Tuesday, November 27, 2007

All I want for Christmas

The past few weeks I have been asked to make my "Christmas list", a task I normally relish but that seems, I don't know, just kind of silly this year. I'm happy to relay the lists of my family, and to get ideas from other people's lists, but my own list - well - can't you all guess what's at the top of my list? That's not fair, I know, and so I try to think of a few things to write down so I can stop being asked.

Only God can give me what I want most this Christmas. It was my 30th birthday wish,too, as I blew out my candles. We go for an ultrasound next week, 30 weeks, and I pray that somehow there will be a miracle. I want Sully to be made completely whole. I know it's outrageous to ask for - that's why it's a miracle right - because no one else can do it but God. But I find myself asking him to fix every single cell in Sully's body. Don't worry, I know that if that isn't what God chooses to do that there is already a miracle to Sully and what, according to what modern medicine tells us so far, will be his short, yet still purposeful life.

And so, I have a second thing on my Christmas list. I want a "miracle" playground. Yes, a playground. I want Sully to be remembered in a place full of joy and laughter and childish fun. I want to take my children there and see my friend's children climbing all over a beautiful playground and think of Sully that way instead of at a cemetery. There is a perfect spot at our church on Colonial Avenue for it(and with the teaming amounts of children that are part of our church it will be a very welcome gift). It is an enormous task to raise support for a public playground like this. But, I know it must be a divinely inspired idea, because the effort and large price tags don't daunt me at all (and normally they would). Instead, I have loved leafing through playground catalogues and trying to decide, with Sully, what we "want". It is a comfort to me to be able to do this now, to dream of this now, to raise support for this now, to plan for this now while Sully is with us. It makes him a part of it now and so, when "then" comes, this time, too, will be part of my few but sweet memories with him.

So, with the help of some friends and our church, a fund has been set up for my sweet little Sully to help us build this dream. Many people have asked what they can do for us. I think this is what I'd like to ask you to do for me, for us, for Sully if I can be so bold. Help us build this playground. Anything you would like to contribute may be sent to Trinity Presbyterian Church (1600 Colonial Avenue, Norfolk, VA 23517)and marked for the Sully fund or Sully's playground. To build this for him and for all the children of our community, will be nothing short of a miracle.

That's all I'm asking for this Christmas - just miracles...

Sunday, November 25, 2007

Sully's stocking

We've been pulling Christmas decorations out of the attic and slowly putting them in place both in and outside the house. It's nice to go ahead and get them up and then our finishing touch will be next weekend, the first weekend of December as it seems to be our tradition now, we'll go pick out our tree. As I went through decorations and lights, I came upon our stockings. I found them back when we just had Ella and not knowing if we'd have two or three children I went ahead and bought five so in case we ever did have a third we'd have all the same "genre" of stocking. And so I look at this last stocking I have and wonder to whom it belongs. It' bright red with crisp knitted snowflakes and three cheery snowmen - the distinct quantity of three always being what made it the third child's stocking. I just hold it in my hands for a moment, so soft, so colorful, and a world of possibilities race through my head. What if we do decide to have another child after Sully? Should this last stocking be reserved for him or her? I try and picture another little person or even being pregnant again - images flicker and fly away - nothing I can hold onto with any certainty. But even if that does happen, that child would not be our third but rather the fourth - no matching stocking then. Sully is our third child. That is his place. And so I picture putting it up for Sully this year and every year after this in memory of him and that makes the tears come. It almost seems too much and I tell God that. To miss him for the rest of my life, to cry when I hang stockings every year from here on out, to see his little shadow, as Brad says, always chasing behind Ella and Zane. I put the stocking down and walk away. I decide to wait until next weekend and the tree to put up stockings. But, I do believe that bright red stocking is Sully's and will always be...

Thursday, November 22, 2007


Today, a day to purposely remember all that we are thankful for: I am thankful today for 7 months with Sully. I am, strange to say this, even thankful for the tears and the way suffering is carving deep into my soul making me a vessel able to hold true joy.

