An extra day

I signed the contract for Sully's playground today. I went to date it 3/1/08 and was reminded that it was still February. It's the 29th, Leap Year, an extra day to live in the month in which Sully was born. It has been a good day. How great it felt to sign the paper, to know that the playground equipment is being ordered and 5 or 6 weeks from now installed. Ella is feeling better and acting very much her normal, sassy, four year old self. A dear friend brought me dinner and we had a nice chat. See, a good day...
But then, it surprised me. The sadness welled up inside me and swallowed up the happiness of the day. I found tears falling down my cheeks amidst the most innocent family moments. I kept thinking about Sully's last night, and I could feel the weeping mother welling up within me. I still miss him. I still ache with the longing for all that I had hoped he would be. Yes, I am OK. But the chill of loss has not vanished. I'm sad that this is the last day of February. I'm sad to move out of his month, to move further away from my Sully days.

Vulnerable

Ella is sick. Last night I was a wreck. I watched her all day but by 4:30 her fever went back up and she kept complaining of neck pain. I have never thought of myself as an over reactive parent, but I couldn't keep my mind from going terrible places. I would try and tell myself to calm down, to be rational, to stop over reacting, but it didn't help. Finally, we made an evening trip to the doctor who checked everything out and assured us that she would be just fine. Even as we waited in the room I would see glimpses of our normal Ella, and I knew everything was OK. I was glad to feel foolish for being there. I don't think I would have slept at all last night had I not had reassurance.

I wonder, will I always respond this way now when my children get sick? Before Sully, we lived in that youthful invincibility that makes you think that nothing bad could happen to you. Our odds were so low that we would ever have a child with Trisomy 18, yet we did. Last night I knew that my anxiety was coming from this realization that anything could happen to us and our family. No one has set a suffering quota and said ours was full. But I want it to work like that; I want to believe that nothing else so painful could happen to us. It's hard to accept that God's promise to me is that he will be with me, not that suffering won't happen. And so I'm left feeling so incredibly vulnerable, once again faced with the fragility of life, once again asked to loosen my grip on this life and all that is dear to me.

$32,000!

Our church had a congregational meeting on Sunday to discuss many things, one of them being Sully's playground. At this meeting, the new total of funds raised by Sully's fund was announced and my mouth dropped open. I was floored to hear that $32,000 had been donated to help us build our boy's special place! I am overwhelmed with gratitude for such generosity and kindness.

In the days following Sully's death, our church came to us with a Memorandum of Understanding. They gave their full support to the playground offering to borrow quite a bit to make sure it could be started very soon. I was so touched by their commitment to making this playground happen even though the church has so many immediate and pressing needs since the acquisition of our building. While it feels good to have their safety net under us, I still hope to raise as much of the cost of the project as possible. And, wow, we are over halfway there!

Making it to this point so quickly allows us to mobilize the troops, get bids, and set dates for work to be done. Yesterday, I met with the other members of our church playground committee that have worked in helping us to make this playground a reality. We hope to begin clearing the space around the middle of March in preparation for the playground equipment to be installed around early April. Here's what you want to know - on Saturday, April 19th from 9 a.m. to 3 p.m (just one week after our fundraiser at JWTumbles)we are having a community planting day for all of those who want to come and help and get their hands dirty. Our incredible landscape architect, Ann Stokes, will be directing our efforts as we plant all of the shrubs and flowering plants around the patios and sidewalks of the play space. I can't tell you how excited I am about all of this! It's really happening! My little Sully's playground is not far from being a reality!

Sully's hands, my hands

Yesterday was two weeks since my Sully flew. I think back on his six days with us and how glorious they have become in my mind. What stays with me most is the sunshine, our house filled with it, the cocoon feel of never leaving it. I know I cried, cried at knowing what was coming, but I could hold him in my arms and kiss his face and lips and stroke his little soft hands.

Oh his precious hands. They would curl up near his face, and even in his last moments his hands drew my notice, crossed up by his face, with his cheek resting on his forearm and my breast. So many times I would run my fingers over his fingers, his palm, the back of his hand, and marvel at the softness, the exquisite form and beauty in such tiny proportion.

