I don’t think it’s a coincidence that I took a call at Children’s today for a baby who was dying. I also don’t think it was a coincidence that we ended up in the roof-top garden either. On the same day, in the same garden, one year after the moment I met Seamus. The day he saw the sky for the first time.

As I was up there photographing, for the first time since the day Seamus passed, I cried. And as I cried I remembered every single detail of the two days I spent in the garden with Seamus. And I laid my hand on the mom’s shoulder today and told her that there was a little boy up in heaven with her daughter today. And his name is Seamus.

Whenever I talk about my time during those two days in the NICU I talk about Seamus. Because it was Seamus that brought me there. He was who I was racing to get to as I dropped my kids at my moms and rearranged scheduled photo sessions. It was for him that I went.

But with the first click of my shutter I knew I was there for another reason. I wasn’t there for Seamus. He was just the one who called.

I was there for Sharon and Tom.

I was there to capture the love they have for their son. To capture images of now memories that would become foggy from grief and no sleep. To capture joyful moments and incredibly sad moments. To capture last moments.

And while I was there I wasn’t thinking of myself or my kids or the nurses or doctors or even Seamus. All I was thinking about was Tom and Sharon.

Because I couldn’t imagine being put in their position. To not only have to say goodbye to their son, their baby, but to say when. And how.

And after a year of other stories like theirs, I always come back to them. Because HOW they said goodbye was beautiful. And joyful. Seamus heard laughter amongst the tears those two days.

(it was super sunny that day so I had nurses and doctors holding blankets to shade them!)

If you ask Tom and Sharon, they will say to tell Seamus’ story but to not make it about them, that it’s not about them. But what they don’t realize is that MY side of Seamus’ story IS about them. My story IS them. Because they were who I was watching those two days. They are who I was photographing. They are who became our friends this year, our good friends. They are who taught me about love. Who taught me about parenting. Who taught me about protection and selflessness and grief. About laughter and friendship and inner circles and sisterhoods.

Two big things happened in the last year. Kim and I created Fresh Art and I met the Johnstons.

And on the first day I met the Johnston’s it was mostly joyful. Seamus got to see the sun! He was outside! His entire family was with him! It was incredible. But the second day we walked up to the garden. The second day.

It was just a different day.

That was the day they had to say goodbye.

To their son.

And it is a day that will be etched in my memory for the rest of my life.

Because not many people witness parents losing their child. But I did. I watched them sing to him and read to him and hug him and hold him and smile at him and kiss him goodbye. And I captured all of it for them.

And I bet you’re wondering why I am so hell bent on sharing their very private story. On a blog. For the world to see.

But the answer is simple.

I don’t want you to forget.

Because I never will.

And now the world won’t either. You won’t. When your kids are driving you crazy his name will pop in your head and you’ll calm down. When you feel like you’re having a bad day you’ll remember Tom and Sharon and feel grateful a flat tire is your worst day. You will remember. I promise.

Because these people remembered…

[sent in by Deb]

[sent in by abbie]

Please find attached my modest contribution, by my students.  Seventh graders here in the Bronx– our resident graffiti artist did the shamrock in the middle (you can see his little tag, “Sheep” in very small letters), and then the kids wrote “remember” in all the languages they speak: English, Spanish, Bengali, Urdu, Albanian, Russian, Ukrainian, and Arabic.

I did tell the story of Seamus, his parents, the NICU in STL, and your photography, along the way of collecting this artwork, and it was quite touching to see them respond to the story. Even kids in seventh grade have had family members die, or have had young cousins die, or pregnant aunties miscarry or lose their children.  They all printed the word “remember” very, very carefully, in their best handwriting. And Alfredo spent nearly an hour on the shamrock, perfecting different stylized designs until he got this one just right.
We are connected,
My child and I, by
An invisible cord
Not seen by the eye.
It’s not like the cord
That connects us ’til birth
This cord can’t been seen
By any on Earth.

This cord does it’s work
Right from the start.
It binds us together
Attached to my heart.

I know that it’s there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can’t be destroyed
It can’t be denied.

It’s stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you’re not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised…I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can’t take it away!

[sent in by maggie]
what a privilege and an honor to actually meet tom and sharon last weekend.  I commented on the initial blog entry telling Seamus’ story that I was glad that I read after having met the johnstons.  I was glad because there are people that we hear about or see on television with heart wrenching stories that even though while watching or hearing about them evokes a tear(s) but there is still the built in distance.  The beauty of meeting the johnstons and laughing and kidding around with them is that you all are real.  You are real people that have gone through something that the greater portion of the population will never have to experience.  I cannot begin to comprehend what it is like to lose a child.  I can imagine having an almost 8 month old girl that does my heart good just to be in the same room as her…so I think about Seamus.  I think about this little boy that had such a rough and short time here and yet based on what I have read the question of love and support for him and his family is unparalleled.  I don’t understand why children like Seamus don’t live and anyone that says they do outside of losing one of their own simply is trying to hard to encourage and is likely uncomfortable with grieving.
I know that my family is better off having met the johnstons and having been encouraged by their transparent willingness to talk about and interact with the real grief and the real joy that they feel about and for Seamus.  So, my inclination is to say…Hurray for Seamus, Hurray for Seamus, Hurray for Seamus…he is not forgotten and will not be forgotten.  We have pictures of our sweet Audrey to remember him by and we continue to pray for the healing and the journey forward for Tom and Sharon.  Truly, thank you for letting us in and thank you for letting us help you celebrate your sweet Son….the clowers
[sent in by the clowers]
Tom and Sharon…. thank you for sharing Seamus with all of us. Thank you for letting me into your life this year. You have blessed me beyond words. And although Kim and I have worked really hard on the Shoot for Seamus, my gift to you is this.
The world will never forget. Seamus.
I love you guys and we’ll see you in the NICU bright and early tomorrow to celebrate the life of your beautiful son!
love jodie
If you’d like to remember Seamus today please email me a link to your blog or leave it in the comments…
Missy&Sonya remember HERE.
I will continue to add links here later tonight…