Good Tidings of Great Joy

As we decorated our house for Christmas this weekend, I was reminded of God's faithfulness to us in even the smallest of details and wanted to share it with all of you.

To set the stage, it was Christmas 2012, just four months after we had laid Joy to rest. I had been having a rough few days - it seemed like everyone I knew was pregnant or having healthy babies.  Even Princess Kate had recently announced her pregnancy.  All those babies and pregnancies coupled with the general emotional overload that can come with the holidays had just left me feeling down. On this particular Tuesday, I had been in tears at my Bible study as I asked the ladies to pray for me in my sorrow.

Later that night, we started decorating for Christmas, even though it was the last thing I felt like doing.  From here, I will tell the story via the email I typed to those dear Bible study ladies the next morning:

 "We were unpacking the Christmas decorations last night. I opened one box and spotted a Christmas card holder that hangs on the wall on the top of the pile.  I was excited because I vaguely remembered shopping for one last year but couldn't remember if I was successful or not and wanted a place to put all those cards that are already piling up.  The weird part was that Eric was excited too - I couldn't figure out why he cared about a Christmas card holder.  I asked him why, and he said "look at it".  When I looked closer, I almost burst into tears (a common theme of yesterday for me apparently!).  It says "Good news of great JOY" with the joy part in huge letters.  

After seeing it, the story of me buying it came back to me and I was amazed at God's provision and timing, even in the little details.  Last year after Christmas (when I was pregnant but didn't yet know that Joy had anencephaly and we hadn't even considered the name Joy) I went to the Christian bookstore to get a Little People nativity set that was on clearance.  While I was there, I decided to look for a cardholder since I hadn't found one elsewhere.  They had a few, but none that I loved because I wanted one that displayed the cards not just collected them.  But this one was cheap and the boys were waiting in the car, so I just grabbed it.  Little did I know the significance it would have a year later when I unpacked it.  I know that "joy" is a common theme of Christmas and Christmas decorations, but the timing and the circumstances and even the style of the banner with the family silhouette on it give me no doubt that God's hand was at work. I know that God is faithful and cares for us, but I was so thankful to have a literal sign of it yesterday!"

You better believe that that Christmas card holder will be hanging on our wall for years to come, even if it's tattered and torn. It will serve as yet another Ebenezer (a sign of God's faithfulness and help, see this post) on this journey. 

Pregnancy and Infant Loss Awareness Day

Today, October 15th, is Pregnancy and Infant Loss Awareness Day.  It's kind of a depressing "holiday," but an important one to address a topic that is all to common but infrequently addressed.  People fall into one of three categories on this one - those who have never experienced pregnancy or infant loss firsthand and hope they never will (I'm not saying that disparagingly at all - of course you would never WANT to experience such a thing and of course there are lots of sub-categories here, but that's a topic for another day), those who have silently suffered such a loss, and those that are public about having lost a baby either in or out of the womb.  There's nothing wrong with any of those categories, but the day means different things to each of them. Personally, this blog has helped me move from category number 2 (not that my story was completely unknown, but I just didn't have much to say publicly on the matter) to number 3 over the past year.  It's been cathartic for me to share Joy's story, and from what I've witnessed, helpful to others too. 

So this year, on Pregnancy and Infant Loss Awareness Day, I have a couple of things to say.  First, if you have lost one or more pregnancies or babies, I extend my sincerest condolences.  I don't have any sage words for you, but I am happy to listen if you need an ear to chat; if you need someone to understand when you struggle with healthy babies around you and as you mourn what could have been I'm here. I'm not saying it's something you HAVE to talk about, but if you want to talk about it and don't know how or where or with whom to start, I'd be honored to hear about your little one.

When I was carrying Joy, my associate pastor's wife gave me a lovely book that really helped me deal with Joy's loss. It's called "Safe in the Arms of God" by John McArthur.  It's a small volume that talks about the theology of the death of a child.  As a Christian, I had always hoped/assumed that children who died would go to heaven, and that was enough for me.  (I also knew that children who die do not become angels, a common term in the baby loss community that really irks me.  People don't become angles! So please don't refer to Joy as my little angel.  Okay, stepping off my soap box now. Haha!)  But facing the loss of my own child, I wanted something a little more solid to back up that vague idea.  In his book, MacArthur makes a compelling Biblical argument to support the idea that all children who die in infancy are saved by the great mercy of God and are safe for eternity in the arms of a loving God.  I'd recommend to anyone who has lost a child or as a thoughtful gift to anyone you know walking this difficult road. 