Why did I marvel so much at them? In our last ultrasound they curled up so tightly by his face, almost folding in on themselves, that we were certain they were deformed. Even the technician made a comment about it, wanting us to be as prepared as possible. So much outwardly could have been deformed; yet, he was absolutely, exquisitely beautiful in form. And his hands were perfect.

Their image stays with me even now because, in the days since he has left, I realize they are my own hands. As I have curled up with his blanket in tears and sleep I notice how my own hands find their way to my face and curl inward as I try to find sleep. They curl so much so that when I wake sometimes they ache from how far inward they try and bend.

I cry the first time I realize that Sully and I have something so unique in common – somehow it is a connection even after he is gone. I have his hands, something of his to keep with me forever. And truly, he was of me, resembling me even in this small thing I must have done also since I was in my mother’s womb. Our hands curl inward and find our face, mine and Sully’s. How tender and sweet that is to me.

Things that make me smile

I've just stumbled back over from my nieces six year old birthday sleepover where my daughter, truly my own, fell asleep at 9 and my niece, truly her mother's, is still awake. The night had a surreal quality to it as we did make up and hair and helped the girls into their princess nightgowns for runway walks. They were just so excited. They had so much fun I couldn't help but smile as I watched them and played with them. At one point, I caught a glimpse into the kitchen of a piece of my nieces art work, sweet and childlike and immortalized forever on the kitchen wall. My first thought, even in the midst of the fashion chaos, was of Sully and all of his artwork that our kitchen walls and refrigerator door would never know. It surprises me how grief can show up anywhere, at any time, even when I'm surrounded by so much happy energy. I look back to the girls wanting to be drawn back into their innocent fun.

My brother-in-law gave us a book for Sully. He had planned on giving it to him himself when he returned from a business trip but he didn't get a chance to. I read it this afternoon for the first time along with a letter to us from him. I love that Sully's name is in the title: Sully the Seal and Ally the Cat. Seeing his name makes me smile. The Seal is named after the bay he is found in, Sullivan Bay, and I wonder if that is a real place and if we could visit it. Perhaps we could make it one of our "Sully Adventures". Brad wants to have these with the kids for years to come in honor of our boy.

What else makes me smile these days? Polly Wolly Doodle sung by Zane. He is the one who gave us back our first real laughter just yesterday. Riding in the car the Burl Ives version of this song came on and Zane started singing it all crazy and with a funny voice, and I found myself laughing, and then Brad started, and then we were all three just really laughing. It felt so good to really laugh, not just courtesy laugh or smile because you know it's the appropriate response. What a gift from our boy Zane.

And the playground, that always makes me smile for real. Making calls and plans for it gives me something to do that is meaningful to me. I'm amazed that $20,000 has been given for Sully's place so far - what love and generosity! And it only continues. Friends have set into motion a fund raiser here in the community for the playground. On April 12th from 3-6 there will be an open gym at JWTumbles where all proceeds will go to help build the playground. What an amazing community that has rallied and continues to rally behind us with such incredible support! How could I not smile at that?


"It won't hurt so much always, Anne."
"The thought that it may stop hurting sometimes hurts me worse than all else, Marilla."
"Oh, everybody has been so dear and good and lovely to me, Marilla. I'm not ungrateful-and perhaps-when this horrible ache grows a little less-I'll find that I can go on living."
"Anne found that she could go on living; the day came when she even smiled again...But there was something in the smile that had never been in Anne's smile before and would never be absent from it again."

Anne's House of Dreams of the Anne of Green Gables Series
L.M. Montgomery

Empty

I find it odd at times the things I am doing. I still can't help myself from doing them. This morning, emptiness felt like another presence among us. I went all throughout the house and turned on every light hoping to make it feel just a bit less. I make my bed and carefully tuck Sully's little outfit and hat back under the pillows. I smell it constantly. This morning, I kept trying to get his scent but it is growing fainter with the passing of days. I sleep with the blanket I made him, feeling like a child in need of comfort. Any flowers that came for him I can't just discard into the trash. All of them are decomposing in the shelter of our backyard azalea hedge. The water from the vases has been poured on his bulbs out front. It's as if I couldn't waste anything that was his. Perhaps I need to believe that even in their end, their death, they will spur on the new life of the azalea blooms and the sprouting tulips and daffodils.
These things I find myself doing seem almost superstitious to me. And yet, I think they must just be part of the grief, part of some kind of process. As I hugged Brad goodbye for his second morning back to work, I saw the frost on our front door and in it written the words, "We love you Sully." It was cold like this just one week ago on the morning of his service. Snow had quieted the world, all of nature honoring my sweet little boy, when I wrote those words. It's been just one week since his service, 11 days since he left, 17 since he was born. How long will I count?

