Tuesday, April 22, 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.

2 comments:

LindaJB said...

Heidi,
I first read Sully's story on Easter. I was touched by your honesty, your pain, and your journey. It was a busy day for me, but I took the time to read that article. God had me in His hand. (Doesn't He always?) Two days later I learned that a friend's grandchild was born with another form of Trisomy. I immediately went to the websites listed in your article and referred her to NILMDTS and Trisomy 13. Your story also helped me know how to support my friend and her daughter. They have all read your blog. I have followed your blogs for the past month, and I am in awe of your openness, your strength, and your willingness to put it all in God's hands and follow His leading.
The playground will live long as a memorial to Sully and a tribute to your family and your church family. Live long and prosper and continue to honor Him as you raise your family in love and grace.
Linda

Victoria said...

I've been following your journey from near the beginning of this blog, and see integrity and love. THat will continue because it is part of who you are. By whatever handle you bearthe circumstances of Sully's life and eath, it will be one you can hold with integrity. I believe, from all your posts, I know you well enough tto know that. GO with blessing.