So Close To Heaven

My posts so far have been very emotional...some in positive ways, some in negative ways, which is an extremely accurate reflection of the somewhat bi-polar emotional path that anyone treads when faced with some sort of life-changing event.  However, today I decided to lighten the mood a bit and share a song with you that Patrick and I wrote in honor of Rachel's first birthday.  This song was written and sung on Rachel's birthday for our Sparks Nazarene Church family as a thank you for the overwhelming love, support and prayer that they surrounded our little family with from moment one of this incredible journey.  We adore each of you--thanks for loving our little girl!  

So Close To Heaven

Lyrics and Music by Patrick & Terri Taaffe 2009

If we could take a moment to stop and smell the breeze

Or notice that the twinkling stars dance across the seas.

Or rest a while to see a cloud drift gently o'er the skies

Then you would know how beautiful the world is in her eyes.

There will be some who, when they see her, can't see past her face

Seeing only differences missing joy, and peace and grace.

But if they only knew her and the beauty in her soul

They'd see that she's made perfectly, so innocent and whole.

CHORUS:

For she's so close to Jesus that He whispers in her ear,

So close to God that in life she has no fear.

So close to Heaven that it sings her lullaby

So close to the love of God, that it gives her wings to fly.

Sometimes I think that we could learn a lesson from this little one

To look beyond the storms of life, and see the beauty of the sun.

My wish for everyone of you is to let your burdens go,

And let the Father hold you close so in your heart you'll know that you're

So close to Jesus that He whispers in your ear,

So close to God that in life you have no fear.

So close to Heaven that it sings your lullaby

So close to the love of God, that it gives you wings to fly.

"Jesus loves me this I know

For the Bible tells me so,

Little ones to Him belong

They are weak but he is strong!

Yes, Jesus loves me!

Yes, Jesus loves me!

Yes, Jesus loves me..."

And she's so close to Jesus that He whispers in her ear,

So close to God that in life she has no fear.

So close to Heaven that it sings her lullaby

So close to the love of God, that it gives her wings to fly.

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A Gallery of Newborn Rachel with SNAZ Friends

Connie 

Eric 

John 

Kylie 

Nettie

Pastor Brad

Brad & Debbie

Shirley

Forgetting and Remembering: The Dark Side

Let me just say upfront that in today’s post I will bare a bit of my soul that I have a hard time coming to grips with.  Part of me is terrified as I sit here with fingers anxiously tapping away at the computer keys; scared that you will judge me, afraid that I’ll expose a few of my weaknesses and you will think less of me, worried that admitting these feelings out loud will make them real and I’ll no longer be able to shove them aside like outtakes from an otherwise great movie.  However, they are undeniably part of me and part of my experience as the mother of a special needs child.  And maybe, just maybe, one of you needs to hear this.  So, I give you my darker side…

98% of the time I completely forget that there is anything different about Rachel.  She is just Rachel; silly, giggly, loving, funny, playful, sometimes ornery, willful, independent, compassionate.  There’s not a lot that sticks out about her when you see her playing with a group of children.  She is very “normal”.  We deal with typical parenting struggles like bedtimes, tantrums, time outs and learning to obey.  Most of the time, being a mom to Rachel is just like being a mom to any other child. Most of the time.

Rachel with her best buddies a few years ago

However, the 2% of the time when I remember that there are a few things different about Rachel is the time that tears my heart apart.  When I learned that my best friend’s little one who is 9 months younger than Rachel began walking about a month after Rachel figured out how to crawl, I cried for the better part of a dark and dreary night.  When toddlers at church were knocking Rachel over because they could all run and she could barely pull up to standing, I wanted to scream at them and run crying from the nursery with Rachel in my protective arms.  When my friends’ children all started potty training at 2 years and my efforts with Rachel only ended in both of us being overwhelmed with frustration, I was embarrassed and cried nearly every time a mom shared her joy over the accomplishment.  When I observed a group of children Rachel's age playing together at a play date and then noticed Rachel playing alone because she wasn’t quite cognitively or physically ready to engage in what they were doing, I had to excuse myself to the bathroom to sob silently while the other moms sipped their coffee on the couch.  Just the other day Kaia commented, “I can talk a lot.  But Rachel can’t talk very much because she’s Rachel.” This sent me into and immediate torrent of tears and I had to hold my tongue to not ruthlessly chastise my sweet little 2-year-old for being insensitive to her sister’s speech delays.