Lastly, I want to share another song that has been special to us in our journey. (Yes, that's your cue to break out the tissues.)  The song is called "Hello, Goodbye" and is written and performed by Michael W. Smith. I haven't been able to find a ton of background information, but I know that it was written for a friend of Smith's who lost a baby who was just a few days old. The odd part is that this song is on a CD that I had in high school and college. I knew the tune and even the words, but somehow the actual subject matter had never registered in my brain!  I will confess that I don't like to listen to this song much anymore, because it was written for (and references) a baby named Noah, which is our younger son's name.  But it is still appropriate to share today, for all of those who have lost a child far too soon. I always liked to put Joy's name in the lyrics, although it was not quite the right fit rhythmically.  (After about 3 minutes, it gets a little repetitive, so feel free to just listen to the first half.) 

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. 

Happy Birthday, Joy!

(Sorry for being MIA lately. I do plan to continue telling the story of the days and weeks after Joy's birth, but today's post is a little different.)

Today is our daughter's 3rd birthday! It's hard to believe that Joy would be an energetic, opinionated, spirited (based on her brothers' personalities at least!) preschooler now.  I say that at every birthday - "it's hard to believe that Liam is 5" came out of my mouth several times over the past week - but in this case, it's really is nearly impossible to believe.  Joy will always be "baby Joy" to me.  I actually know of 4 little girls who were born to friends within a few months of Joy.  Honestly, at the time, that was really, really hard, and sometimes it still is.  But now, three years later, I am beginning to see it as a blessing as well.  I don't just have to imagine how big she would be and how she would be developing - I have living, breathing models of how Joy would be growing and changing.  

Of course, Joy isn't here to celebrate with us, so it's not your typical birthday celebration. Every year on this day, I struggle with how to spend the day and how to commemorate her birth and life. Birthdays in our family are kind of a big deal.  Not a big deal in an over-the-top "hire a petting zoo and give expensive gifts" kind of way, but a special day to celebrate you and another year of your life; a day to celebrate the past year of life and to look forward to what's to come; a day that's full of your favorites things and foods and places.  Liam woke up on his birthday and said "this day is all about me".  I told him the day was MOSTLY about him, not ALL about him, but he has a point.

But of course when the birthday girl is not alive, it's a little different celebration. It's hard to have a day "all about" a person that's not physically present; a person you never got to know. It's a day when nothing feels quite right.  I'm sure this sentiment is shared by anyone who has lost a child.  I'd love to sit quietly and peacefully all day and think about Joy and her life and life in general, but with two crazy little guys running around, that's not exactly feasible.  On the other hand, the lack of activity also feels wrong.  Our older son's birthday is just a few days before Joy's, and the week has been a flurry of fun activity - birthday treats and adventures, family and friends and food and gifts, telling friends and strangers that today is his big day.   It's actually the absence of activity that is hardest for me.  Especially on her first birthday, it was sad thinking of the excitement that is usually present at a first birthday party - the commemoration of so much growing in one year and of surviving that first hard year of parenting.  This year on Liam's birthday, though I enjoyed the day, a part of me couldn't help but think of what was missing. With their birthdays so close together, it probably would have been a shared party.  I had twinges of sadness as I thought that the dump truck cake should have had a princess driving the truck and its bed filled with glitter...or something ridiculous like that!  There should have been princesses and dresses sprinkled among the pile of car themed gifts. (Okay, I'm not a girly girl, so I don't actually miss the pinkness itself, just the life it represents! And yes, these are ridiculous gender stereotypes and not everything in our house is car themed, but there is a noticeable absence pink and glitter and princesses.)

But now today is quiet - it doesn't feel right to do anything too fun on this special day. I know other families do balloon releases or other large celebrations for their babies who have left this world too early, but that doesn't seem to fit my style either.  So we've made our own traditions.  We usually have an ordinary, quietish day at home.  Then in the evening, we take a balloon and some cupcakes to the cemetery and have a picnic near Joy's grave.  The first year we took Liam; last year Eric and I went by ourselves because I didn't want to be wrestling a baby and answering a curious 4 year old's questions about what we were doing.  This year, weather permitting, all 4 of us will go.  As Liam has grown, we've explained a lot more about Joy in the past year, so he now understands that today was her birthday and that's she's in heaven but it's still nice to think about her and celebrate her today. Then in the evening, we will probably watch the video of her memorial service.

(I need to get a better picture of her headstone, but I really love how it turned out. Those are her actual footprints etched into the granite. The verse is Psalm 139:13 "For you created my inmost being; you knit me together in my mother's womb.")

