Christmas Approaches

We have tried so hard to look forward to Christmas day and the promise it holds. But every day marked off the advent tree is another day closer to the inevitable. We have purchased gifts for Henry. Clothes for his first day. Small toys. Items parents would normally buy for their child. But all these come with a heavy reminder. Even buying diapers for Henry is a struggle. We want to bury him in something natural, no plastic diapers. But the ladies at the store are very suspicious of why we only need one. It's hard to explain.

People have been so generous. We cannot escape God's grace during this time. Friends have brought us meals, helped Sarabeth with house work, watched Hazel. Even strangers have blessed us with baby announcements, gifts for Henry and massages for Sarabeth. This Christmas season will hold special meaning for the rest of our lives.

We bought stockings for Hazel and Henry with their names on them. I don't know what that will mean for future Christmases. But this year, everyone has a stocking with small gifts. Most of what Henry gets will be kept in his memory box. A few select items will be buried with him. My little lion man. We are having a casket hand made for him. His burial shroud is handmade by his great grandmother. We want so much to honor our son - in each small way.

Time Flies

The last month has been very difficult. It is impossible to escape the pending doom of my son's inevitable death. There is nothing I can do to stop it or slow it down. I stay up late at night to make time pass more slowly. We visit with family as much as we can. The pregnancy is getting harder for Sarabeth. Her amniotic fluid is elevated. She is really uncomfortable. She has contractions on and off. Our fear is that Henry will come too soon, before he ever has a chance to take a breath. I pray every day that I would get to meet Henry. That would mean so much to me.

We've been able to see Henry twice on the 3D ultrasound. Our daughter and mothers were also able to see Henry. This has been a great comfort to see our son, and on some level to interact with him. He is always active during ultrasounds, like he knows we're watching and he is showing off. He thumps the heartbeat monitor whenever we listen to him. He is a really strong baby.

Trick-or-Treat Again

Since our community does trick-or-treat on a separate night, Hazel got to go again. We invited some friends to our place so they could trick-or-treat again, too. We made a big pot of chili to share and all had dinner together. It was great to be surrounded by friends and their kids. It's just nice to be in the company of others who love us.

It was another chilly evening, so I put the fire pit in the driveway and made a small fire. Eventually we made some smores, but mostly it was just to stay warm. It wasn't as cold as the night before, but was it was still nice to have the fire. Hazel had a great time and went to about 30 houses on our street. She was really excited to get some M&Ms. This has been a good weekend to remember.

The Apple Orchard

I remember picking apples with my grandmother when I was a kid. We try to take Hazel to the apple orchard each year. We didn't make it until that last weekend of the season this year, but at least we made it. It's another family outing that Henry will not get to do again. So it was important to me that we take him.

There is a small train pulled by a tractor that the kids get to ride. Hazel loves it and rode with one of her friends. This family has been by our side every weekend since we found out about Henry. Thank you Jesus for friends to stand with us in this time.

We picked out a half peck of apples, some cider and apple pecan bread. It was still pretty cold, so we didn't stay too long. It was just nice to be at the orchard with my family, enjoying tradition. We met our friends at a nearby restaurant for dinner afterward. I shared some southern fired chicken with Hazel, and we got some chocolate cake to go.

All Hallow's Eve

As we dressed our daughter for trick-or-treat night, I could not escape the thought that Henry will never get to do this. The list of all the things he will not do grows daily. So we try to incorporate Henry in as many family activities as we can. I tried to convince Sarabeth that she should dress up for Halloween, as that would be Henry's only chance. No luck.

It was a very cold night for trick-or-treat. We only went to a dozen houses, but Hazel had fun. We went to a friend's house because our communities have different beggars' nights. Hazel went as a fairy, which required some additional clothing. She wore a dress underneath, tights, pants, mittens and a hat. She stayed warm at least.

Cemeteries

While I think it is still too early to be thinking about Henry's final days, my work has me reviewing cemetery regulations. My employer operates a modest cemetery and I am charged with reviewing our regulations. So I have been looking at other cemeteries and state law on township cemeteries. I cannot escape the fact that I will need a cemetery.

I came across a recent law that requires public cemeteries to provide for the burial of stillborn children either in an area dedicated to babies or with the parents. I can't just give this a cursory analysis. I want my son to share a final resting place with his mom and dad. I want to be next to him.

I want to carry him in my arms and place him in the earth. I want to cover him with earth and send him home with all the dignity and humanity that I can muster. And I cry over the thought of placing my son in the earth. The thought that my time with him will be gone in the blink of an eye shakes me.

Going to Church

Our church is full of young families. At any one time, there are at least a dozen women pregnant. A new baby is born nearly every month. So when we found out that we were pregnant, we were glad to be part of that excitement. We had wanted to add to our family and were so thankful. And it was fun to share with all those other expecting parents.

Since learning of Henry's condition, that excitement has been tempered. We're still excited to meet our son, but we do not have the same hope and expectation for a lifetime of parenting. Our time with Henry will be short. And interacting with expectant parents and new parents is hard. I don't want to detract from their joy, but at the same time, seeing all those babies just breaks my heart.