Eating a birthday cupcake at school last year

I hate that I have negative feelings about Rachel’s development.  I want to live in a bubble where I can reject reality and substitute my own perpetually happy version. My brain knows that Rachel is perfect and that she is developing in exactly the way that God so carefully and lovingly designed her to.  I know that all children are different, all children reach milestones at different times whether they have a disability or not.  I know that she is on the high functioning end of the Down Syndrome spectrum and I am so proud of her and her astounding accomplishments!  I have all the positive answers to every question about her development on the tip of my tongue at all times and love to gush about how well she is doing…but that doesn’t mean that I don’t have dark, weak, vulnerable tides.  Moments where I worry that the chasm between her and the “normal” kids is just going to continue to widen as she gets older…worry that once the other children actually begin to notice differences between them and her that she’ll only have “pity friends” who sacrifice time out of their day to play with the “special girl” because they’ve learned that it’s the right thing to do.  I worry that she won’t get asked to prom, that she’ll be lonely, that she’ll be excluded.  I worry that she’ll notice that she’s a little bit different and that it will make her sad.  I worry that one day she’ll just be another special needs adult that the public sees in a large group of “special” people at the mall food court on their field trip every Tuesday; that in the eyes of the world she’ll lose her identity as Rachel and just become “one of them”.

To deepen the pain of these awful thoughts, I place the burden on myself to make everything better.  I have had these thoughts on numerous occasions: “Terri, if you just work hard enough you can help Rachel to be just like her peers.  If you just spend time teaching her everything she needs to know in life, she will be able to go to college and blow everyone out of the water!  If you are just a good enough mom she will be….normal.”  Ohhhhh, and then the guilt takes over.  I berate myself, “Terri, what is WRONG with you?!? You LOVE Rachel, you know that she is beautiful, smart, friendly, happy.  She is perfect the way she is, how can you think these things?  What a terrible mother you are!”  The pit of despair deepens.

Rachel and a friend on Christmas Eve

This is ugly.  I know.  I wish with everything in me that this wasn’t part of my emotional journey, but it is.  Why am I baring my emotional nudity?  Because I know that I am not alone.  I know that I am not the only mother—father, grandparent, person—out there who deals with these same sorts of emotions and it is my hope that by sharing my entire journey, shadows and all, that perhaps someone will feel the warm embrace of similarity and find solace in knowing that they do not struggle alone.  C.S. Lewis says, “Friendship is born at that moment when one person says to another: ‘What! You too? I thought I was the only one.’” I have a dear friend who, to be honest, I’ve only actually met in person twice, but she and I share the blessing of having little girls around the same age with Down Syndrome.  Our friendship lives mostly on Facebook and we no longer even live in the same state, but the fact that we can drop into each others’ lives unannounced to cry together about vulnerabilities that we both understand so well is priceless.

Anyone who knows me will attest that it goes against my very being to say anything negative without bringing in a positive note—it’s absolutely my modus operandi. I really was going to try to leave this blog entry as is, fearing that if I wrapped it up with a nice pretty bow at the end the impact would be lost.  How modern and edgy that would be for me!  But, alas—that’s just not the way I roll.  J  So, I must take one last moment to share with you how God uses Rachel to reach out to me in these darkest of times.

I do my best to keep my blubbering and crying to myself when I go through periods of darkness, but sometimes I just can’t contain my emotion.  One evening a number of months ago I was really struggling with the reality that Rachel’s speech so clearly lags behind her peers, and I broke down sobbing on Rachel & Kaia’s bedroom floor.  The girls were playing quietly and mommy was curled up in the fetal position crying those breathless, ragged, sorrowful sobs that we save for solitude—I must have been quite a spectacle.  In the midst of my anguish I felt the gentle brush of Rachel’s hair on my arm and opened my eyes to see her beautiful, compassionate and concerned face leaning over me.  I will never in all my life forget the depth and wisdom that shone from her sparkling blue eyes as she studied her mother’s tear stained cheeks.  Cupping my face in her tiny, soft, little hands she pulled my face close to hers and said, “Mommy—it’s OK” and kissed me on the cheek.  In that moment I knew that God Himself was comforting me and kissing me on the cheek using the lips of my own personal little angel.