I certainly don't expect all of my friends and family to remember Joy's birthday (I definitely don't remember all of THEIR kids' birthdays!), but I treasure the few cards and messages that arrive every year around this time.  This isn't a plea for cards and messages, and I don't purport to speak for everyone who has lost a child, but I know people are sometimes unsure of what, if anything is appropriate on days like today.  I certainly fell in this camp before Joy was born.  From my new perspective, I think it's always helpful to send a card or a greeting of some kind.  It's not as if your card will suddenly remind that person of their loss - it's on their mind anyway, and for me, it's comforting to know that others are joining me in remembering Joy.  It doesn't have to be anything sage or spectacular - I think the importance is in the gesture itself. I have to say that sharing her birthday with all of you this year is really cathartic too - so thanks for allowing me to share Joy's life with you and for your encouraging comments along the way. 

I have to say that God has been gracious to me in giving me little reminders around Joy's birthday each year that though her life was brief, it was not without impact. On the day before Joy's first birthday, I was really at a loss about how to feel and what we would be doing the next day and was just kind of down.  Eric and I were on our way to a baseball game with my extended family, and stopped at a restaurant downtown beforehand. Eric went up to go to the restroom and was gone for a LONG, LONG time. I was starting to imagine he fell in or something!  Eventually he came back and told me that he had run into an acquaintance of ours from our old church.  After some small talk, the friend apologized for taking so long to deliver this message, but that he had heard about our daughter and was sorry for our loss.  He works in IT for the large hospital system that runs the hospital where Joy was born and went on to say that he had heard of our situation at work (names weren't mentioned, but he knew enough details to put two and two together and know it was us) and heard talk of how our decision to carry Joy and her birth really positively affected the nurses and staff at the hospital. When he was telling this story to Eric, he had no idea that the next day was her birthday, but I really felt like God used him to remind us that Joy's legacy was living on.  Even this week, I found out that this little blog has really been impacting someone's life in a positive way. 

This is getting long, so I'll close with a song that I think of as Joy's song.  Well, there are actually three of them altogether, but I'll save the other two for another day.  The song is called "I Will Carry You," and couple that wrote it (Todd and Angie Smith) also had a daughter with a fatal birth defect that they carried to term. They wrote a book by the same title if you're curious.  So grab a tissue and take a listen.  

So happy birthday, sweet girl. "I will carry you while your heart beats here, long beyond the empty cradle, through the coming years.  I will carry you all your life, and I will praise the One who's chosen me to carry you." 

Our Sweet Joy

If a picture is worth a thousand words, I've got 15,000 of them for you! 

We were blessed to have a photographer from Now I Lay Me Down To Sleep (NILMDTS) present to take pictures of Joy.  NILMDTS is a non-profit whose mission is to " introduce remembrance photography to parents suffering the loss of a baby with a free gift of professional portraiture".  They train and educate professional photographers who volunteer their time and talents to people in situations like ours. I think I mentioned it before, but Melissa Distel is the photographer who took picture of Joy for us, and we are so grateful for her service to us. 

I would love to share some of the photos of Joy with you, with two caveats:

1) The pictures are watermarked.  Not because I don't trust "you" (the you who I know in real life) but because I have seen firsthand others' pictures being taken and used in hurtful ways for purposes other than what they were intended for.  I'm sure someone could remove these watermarks if they wanted to, but hopefully they'll just move on to an easier target. I tried to put the marks on in a way that wasn't too distracting from the picture itself. 

2) I decided not to share any close-up photos of Joy's face.  The skin on her face was very dark, and her eyes were very prominent because of the malformation of the eye socket and the absence of the cranial bone.  (Here's a drawing if you'd like a visual.)  I'm not ashamed or embarrassed of how my daughter looked, but those images are not something that I'm willing to put on the internet, for reasons I described in #1 above. I kind of feel like Wilson in "Home Improvement" (I hope some of you get that reference) but decided that this level of sharing was what I was comfortable with. If you're curious (which is fine!), there are many pictures of babies with anencephaly here.  I'm also happy to share more pictures of Joy with you in person if you so desire. 

So without further ado, I present Joy Marie Salesky.  I hope that you can sense the love and the peace that was present during these precious moments with our daughter. 

Mother and daughter:

She had big feet, just like Liam did.

These keepsakes (and others) were provided by the hospital. This little leaf picture hung outside the door of our labor suite to let the staff know that it was a less-than-ordinary situation. I'm not sure exactly what situations they are used for, but I was shocked to see how many there were during my labors with both Joy and Noah.

She had my "finger toes" as Eric affectionately refers to my long toes.

This beautiful blanket was crocheted for Joy by a dear friend.  She makes blankets for each new baby in our group of friends and made this lovely white one for Joy.

 This is one of my favorites!

The outfit Joy was buried in. I wasn't sure which size she would need, so I bought one in Premie size and one in Newborn.  Even the Premie one was a bit big, but she wore that one and kept the other one as a keepsake. 

I hope you are blessed by seeing these pictures of our time with Joy. 

