Tending my own soul

It has been a month since I last wrote here. I have written elsewhere but I've missed the ease of the keyboard, the familiarity of this place, this safe space to hold my thoughts. So here I am again, privately. Perhaps this all will be just saved as "draft", yes, in fact, I know it will for now. I needed to end my days of such public chronicling, I needed privacy.

I have found myself on many days doing well, moving back into life, thinking I'm doing just fine. But lately, I have been walking through the valley. Yes, I can see the high mountain peak of the playground and how ever since I have been descending to this place. I am so sad. I am overwhelmingly sad. I've grown angry, angrier than I've been throughout any of this. I am questioning and redefining. I think over and over again about what a friend said about loss, that it is like having your arm amputated and you never get it back, that you must learn to live life with out that limb. It made a lot of sense the first time I heard it. Now, I'm yelling back at God, "Why did you cut off my arm?!"

I'm angry with some who I believed to be friends who have expected too much of me. I'm angry over losing friends but then I don't care. I don't care that I've lost them. The world seems selfish and unkind to me. I want to say leave me alone and I do by not caring. I curse more than I ever have with fuck being the favored expletive. It seems the most appropriate - the most shocking and raw - it is a word I have never had as part of my vocabulary. I feel I deserve to indulge in something wrong. After all, what has being good done for me? All my years of caring and doing what was "right" did nothing for me. My son still fucking died.

So, I'm trying to hear myself, trying to listen for what I need. I am drinking wine at three o'clock and cooking myself a pizza because it is the most distinct thing I can hear myself wanting at this very moment. I realize that nobody else is going to tend to me, I am all I have. Everyone else will gladly accept that this whole ordeal is over and I am fine. But I am so not fine. I am not OK. I am not OK.

"Our Family" by Ella Anderson

Zane, Daddy holding baby Sully, Mommy and Ella wearing crowns
April, 2008

A final post

I have packed for my trip. I fly to meet Brad tomorrow for our retreat from the world. I have done the last load of laundry, run the dishwasher, put everything the kids will need by the door. And then, for my last child, Sully, I went through all of the things that have been at the foot of my bed since he died and I packed them, too. I needed to do this before I left. I needed to come home to them placed carefully in the lovingly hand-crafted vessel made just for this purpose by Sully's grandfather. I knew it would be hard. I purposely turned on Dancing with the Stars just to have the life and the energy of all that dancing in the room with me as I walked through my memories of Sully and touched the sweet little things that once touched him. Even with all that country and river and ballroom dancing, I still cried. It will be the same with the playground. Even with all the laughter, I know I will still be caught by tears.

I went there today, to the playground. I wanted to clear out the falling balloons and soaking ribbons. I have been sick since the day the playground opened. But I had to go because I feel like the personal keeper of this sacred space. I saved the ribbon we cut for Sully's box as well as one of the deflated balloons. They are tucked away with that first handful of dirt I took away with me when construction finally began. As I left, a robin perched right up on the fence in my direct line of vision. I just watched him and smiled and ached all at the same time.

A friend wrote me to assure me that no one expects the playground to be the nice clean bow to happily tie off this story. She recognized that my grief would continue, that it would always be a part of my story - forever. I told her how I had been sick and almost glad for it because it somehow gave me the excuse to just be miserable in my bed. I so rarely allow myself that. But maybe God knew that I just needed to lay there, miserable as I was, and physically feel as terrible as my heart sometimes does.

It rained on Sunday, just as we cut the ribbon. As the kids poured in the rain poured down. They didn't seem to mind. In fact, I think it even made the slides faster and more appealing to them. I loved that they didn't care and that parents didn't seem to either. This one time they allowed them to play in the rain because it was right. I didn't mind the rain either. It seemed fitting and symbolic of the bittersweet cup we have been given to drink.

I think more on that tidy red bow idea and remember something written by Anne Lamott in that book of hers I just read (Traveling Mercies). She talks of a woman who was always cheerful until "she started going blind. She had a great deal of religious faith, and everyone assumed that she would adjust and find meaning in her loss - meaning and then acceptance and then joy - and we all wanted this because, let's face it, it's so inspiring and such a relief when people find a way to bear the unbearable, when you can organize things in such a way that a tiny miracle appears to have taken place and that love has once again turned out to be bigger than fear and death and blindness. But this woman would have none of it. She went into a deep depression...the elders took communion to her...but she wouldn't be a part of our community anymore. It must have been too annoying for everyone to be trying to manipulate her into being a better sport than she was capable of being. I always thought that was heroic of her, that it spoke of such integrity to refuse to pretend that you're doing well just to help other people deal with the fact that sometimes we face an impossible loss."

I've gone back and read that so many times. It is true, the playground has made it easier for people to face us, to engage with us. I could have gone the way this woman did, I still may, who can say? I find that everything that has happened has come from hands of grace, hands that have molded each event just so, that have made us able to even fathom doing what has been done. And, if those hands take me down a road like this blind woman, will they still not be the same capable, steady hands?
I hope in those hands I will also have this blind woman's "integrity to refuse to pretend."