Yes, my journey does include darkness.  But God has provided me with a light and her name is Rachel.

A Trip To Paris

A question that I get asked frequently is, “What is it like to find out that you will have a child with special needs?”  I recently wrote an article for our local MOPS newsletter that I am going to post today (slightly edited) in answer to that question:

“Today is a day that will forever live in my memory. Today we found out that our sweet little Rachel will be born with Trisomy 21, or Down Syndrome.  I don’t quite know what I feel right now…grief, loss, confusion, pain….and at the same time wonder, excitement, anticipation.  It breaks my heart that she may not be what the rest of the world thinks she should be, but I pray that I will always see her as exactly what God has created her to be--perfect.  The journey ahead scares me and I feel unworthy of this calling—God please stay by my side.”

 – Status update from Terri’s myspace.com account on November 9, 2007

It was a crisp Monday in Reno, Nevada when I awoke to the gentle tumbling of the little girl in my womb.  At 24 weeks of pregnancy she and I were just getting to know each other and I enjoyed these special moments that were made for just me and my princess.  As I lay there in bed, smiling as she wiggled to get comfortable, I once again lost myself in daydreams of who this little girl would be.  Would she grow up to be a doctor or renowned singer?  Would she be a cheerleader in high school, or maybe president of the honor society?  I thought of how special it would be to help her put on a sparkling veil on her wedding day and to hold her hand as she brought her own first child into the world.  I loved those daydreams, and that morning I stayed in bed just a few extra minutes basking in the joy of each whimsical thought.

For reasons that at the time seemed out of the blue (though I would soon know came directly from God), I just didn’t feel like going to work that day.  I couldn’t put my finger on why, but I just did not want to go.  After grappling with how I was feeling, I finally made the decision to call in “sick”—yes, I decided to play hooky.  After lining up a sub and sending in lesson plans, I embarked on what I anticipated being a fun, spontaneous day off.  I finished my coffee, tidied up a little, then retreated to what would soon be the nursery to finish a painting I had started.  As I painted I remembered that some day this week we would be getting a phone call from the perinatalogist’s office letting us know the outcome of the amniocentesis that we’d had done the previous week.  Something about an elevated risk for Down Syndrome had popped up on a regulatory screening and after talking about it we had decided that we’d like to have the amnio done just so that we could spend the rest of the pregnancy with peace of mind knowing that our little one was just fine.  During the amnio the perinatalogist kept commenting on how our little one did not show any of the typical Down’s characteristics and she was pretty positive that the test would turn out negative.  As I brushed pink paint across the canvas I remembered her words, “When you get the call, if it’s one of my office assistants you know the results are negative.  However, if the test is positive I’ll call you myself.” I laughed and said, “Well, I guess I won’t be hearing from you again, huh?!”

When the phone rang at 10:15 am on Monday, November 9, 2007 I didn’t think anything of it.  I said hello, and then heard the one voice that I never in a million years expected to hear on the other end of that phone, “Hi Terri, this is Dr. Cantrell, your perinatalogist, calling with the results of your amniocentesis.” I was silent. Mouth dry, hands numb, stomach lurching, head dizzy; finally after what felt like 5 minutes of silence I said incredulously, “Oh…it’s you.”  Knowing that this moment had caused my world to stop turning the doctor kept it brief, “Yes.  It’s me.  She has Down Syndrome.”  And that’s all I remember of the conversation.  I assume I said goodbye at some point because the next thing I knew I was slumped on the floor, clutching a silent phone, shaking uncontrollably and reminding myself to breathe.

The minutes, hours and days following this news were filled with every single human emotion found on the spectrum of possibility.  Some moments were dark, angry and bitter when I wailed and shook my fist at God for stealing from me all my precious daydreams and hopes for this little girl.  Some moments were awesome as we researched the syndrome and learned the potential that many with Down Syndrome have, and I once again began to cultivate new and different daydreams for the sweet little girl inside me.  But the most poignant moments were those quiet times when God spoke to my heart, assuring me that I had been chosen for a special purpose—for a special child—because He had created me for such a time as this. 