Sully's cocoon

After writing last night I went to check e-mail and found this letter waiting for me from a dear friend who always seems to know just how to comfort and love me. It made me feel hopeful in moments when hopelessness was creeping back in. Brad and I had taken another baby step and driven far away for a very quiet lunch together. Just a few hours together - calm and healing. We had talked about a night away but I can't imagine yet being away that long - away from Sully's cocoon as my friend calls it. I realize she has named it for me, the reason stepping back into life seems so hard. Sully has flown but I find myself more grounded, my roots cemented. I want to stay in my house forever, in the place where he lived for his months in my belly and six days in all of our arms. He did weave this beautiful cocoon and I feel lost when I try to feel my way outside of it. I have asked permission to share my friends words, words that are hopeful and life-giving to me...

"Today, on a day washed clean by the rain, a day as warm as those that Sully came to you and to us, today you turned another page. You did something together with your husband - a trip away from home - a trip to let you see that you can leave the cocoon woven by Sully's presence.
Your grief surely will be at the center of everything you do as the days and weeks and months pass. But as time marches it will be swaddled and wrapped in new days and new events - a sunny morning, the fragrance of toast, the embrace of Ella or Zane, the switching tail of a cat, the unfurling of a daffodil, the kiss and understanding of Brad.
And one day, the layers over your grief will have softened it until it doesn't surprise you anymore with a sudden, involuntary flood of tears. Finally, the layers will let themselves be tenderly opened for a look inside at a precious memory, the pain mercifully dulled by the anesthesia of time.
I'm so looking forward to that for you and for Brad. It will come. Each day brings you another step closer..."

Baby steps

We tried to go out to dinner the other night. It seemed like such a good idea when it came up between us and Brad's brother and his wife. But when we walked into the restaurant I almost had to leave. I had pictured the place that had been so calm and quiet, such a haven to us in the past with its tall booths you could hide yourself in. I never thought about the fact that we had only gone on week nights and now, here it was a swinging Saturday night. What was I thinking? Why was I here? If Sully had been well, we never would have had the luxury of a night away this soon. Having this luxury, being out and around so many people enjoying a Saturday night, just hurt.

I realize I will have to step back into a life pattern before too long. Tomorrow, Ella will return to school for the first time in two weeks. I'm nervous about dropping her off, about making the trip that once was so ordinary but now seems monumental now that Sully is gone. And what about when I must go to the grocery store again or a Wal-mart or Target? I haven't run an errand since a few days before Sully's birth. Why does it seem overwhelming to me to have to do anything "normal" again? Is it because we have to wear a certain hard shell or numb ourselves to even be able to accomplish anything in the world? I feel like I'm so raw and vulnerable. The intensity and vividness of the past two and a half weeks have stripped me bare of the grayscale armor I once unconsciously used to conduct the everyday affairs of my life. How do I step back into the life of tasks and errands and necessary normalcy?

Brad and I talk through each day of this week. We try to plan for easing ourselves back into "life". We also talk a bit about future plans, this summer, and fun times for our family. And then I find myself in his arms crying. We can dream up wonderful plans but right now they all seem dull compared to if we could have our Sully and the monotonous, tiresome days of caring for a baby. Perhaps that's why each step forward seems so hard. Each step forward is a step away from what should have been but isn't, away from what we once hoped our family would be...

What now?

The service is over. Family is leaving. Life moves on. But I find myself sitting on my front step still crying. It is the day after Valentine's. I watch my son, Zane, run around in our yard, laughing and full of life, and I mourn for him the loss of his brother and what he will never know with Sully. Brad puts his arm around me. I ask him, "Do you think we will always feel this hole, this ache inside"? I don't think life will ever seem normal again. How could I ever be who I was before Sully? As a mother who also lost her son once told me, I wouldn't want to be the person I was before Sully. She is so right.

