A Celebration of Life!

"I never thought I'd be doing this!" is the thought that came to mind repeatedly in the days immediately following Joy's birth and death.  Planning a funeral is never fun, but planning a service for your recently born child is particularly un-fun.

Before Joy was born, upon the recommendation of our pastor, we met with a very kind funeral director from Laughlin Memorial Chapel and made some basic plans. They were so gracious and generous to us and donated their services and even the tiny coffin for Joy.  If you ever need the services of a funeral home in Pittsburgh, I'd highly recommend them (there you go - I never would suspect that at the age of 35, I'd be able to personally recommend a funeral home!). 

God continued to provide for us materially in this time.  Many years ago, someone had donated some grave sites to Eric's parents' church.  I forget the exact sequence of events, but upon hearing of Joy's condition, they offered to give us not just one site for Joy, but three, so that we could be buried next to her when the time comes.  What a blessing!  Furthermore, the sites are in a beautiful, park-like cemetery that is just up the street from the apartment where Eric and I lived for a few months when we were newlyweds.  We would walk or run (me reluctantly) through that cemetery during that first summer of marriage having no idea the significance that this place would come to hold in our lives. 

Leading up to Joy's birth, we had planned to have a quiet graveside service with just our immediate families. When we met with our pastor after her birth, he suggested using the mausoleum at the cemetery where Joy was to be buried as it would be more comfortable for everyone and easier to gather.  Fine by me.  Then he gently suggested that we might consider inviting a wider circle of friends to Joy's service. I was slightly surprised by this idea and we went home to think about it after planning the rest of her service.  After giving it some thought, we decided that we really would like our family and friends who had so wonderfully supported us through our pregnancy to get a chance to be a part of the celebration of Joy'w life.  And so we invited many of our friends and issued an open invitation to our church family to attend Joy's memorial service. 

With our pastor's help, we planned a simple service that we hoped would be meaningful for both us and our family and friends.  The only thing that remained was figuring out what to wear. Haha! It sounds trivial, but it didn't feel trivial at the time.  I had no idea what size I would be after giving birth, so I couldn't get something in advance. So 2 days after giving birth, I headed out to the mall. Actually, WE headed out to the mall.  I was insistent that I could go by myself, but in retrospect, I'm so glad Eric came with me.  I'm not a huge shopper, but shopping for a dress at 3 days post-partum is probably at the top of my least-pleasant shopping tasks - another one of those things I never thought I'd be doing.  I kind of shudder thinking about it even now.  But in the end, we found a dress that fit and was at least moderately flattering given the circumstances.  Thank goodness that Eric was there to give an unbiased opinion and encourage me to spend more money than I had planned on the dress we found. I can still picture the checkout desk where I stood praying that the cashier would not ask me what the dress was for (and she didn't).  I hope I will never need that dress again, but it hangs in my closet as a memorial to that time in my life.

Leading up to the memorial service, the prayer of my heart was that my mind would be clear during the service.  I didn't want to go through the service in a fog; I wanted to be fully present and really celebrate my daughter's life.  Just in case, we had a plan B - we decided to set up a tripod and record the service. And I'm so glad we did and have a lasting remember of that special day.  But God really answered this prayer too.  I was calm and cool and can still remember the details of the day with clarity.  I actually felt more composed than many in attendance at the service. I was worried it would seem like I was uncaring or unemotional, but I'm hoping people knew otherwise.  For us, it was just one more step in this journey, but I think for many attending the service, seeing that teeny tiny casket brought such a physical reality to the situation that it was hard not to react.   Not that I enjoyed thinking about my daughter in that little white box, but the events of the past few days had prepared us for this as well. And of course, many of our friends have little ones of their own, so seeing that baby-sized casket hit particularly close to home.

That morning, we dropped Liam off at the church.  Our church graciously arranged childcare for anyone who wanted to attend the service so that we didn't have the distraction of little ones at the service.  Eric and I arrived early to the cemetery and drove past Joy's grave site. It was hard to see that hole that was so big yet so small awaiting out little girl.  From there, we drove to the mausoleum and took our seats in the front row without too much conversation.  A small crowd quietly gathered. In the end, there were about 50 people there. I made a list of them when I got home so that I wouldn't forget anyone who was there on that special day.

The best word to describe the service is "beautiful."  It's the word that I heard repeated by nearly everyone I talked to afterwards.  It wasn't long, but it was meaningful, from the songs sung to the words spoken.  So beautiful, in fact, that I would like to share part of it with you now.  Talk about a 180 degree shift from my initial plans of an ultra-private service, right?  It's only about 10 minutes, and I would love it if you would take the time to listen/watch. I think Pastor Wolling so eloquently summarized what I have taken 6 months to type here (and I'm not done yet - haha!).

I'm no theological expert, but I do know what I've learned about God through the process of carrying Joy and would be happy to talk to you if any of this strikes a chord or raises any questions.  And if I don't know the answer, I'd be happy to search them out with you. 

The Aftermath, part i

As you can tell by the title, this post might be a little depressing. Perhaps "aftermath" is too dramatic of a word, but I just wanted to share about the hours and days after Joy's birth and passing.  I still maintain that the days after her diagnosis were the hardest part of our experience with a fatal birth defect, but this was a close second.  Some of this might be hard to read (and some of it is hard to reflect on and put in to words!), but I think it's important to be honest about the hard parts.  I also know that this might be read by others who are expecting a child with anencephaly and so I want it to be an honest reflection of our experience.

