Friday, May 13, 2011

A letter to my daughter

Dear Kayla,

How can I put into words the pure joy you have brought into my life over these past five years?  How could I ever tell you exactly what you mean to me and explain the incredible journey we have shared together?  My life has been magical since you were placed in my arms just five years ago today.  Just like the best scenes to my favorite movies, many memories we have shared play in my mind over and over with such clarity.  Like the day you were born…

“She has the cutest little button nose”, Daddy exclaimed as he looked over the paper-like blue curtain that separated me from my future…my life as your Mommy.  As I lye there, nauseous, strapped to the operating table, I envisioned my daughter.  I envisioned you having my hair and Daddy’s eyes.  I was anxious.  I couldn’t wait to hold you in my arms…kissing you, telling you how very much I loved you and couldn’t wait to be your Mommy.  I couldn’t wait to hold my perfect little girl. 

I was scheduled to have a c-section on Monday, May 15 {you were breech and weren’t budging so we were going to have to go after you}.  As with every other time in your five years, you had your own plans.  You wanted to make your arrival when you wanted…not when we planned for.  So during the night of Friday, May 12, I began feeling uncomfortable.  Thinking it was nothing more than horrible gas pains I went to bed and awoke early still feeling uncomfortable.  I was comforted that I wasn’t in labor, as I had just seen the doctor hours earlier who said I was not even close to going into labor and they would see me Monday morning.  My pregnancy began with cravings of jelly donuts.  Strange – I know…but that’s what I craved…that and corn dogs.  Let me say…I have never been a fan of either but my body needed them during my pregnancy.  The jelly donut craving subsided by my second trimester but for some reason the morning of May 13 I was jones-ing for a jelly donut.  I sent Daddy to Dunkin Donuts to buy you a jelly donut {because it was, of course, you that was craving the donut and Daddy would do anything for you…even then}.  By the time he returned {around 9am}, I was in labor with contractions that were 7 short minutes apart.  We placed a call to the doctor and made our way into the hospital.  Knowing I would need c-section and food is not recommended before surgery I was left craving that donut, smelling it…not tasting it {good thing I had you to look forward to or I would have been very grumpy}.  Once we made our way to the hospital, we made our phone calls to family and patiently waited for an operating room.