I remember finding out we were pregnant again. It was such a perfect day, a happy day. We all dressed in our rain gear and played in the warm summer rain. I remember us taking this picture and thinking how there seemed to be the perfect space beside Ella and in front of Brad for our third little one. I am thankful today for all the joy and happiness that surrounded Sully before we ever knew of Trisomy 18. I am thankful today that by some incredible grace, we are embracing joy in the days that we still have left with him.

Sunday, November 18, 2007

Our first parade

This has been a weekend of celebration. On Friday night the whole gang (kids and cousins, aunts and uncles) squeezed into our car for a tour through the first night of the Holiday lights at the botanical gardens. The kids were enthralled as was I. I've always loved Christmas lights. Then, last night, Sully and I participated in Norfolk's Grand Illumination parade, my first time in a parade and obviously Sully's first time, too. (Thanks, Karin, for pushing me along in this - we definitely made some memories.)

I know it seems a bit early to be "getting into the Christmas Spirit" but I feel myself wanting to jump into it full force. I love the joy and celebration, the brightness and happiness of it all. I know some people would rather not see all the Christmas merchandise go up in stores right after Halloween but I've never minded that. And I love it when Christmas carols begin playing on the radio - yes - nonstop.

When we first had our news of Sully's condition, I never could have imagined myself eagerly anticipating the holidays. But here I am, wanting to share it all with him, telling him everything I love most. All through the parade I was talking to him in my head: "This is a parade, Sully. And this is Norfolk, the city where we live. And that is a marching band you can feel vibrating through you."

I hear myself talking to him more and more as the days go on. I've decided to sing in our Christmas choir because I want him to hear beautiful music of the birth of Christ, not just hear it but feel me sing it. It is as a friend wrote me, I am recognizing his humanity, and I'm eager now for others to do the same with me.

A friend who has walked through her own suffering came to visit me last week. In the middle of our conversation she asked to feel my belly. I just cried. It's something so normal, a routine part of being pregnant with a "healthy" baby, so much so that pregnant women complain of it. It's something I've done very little myself with this pregnancy. But to feel around for this little guy, to let someone else touch him and me, to try and feel him move, it was a moment of really embracing his humanity. All of it,all of this, all of these days are so painful but somehow so beautiful.

Wednesday, November 7, 2007


I have two dear friends from my past driving up tonight for a visit. I am excited to see them but as I await this visit and their arrival I find myself wondering how they will expect me to be. I wonder in what emotional state they expect to find me. They are coming because of all that has happened. If Sully were not the baby he is this trip would not be planned. Should my friends walk in my door to find me in tears? If they find me well and smiling will they feel their trip is a waste? I'm still functioning so normally. Should I be? I see my line of questioning taking me beyond just these next few days and to into the opinions of all the people around me. It is a strange thing to not know how to "be" in grief. How revealing of my heart that even in the hardest days of my life I am concerned with others opinions of me and questioning if I am fulfilling their expectations of me - or rather - what I perceive their expectations of me are. I had planned on being apart of the holiday parade this year with some friends but assumed I shouldn't do that after our news of Sully. But, what if I do want to still be in the parade with Sully? I wonder if that is inappropriate or rather will "appear" inappropriate.

I think when we first found out our "news", life really did seem to stop. I couldn't imagine facing anyone or doing anything. But, now, I slowly feel myself embracing this baby for who he is and I do feel that life force calling me back, as you, Seastar, keep reminding me. At first, I just wanted everything to be over. It has only been in this past week that I've had glimpses of the desire to not hide my pregnancy but to embrace it and let my little Sully be who God intends him to be. My little niece came up and kissed my belly today and asked if my baby were a boy or girl. I told her my baby was a little boy named Sully and she just smiled and patted my belly which led my daughter to do the same thing. It was such a sweet and beautiful moment of recognition. I loved it. I loved that she didn't look to me to see how I would react - she could have cared less. She was so pure and innocent and uninhibited. She then went on to tell my son, Zane, that he now was going to have a sister and a brother, so matter of fact, so free of all the sadness in my own heart. That was the best moment of my day.