But how will the days form themselves from here? I need manna just for today as I did so many of the days I carried Sully. Will I continue to write? And why? In the days since Sully's death I have written privately feeling some need for solitary grief. But as so many have walked with me in this journey I feel the days here are not yet over. I think of my boy's playground and I smile. I want for you to walk with me through the completion of that wonderful place and perhaps, I hope, that will mean walking with me through a beginning of healing.

We went this morning for the sunrise on a special stretch of beach we like to think of as ours. It is now two days after Valentine's, six days since Sully died, twelve days since he was born. There we had a private ceremony of our own, all bundled up on the shore, the kid's cheeks growing pink from the whipping wind. The simplicity of nature and its grandure gave us the most perfect sense of completion in saying a final earthly goodbye to our Sullivan. I wonder if the ache feels just a bit less today?

For Real

Death took the husband of a neighbor of mine
On a highway with a drunk at the wheel
She told me keep your clean hands off the laundry he left
And don't tell me you know how I feel
She had a tape that he'd sent her from a Holiday Inn
That she never played much in the day
But when I heard him say I love you through the window at night
I just stayed the hell away

Chorus:
There's a hole in the middle of the prettiest life
So the lawyers and the prophets say
Not your father nor your mother nor your lover's ever gonna make it go away
Now there's too much darkness in an endless night
To be afraid of the way we feel
Let's be kind to each other
Not forever but for real

My father never put his parachute on
In the pacific back in World War II
He said he'd rather go down in familiar flame
Than get lost in that endless blue
Well some of that blue got into my eyes
And we never stopped fighting that war
Until I first understood about endlessness
And I loved him like never before

There's a hole in the middle of the prettiest life
So the lawyers and the prophets say
Not your father nor your mother nor your lover's ever gonna make it go away
Now there's too much darkness in an endless night
To be ashamed of the way we feel
Let's be kind to each other
Not forever but for real

Lucky my daughter got her mother's nose
And just a little of her father's eyes
And we've got just enough love
That when the longing takes me
It takes me by surprise
And I remember that longing from my highway days
When I never could give it a name
And it's lucky that I discovered in the nick of time
That the woman and the child aren't to blame

For the hole in the middle of a pretty good life
I only face it 'cause it's here to stay
Not my father nor my mother nor my daughter nor my lover
Nor the highway made it go away
But now there's too much darkness in an endless night
to be afraid of the way I feel
I'll be kind to my loved ones
Not forever but for real

Some say God is a lover, some say it's an endless void
And some say both, and some say she's angry
And some say just annoyed
But if God felt a hammer in the palm of his hand
Then God knows the way we feel
And then love lasts forever
Forever and for real

Bob Franke

Our Valentine

A memorial service will be held to celebrate the life of Sullivan Gage Anderson at 1:00p.m. on Thursday, February 14, 2008 at Trinity Presbyterian Church, 1600 Colonial Avenue, Norfolk, Virginia, 23517. In helping us to celebrate our little Valentine, we kindly ask you to come dressed in colors of joy and hope.

In lieu of flowers, we request donations be made to Sully's playground fund in care of Trinity Presbyterian Church at the above address or at www.sullysplayground.com.

Ephemeral boy

Journal excerpt, 2-11-08

This morning the bush and brush are full of birds, more than I've ever seen in a morning. I stand at my back door and watch each bit of movement. The sun casts a bright swath across the top of the trees off in the distance. My eye is drawn there by a solo bird soaring in the trajectory of the light.

I turn a way and out of our front window I catch a glimpse of my daughter's tree, a strong branch made crisp like a black and white picture by the cold February light. In my mind's eye I follow the branch down the trunk and think of the first sprouting bulb Ella and I noticed there yesterday morning, the bulbs we planted on another unusual spring like day in December.

It is cold now. Sully brought with him the spring and beautiful days to match his beautiful face...oh his beauty - I'm so glad I could proudly let so many eyes see his earthly glory yesterday. And that the five of us walked together to taste the body and the blood of Christ - that I held all of my children together within the community of faith into which they each have been baptized as covenant children.
And has that covenant ever meant so much to me?! My hope rests here in God's great love and care for my Sully. I know he is in greater hands.