I remember being afraid of surgery...of the operating room...but keeping a positive attitude, I joked with the nurses on my way in.  Staring at the ceiling from the stretcher, I said "so this is what the inside of an operating room looks like...nothing like it looks on TV".  That was the last piece of laughter that would exit my body for a few days...Everything was happening so quick around me.  I felt tugging and pulling and then was the moment that you entered the world...on May 13, 2006 at 3:29 in the afternoon.  As I lay there I caught a quick glimpse of your naked newborn body as they whisked you to the scale to perform your newborn testing… There was no crying.  I heard nothing and I panicked.  What is wrong?  Oh, God…please make everything ok…please…I would give anything for you to be ok.  Daddy sat next to me, stroking my shoulder and kissing my forehead.  I am sure he told me that he loved me and other sweet things, though I don’t remember the words.  While the next few moments are more vivid than any moments in my life, those moments leading up to the muttered words are gone.  I told Daddy to go be with you, comfort you and talk to you.  I watched him walk away from me, toward you.  I studied the excitement in his face.  I witnessed him fill with pride as he stood over you.  His face lit up like I had never seen before.  He was a Daddy…a very proud Daddy.  And while I wish that memory, that face was the one that was etched into my mind forever, it was the next face that I will never forget.  Daddy snapped pictures feverishly.  After taking at least a dozen pictures, he held the camera at his side.  Still beaming with pride, he looked on as the doctors were assessing you.  For some reason I couldn’t hear and yet you and the team of doctors that surrounded you were just 10 feet away.  Perhaps the doctors were whispering or perhaps my overwhelming emotions of being a new Mom caused me to temporarily lose my hearing.  Whatever the reason, I just couldn’t hear a thing.  As the doctor was busy stitching me up, tugging and pulling at my body, I laid there with my head turned to my left, staring at the backs of doctors in their blue scrubs, wanting so badly to see my daughter.  Wanting so badly to hold you in my arms.  And then I saw Daddy.  Standing proud as a peacock, shoulders back, smiling from ear to ear…and then…within seconds it seemed as if he lost all of the air in his body…his shoulders slumped, his smile was gone and he stood emotionless…staring…listening to the doctors.  I remember yelling out “what’s the matter?” and Rick came running to my side… “nothing”, he assured me, “nothing is wrong”…as you cried I told Daddy to go back to be with you and he did.  Still, staring blankly.  I knew something was wrong.  I knew that he was trying to protect me from something and I cried for him to come back.  I begged him to tell me what the doctors told him…and he whispered “everything is fine.  The doctors think she may have Down syndrome”.  I layed on that operating table, staring at the bright florescent lights and the white ceiling tiles.  I was helpless…unable to hold my baby and without ever seeing your beautiful face I was met with the words Down syndrome.  While it would be days later that I would find out what they said to Daddy, we will never forget those words…that moment when Daddy fell paralyzed with fear, breathless…that moment is the moment that the doctor said to him “I need to show you what is wrong with your daughter” as she proceeded to point out your simian crease on the palm of your hand, your beautiful almond shaped eyes and your flat nose bridge. Then she spoke those two little life-changing words…Down syndrome.  Surely someone in the medical field could have used better terms than “what is wrong with your daughter”…but she didn’t.  Pointing out what is wrong instead of congratulating a new father on the birth of his beautiful daughter. Allowing us time to enjoy our daughter before delivering us the suspected diagnosis.  Moments later they placed you in my arms and I knew.
I saw your round face, your cute little button nose and those almond shaped eyes.  While they were filled with that post-birth goo, I looked into your eyes and I knew.  It was as if I was gifted that Mommy-instinct at that exact moment and in that moment, I knew you had Down syndrome.  As I held you tight and kissed you, I whispered I loved you but wondered if I truly ever could love you.  If I truly had the capacity to love someone that wasn’t “perfect”.  As tears rolled down my cheeks, I held you close and the world around me was blank.  I pressed your head into the crook of my neck as I lay my cheek upon your head.  I closed my eyes and felt as if I left my own body.  I could never explain that moment with the passion and feeling that surged through my body but it was raw and it was real and I felt it.  I felt my body empty.  My heart, my soul, my life and my world poured out of my body.  Within those moments I was rolled from the operating room to the post-op room.  Knowing that family was anxiously waiting downstairs for the call or visit from Daddy that I was ok and you had “ten fingers and ten toes”, he picked up the cell phone and called MomMom {at my request because I knew I couldn’t tell her the news}.  You were having difficulty maintaining your body temperature so the nurse placed you in a warmer next to me.  As Daddy spoke to MomMom, I stared over my right shoulder at you, my daughter, lying under a heat lamp like a chicken dinner.  I heard the casual back and forth of yes she is in recovery and doing well…he explained you looked just like a little loaf of bread...and then the pause…Daddy looked down at the tile floor, turned his back to me and muttered “they think she has Down syndrome”…and with that was silence for what seemed like an eternity.  I remember feeling bad.  Knowing all of the pain and hard times my Mom has endured over the years, knowing how much she was anticipating your arrival and knowing she would never expect this.  She would never expect this diagnosis.  In those moments, I re-played a conversation with her.  About 8 months pregnant, walking through the mall as we shopped for our most anticipated arrival {you}, we talked about the what-ifs in life and MomMom reassured me God would only grace us with a “perfect” child because he knew just how hard her life has been.  With that conversation rewinding and replaying through my mind in that recovery room, I felt shame.  I felt like I was letting her down.  There was more back and forth and then Daddy confirmed it was ok to come visit, two at a time.  When he hung up I braced myself.  I felt fear rush through my body.  I didn’t want my Mom, your MomMom, yet I needed her.  I needed her to heal my wound with a band-aid and a kiss.  I needed my Mommy to take away the pain.  The fear.  The sadness. I needed to hear her voice, reassuring me that everything would be ok.  Within seconds she entered the room with blood-shot eyes and a smile.  I know now that she cried in the waiting room for me.  She cried for my heartache and my fears because she knew you would be just fine.  And while she cried as she looked at you, they were the happiest tears I have ever seen.  Her pride, her love and her joy for you…for us…it was contagious.  And with that I felt a bit of fear leave my body.  Visitors came and went…and then it was just us…our family.  The nurse allowed Daddy to stay longer than visiting hours permitted, knowing the news of your expected diagnosis.  Knowing I probably needed him.  And I did.  While I don’t recall any of our conversation, I will never forget his actions.  I will never forget his instant love for you.
It radiated through him and took over his soul; poured through his entire body and I could see it in his eyes.  You were his baby girl and he loved you and cared for you with every ounce of his being.   

As your birthday ended, I remember pressing your naked body against my bare chest in the dark hours of the night.  Hearing monitors beeping in the hall and babies crying from other rooms, I held you tight.  I studied your face with your flawless milky skin, your brilliant sky blue almond-shaped eyes, your button nose and heart-shaped pinkest of pink lips.

That image of you will live in my mind forever.  I will never forget holding you during those hours.  I will never forget those moments with you as we entered the early hours of my very first Mother’s Day.  I clutched you with every ounce of my being.  Tears rolling down my face and onto yours, I cried for you.  I cried for the you that I wanted you to be.  The “perfect” baby I needed and wanted.  And while I loved you, I was struggling with accepting you.  I wanted so badly to pick up the phone to call my friends.  I needed people by my side, yet couldn’t bare the thought of speaking those words…Down syndrome.  There was no doubt I wanted people to love you and accept you…but how could I expect people to accept you when I couldn’t accept the diagnosis that is part of you?

