Your favorite song was “Over the Rainbow.” I played the Hawaiian version of the song over and over again when I was pregnant with you, singing along with the “Ohhhh, Ohhhh, Ohhhhs” and dreaming of the boy you’d be. After you were born, I played it every night, since it always could calm you and lull you to sleep. After you were diagnosed with Spinal Muscular Atrophy, I played it even more, wishing for a future where you would be safe and where our dreams for you would still come true.
“Someday I’ll wish upon a star, Wake up where the clouds are far behind me, Where trouble melts like lemon drops, High above the chimney tops that’s where you’ll find me.”
I’ve always wondered if your love for this song was prophetic.
After a mere 20 weeks in this world, you left us on Thursday, June 4, 2009, for a place beyond the clouds. Three years later, we still look to the sky for signs from you. You are the brilliant colors of the sunset. You are the twinkling of the stars. You are the fluttering wings of the dragonflies that circle around us. You are on the other side of the rainbow, watching over our family.
Since we’ve been apart, so much has changed for us. Even though I thought time should have stopped on the day you left, the world has kept spinning. Life has moved forward. But, that doesn’t mean that we have left you behind.
Andy, you are never far from my thoughts. No amount of passing time could cause my love for you to fade. My memories may grow hazy around the edges, but I will never forget.
I remember the humid April night when I discovered I was pregnant. How I told your father, wide-eyed with excitement and positive pregnancy test in hand, that we would finally be a family. And, how he responded, “Where’s the box? Where’s the directions?”
I remember the nurse who called me with some pre-natal test results and asked if I wanted to know the sex of the baby. I answered, “Of course,” and she said, “Mrs. Butler, you are having a boy.” So afraid that I’d lose the details of the moment in my excitement, I wrote in my notebook, “Test results are normal. We have a son.”
I remember the first time you kicked hard enough for your dad to feel it. We were at a hotel in New York, on our way back from a trip to Ireland. It was early September, and I was 24 weeks pregnant. It was the moment that my pregnancy became real for both of us. We couldn’t wait to meet you.
I remember, on the day that you were born – Thursday, January 8, 2009 – that the nurses called you “Mr. Big” in the recovery room. At 9 pounds and 14 ounces, you were the biggest and most handsome baby in the newborn nursery. To me, you were perfect in every way.
I remember holding you as a newborn, watching as you puckered your lips and stared at me with great intensity. Still drug-addled from my c-section surgery, I said, “Look, Andy’s a baby genius! He’s trying to kiss me!” In reality, you were just trying to let me know that you were hungry.
Just home from the hospital, I remember rocking with you to sleep in your little blue room with “Over the Rainbow” playing softly in the background. I watched you struggle to keep your eyes open because you didn’t want to miss a moment of this new life and reflected on how much you’d already changed mine. Even over-whelmed and sleep-deprived, I remember thinking that I had never experienced love like this before.
I remember the way that you smiled at me from your big bed in the pediatric intensive care unit of the hospital when you were just seven weeks old. We just had heard the words “Spinal Muscular Atrophy” for the first time, and your father and I were terrified. But you were content – you only needed our love to be happy, and you only needed to be near us to smile. We looked to you, our baby boy with weakening muscles, for strength.
I remember being so proud of you as you kicked in the bathtub – your favorite place other than my arms. You were free in the water. You were defying the odds, one splash at a time.
I remember how you loved to grab the linking toys that hung from your playpen, giggling when you got one in your grasp. You never gave up, even when it became difficult for you to lift your little arms.
I remember how we played “Clap, Clap Hands” as you lay on your navy blue changing pad. You would grin at me as I circled your hands in the air. I helped you move, and you helped me smile.
I remember how you would get impatient if I didn’t press play on your Baby Einstein video quickly enough. You would hum for my attention, if I was even one second late. But, I was never far from your side.
I remember tickling you with your puppy puppet, as you quietly laughed. As soft as it was, your laugh was infectious. No matter where we were, you filled the room with joy.
I remember how you snuggled against me as I read to you. Your favorite book was “Mr. Happy” – so fitting for my very own Mr. Happy.
I remember how you flirted with all of the nurses that we saw during your many visits to doctors’ offices and stays at the hospital. You especially loved the women with long blonde hair. You would bat your long eyelashes at them – and they would melt.
Near the end of your last visit to the ICU, I remember flipping up your hospital gown and calling “Boys Gone Wild,” to make you giggle. A squeaky sound that helped cut the tension in the hospital room and made the cold fear of the unknown retreat for a moment.
While all of the small details may not be as clear as they once were, these are the memories that remain forever etched into my mind. These are the thoughts that allow me to smile through the tears. A lifetime of memories made in just a few fleeting weeks.