So when I left off, Joy had just been born.  She quickly passed away, and that started the clock for the two hours we had with her before she was to be taken away for her organ donation procedure. I had such a mixture of emotions immediately after Joy was born.  Of course there was sadness, but there was also a sense of relief. Don't judge me yet - keep reading!  It had been a long and difficult five months, both physically and emotionally. I had done all I could over those months for my baby - keeping her alive, preparing for her birth, and trying to be a good mom to her big brother in the midst of emotional turmoil.  And after she was born, there was a sense of relief at having completed my task. I had done everything I could do for her and had done it to the best of my ability.  It almost goes without saying that I would have changed the outcome if I could, but I couldn't.   I'm sure the hormone surge from my natural birth helped, but immediately after her birth I was very calm and almost able to enjoy being with her.  I was proud of myself and of my little girl!  It was actually kind of strange, because everyone around me was in tears, but at this point I was just kind of serene and soaking it all in.

As you saw in the pictures, we spent most of the time together with our parents and siblings and Joy. We also had a plethora of handprint and footprint kits.  We got a couple sets of footprints on paper, a plaster mold of her footprint, and then a handprint on a ceramic bulb that I later had glazed. We had several other options of memorabilia, but I didn't want to spend all of my brief time with her trying to make physical memories.  No matter how many hand and foot prints and pictures I had, it would never be enough, so I decided to concentrate on being with her while we could.  In retrospect, I still agree with that decision. I treasure the prints I do have, but having more wouldn't do anything more to assuage my grief.

A few people have asked me if I have any regrets from my time with Joy or anything I would do differently. I only have one small regret.  In my preparations for her birth, I read a suggestion about choosing a scented lotion to apply to your baby so that you could later associate that smell with your child. I loved the idea, because as my sister can attest, I have an excellent sense of smell and have a lot of memories associated with scent. (We even play a game called "What does that smell remind you of?")  I spent a lot of time sniffing lotion and chose one that I thought was just right.  But then when the time came, I decided I didn't want to put it on her...her skin was so soft and perfect and I didn't want to change her natural smell or feel.  But now three years removed, I wish I had a scent to associate with her. I put her blankets in a plastic bag, but the smell has faded. I still have the lotion I picked for her, but I do wish I had applied it on her soft little arms and legs.

As 1:00 AM neared, our families said goodbye to us, and more importantly, to Joy.  It was the last time they would see her this side of heaven.  We spent a few moments with her alone, and then handed her off to our Nurse Joan* and the Organ Transplant Coordinator Alice* who carried her back to the operating room. I'm planning a separate post later about our organ donation experience from start to finish, so I will cover this in more detail then. I don't remember exactly how long she was gone - maybe an hour or two? We tried our best to nap then, but it was hard to fall asleep.

After her surgery, Alice carried her back to us.  It's a small detail, but I really appreciated the fact that they carried her in their arms to and from us, like the precious bundle she was, instead of wheeling her around in a bassinet or gurney.  It made me feel like they really cared for her as a person, not just an unfortunate incident or a source of donated tissue.  Anyway, they had bathed her and dressed her in the little white preemie outfit I had purchased for her and wrapped her up in her blanket.  They had told us that part of the procedure involved cooling her body down rapidly to preserve the tissue (I think - I'm a little fuzzy on the details).  All I know is that when she was handed back to us, she was very cold and stiff and her skin was very dark.  Honestly, it was horrible.  Right after she was born and passed, though her face was dark, the rest of her skin was soft and healthy looking and she seemed like a peacefully sleeping baby.  After her surgery, she just seemed cold and dead. Which of course she was, but now her appearance matched the reality and it was hard to deal with.

Eric crawled up in the bed with us and we snuggled her close, crying and talking and just trying to soak in the last moments that we had with her.  We listened to a few songs that we thought of as "her" songs.  At this point, we were absolutely exhausted, having been awake for nearly 24 hours.  We had made arrangements with the funeral home that we could call them when Joy had passed when we were ready to have them pick her up.  (Another small detail, but somehow I hated the idea of her sitting in the hospital morgue and would rather pass her directly to the funeral director. He was recommended by our pastor and was very kind and caring.)  We started to doze off, so we carefully placed her in the little newborn bassinet next to her bed and decided to take a brief nap. A big mess ensued here between the nurses and the funeral home and us and what was happening and I don't even really understand or remember it, but thankfully Eric took care of it and the funeral home was very gracious about the whole thing.

After our quick nap, I was somewhat refreshed. We found out that the funeral director was on his way, so we prepared to say our goodbyes to Joy. I am glad I had that time to recharge briefly before it was time to say goodbye to Joy.  We listened to her song one more time, snuggled and kissed her and told her we loved her and we'd see her again one day.  It felt so inadequate at the time - it's one of those moments in life that is surreal and hard and you just don't know what is right so you do the best you can.  And then Mike, the funeral director arrived, impeccably dressed in a suit at 6 AM, and we carefully handed our little pink bundle to him.  He treated as precious cargo, but it was still so very hard to hand your baby to a virtual stranger, knowing it is the last time you would ever hold her.

And so that was that. Just twenty-four hours before, I had woken in my bed at home, with Joy alive and kicking inside of me. Now we sat alone in the room where I had delivered her, having just handed her still body to someone to prepare her for burial.  Talk about a whirlwind!

Shortly after, we were transferred to a postpartum room. The hospital graciously put us on a surgical recovery floor instead of on the unit with all those brand new babies.  Physically I felt fine, so I was discharged from the hospital about twelve hours after Joy was born.  There just really wasn't a reason to stay any longer.  But what I can tell you is there aren't too many feelings worse than leaving a hospital, having just given birth, but without your baby.  It was awful!   (Looking back, I think that's why I was so set on staying at the hospital the whole time Noah was in the NICU. I did leave once or twice to go to Target or to get some food, but for most of the week, I just stayed camped out in the hospital. I was not mentally willing to come from that hospital without a baby again.)  And so Eric and I headed home on a hot Saturday afternoon, back to one curly redhead but without another.