Unfortunately, the feelings of despair, helplessness and sadness remained through most of our stay at the hospital.  The moments that we were alone were special but some of our visitors walked into the room, quiet, not making eye contact.  Instead of congratulations, I heard “how are you?”  And while they may have truly just been asking how I felt, I read into it.  Just as people ask “how are you doing” when you lose an uncle, spouse or child…to me, it seemed as if people were walking into a funeral instead of coming to visit a new baby.  And in those moments, I lost it.  While I don’t remember my exact demands, I know my yelling cleared the room.  I know that my sadness hit a point of no return and I needed people surrounding me to congratulate me and love you.  I needed for everything to be ok.  I needed for you to be perfect, just like everyone expected you to be.  The irony was while I saw that extra chromosome, most convinced me it couldn’t be.  Friends and family members convinced me you didn’t have Down syndrome.  Most family members looked at those characteristics the doctors pointed out and found those same characteristics in themselves. 

While I didn’t want to envision people with Down syndrome that I have met or encountered in my life, I did.  While I didn’t want to put you in that “box”, I did.  And while I envisioned those people, visitors continued to assure me there was no way you had Down syndrome.  I am ashamed to admit that it felt good to hear “she doesn’t look like she has Down’s” or “she’s too pretty to have Down syndrome”…because what does that mean?  Kayla doesn't look like she has Down syndrome.  And neither do JJ, Nella, Victoria, Grace, River, Charlotte, Natalie, Brendan, Matt, or my many other friends.  They all look exactly the way they were meant to their Moms and Dads, brothers and sisters and cousins.  And yes, while they do possess characteristics that resemble each other, they all look much more like their family than each other...than a "box" labeled Down syndrome.

We didn’t receive the official diagnosis for three weeks.  That night as I was trying to process the news, I remember standing in the shower sobbing.  I remember the water hitting my back as tears fell down upon my feet.  Weak and helpless, I leaned my body against the cold tile wall.  I slowly slumped until I reached the shower floor.  I allowed myself that time to cry.  I allowed myself to release the pain, the loss that I was feeling.  That fear of will you walk, talk, have friends, go to prom, drive, get married, have a career…those fears filled my mind and tears filled my eyes, ache filled my heart.  The shower became that place for me…that place of safety where I could cry and release my anger and my sadness.

All of those moments of fear…the moment that Daddy was delivered the news that you “weren’t perfect”…the moment that family members came in to visit you in the hospital with tears and fear in their eyes…and those moments when I tried to wish away Down syndrome…they were all because of the unknown.  None of us understood.  None of us could even imagine the amazingly beautiful, intelligent, kind and loving five-year-old little girl that you are today.  None of us imagined your abilities in those moments of fear.  In those moments I saw disabilities.  I saw differences.

While I loved you and photographed every bit of you...every face, every outfit, everyday…I lived with fear.  I lived with the what-ifs and the whens?  What if this happens and when will this happen?  And as you hit milestones those fears started to slowly fade.  One day while sharing my fears about your future with a friend, clarity hit me like a ton of bricks…that clarity is this…no mom knows who their child will grow up to be.  No mom knows when their child will walk or talk.  No mom knows if their child will go to prom or college or get married…and as moms, we can just hope for a bright future as we set our children up for success.  Since that day, since that moment, I have looked forward.  I have hoped forward.  I have worked and pushed and fought for you.  I have loved you fully for who you are.  And while I have moments and even days of worry, I know those worries are the same worries that every Mommy has. 

If only everyone could have seen you then as you are today...we all would have seen you just as you are, just as you were meant to be… perfect.

For you are more loving than any five year old I know.  You are kind, caring, have impeccable manners, love unconditionally and live fully.  You are beyond perfection.  Your joy is infectious…your laughter contagious and your desire to learn is admirable.  While we have been on this journey together, I promise you that I have learned more from you in these past five years than you will ever from me.  Together, we have been an inseparable team…a force.  We have been breaking down stereotypes, discouraging the use of hateful words…living fully and loving unconditionally each and everyday.

I am changed.  I am better.  Because of you.  Each moment and each day that passes is better than the one before…and while some days may not be easy, each day is filled with life and love and laughter.  Each day that is filled with time spent with you is the greatest gift I could wish for.  I know that time is passing fast but I am trying to hang on…trying to enjoy each moment of this sweet ride.  This roller coaster ride of life of ups and downs and twists and turns is just that…a ride.  We’re hanging on when we are filled with fear and letting go when we are brave.  There have been many moments when I clutched that safety bar until my knuckles turned white…moments of fear when I wanted to apply the breaks…but just when I think I can’t take it any longer, I think of you…I look at you…and I smile…and each moment of pain, bit of fear, worry of milestones, and thought of “special needs” disappears.  And while those darker days are what make today brighter…they seem so far in the past.  I no longer think of Down syndrome on a daily basis.  I no longer think of “special needs”.  I think of you.  Yes…Down syndrome is a part of you…but that extra magical chromosome that makes you who you are, I no longer fear that chromosome.  I am proud of that chromosome and I am proud of you.