Still, I have to admit that, sometimes, I wish I could erase my recollections of the darker moments. The days that continue to haunt me, keeping me awake at night and filling me with regret. The memories that bring me to my knees, leaving me once again helpless, filled with fear that I failed you, and consumed by grief.
I remember the frantic pediatric visit that lead us to the ICU for the first time. The day of your diagnosis. The times you choked and turned blue.
I remember the day we said goodbye, three years ago today.
Just before sunset on that day, your father and I sang your favorite lullaby to you for the last time. We kissed you from head to toe and tucked your Superman blanket under your chin, as if we were putting you to bed on any other night. It almost looked as if you were sleeping, but your body was too still. The pink in your cheeks was fading. You had been gone from us for three hours, but we didn’t know how to leave you. Goodbye was too final.
We took one last look at you, free of all of the wires and machines, as we turned to open the door. You were as beautiful and perfect as the day you were born. We hoped that you had found freedom from pain and disease – that we would gladly take this anguish in exchange for your peace.
The chaplain was waiting for us just outside your hospital room – she had been standing there all day. I asked her to take care of you as I would, as tears streamed down my face. We walked past the nurses’ stand, and I saw that they were crying too.
Your father and I clutched each other’s hands as we walked out of the hospital, making our way to the car. We had never left any hospital without you with us, since the day you were born. It all seemed so wrong. The late spring breeze should have been warm, but I felt cold.
As we started to drive away, I panicked. We simply couldn’t leave you there alone. We had to go back for you. But, your father put his hand on my knee and said, “Look up.” I looked at the sky, now painted with the golds, oranges, pinks, purples and reds of a radiant sunset. “He’s not in that hospital room,” your dad told me. “He’s there. That’s for us. He is free.”
You had found the other side of the rainbow, and the sky was a message to us. You were finally where you needed to be.
Here on earth, I’ve had to learn to live with the pain of losing you. While there’s no getting over this loss, I’ve had to accept it as another part of our journey together, giving balance to all of the joy you brought to us and perspective to this life. I’ve come to understand that the difficult memories are just as important as the good. That the experience of having you in this world – and your legacy that continues – is so much greater than our grief.
And, I’ve discovered that amazing beauty can be found within the darkest of times. There were moments in your last day, as hard as it was, that were nothing short of ethereal.
But, I’ve also had to learn that if I hold on to the memories of days past too tightly, I will lose myself in them – turning my back on the present and all it has to offer. I’ve had to find the balance, so fragile and ever-changing, between yesterday and today. I continuously have to remind myself that you’d want us to embrace each day we have, cherishing each moment until we meet you again. I’ve had to give myself permission to be happy and to recognize that any joy I now feel does not detract from your memory, but adds to it.
I have to remember that time is not just taking me farther from you, but that it also will bring me closer to seeing you again. That, to you, we only will have been parted for an insignificant moment. The instant it takes a rainbow to appear and then vanish.
But, simply remembering isn’t enough. Knowing what I need to do isn’t enough. I actually have to do it. I have to get out of bed every day and really live. For you. For your dad and little sister. For me.
Recently, I’ve been listening to songs by the Muppets with your sister. When “The Rainbow Connection” comes on, I always think of you. Another song about rainbows. Another anthem of hope. Another message from you.
“What’s so amazing that keeps us star gazing and what do we think we might see? Someday we’ll find it, the rainbow connection. The lovers, the dreamers and me.”
I understand now that we remain connected, just on different sides of the rainbow. You are always with us – forever a part of our family. You are not confined to the past or to our dreams – you impact everything we do and everything we will become. The grief and regret that I have been carrying with me only acts as a wall, keeping us apart. And, I don’t want anything to break my connection to you. I am working very hard to let go of that sorrow.
Today, in honor of your angel day, I am taking a step forward.
This morning, your father and I are going back to the hospital – the first time we’re returned since the night we said goodbye to you three years ago. The hospital has changed since then – they have moved to a new building in a different place. But, for us, your memory still lingers there. We are facing that memory so we can deliver a donation of the linking toys you loved so much to the children there on your behalf.
Our goal today is to bring a little bit of home and happiness to other hospitalized babies and their families. To share some of your spirit and strength with them. To give them a reason to smile in an often-scary place. Through this small act, we hope that we might find some peace too.
And, I hope that it is a day that I will remember fondly.
I’m sure that, on our way out of the hospital, we will look to the sky once again for a sign from you. We will then visit your grave, adorned with blue, purple, and yellow flowers – the colors of your happiness. We will look for your smile reflected in the clouds. We will listen for your voice on the wind. We will watch for dragonflies soaring on the breeze. Through one of these signs, just maybe, you’ll let us know that you’re proud. And, we just might play “Over the Rainbow” while we drive home, remembering all that you are and smiling through the tears.
I love you, son. Forever and always.