But I ache - I miss him - his soft, sweet body, his kissable lips and face. Oh how I ache. I held him all day yesterday, longing to comfort his failing body and ease his transition out of this world. I begged for God's mercy when he struggled. Please God, make him not hurt, please, have mercy and ease his pain and suffering. He calmed into my chest, finally sleeping peacefully, the morphine relaxing him. As he took his last few breaths over a span of time, my mother's body let down her milk, longing to do all it could to save and comfort and nourish even as death became certain.

The children had gathered on our bed with us under the guise of watching a movie, Brad and Ella carefully selecting Lady and the Tramp. While Sully grew quiet on my chest we all were together, our family, our three children doing something so everyday and ordinary - a strikingly beautiful and calm picture.

A mother sang her baby boy a lullaby and I heard the words, "Let love be your keeper." I sang them again to my own baby boy. Ella and Zane each kissed Sully's head goodnight, and off they went to the warm safety of their own beds.

Brad returned to find me unmoved - I couldn't move from that sweet place of Sully so peaceful and calm on my breast, my arms holding him as if I could keep him forever. And together we wept - Brad and I wept and held our beautiful one. Every part of me wept for hours into that night...

I held him for hours after he was gone. I bathed his precious body. I dressed him in his most comfortable clothes and fuzzy socks and his signature blue hat. And I wrapped him to keep him warm although his body could not stay warm. So I held him even closer to me and kissed his face and head and lips and hands over and over again. But how can I ever fully explain the ache, the sheer pain of my breaking heart as I handed my boy to my husband, as I looked on him for the last time and kissed his face and told him I would see him again in a better place, and then watched him be carried away from me for the forever of this life. I could hear a broken heart sobbing uncontrollably - I felt my face bury itself in the bed - I felt myself hardly able to breath and not even caring - I would stay here forever, forever I would weep and wail for my dead son.

But I will not say my lost son - because my Sully is not lost. My Sully has been made whole. My Sully has been found by the arms of my Savior. I know he is well. I know he has been made perfect. I know that my Redeemer lives and that in his arms is my sweet, beautiful Sully.

Deeper Still

"To give my life beyond each death
From this deeper well of trust
To know that when there's nothing left
You will always have what you gave to love

In this life, the love you give becomes the only lasting treasure
And what you lose will be what you win
A well that echoes down too deep to measure

A silver coin rings down that well
You could never spend too much, a diamond echoes deeper still
And you'll always have what you gave to love,
You will always have what you gave to love"

- David Wilcox, "Deeper Still"

Sully flew home last night.

Wonder Pets

We decided to place a feeding tube yesterday for Sully. We felt a great sense of relief that at least his little body could be hydrated but know we must balance his fluid intake with how much his heart can handle. After he took his first full ounce over a three hour period, we contendedly spent a lovely evening together as a family of five. We all piled on our bed and watched an episode of the Wonder Pets, crowded into the bathroom to brush teeth, read bedtime stories all together and sang Zane's favorite cowboy song to each other before kisses goodnight. It felt so good to have those moments together as a family, the five of us nestled in our little corner of the world, safe and happy.

Before the bedtime routine began, we sang Happy Birthday to Sully for the 4th day in a row. Ella asked us last night why we are singing to him everyday. Brad said that it was because we didn't know how long we would have him and that we wanted to celebrate each day we had with him. This morning in the shower I thought more about her question. I just wept as I thought of all the birthdays we would miss with him. And so, Ella, I sing each night in hopes that we can fill his days with a lifetime of birthday songs before he leaves us.

All is calm

Last night proved to be more peaceful than the previous one. After our hospice nurse and pediatrician coached us along in helping Sully to drink from a bottle we felt much better. He still is not taking enough to keep him hydrated and so we have talked about the possibility of a feeding tube to give him more nourishment. But, when he started to get the hang of the sucking motion and swallowing we all rejoiced and clapped. Perhaps he is on a learning curve. Today we'll hope for the best.

Early this morning, as I tried feeding him again, I heard that sweet, first morning bird song. I opened our curtains to let in the blue winter light and just sat up in bed holding my little Sully close to my heart. I must have stayed that way for an hour as the light grew brighter and morning came for the rest of the boisterous, happy children in our house. But I could have held Sully there in my arms forever. The calm, the light, the soft sounds of morning, the warm bundle held so close to me - these things I want to etch in my memory forever.