People at church are well meaning. But we are starting to receive the kind of well intended comments that we read would come. "I was reading this book, and I just want you to know this about your baby." "I know this is hard but I want you to know this about your baby." "Just remember this about your baby."

Folks mean well, but the best comments are ones of love and support. (And I don't need you to tell me anything about my son.) "I'm sorry to hear about Henry. I love you." "I'm so sorry to hear your news. Please come to our house for dinner." "I love you brother. Here's a key to my house. Anytime you need to get away, come on over." I take great comfort in the kindness and supprt we've received. I see God in my life despite my grief and pain.

Making a Place

I am trying to take things slowly. It's only been 13 days. I painted Henry's room four days after finding out about his condition. It was therapeutic. It is important to me that I make a place for him in this world, no matter how brief his time. I try not to get tied up in whether or not he is born alive. He is our son all the same. We will paint his dresser, paint a border on the walls and put up his curtains.

We still haven't told a lot of people. It's hard to have this conversation over and over. We're planning to send out announcements. Not sure yet what those will look like. We want our family and friends to know we're having a boy, that he will not live long and to ask for their prayers. I want our family and friends to know about Henry and be able to talk to us about him and to understand why things are different.

And when Henry is with us, I want our family to have a chance to be with him. And when Henry is gone, I want our family to remember him and be free to talk about him. I want there to always be a place for Henry.

Going Through the Motions

I am by nature a list maker. I've started making a list of all the things we want to do with Henry when he's born - pictures, foot prints, hand prints, keep sakes. I also make a list of all the things I will never get to do with my son. I don't write this list down, because it hurts too much. But I keep a mental list - too long to fathom.

I am trying to take things slowly. It's only been 12 days. I painted Henry's room four days after finding out. It is important to me that I make a place for him in this world, no matter how brief his time may be. I try not to get tied up in whether or not Henry is born alive. He is our son all the same. We will paint his dresser, paint a border on the walls and put up the curtains. We will buy him cothes and toys. His great grandmother will make him a blanket. Because he is our son.

And then there is the list of things we have to do that should never be. The task of planning our son's funeral before he is even born. To help cope with the enormity of planning my sons entire life and death in 4 months, I've made a schedule. We need to spread things out, to pace ourselves. There are things that are okay to do now, and things that we need time to come to terms with. For now, we are going through the motions. And waiting for the next time we get to see Henry.

Making New Memories

We had planned some family outings in the weeks following Henry's diagnosis. We decided to keep those plans and try to make new memories that would help us remember our time with Henry.

It was only two days after learning how our lives would be changed. We had planned a trip to John Bryan state park in Yellow Springs. We decided to go. Yellow Springs is one of our favorite places to visit. The weather was beautiful, the peak of fall. We hiked 3 miles along the river through the woods. Hazel hiked 2 of the 3 miles. It was so good to get away - breathe some fresh air. In the following weeks , I've found it's hard to stop thinking about Henry. Hard to get up and go to work. The weekends help me mark time and catch my breath.

The following weekend we had planned a train ride. We rode from Akron to Peninsula through the Cuyahoga Valley. Some good friends of ours met us there. We rode the train with their kids. Hazel had a great time. The weather was great and the trees were in full color. It was Hazel's first train ride, and Henry's, too.

The First Day of the Rest of My Life

It was October 7, 2010. My wife went to the doctor for a scheduled 20 week check-up and ultrasound. She was to meet with the doctor first at 11:15 and then I would meet her for the ultrasound at 11:45. My wife called at 11:30 and asked me to come over then - it was only a few minutes from my office. When I arrived, a nurse lead me to the ultrasound room. I was excited to see our baby.

We had an ultrasound at 7 weeks to confirm pregnancy. We already had a beautiful 3 year old daughter and had no major concerns. But my wife had a nagging feeling for weeks that something might be wrong. We even argued about what roll, if any, God plays in birth defects.

When I arrived in the ultrasound room, my wife was already upset. I didn't know why. Apparently, the technician had already gone out to consult with the doctor, but he was still with another patient. The technician showed us our beautiful baby, long limbs, perfect hands and feet. She said the head was measuring a little small. We had planned on waiting to find out if it was a boy or girl, so we didn't ask.

The doctor came in about 15 minutes later. He would say the words that would forever change my life. "It's not what we expected is it?"

I had no idea anything was wrong. I was dumbstruck. "What do you mean?" I asked. Then he told us that our baby has anencephaly. I asked him to write it down because I had no idea what it was, or how to spell it.

Our doctor described to us what this likely meant for our baby - that the baby's brain had not formed and the baby would die shortly after birth. We decided that we needed to know if it was a boy or girl so that we could begin bonding with our baby. Our doctor told us it was a boy. I had secretly wanted a boy and was still excited to have a boy. We decided on the spot to name him Henry. We didn't want to waste any time not calling him by name. He is such a fighter, always very active - often holding his hands over his face like a prize fighter. We called him Henry the lion.

It would take us a while to decide on a middle name. My middle name is Cyrus, and I always wanted my kids to have the middle names of ancient kings. I thought it would be fitting for Henry. We decided on Henry Leonidas. It's a big name, but fitting for our precious little boy.