Five years has brought love, acceptance, courage and new friends into our lives.  No matter where we go, people know you…they know you by name.  You enter restaurants and are greeted with a loud, cheerful, “KAYLA”!  Some don’t know my name…but they know you.  In Rehoboth Beach where we do the Boardwalk Buddy Walk, vendors around town…like Ryan’s Surf Shop and the Christmas Shop welcome you with hugs and love {and usually a little gift}.  The staff at the Cheesecake Factory know and love you and are excited every time we eat there.  People have changed their majors to Special Education because of you.  People have stopped using the R-word because of you.  People have become more understanding and accepting because of you…and I am one of those people.  While you may not be who I thought you would be, you have turned me into the person I am supposed to be.  Thank you, Kayla, for all that you bring into my life.

You bring opportunities that I never imagined possible the first time I held you in my arms.  Life-long friendships have been made because of you.  Hearts melt with every smile and opinions change with every “hi, I’m Kayla…what’s your name?” {in your cutest voice}.

Those that met you with fear are now believers.  They are filled with love and hope for your future.  Those that did not understand Down syndrome now understand.  We all understand that while you have Down syndrome, it does not define who you are or who you will grow up to be. 

While some of our first moments together have faded, the guilt of not accepting you fully from the beginning is real and powerful.  I feel it from the core of my soul.  For as long as I remember those moments, for as long as I breathe, I promise you this…

I will never treat you different, expect less of you or stop pushing you to try harder. I will never allow anyone to disrespect you. 

I will always encourage you, respect you, be your biggest fan, your advocate and your supporter.  I will always hope for a brighter, more accepting tomorrow.  But above all, I will always love you for who you beautiful, amazing, intelligent, fun-loving daughter with designer genes.  And you are rockin’ those genes. 

Happy 5th Birthday, Kayla!  Our five-year journey has been filled with the most incredible memories…

some of the most amazing moments of my life and I look forward to each and every moment in our future.  You are exactly who you were meant to be and I have no doubt you will make the most incredible impact in the lives of many.  Shine bright, little star.  Shine bright.

You will always be my perfect princess.


  1. OMG...I bawled through this entire post!!! What a beautiful, beautiful letter to your daughter. I am so glad I had the opportunity to read this, it really touched me. Loved the pictures too! My fav was the one with the cabbage patch dolls, adorable! Happy Birthday to your sweet girl!

  2. Absolutely beautiful! Thanks for sharing!

  3. Amy- this is the most amazing letter I have read. Kayla is unbelievably luck to have you as a Mommy. I bawled my eyes out and still am. Happy Birthday princess <3

  4. I was sent a link to your blog to check out your amazing Rockstar party, but found myself drawn to this post. Boy am I glad I did! I read your beautiful, honest message through tear-filled eyes as I, too, have a rockstar baby who is "less than perfect." I understand the mourning that occurs with the loss of the idea of what your baby "should" be, the overwhelming joy of seeing your daughter fight harder and flourish, and the desire to sucker punch someone right in the nose for using the word retard. I just wanted give you a Mom-to-Mom high five and tell you that while our families may not be viewed as perfect, they are beautiful! May you always see the world through Kayla's beautiful blue almond-shaped eyes...and thank you for allowing others to share this heartfelt letter.

  5. I just found your blog from another I read. My little girl Emily has DS and just turned 2. I loved this post, I will be back to follow :-)

    Kelli @

  6. My heart is aching my daughter has the crease on her palm and her nose has no bridge I don't get the results until 2 weeks I'm so sad

  7. BEAUTIFUL photos! Any interest in having your daughter profiled on a website supporting the pro-life choice for babies with Down syndrome? Email me at

  8. Amy, just read your beautiful letter...You are an amazing mommy...God Bless Kayla...

  9. Amy, I just stumbled upon this letter this afternoon. I couldn't stop the smile that came to my face, or the tears that ran down it. My husband and I just found out this afternoon that our daughter (due in September) may possibly have down syndrome. This letter was just what I needed to put everything in perspective and help me wade through all the thoughts, and fears in my mind. Thank you for so beautifully sharing your love for your daughter with all of us.

  10. Your daughter is beautiful inside and out... May you always be blessed....

  11. Um, wow. Kayla isn't going to take the fact you doubted loving her for her being born with a flawed body very well when she finally reads this letter.

  12. What a beautiful and awesome letter. Stay strong