Our journey with having a special needs child has been beautiful.  We are very blessed to have a healthy, happy, bright and beautiful 4-year-old with blonde hair, almond shaped eyes and a personality that doesn’t quit.  There have been, and will continue to be, some very difficult times when the reality of having a child who is developmentally delayed is too much for my heart to handle.  I have faced moments that feel very much like getting that phone call from Dr. Cantrell when I see other kids Rachel’s age doing things that Rachel can’t do…but they pale so tremendously in comparison to the rest of the very normal moments of motherhood!  Rachel may have an extra chromosome, but that is one itty-bitty piece of who she is.  When I see my child, I do not see “girl with Down Syndrome”.  I see a girl who loves books more than toys, can’t get enough of Caillou, is more compassionate that anyone else I know and has the best giggle ever heard.  She has tantrums, she needs boo-boos kissed, she celebrates when she goes potty in the toilet.  She is just Rachel, and she is a blessing that I cannot imagine being without.

Now that you’re thinking that the titles [in this newsletter] got mixed up, let me circle back to “A Trip to Paris”.  Did you know that in the United States an average of 80% of women who learn that their unborn child has Down Syndrome abort their pregnancy?  Many reports show staggeringly higher statistics, the highest being a mind boggling 92%.  I say this with zero judgment of these women…what I feel for these mothers is compassion and sadness because they don’t know what joy and beauty they are giving up.  Choosing to let go of a child due to a diagnosis like this is like choosing to not visit Paris because it looks like a long climb to the top of the Eiffel Tower.  Sure, it probably is a long climb, but it's only ONE Paris attraction, and the experience and beauty at the top is worth the climb!  Why give up the whole trip because of one thing that you think might be too hard?  If I could make one lasting impact on the world during my life it would be to help women who find themselves on the other end of a difficult phone call, slumped to the ground and reminding themselves to breathe; help them cope, help them keep daydreaming.  Whether you're dealing with the news of Down Syndrome, Autism, learning disabilities, cancer or something else--this is no surprise to our great God.  My hope is to share the message that you are a special mother, to a special child and were created for such a time as this.

The Low Down On The Syndrome

5 years ago Down Syndrome was but a speck of minuscule knowledge in my brain; a barely remembered paragraph in a high school health textbook. So, the first task on the docket for mission “Become A Parent of Down Syndrome Child” was to become educated.  Over the years I’ve been asked all sorts of questions about DS which tells me that I am probably not the only one who is a little bit clueless about it, so I thought I’d take a moment to share a few of the more common questions and their answers:

What is Down Syndrome?:  The term ‘Down Syndrome’ is the name given to a particular set of physical and mental attributes that occur as a result of a 3^rd copy of the 21^st chromosome in their DNA (named after John Langdon Down, the British physician who described the syndrome in 1866). Remember in Jr. High life sciences you learned that when egg and sperm come together they each share a copy of 23 individual chromosomes that meet up with their counterparts and become a pair?  Well, every once in a while an extra copy of chromosome #21 joins the party and this is called ‘trisomy 21’—a.k.a., Down Syndrome. (P.S. Just for the sake of grammatical correctness, notice that it is actually “Down Syndrome” not “Down’s Syndrome”.  Don’t worry, I didn’t know that either!)

Normal DNA                                                                Down Syndrome DNA

What causes Down Syndrome?:  Despite best research efforts the medical community still has no idea why this happens sometimes.  They have a lot of theories based on group sampling, but nothing that proves that any one thing causes it.  They do see that the older a woman is the more likely she is to have a child with DS…but clearly that isn’t the only factor since I was only 26 when I got pregnant.  My theory (based on zero science) is that it is not a scientific “mishap” that this extra piece of DNA just randomly shows up—I fully believe that God created these sweet, loving, caring, special people to help teach the rest of us how He designed us to view the world.  Take it or leave it, that’s my stance on it.  ;-)

Is there a “cure” for Down Syndrome?:  No.  It is not a disease, therefore there is no “cure”.  That extra little piece of DNA is simply another turn on the road map of their genetic make up, like the gene that dictates what color your eyes will be or how tall you will become.  There's no "cure" for brown eyes, they are just a part of who you are.  People with Down Syndrome are just people with a slightly different road map than you and me.

What are all of the differences that people with Down Syndrome have?:  That is a tricky question to answer because the spectrum of characteristics is broad.  I’ll do my best to lay out the most common characteristics that set this fraction of the population apart from the rest, but bear in mind that not a single person with DS is just like another and not one could possibly be pigeon-holed.

