Stroll for Strong

Annie, Elliot and Mama at our first Stroll for Strong

This Saturday our family is participating in the Stroll for Strong to raise money for Golisano Children's Hospital. This will be our third "Stroll" and I am sure there will be many more in the future.

It's not an easy thing for Stephen and me. Anything connected to the hospital, whether it be an appointment or simply driving by, is emotionally complicated. It is both our home and our heartbreak.

Every year we feel edgy leading up the the walk, and there is always an emotional encounter that day which resonates afterward, but we also leave feeling grateful that we went. This year, however, I wasn't sure if I was up to it. I thought maybe we would send a check instead. I approached Anneliese to discuss it since she had been talking about the Stroll for months. Her answer? "OF COURSE we are going to go! We ALWAYS go and we ALWAYS will!"

She is right, and once again we will put aside what would be easier emotionally to do what is best. I imagine on Saturday we will be overwhelmed with emotion again. Grateful by the support from friends and family who join us, humbled by the generous donations raised in Natalie's honor, and of course the overriding feelings of love for our daughter and the pain of losing her. We will go to bed Saturday night relieved, blessed and with resolve to go again next year.

If you would like to help support Team Natter's efforts this year there is a donation link on this page. Donations to our team support the pediatric palliative care department. The term "palliative" brings to mind end of life care, but really they do so much to improve the quality of life for young patients.

Natalie benefited from their services during her life. The pediatric palliative care team helped convert her IV pain meds to oral doses so that she could have relief from IVs, which were always a challenge on her small body. It seems like a simple thing, but when your child has gone through hours of IV attempts only to have the successful IV stop working that same day, you will cry from relief at having her meds given orally.

Our family, and many other families we have become close to, benefited from bereavement services provided by the palliative care team. This helped us tremendously in the aftermath of losing Natalie and we hope all families who are facing impossible loss can do so with help of loving professionals.

If you would like to learn more about the pediatric palliative care program at GCH this is an excellent article here.

We appreciate any and all support, even simply kind thoughts and prayers on Saturday.

Much love!

My Child Died Today

I lost my child today
People came to weep and cry
as I just sat and stared, dry eyed
They struggled to find words to say
to try and make the pain go away
I walked the floor in disbelief
I lost my child today.

I lost my child last month
Most of the people went away
Some still call and some still stay
I wait to wake up from this dream
This can't be real, I want to scream
Yet everything is locked inside
God, help me, I want to die
I lost my child last month.

I lost my child last year
Now people who had came, have gone
I sit and struggle all day long
to bear the pain so deep inside
And now my friends just question Why?
Why does this mother not move on?
Just sits and sings the same old song
Good heavens, it has been so long
I lost my child last year.

Time has not moved on for me
The numbness it has disappeared
My eyes have now cried many tears
I see the look upon your face
"She must move on and leave this place"
Yet I am trapped right here in time
The song’s the same, as is the rhyme
I lost my child.........today

--Netta Wilson, written in memory of her daughter Caprice Cara Wilson, who was killed in an auto accident (December 2, 1968 - November 20, 1994). Printed in the newsletter of The Compassionate Friends, Atlanta, May-June 2001

It has been one year since we lost our Natalie Evelyn. Intellectually I know this time has passed. I sit here with a 6 week old son, so clearly she did not die last week. Yet my concept of time is convoluted. All at once she was just here yesterday and gone for an eternity.

There is so much I want to say but the words just aren’t coming. I miss her. I miss her in a way that can break me in a thousand pieces. I am still learning how to live with this loss. Learning how to move myself and my family through unspeakable pain and towards more solid ground again.

I wish I had beautiful things to say here about grief and loss. I wish I had some wonderful philosophy that has pulled me through and tied a nice neat bow on the experience. I just don’t. A year is just not enough time to adjust to living without a person you hoped to have a lifetime with. I am still finding my way here and imagine that will be the case for some time.

We have had difficulty trying to plan a way to mark this one year anniversary. Her birthday was easier in a way-it marked her entry into the world and was something to be celebrated. This, though, is so very different. Facing those memories is so intense and leaves us wrung out. We have learned that there are times in which we grieve better privately, but still think of all those who love Natty right along with us.

If you would like to help us remember Natty, it would mean so much if you would consider performing a random act of kindness with her in mind to mark this anniversary. I would love if some happiness could go out into the world at a time when we are filled with so much pain. I think of how much light Natters brought to the world and how much more I know she would have blessed us with if she could have stayed. I suppose this would be a way to bring some of the brightness back.

Thank you so much for being here and caring about our sweet baby girl. Thank you for knowing Natalie.