I received an informational letter the other day from the state of Virginia informing me of the care that was available to us for our son. Obviously, the state of Virginia does not know much about our son. I suppose it is a letter they are required to send out. But, I did learn that each year, in this great state of Virginia, there are about 7 babies born with Trisomy 18. Seven. That's it. So, we are one of those families this year. We are the statistic. I wonder about the other six families who live in this state with us. I wonder if any of those families have found out in the past month or two they are pregnant and don't know yet that they will be joining us in the tragic class of 2008. It makes me ache for them. But it also makes me want to know them, to meet them and tell them that I am so sorry, that I wish things could be different.

I have one more thing to do before I go to bed. I want to write my son, Sully, a note to place in his special box. Perhaps it is another part of saying goodbye. I want to write to him how much I still love him, how I do still miss him. I want to thank him for giving himself to us for six days, for letting us bask in his sunshine for those tenuous hours and days. I want to tell him how he will always stay my valentine, a love that I will shelter in my heart forever. I will tell him that he has changed me more than anything else in my life, that he has given me softness and illumination. I suppose he knows all of this already, but I think he would still like me to write.

Sully's poem

by Beth Dye

I see him swinging first.
For a child who was rocked so sweetly
Would remember the gentle feel of back and forth.
Those are his favorite
So close to his mother's gentle rocking.
Leaning back, arms outstretched, and then kicking out his legs
Pushing forward and landing on strong legs
Crouching, balancing, with arms steady
Taking his time looking down at the ground.

Next would be the slide
Because nothing invites a child more.
But he would take his time.
Climbing up to survey,
Then sitting, inching forward to get just to the edge
(A little nervousness before the plunge)
And down he goes, feet landing with a hard
Plunk in the mulch.
Perfect heart now beating fast.

And why not the rest?
Running to each piece
Climbing up and climbing down
And doing it all over again.
Sitting on the ride-ons and feeling as though
They could take him anywhere.
Grabbing in the mulch, throwing it up
Letting it land all around him and in his hair.
Shaking it off and running again.

This boy is real though I only know him in dreams
But the place is now becoming real.
And the same Spirit lives in me
Who abides with him and with this place.
The same Spirit who never left, will never leave,
Encircling, covering, surrounding
Breathing joy and contentment
To all who run and climb and jump.

Could it be that He made another first?
Perhaps it was waiting when he arrived
And ours is merely a reflection
Of a heavenly place built for children
Taken too soon?
Surely the children know it,
They feel the beauty and joy of His presence.
And a weary world where our Sully could not stay,
Is blessed by a tabernacle where children can play.

A new total

Our new total for funds raised for the playground is just over $61,000! I am amazed! Thank you for opening up your hearts to us and all of the children who will enjoy this place. Your generosity has created this beautiful, beautiful playground!

A Celebration!

Just a few snapshots of ours...








You can see Paula Burgoon's professional slideshow by visiting www.prbphotography.com clicking on Clients and then typing the password Sully.

Today

This is the day where it all comes together. This is the day we cut the ribbon and officially open what was once just a thought. I hear the birds singing this morning and that always makes me smile. I tell Sully how excited everyone is to open his special place.

I have been thinking this morning and the past several days on William Blake's words: "We are here to endure the beams of love." I wonder if that is what these past months have been all about. I think today certainly is. Is not everything about this playground full of love? But in the height of this love and joy there is the depth of the sorrow of losing a baby. Is that what it might mean to learn to endure the beams of love.

I would never wish what has happened in our lives onto anyone. But, I would not trade you my days with Sully, even the hardest, most agonizing moments, for anything. I am proud of my boy. Honestly, I am proud of myself. Is not carrying this special soul the greatest thing I have ever done? I am grateful for the willing spirit God has given me which has surely sustained me. I know I could have chosen a different path and God’s love would have been there down that road with me, too. But I prayed the psalms, begging for a willing spirit, and he gave it and gave us the grace to walk a very difficult path. And in walking it, crawling it, lying down and crying in it, there was the tenderness of love, of a grace in my weakness that I have never known before the way I knew it then. God was near. I did nothing. I could not do anything that I normally thought could win his nearness. Yet there He was. He was in your cooking, your phone calls, your e-mails, and your letters. He was in the idea of a playground and a Christmas wish. He was in the bird song and the early mornings and late nights of writing. He was with me as I cried in my bed, cried in the shower, cried in the car and cried in your arms. And He continues to carry us, to be with us in our joy and sorrow.

Today, we will dedicate a playground that is so much more than just a playground. It is a reminder that God is with us in our brokenness. Would I rather have my little boy healthy and whole? I am human and a mother. You know that answer. But this space will always remind me of God’s great love for me, for my family, for this community and for my boy, our boy, Sully.

I just walked outside and there is a rainbow stretching from one end of the sky to the other. It takes rain and sunshine to make such a beautiful sight. Yes, it is going to be a very good day.