·         Developmental Delays – This is the most common and overarching difference that the extra chromosome makes.  Individuals with Down Syndrome simply develop cognitively and often physically slower than others.  Yes, the term “retarded” does actually apply—and not in the offensive tone that has permeated that word—but in the literal definition of the word which is, to be slow or slower.  As a music nerd I like to think of it as ritard, which is a musical term for slowing down at a given point in the song.  The reason that I like thinking this little word difference is because ritards usually happen at a point where the music gets extremely beautiful, emotional, moving and memorable; it helps you to really experience the depth of the music just like Rachel daily helps me to experience the depth of life!

·         Physical Differences – Undeniably there is a Down Syndrome “look” generally characterized by almond or oval shaped eyes, small facial features and ears, long torsos, shorter legs.  Frequently the lines on their palms are different, with just one large crease across the hand rather than numerous small creases.  Often the space between their big toes and their second toes is greater than that of others.  On the inside the range of differences include common heart defects, low muscle tone (including intestines), loose joints and lower immune systems.  They commonly have hearing and vision problems as well as speech delays that can stem from either cognitive delay or oral-motor skill delay, or both.

·         Alzheimer’s – One interesting fact about Down Syndrome is that, in conducted research, 100% of DS individuals that live into their 40s and 50s (which nowadays is most) develop early-onset Alzheimer’s.  They do not know what the link is, but the bulk of current DS research centers on this fact and trying to figure out why.  The hope is that if they can figure out why, perhaps the results will benefit both Down Syndrome and Alzheimer’s research and maybe uncover a cure for the latter in both communities.

Rachel and her little sister Kaia getting ready to be flower girls at their Uncle Richard & Auntie Amy's wedding

If there is only one thing that you remember after reading this blog entry, let it be this:  The above is a description of the syndrome not the people. To boil Rachel down to a description of physical and mental differences is to take the human out of her and leave just science.  People with Down Syndrome are the same as you and me—with feelings, personalities, likes, dislikes, hobbies, favorites, pet peeves, jobs, families, friends, hang ups, talents and more. I encourage you to broaden the boundaries in your head that rope off what is "normal" and what is not...this has been a huge part of my journey.  Before Rachel I admittedly had a pretty solid box that contained everything that I deemed "normal" and--to be completely honest--I pretty much ignored anything that fell outside that box because they weren't a part of my reality.  Now I am daily challenged to look at those around me and embrace the fact that we are all in one big box; we are all created with our own uniqueness, not one like the other.  I challenge you today to seek out someone that you tend to place on the fringe and connect with them--take a moment to embrace what makes you the same and what makes you different, and enjoy the sense of unity that comes in recognizing that we are all fearfully and wonderfully made.

To Test or Not Test--That Is The Question.

Rachel at 28 weeks

I have thought a lot about where to start on this blog, and after much mulling I decided to begin the way that our journey with Down Syndrome began—to test, or not to test.  Pre-natal genetic testing tends to be a hot topic in the pregnant community, up there with home birth vs. hospital birth, drugs or no drugs and the immunization controversy.  Before I share my experience and opinion, I want to be sure that I am CRYSTAL clear that this is my opinion.  Some will agree, some will disagree—and that’s OK!  I don’t feel the need to convince anyone to step over to my way of thinking because the decision is deeply, intimately, intentionally very personal.  So please, read on with the glasses of compassion and open-mindedness.  Thanks. J

Throughout the beginning weeks of the pregnancy there were all kinds of screenings for this, that, blah blah blah…I honestly didn’t really pay attention to any of them because *of course* I knew that  my baby was going to be perfectly healthy and normal so I didn’t much care what they were checking my blood for.  I do recall at week 12 being asked if we wanted to do the early Down Syndrome genetic testing, which we declined simply because it was an extra appointment in the office and, again, we knew that was something that we didn’t need to worry about.

So, needless to say, it was quite a shocker when I was sitting on that crinkly paper-lined table 10 weeks later being told that the results of the latest random blood test came back with an elevated risk for Down Syndrome—it reported a risk of 1 in 24.  I didn’t think that sounded too high until the doctor informed me that for my age a “normal” risk would be 1 in 900.  *gulp*  The doctor gave me a bunch of pamphlets with pictures of kids with the “Down Syndrome” face on different subjects, as well as a pamphlet on amniocentesis, which she informed me was an option if I wanted to know for sure.  She also mentioned that the amnio did come with some risks that I could read about in the pamphlet, if we chose to go that way.  Otherwise, we could just wait it out and find out after delivery if she had it or not.

