House

Being with Theo, our bodies joined, taught me how to sit, listen, rest. Pregnancy overwhelmed my mind, taking over my body. It was so refreshing to do only what little boy Theo wanted. Sit, eat, lie down, walk, stand, sleep, yoga, sing.

Now I still try to hear what other people are saying, what I am needing, what the world is crying for, where the mountains are calling me. Its peaceful and now, its another little gift from my sweet boy. And tonight I can hear the house. I can hear the sounds of my own cries and anguish, reverberating back. My tears have been private, the deep expanse of my pain mostly contained in this home. It held me and heard me, not judging in return. These walls have supported me when I scream that its not fair. Its waters have let me wallow in my grief, and then washed away the mess.

Thank you old house. Everyone needs a spot to release their load, you carried it with ease. With Love and Gratitude, Emily

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Heart Colorado

A last lovely night in Colorado, crickets sounding their night call, the air clear and temperate. I’ve picked my spot on the swinging bench, trying to memorize this. I remember when Theo was alive that my fear was forgetting all the details. What if I lost his scent or the color on the wall or the name of his favorite nurse or the places he was ticklish? Panic, dread. For I knew it would come, God made this human body incapable of storing all the gifts He gives us. We need Him to remember. And I do still remember, Theo’s hair is a feeling on my fingers that I can still feel. Theo’s crib had Care Bare blankets. Theo had a soft cry, the sound still ringing in my ears when its quiet enough.

I ask God again, please memorize this home and this place for me. Guard it in my heart. Each place you go and break bread and hold new hands, these places keep a part of your heart. I can leave it here, along with part of my son, to plant and grow. To keep loving this community of blessed people, mountains and adventures.

I left my heart in Colorado.

Goodbye Home

I sit for one moment of stillness, peace and quiet waiting for the movers to arrive. My eyes wander across the street, there sits the hospital sweet Theo was born at. I squint to see if I can peer through our window, is anyone filling that space that was our home for 24 days? What family is preparing to take their little one home or say goodbye for this life? Do they know to hold on tight, value their time?

I will miss these thoughts. I will miss those windows and the dreams I once saw through them.

Maddie sits on my feet, demanding to be pet, bringing me back to this space. Even though we never got the chance to bring Theo home, settle him into his crib and splash together in the bathtub. Even though we never got to sing him lullabies in his rocking chair or tickle his belly on our bed. Even though, this is still our home. This home is our family home. I can hear him in the walls and see him in the floors and feel his touch in every crevice of this house. He is here and now we must go.

My prayer is this, please bring Theo with us, in our hearts and in our new walls, our new windows and new faces and new friends. A mother cannot leave her child behind, so please carry him with us.

Community

This weekend we had the great joy of celebrating and sharing in the fundraising party of a lifetime. Our friends are knee deep in the adoption process, hoping to bring home two kids from Ethiopia soon. Just this past Friday this couple was told by their adoption agency that they owed nearly $4,000 for the next step in the process. The next day friends gather, food is shared, great home made beer is brewed and $4,000 is raised. There is no doubt, God is in this adoption.

Its a lovely story to be a part of and to watch, much like I feel about the community who has shared in the life and death of our son Theo. Our process was ugly and sad and beautiful and moving, and still yet people so deeply yearned to share in it with us. Some days we had the urge (and we still do) to hide away and hold Theo to ourselves, unwilling to share him. But then a friend would call and say, “I just really want to be with him, can I come visit?” Or my mom, “I need my Theo fix!” And then a sister “helping the only way she knew how to” by setting up a Caring Bridge website. Every day Theo said, open your arms, I have more to love.

I was uncomfortable and exposed, but Theo gave me much more in return. He taught me that community means investing in each other’s lives. Through the pain and suffering that cause ugliness. Through the beauty that comes from life shared. The people who have committed to getting on the same sidewalk as me and walking through this grief, have felt the deep loss but have also known the great beauty and love of my son. Co-workers, family, strangers and friends are investing in our community…there is always plenty to be grateful to Theo for!

Heartache

Try as I might, my heart will never fill. That sweet spot for you my son, is all yours. Can daddy fill it? Oh, how he tries. Bless your loving father, baby Theo. Can all the blue waters filled with all the fish in the sea fill your spot? No, my heart still swims. And what about Madeline your puppy sister? She curls up in the arch of my tummy, filling the spot you once rested for 9 months and yet there is still that ache for you my boy.

Never will the warm sunshine cover your spot, never will another baby cradle the hole in my heart.

I keep it for you. Filled with all the earthly pain of missing you and still more joy from loving you.

This day, one year ago

On this very same day, just one year ago, Theodore was 6 days old. He was full of baby fat and smiles and yawns and soft cries. He brought light and love to my every breath, I was thrilled to be his momma.

