Another Thursday, June 4

Dear Andy,

Today is Thursday, June 4. It’s the first “official” day of summer vacation for your little sister and brother. The sun is shining, and the day looks like it will be a hot one. Daddy and I are taking Lucy and Will to the pool for the morning. We thought the best way to honor you today was to do something you loved – and, my sweet boy, you did love the freedom of the water. Lucy plans to go down the slide with Daddy, and Will wants to jump in the deep end. I hope to see lots of dragonflies and imagine that all three of my kids are splashing in the water together.

Then, Daddy will head off to work, and we’ll head home to nap. We’ll meet back up with him at your garden in the late afternoon, so we can be with you at 5:05 PM. Lucy and Will want to blow bubbles for you too. After that, it’s home for our dinner, bath time, and bedtime routine. We’ll hug and kiss your sister and brother goodnight, wishing them sweet dreams and saying we’ll see them in the morning. Like always, we’ll ask them to hold you close in their hearts. And, the day will be done.

It’s another bittersweet day, filled with the highs and lows that we’ve become accustomed to since you were here. You taught us how to laugh through the tears, and we’ve put your lessons to good use. Still, I can’t help but think how this day stands in stark juxtaposition to Thursday, June 4, 2009.

Our last day with you.

We spent the morning of that Thursday six years ago moving you from the room you shared in the pediatric ICU of the children’s hospital to a private room. You coded during the move, your face turning blue as I held you. You were scared, and so was I, but you calmed down and settled into your new crib. I continued to panic because, while in my head I knew the end was near, I did not understand it in my heart. I wasn’t prepared to lose you like that.

It might have been hot that day too; I don’t know. All I felt was cold.

For the rest of the morning and into the afternoon, friends and family members came by to visit. Gigi and Papa. Aunt Audrey and Uncle Frank. Our friends Chip and Sarah. Co-workers from Mommy’s office. Daddy and I had called everyone at daybreak to say that your pneumonia, caused by aspiration due to SMA, was getting worse. That your lungs were failing. So they came to support us and to see you once more. You tried to smile at every visitor; we tried not to fall apart.

We were faced with a heartbreaking choice: to put you through surgery that you might not survive in a last ditch effort to save you or to let you go. We looked to you to lead the way.

And then, as the late afternoon sun filtered through the hospital window, you closed your eyes. Tired from fighting, you fell into a deep, peaceful sleep. It was the first time in several days that you had rested without pain. I knew in my heart that you were beginning your journey away from us. Daddy made the respiratory therapist perform another treatment on you, hoping against hope that we could buy more time with you.

We kissed you all over, from the curl on the top of your head to the soles of your feet. We sang your favorite song, like we did every night at bedtime. We brushed our lips against your chubby cheeks, whispering that you could go if you needed too. That we’d love you forever. That you didn’t need to worry about us anymore.

You took your last breath at 5:05 PM. Your pain had ended; ours had just begun.

The nurses disconnected the machines and removed the tubes from you, allowing me to pick you up and put you on my shoulder one final time. Daddy held us both. Everyone else left the hospital room, leaving the three of us alone.  The way we had been just 20 short weeks before on the day you were born. That was a Thursday too.

But, this time, we would have to leave the hospital without you. Our once happy family was broken-hearted and broken apart. It took us three hours to let you go and to walk out of the PICU’s doors.

It must have been a hot day. The heat waves rose from the pavement in the hospital parking lot as we made our way to the car, but I didn’t feel anything but grief. I was so numb. My face was wet with tears. We started driving towards the sunset, brilliant in its pinks, oranges, and gold. We hoped that it was a sign from you. We needed to know that you were safe.

We second-guessed our decisions as the miles passed and the distance from the hospital – and you – grew. Had the doctors given us good counsel? Had we done enough? Was this really what you wanted? Did we let go too soon? How did we get to this dark place?

We ended up at your Gigi and Papa’s house, just before 9 PM. We simply couldn’t face going home without you, where everything was how we haphazardly left it as we rushed you to the hospital in respiratory distress. Where your little blue bedroom would remain empty. Nana, Granddad, Auntie Eimear, and Uncle Ed were waiting for us, with tear-streaked faces and open arms. They had flown in from Dublin, racing against time to get to you. To us. But time wasn’t on our side.

Soon, Daddy and I excused ourselves for bed. I refused to wash my face or change into pajamas; your sweat was on my skin and your scent on my clothes. How could I take them off? Your daddy held me, with his head against the same shoulder where you last laid. We sobbed into the darkness. And, in the depth of the night, I felt the warm weight of you pressing against my chest, and I knew you really had found peace. Sleep came to claim us. The day – the worst day of our lives – was done. And, we would never take the certainty of another day for granted.

2,190 days have come and gone since then. And, my first thought when I get out of bed each morning is of you. I miss you so very much and always will.

Yet, as time has passed, our days have morphed from overwhelming sadness to renewed happiness. Six years later, I can feel the warmth of June again. Your little sister and brother have helped to mend our hearts and to keep us focused on the present.

But there are still moments, sometimes surreal and always disconcerting, when I’m transported back to that sterile hospital room. Feeling you slip away from me, but frozen in place by despair. When that happens – when the chasm of time and space between us feels insurmountable and overwhelming – I think about a quote I once read from an unknown author:

“They say that time in Heaven is compared to the ‘blink of an eye’ for us on earth. It helps me to think of you running ahead of me through a beautiful field of wild flowers and butterflies; so happy and completely caught up in what you’re doing, and when you turn around, I’ll already be there.”

I hope that, my Andy, the sun is shining brightly wherever you are. Just blink, and I’ll be by your side once again. Together, we’ll bask in the sun, and we’ll forget that we were ever apart.

But, for today, send me those dragonflies while we’re at the pool, and I’ll know that you are near. You are always in my heart.

Loving you always and forever,



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One Response to Another Thursday, June 4

  1. GiGi says:

    you did come to visit your mommy, daddy, little sister and brother in the pool today. We all shouted a great big HELLO, ANDY! We smile more because Lucy and Will make us so happy. But, you will never be forgotten and we will keep working to cure SMA until the day we see you again!

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