This is where the social battles begin on the subject.  I had no idea that so many people had so many strong opinions on this matter!  We asked a number of people what they thought and I think I got every answer possible.  I was told by one well-meaning person that if I was even entertaining the thought of having an amnio then I was basically admitting that I was willing to abort my baby.  I was told that it shouldn’t matter to me whether she had it or not, so why go find out now?  I was also told that the amnio wasn’t nearly as risky as many made it out to be and that it was really the best way for me to prepare. 

Patrick and I prayed a lot about what was best for us, for my body and for this tiny baby being formed within me.  Finally we decided that the right answer for us was to have the amniocentesis done.  Did we do it so that we could decide whether or not to abort the pregnancy?  Not at all--for us that was not an option.  We chose to have the test done because we wanted to be able to emotionally prepare for the arrival of this baby.  Though we had not traveled the path yet, we had a feeling that if the test came back positive there would be a WHOLE lot of emotions to be dealt with and we wanted to get as much of the “negative” out of the way before she arrived.  We did not want her birth day and all the joys that come along with the first few moments of parenthood to be overshadowed by grief.  Further, if it came back positive we wanted time to research, learn, prepare, reach out and get involved with resources.  So, we did the test.

This photo was taken the morning that we went in for the amnio

Obviously, you know how the test turned out and I must say that *for us* having the test done was one of the wisest decisions in our parental career.  As anticipated, we went through a wringer of emotional upheaval in the weeks and months following the results of that amnio—but as time passed, so did the initial sorrow.  As we came to grips the loss of the child we had “dreamed up” in the first 20 weeks of pregnancy, we were able to embrace the beautiful new dreams for the baby in my womb and become excited in a plethora of different ways for her very special arrival.  When I was in labor I remember taking a moment to mention to the nurses that we knew our little one had Down Syndrome and were ready for that so when she came out no one would have to do the whole silent-concerned-exchange-of-looks-around-the-delivery-table thing and just be happy with us.  We were ready, we were excited, we were parents of a child with Down Syndrome.

Yeah...it's not my best photo...but it's part of the journey!  Here I am all ready to bring my special girl into the world.

In conclusion—if I’m ever asked for my opinion or advice on this subject by someone in the same boat, I would share my story and why finding out early was the best choice for us.  However, the choice belongs to each person and they may choose another path—which is the beauty of our God-designed free choice.  We are each given a journey to experience, and this was ours.

October - National Down Syndrome Month!

Looking back, everything makes sense and falls into place in the beautiful and serendipitous fashion that can only be attributed to the handiwork of God.  But looking forward on that chilly November morning when we got "the call" that confirmed the suspicion that our first, unborn child would have Down Syndrome--absolutely nothing made any sense.  I was too young to have one of "those" babies, wasn't I?  She was our first child, surely God wouldn't place that sort of a burden on us right out of the shoot...right?  Would she be healthy?  Would she need neo-natal heart surgery?  Would she be beautiful, or would people only look at her with gruesome curiosity?  Would I have what it takes to raise a child with special needs, or would I fail her and God all at the same time?  Sooooo many questions, so few answers.One question that I absolutely knew the answer to was, "Will we keep her?" Yes.  Resounding.  Resolute.  Without a doubt.  Yes.  Whoever that baby would become, whatever challenges we would face--she was ours and we would keep her.

The weeks, months and now four-almost-*gulp*-FIVE years later I simply do not want to imagine life without my ravishingly beautiful, sweet-natured, intelligent, compassionate, wonderful Rachel.  The gift of her life is one that I will never in all the millenia of eternity be able to thank God adequately for. Sure, there are challenges involved in raising Rachel--but I'm pretty sure there are challenges to raising every child ever. There would be a lot fewer Starbucks around if parenting was easy, just sayin'!  But worth it?  Oooooooh yes.

The month of October is National Down Syndrome Month--something I didn't actually know until just a few weeks ago!  So, in honor of Rachel and all of the many babies, children, teenagers, men and women around the globe who share her almond-shaped eyes, tender heart and extra copy of the 21st chromosome, I am going to blog every day in October.  About Rachel.  About Down Syndrome.  About Acceptance. About Love.  About Family.  About Life.