically fall into the “mentally retarded” category.  There is a national campaign called “Spread the Word to End the Word” designed to raise awareness and stop the misuse of this word. Numerous celebrities, including Lauren Potter (actress on Glee who has Down Syndrome) and John C. McGinley (actor most well-known for his character on Scrubs who has a son with Down Syndrome), have voiced their public support for this campaign and what it stands for.

Lauren Potter of Glee

John C. McGinley and his son

Naturally, one would assume that I would publicly march around flying the “No R-word” flag while campaigning for a more verbally safe world for Rachel to grow up in; and there is a portion of me that feels this way, in large part due to the fact that I have the right to feel this way.  Do I want either of my children to be taunted with any word that the offender is using to specifically hurt their feelings?  Absolutely not!  That is a really great way for the world to see the ferocious, mama bear component of my personality rise to the surface in a heartbeat.  So, I will say that if I were to hear someone use the word “retarded” in a negative way to insult Rachel--or anyone for that matter—I would be terribly upset, hurt and would probably have to be held back from unleashing a barrage of loud verbal discipline upon the perpetrator.  Bullying and purposeful insult, with this or any other word, are unacceptable. Period. 

However, when it comes to the off-hand use of this word, I recognize that our language is a fluid body of ever-changing vernacular in which word meanings can morph drastically at the drop of the hat.  The first time that I heard someone say that they “burned” a CD I wondered inwardly what was so exciting about setting a CD on fire.  When I was in high school if I had overheard someone say that a classmate had been "tweeting" I probably would have thought that they had literally been doing bird-calls.  80 years ago, if I were to hear someone say that a rule was dumb I would have wondered how that rule could possibly have lost the ability to speak.  When I hear someone toss “retarded” into an everyday conversation, I am not offended.  I do not immediately think, “Hey!  Don’t demean my little girl by using a word that could technically label her mental capability to describe something you dislike!!”  It would be reasonable for me to think that, but I don’t.  I usually do not even notice when the word is used, except when the speaker suddenly remembers that I have a child with Down Syndrome and gets the deer-in-the-headlights look as they worry that I’m going to flip out.  I know that the person speaking to me is not intentionally trying to offend me or my family, they are simply using the given central California coast dialect of 2012.  If I were the only person on the planet with a loved one that has developmental delays, the use of the R-word would not be a big issue.

But I am not the only one.  As a member of this beautiful community of people who love, accept and support people of every disability and delay, I wholeheartedly support their feelings on the thoughtless use of this word.  Just because it does not personally offend me when I hear it doesn’t mean that it won’t send another mother of a child with Down Syndrome into a cloud of tears as she fears the way the world will see her child.  Or that an individual with Down Syndrome or other diagnosis will not feel marginalized and discounted in value when they hear others use it dismissively as just another negative descriptor.  It is vitally important to our unity as humans on this earth that we take into account the feelings of others, and adjust our actions accordingly.  The ability to look outside your personal box of values and respect what is important to someone else is a gesture of healing and peace to mankind.

So, I guess this is my point: let’s work together to show our support for people of all walks of life by choosing our words wisely and thoughtfully.  Believe me, I am just as guilty as the next person of peppering my daily language with “joking” words that could potentially be hurtful, so I am calling myself to action as well. Whether it’s “retarded” that slips into your daily conversations, or “gay” or “stupid” or “blonde”, take a moment to think about the word's possible impact on the person you say it to.  Sure, it may not offend them—but it’s equally as possible that it will, and that is reason enough to not say it.  We are here on this earth to be mirrors of God’s love to others; join me in taking this verbal step toward shining up our mirrors.

Tour of Heaven

I once read a story written by the father of an adult child with Down Syndrome that greatly impacted my heart and the way that I view Rachel.  The plot of the story was that a middle-aged man name George was visited by an angel and given a 1-day pass to Heaven for the purpose of learning what the true meaning of life is.  While on a guided tour of Heaven he meets people from his history and from his past, each encounter bringing him a new perspective on what he previously thought life was all about.  He met his third grade teacher, his great-great grandfather and Abraham Lincoln, to name a few.

Toward the end of his tour the angel and George came upon a large crowd huddled around a man who was talking to them excitedly and with enthusiasm.  George could not see the man speaking nor quite make out what he was saying, but could see that the audience was emotionally wrapped up in what was being said.

“Is that Jesus?” George inquired of the angel.

With a knowing smile the angel replied, “No, that isn’t Jesus.  Look closer.”

As the two of them came closer and closer to the crowd George began to pick up on pieces of what was being shared with the group.  He was talking to them about love and it’s all encompassing power to heal the hearts of others; that a simple hug or just listening to someone share their burdens could bring peace to a tortured soul in ways that nothing else could.  He recounted example after example of times that he had been able to bring joy into someone’s life on earth because he had taken the time to love them.  His words were rich with meaning, depth and beauty; he spoke with the kind of humble authority and fluidity that all pastors strive for.