But on this day, the neonatologist came in and gave us the results that changed everything. A few days back the MRI brain scan had been done and we were all waiting for a result that would promise a future. I was so expecting to take my boy home and tirelessly work with the needs he had. But God had a different plan, that had been hidden until now. The doctor asked if I wanted to look at the scans of Theo’s brain but I could not. I saw everything I needed to see, in the crook of my arm. He was beautiful, my son.

Sean came back from the room, the doctor shadowing behind him. I knew from his wet face that it was not the plan that we had prayed for. He put his arms around Theo and I and whispered, “i’m sorry.” The doctor sat heavily, showing her years of grief for all the babies she could not save. “Emily, the MRI showed that Theodore has only 10% of a brain, and of that 10%, its very….scattered….disorganized.”

I don’t get it, what does that mean? Can we fix it? Look, he’s doing so well!

Emily, the brain does not repair itself. There is no growth from something that is not there. Emily, Theodore will be brain dead, he will be in a vegetative state his whole life. Without his brain, there is nothing telling his body what to do. Slowly the rest of his body will shut down. We can do surgery to make those things better, but they will get worse again. Its your choice, we will do whatever you tell us to do. We can let him go or we can prolong death with surgeries for the bowel.”

It was as if she was talking about someone else. Who was this boy she was speaking of?

She left the room for Sean and I to ruminate. But all we could do was cry. Theo was alive and happy, held in my arms, and death was looming at my door.

The decision was made for us, God had made sweet Theo to live for just 24 days. I was angry, confused. I’m still angry, asking WHY?!? But on that day our hearts took over and held our son. I wanted the decision in my hands, but instead Theo was in my hands. So we held him and he held us, for 18 more days.

Anniversaries

I am searching for just the thing that will feel right on my heart. What to do on the day of Theo’s birth? On the days of Theo’s death? And what to do for 24 days in between.

A dear friend reminded me that others want to remember him, his love and his life. Do I let people in? Can I share this with the world? My heart wants to crawl back in bed and hide my face from the world for 24 days. Skip work. Don’t cook. Leave the dishes in the sink. Turn my phone off. Boycott the gym. Forget everything and let go of the guilt.

But then I remember how we shared Theodore’s life with the world. We let visitors come to the hospital to meet him when I preferred to hoard him all to myself. My sister made a website for hundreds to watch his story. I could not bring myself to look at this site for months after he died, agonizing over having shared him when I wanted to be selfish. But my little boy could not hide his face from the world, he just squeezed his way through his mother’s tight grip and let everyone feel his love. If it were up to me I would have hid. But Theo in his 7 pound body had his own plan. He called on all the angels in heaven and shouted to the earth, “Come meet me! I have love to share!”

So this one year after his life and his death, the purpose is clear. Share his life, share Theodore’s story and his love. When I stop and listen, I can hear my son leading my heart. I will take days off of work and I will skip the gym when I need rest. I will let others help me cook and scrub the piles of cleaning needing to be done. Theodore’s friends always want to help.

And I will slow my pace to the rhythm of Theo’s heart.

Return to church

I walked back in and my knees went weak, I was hot and faint and I felt like a foreigner. Would God accept me back, in the very spot we laid baby Theo to rest?

As we took our seats, I noticed a clear view to my favorite piano man, belting out sweet hymns. As his voice rose and fell to the rhythm, my heart slowly opened. His face was all joy, the same joy that was in Theodore’s face.

I sat and I stood, I kneeled and I sang, I listened and then……I prayed.

Lord, help me walk.

The muscles relaxed, my mind eased a bit and I stood to put one foot ahead of the other.

Essay from Real Simple

The ultrasound technician has a tiny voice and I wonder if she speaks this way to sound more like the babies in the tummies she rolls gel over each day. She tip toes out of the room and the silence deafens, as the baby in my tummy rolls and kicks, happily full of life. The doctors come back in the room with the technician and very seriously explain that this happy baby has “abnormalities.” I do not realize I am crying until I look up at my husband, Sean, as he wipes the wetness off my face.

I think to myself, abnormalities. What does that mean?

To my horror, the next thought is, Can I still love this baby?

We had found out twenty-two weeks ago that we were pregnant with our first child, elated, shocked and scared. Sean and I decided that we needed to schedule our last vacation before the adventures of raising children ran our lives. So I scheduled the 22 week ultrasound appointment for the morning before we left and packed my bags. But as we walked out of that hospital room I wanted nothing more than to crawl back in bed.

After crying as we packed the car, and crying as we drove to the airport, and crying as we boarded the plane, I sat down in my seat surrounded by hundreds of people and shed my last tear. The doctors had told us that the baby’s brain was full of fluid, something they called hydrocephalus. The fluid was not draining properly in and out of the head, so the baby’s brain was not forming properly. I asked them how we could fix it. Something has to fix this, right? They said we needed to run more tests and wait until delivery.