I want my heart to open more to this child and to the days we have with him. I want to let go of my concern with perceived expectations and also the expectations I put on myself. I watched a beautiful video sent to me today (thank you Nicole) that left me in tears but also hopeful as I watched another couples tribute to their own son's life. Of course you can feel the sadness but more than that you feel a resounding sense of celebration of this little boy's life. When this is all over I pray that I will have loved Sully more fully than I ever could have dreamed possible, that I will know the redemption in this brokenness, and that I, too, will have celebrated well.

Here is the site of the video if you'd like to watch it too: http://www.youtube.com/watch?v=th6Njr-qkq0

Sunday, November 4, 2007

The Gray Area

Last weekend we traveled to upstate NY for my cousin's wedding. We planned to take the ferry from Delaware to NJ and drive up the Jersey shore into NYC to visit some of our old haunts before going on to the wedding. When we originally found out about Sully, I wanted to cancel this trip along with the rest of life, but slowly the fun of planning a trip and thinking about something else became appealing. My mind was mostly on the trip though and not the wedding.

I realized a few days before leaving that even though we had processed so much regarding Sully, I didn't know where to start with the people we would see at the wedding. They would be in the 'gray area' that we hadn't really dealt with much. We know now how to talk with our community about this who is walking the road with us, and we know how to answer strangers that we will never see again, but what about more distant family that we will continue to see, but only once or twice a year? Did they know or not and what would they say as several of them were pregnant also.

The answer is that almost no one mentioned it - either asking in ignorance or in knowledge - which was really our hope in our hearts... we thought. In a very suprising way, it was somehow almost sadder to not talk about him. This has left me very confused about how I want to deal with this phase of life, but certain that Sully is such a big part of me that I do not want this to 'just all pass' and be back to normal. Somwhere there is a craving to talk about and share this huge and intense part of my life, but I still don't know how to do it.

Oddly, at the wedding, it was not the other cousins and guests who were pregnant that made me the saddest, but the relationship of my cousin who got married and her siblings. You see, there are four of them (2 boys and 2 girls) spread out from 26 to 36 that have been extremely close all their lives, they come together for holidays all over the country, they share inside jokes, they can laugh at the flaws of their parents, and they love each others kids like only aunts and uncles can do. This was the kind of family dream that lead us to the decision to have a third. The image of our kids in college and career years coming home to a house where love and encouragement had sent them into life prepared and with countless threads woven between them that would always draw them back together throughout life, even after Heidi and I were gone. But Sully will never know that though his shadow will always be following behind Ella and Zane in every day on the playground and in the uneaten portions of every holiday dinner.

Friday, November 2, 2007

Heart shaped medallion

Last night, at a small dinner with close friends, I was given a beautiful gift for my 30th birthday. All day today I keep thinking of a song by Dave Wilcox that describes this gift perfectly.

"If I had a spell of magic
I would make this enchantment for you
A burgundy heart shaped medallion
with a window that you could look through
So that when all the mirrors are angry
at your faults and all you must do
You could peek through that heart shaped medallion
and see you from my point of view."

It wasn't a literal heart shaped medallion I was given but a collection of letters from dear friends and family members telling me of their love for me. I was so overwhelmed by the time and energy it took to create such a gift, by all of the letters and photos, by all of the love sent my way for this milestone birthday.

Last night, as I read through many of the pages, it almost felt like an out of body experience to see me from your eyes. How can you all sum me up so well when I always feel so confused about who I am? Perhaps it was my first glimpse of who God is making me, of this next decade and a coming of age as I walk through both joys and sorrows. I keep looking through it today in awe that that many of you like me - seriously - I can be so difficult. I so treasure each letter and in each one see how very good God has been, and continues to be to me. Thank you for such an amazing gift. Thank you for loving me so well and for being such beautiful friends.