“Well, if he isn’t Jesus then surely he must be a powerful evangelist or Christian speaker of some kind.”  George commented.

Again, with a smile that hinted on amusement, the angel responded, “George, look at his face.  Really look—you know this man.”

George squinted his eyes, trying to make out the features on the man’s face.  Something did seem strangely familiar to him, but he couldn’t place it.  The man speaking was somewhat short in stature with slanted eyes and a brilliant smile.  Who is this? George wondered.  His mind scanned through every face from his life on earth that he could recall when suddenly his mental photo reel froze and he realized who it was.

“Angel, is that Joey?!  The bag boy from my local supermarket?” George asked with astonishment.

“Yes, George.  That is Joey.”

“I don’t understand.  Joey had Down Syndrome and was never able to say more than a few halted words to me as he stacked my groceries; I think the most I ever heard him say was, ‘Have a nice day, George’ in that sort of slow and fuzzy voice of his.  Moreover, aren’t people with Down Syndrome mentally retarded?  I didn’t think he really knew much about the world. I just don’t get how this could be the same guy.”

The angel put his arm around George and explained, “Well, George, on earth you all saw Joey as being less, but God saw Joey as being more.  He may not have spoken much out loud, but in his heart he was in constant dialogue with his Heavenly Father.  He may not have understood as much of the earthly world around him as others, but he understood more about the Heavenly world and what it truly means to love.  Up here all the outer things that cause people down there to turn a blind eye or a deaf ear to someone like Joey fade away, and his glorious inner qualities shine bright.  Joey was sent as a missionary to teach you how to look beyond what you perceive, and search for what is true. On earth your ears could only hear his words, but in Heaven you can hear his heart.”

My angel and Auntie Christina

I love this story.  I love knowing that God understands Rachel in her heart and that someday I too will be able to hear her heart speak fluently. I am humbled to think that when it comes to caring for others and embracing who God made them to be, I have a lot to learn from my very own little missionary.

Weep With Those Who Weep

"Rejoice with those who rejoice, weep with those who weep." Romans 12:15

I am of course impressed by a host of things about Rachel—I am her mommy, it’s part of my job description to think that my children are the most incredible creations on the planet.  However, there is one trait of Rachel’s that has always struck me as particularly amazing and that is her compassion for others.  Rachel’s emotional intelligence is off the charts when it comes to recognizing that someone is hurt—either physically or emotionally—and comforting them with her love and affection.  I recall numerous times when someone in our home has been sick or hurt and Rachel is first to come snuggle up and say, “Are you OK?” give us a kiss and then say, “Better?” She gets upset if she hears someone raise their voice in anger and immediately rushes to comfort whomever she believes to be on the receiving end of the outburst.  Rachel is compassion with skin on, and it is humbling and inspiring to watch her ministry in action.

In July Rachel started going to a new preschool where she met a few new friends and continued friendships with a few old friends that have been receiving special services alongside Rachel since we moved to Salinas in 2010.  One of these long-time friends is Mario*.  Rachel and Mario met when they were in the same toddler class at the Salinas Adult School and have continued to be in the same classrooms as they move through the stages of special ed preschool.  I do not actually know what Mario’s diagnosis is, but I do know that he has trouble with eating.  When he was smaller he was fed exclusively through a feeding tube, though now he has graduated to being able to eat small amounts with his mouth and only supplements through his feeding tube.  Up until this school year all of Mario’s feeding treatments had been done at home, but now they are in a school where the students are served both breakfast and lunch in the classroom so the teachers were trained on how to manage his feeding machine and meals.

When I picked Rachel up from her first day at the new pre-school her teacher told me about an experience they had in the class with Rachel that day.  When it came time for lunch all the kids pulled out their little packed lunches to eat, while the teachers put together Mario’s feeding machine and hooked him up.  When Rachel saw the machine and the tubes going into Mario’s tummy she rushed over and, with tears streaming down her face said, “Mario!  What’s wrong?!”  The teachers tried to comfort Rachel by telling her that Mario was fine, this didn’t hurt him and it was just the way that Mario eats his food.  Rachel was not consoled.  She cried, and cried and cried—not leaving Mario’s side for a moment.  She held his hand and patted his arm and kept saying through her tears, “It’s ok, Mario.  It’s ok.”  When the feeding tubes were removed Rachel wiped away her tears, smiled and said, “Mario, all better?”  The teachers assured her that Mario was just fine and the two children ran off to play.

I was moved by Rachel’s concern for her friend and talked with her about it on our way to daycare that day.  I assured her again that Mario was OK and that his body just needed to take food in a different way than her body does.

Over the next few weeks Rachel continued to express her concern for Mario.  When the teachers would pull out the machine she would cry and run to Mario, hold his hand and keep saying, “It’s ok, Mario” then  routinely follow up with, “Mario all better?” at the end.  Each day her tears were fewer and fewer until finally about a month later she didn’t cry at all when they started the machine.  But, that didn’t stop her from showing her love and concern for her fellow classmate.  To this day whenever Mario’s feedings begin Rachel runs over, sits beside him, holds his hand and tells him “It’s ok.”  Now, instead of tears, she sings songs to Mario, tells him wild and engaging stories that only she and him seem to understand, and sometimes just sits quietly beside him—lovingly showing her support.