But somewhere over the ocean, on that crowded airplane, I decided to come back to my question. Can I still love this baby? I rubbed my belly and the baby rolled around as if to say, Of course you can!  I looked over at Sean, annoyed that he could sleep while I was incessantly ruminating over the bomb that had just dropped into our life. I pinched him awake and asked why he was not worried about what the doctors had just told us. He swallowed with tears in his eyes and replied, We already love this baby, that’s all it needs.

Sean fell back asleep and I went back to rubbing my belly. I kept on rubbing, until my head was in line with my heart. I knew that I loved this baby more than I thought was possible, my head just needed to wrap around the sadness we were about to walk into.

A few months later after several unanswered tests, we had a sobering meeting with the neonatologist who planned to be the baby’s doctor. She said that there was a range of outcomes we could expect at birth. The first, the baby could do fine through labor and delivery and then need to have multiple surgeries to fix the issues in the brain. The second, the baby could be born struggling to breath. She explained that with brain problems, babies may not have the drive to breath. If this was the case, we would help the baby breath with a ventilator and later start the surgeries. The third option the doctor told us was that the baby would die at birth. That was the first time I felt a little piece of my heart being torn off.

The baby’s head started to grow so large that the doctor scheduled a C-Section for March 17, St. Patrick’s Day. Labor pains never came so we walked right into the hospital at 7am on a dark March morning. Sean was convinced I was going to die and I was convinced Theo was going to die. Our optimism had taken a big vacation. But at 9:22 am, I did not die and nor did that beautiful baby boy, Theodore Edward.

I spent four nights in the hospital, recovering from the surgery. I spent my days wheeling down to the NICU and the nights wondering how Theo was doing. Who was taking care of him? Is he happy? Is he being held? Is he soothed when he cries? I desperately wanted to do all the things a mother is to do, but my body needed healing. I did not know then that my heart also needed preparing.

As the days progressed, we learned more about Theo’s conditions. His left eye was fused shut and his right eye would likely never have sight. The pinky on his right hand did not have any bones. His nose slanted to the left like a boxer who has been in a rough fight. And when he could not keep food down, we learned that he had massive bubbles in his bowels, blocking food from ever nourishing his body. The last bit of testing came in on Theo’s fifth day with us; it was from the neurological radiologist. Theo had only 10% of a brain. That last bit of news was the hardest to stomach; it’s the type of news that can still bring waves of violent tears.

The doctors sat us down to lay the cold, hard facts in front of our faces. Either we could operate on the many issues plaguing Theo and postpone his death or we could stop giving him nutrients and fluids intravenously and let him go now. I was holding Theo at the time and all I could do was let the tears fall and beg him not to leave us. Everyone left Theo’s tiny NICU room and Sean and I asked the question, How can we be asked to let our son die? But we both knew the answer was simple, let Theo go peacefully. No surgery, no pain. Only love.

We moved into a small room hidden away in the rear of the NICU and started to live our life with Theo while watching death take him over. The doctors warned us that without food or water, babies only live a few days. Sean went home and packed me three more pairs of underwear and we settled in. We decided that the only way to get through saying goodbye to our son was to show him the world. So we took Theo outside of the hospital for his first breath of Colorado mountain air and a walk in his stroller. We came back inside to our hospital room and cried. My heart was heavy with the realization that this was the last time Theo would enjoy a walk with his momma and daddy. But the days wore on and the doctors kept checking his heart beat. Strong as the day he was born. Is this normal? I would ask. They had never heard of a baby holding on this long. So we continued to love our sweet baby Theo, the best way we knew how. We ate while holding Theo, we slept while holding Theo. I can remember sitting for hours at a time just holding him. We read him the books well-meaning friends had given us as his “first book.” We sang lullabies to him and danced with him in our arms. I told him all about his momma and all about his family that he would never meet. I told him about life’s ugly truths and painful journeys that he would never have to walk through. And we kept going on those stroller walks, every day. For 24 days.

Then one Sunday afternoon, Theo very peacefully took his last breath. I was holding him in my arms, just the way we had planned. He came in to life in our arms and if we could do one thing for his short life, it was to hold him on his way out. Five days later Sean and I stood in front of hundreds of people who had gathered to say goodbye to Theodore, yet had never met him. We stood up there and we told the world who our son was. Theo was love. People nodded their heads in agreement; the pictures from his website had conveyed that too. We did not need to say a thing, he gave them all love.

Theo might have been born imperfect, not made for this world. But in that seven pound body he carried enough love to cover this earth. He did not cry or fuss, instead he let us hold and coddle him for 24 days. He let us learn, really learn, for the first time what it means to love. Love enough to let it go. Let him go without pain or suffering, Let him go.