Oxygen

A delivery came last night. Oxygen. I heard the man come in but I stayed in the back. Brad went to receive the order and instructions. I didn't want to see who was bringing such a thing into my house, oxygen for my baby boy, a sign of his brokeness. We have it to help ease Sully's breathing when things get difficult, just something for on down the line I tell myself.

I got up to prepare for Sully's 1 AM feeding last night. We had a lovely time together just chatting and singing. He seems a bit slower in taking his milk but slowly I found myself on our 6th syringe! I praised him and told him how proud I was of him with each swallow. And then, on a last swallow it was too much and he choked. I sat him up and tried to help him but I could see him struggling and turning blue. I called and ran for Brad. What had I done? Sully coughed and struggled but eventually seemed to be recovering. Brad got the oxygen going and we used it to help Sully breathe a little easier. Ok, I have to go slower, be more careful. I can't let my desire to have him eat cause him not to breathe.

I thought the night's drama was over but then at 4 Brad came to get me. "It happened again," he told me, and I jumped up to help. Sully was breathing again but Brad wanted me to come hold him. Was this it? How could it already be over? So, we just sat up for the rest of the night holding our beautiful little man and prayed and sang and cried and smiled at him. Eventually we all snuggled into our bed and with Sully finally seeming more comfortable and at ease both Brad and I drifted off into sleep. When I awoke this morning my eyes saw Sully's peaceful face and then I closely watched for signs of breathing. He is still with us this morning. I weep in the shower, but as I get out I tell myself that he is not gone yet. Sully is still here, the sun is shining again and the sky a brilliant blue. The rain has held off for another day.

Oh heavenly day

The past 48 hours are dream like. Labor seems like ages ago even though not much time has really passed. Those hours of mental anguish, mental labor are a relief to be behind me. The hours since Sully's birth shimmer with their joy and beauty. He has come with instructions all of us should have. Treasure him, love him, celebrate and enjoy him because we know not his hours or days. This is the truth of all the dear ones in our lives; none of us know the number of our breaths. But Sully has made that truth a very real, bittersweet taste in my mouth and not just a nice sentiment for a halmark card.

Even the weather has seemed to be a gift to propel our dream like trance. I hear of the cold and rain coming, and I feel the sadness crouching at my door. I want to shut it out, to keep it out forever. I want to close my ears to the voices that tell me what is coming and just believe that this is my world, that I have come home with our sweet baby boy and he is mine to keep. I find big joy in him accomplishing small wonders: taking 4mL of milk, burping, having a dirty diaper, crying. These normal things seem so miraculous. But then, the neonatal bottles come and I see how very little 4mL is and I am discouraged. The stethoscope hears the sound of less vigorous breathing than the day before, and I feel the shimmer of the past glorious hours start to fade.

In our hospital room, less than an hour after Sully's birth, the dearest of hearts assembled to witness the baptism of Sully's precious little life. We promised things that made me weep. We promised to teach and lead and love this covenant child but it is Sully who is teaching, leading and loving us. I am grateful for those witnessing his life with me, those who said they would help love this covenant child, too. I am relieved to no longer be the sole bearer of his small life's memories. One chapter has ended and another begun. I know all the days will not shimmer...

(Brad made a beautiful video clip today of Sully's homecoming. It's at the bottom of our blog.)

Sullivan Gage Anderson - February 4, 2008

Sully was born at 11:08 pm, weighed 4lbs, 15 oz and measured 18 inches.


I know I should be sleeping but I’ve just finished feeding my little Sully with his tiny syringe so I’m awake anyway. I find the banana pudding my brother left for me in the fridge as I put away my agoniziningly collected milk and figure a moment for mother nourishment and to write is deemed worthy before sleep. And what I have to write – oh – I feel like there are pages and pages in my heart. Those thoughts will come with time but for tonight, this sweet night finds me writing that I have a baby in my house! My Sully is here with me and there is such joy. All of the fears, all of the anxiety over bringing him home, all of it is gone. As soon as he was in my arms all I wanted was for him to stay as long as he could. It is true that perfect love casts out fear. That is what I was given in that first moment I held him, a taste of perfect love.

Love will show the way

It is love that mixed the mortar,
Love that stacked these stones
It is love that wrote the play
Though it looks like we're alone
In this scene set in shadow
Like the night is here to stay
There is evil cast around us
But it's love that wrote the play.
In this darkness love will show the way.

Dave Wilcox