How many of us show such compassion toward others?  How many of us take time out of our day to go sit by someone we care about and hold their hand while they experience something that may not be terribly pleasant?  I admire this trait in my child and pray that one day I will see the world through her eyes, and share my love so freely in the healing and passionate way that she does.

*I’ve changed his name for privacy reasons.

No, Mommy I Do It

*Foreword:

If you’ve been reading along, you may have noticed that most of my posts thus far have been quite emotional—most introducing you to what it’s like learning that your child has special needs, dealing with your emotional response and the realities you face, then allowing God to heal your heart as you embrace the beautiful new journey that He’s called you to experience.  It has been quite a fascinating and introspective time for me as I’ve reflected on all of the feelings that I had toward the beginning; in retrospect they all seem a little silly, but at the time they are very real and important to validate in order to move forward.  As I admitted, I certainly have dark and emotional moments now and again, but the majority of the time I’m so smitten with both of my children and their personalities that I don’t think at all about Rachel having Down Syndrome. In fact, this month is absolutely the most that I’ve ever thought about it simply due to writing this blog.

So, I’m moving along from sharing with you the initial phase of grief and bewilderment to sharing the wonder of Rachel and who she is, and how she has single-handedly opened my eyes to see that the Down Syndrome diagnosis is not an emotional death sentence, but rather an extraordinary license to enjoy the little things in life.  It is an invitation to be joyful, to embrace your future and your hope—because that is what this month is really all about.  It’s not about mourning Down Syndrome, it is about embracing, enjoying, celebrating and enlightening others to the beauty of Down Syndrome.*

I am biased, and I know that.  Be that as it may, I feel compelled to tell you that Rachel is just…amazing.  If there is a developmental wall that science or society dictates that she will not be able to climb, she’ll scale the wall with a smile on her face as if to say, “Really?  You thought this was too much for me?” Anytime that I assume what her limitations are regarding her ability to understand what is going on she smoothly and deftly shows me that I simply cannot assign limitations to her because she will immediately exceed—and shine with joy while she’s doing it.

Just the other day I had a front row seat to a display of Rachel-awesomeness that left me humble and beaming with immense pride.  Sunday afternoon was our first community group meeting of the month. Our community group is made up of a few wonderful families from our church that get together two times a month to fellowship, learn about each other and God and—of course—eat good food.  Between all the families in attendance we had 15 kids ranging in age from 9 months to 7 years, which translates into a lot of boisterous noise, laughing, crying, flying toy-projectiles and just plain fun.  At one point in the evening I was outside watching a few of the kids play when I spotted Rachel and another girl her age playing with a jump rope.  They were trying to spin the jump rope together in such a way that, if there had been another participant, someone could jump rope in between the two of them.  I immediately noticed that Rachel didn’t seem to grasp that she needed to turn the rope in the same direction as her playmate in order for it to work correctly.  I could see her friend getting a little frustrated as they would stop and she would say, “No, Rachel, you need to do it the other way.  Ok, ready let’s go THIS way.” But, still, Rachel would inevitably be spinning it the other way.  My natural instinct was to jump in and help Rachel to see how she needed to turn the rope.  I knelt behind her, put my hand over her hand and begun to turn the rope in the same direction as Emma.

“No, mommy.  I do it.” Rachel said emphatically.

“But Rachel, do you see how you’re spinning it the wrong way?  You need to spin it the other way for it to work.”

“Mommy, I do it.”

So I let her.

And still she continued to spin it the wrong way.  Oh dear, she just doesn’t understand what we are saying. The concept of having to coordinate their movements is a bit beyond her comprehension level, I thought.  I noted that Emma was quite naturally getting increasingly frustrated and my next instinct was to explain to her that Rachel doesn’t always understand and I’m sorry that she’s not figuring it out, maybe she should play with something else.

But I stopped before opening my mouth. Rachel does not need me to make apologies and excuses for her. She is a smart girl, let’s see how she handles this. So I firmly clamped my mouth shut and watched.

Rachel and her friend Asher

In the next minute or so I watched Rachel study Emma as she turned the jump rope; I could almost see the gears and physio-mathematical calculations churning inside her beautiful little head.  Slowly I saw Rachel begin to change the direction of her arm as she turned the jump rope and watched as an undeniable grin of pride began to build on her face.  With each coordinated turn of the jump rope being perfectly in sync the girls began to giggle together and shared a beautiful moment of collaborative play.  As their game came to an end, Rachel turned around, looked at me with those incredibly intelligent eyes of hers and said:

“See, Mommy! I do it!”

Yes, Rachel, I see that you can do it.  I am so proud of you for kicking the expectations of others squarely in the face and being yourself. And I’m thankful that you are patient with me and my limited thinking; you truly are the teacher and I am the student.