Joy's birthday, part ii

(If you haven't read part i, start here.)   Now that you've heard about how Joy came into the world, I wanted to share some little details that were evidence to me that God was at work in the midst of this difficult situation. 

Throughout my pregnancy, I was concerned about the medical team that would be caring for Joy and me.  I had read accounts of other mothers carrying babies who were "incompatible with life" whose medical providers did not agree with their decision and did not treat them with much care or compassion.  However, I can honestly say that I did not encounter one instance of this throughout my pregnancy and delivery, and for that I am grateful.  While I was (and am) confident in my decision to carry Joy, I think it would have been heard to deal with someone to be hostile or uncaring towards her.  So though I don't know if everyone I came in contact with agreed personally with my decision, I never felt like I was looked down upon for my decision to carry her.  In fact, most of my providers treated me with care and compassion.  I never had to wait in the waiting room full of happy, expectant mothers - they always called me back to an exam room immediately (much to the chagrin of everyone who was there before me!). The midwives always gave me an extra-long listen to Joy's heartbeat and treated her just like they would any other baby.  They were concerned about me physically and emotionally. I couldn't have asked for better care. 

Leading up to the delivery itself, I had asked my friends and family to pray specifically for the medical team who would be caring for us.  I had met and liked most of the midwives in my practice, but really wanted someone with more experience and wisdom to handle my birth.  When I walked in for my induction, I found out that Helen* was the midwife on call.  Helen is the most experienced midwife in the group, with years of experience delivering babies in many different circumstances. I asked her how long she would be there and who was on call next, and she said that she would be here "until this baby is born"!  If you know anything about our modern medical system, that's incredible!  And so she was there from the being of labor until the end.  Helen has a somewhat matter-of-fact personality that was perfect for our emotional situation.  She was supportive and kind and our advocate during the whole birth process.

I often say that the nurses you have matter just as much (or more) than the actual doctor or midwife.  Again, our prayers were answered with Nurse Joan*.  Our whole birth team had been prepped in advance, and during a rare quiet moment when it was just Joan and I in the room, she told me that she was "honored to be caring for you and Joy" and then continued to tell me a personal story about her own life that she said she had never told anyone in the hospital.  True to her word, she treated Joy and I with care and compassion. Joan's shift was scheduled to end at 7, but she "just happened" to have her shift extended and she ended up being there when Joy was born and was the one to weigh and measure her and bathe her and take her back and forth from the operating room for her organ donation (more on that another day).  When Joan left, she handed us off to Jessica*.  We weren't under her care for very long, but she made a big impression.  She took care of me after Joy's birth, and said a beautiful prayer with us after she took us up to my post-partum room.

Another huge prayer request was for the birth itself, and for Joy to be born alive.   She was born naturally (no c-section, no pain meds) and was delivered right into my arms with Eric looking on, in the same way my two boys were (or would be).   Our family got to meet her immediately.  Although the birth wasn't enjoyable per se, it was all I could have asked for.  And as you know, Joy was indeed born alive.  If I'm being honest, this part is a little hard for me, because though she was "alive" she wasn't full of life.  She didn't cry or open her eyes or even breathe.  Her skin was rather dark because of the lack of oxygen (not uncommon with babies at birth, but she never "pinked up".)  Occasionally I wonder "should I have prayed for something more or more specific? Asked for an hour or a day or a week?".  But even a week or a month would not have been enough - I think that anytime you bury a child, after 1 day of life or 40 years, it's "not enough" time with them - it's just not the proper order of life. Though I would have liked more time with her and for her to be more full of life, most of the time I am content knowing that Joy's 10 minutes were just what God ordained for her and for us.  

This last little detail still gets me every time I think about it.  A little backstory: I tend to be a person who looks on the bright side of things and tries to find the positive in any situation.  So one day after Joy's diagnosis, I was wondering if she would look like Liam.  My mind wandered and I wondered if she would have red curly hair.  Suddenly, I realized that she would most likely not have ANY hair because of the opening on her head. For some reason, this just crushed me.  I kept my chin up for this most part during my pregnancy, but this was devastating; I sobbed and sobbed.   I don't think I dwelled on it much after that, but those moments came rushing back to me when Joy was born, as we immediately noticed that she was born with red curly hair!  The opening on her head was rather large, but from ear to ear all around the bottom of her head, she had long-ish curly red hair.  This is particularly amazing considering that both boys were born with just a little red fuzz and didn't have much hair to speak of until they were at least a year old!  I felt like it was a little gift from God - His way of saying that He was with us, and that she was His child and our child. (I mean I knew she was our child, but it was a physical sign that she had the Salesky trademark; she belonged to our family no matter how shortly she would be a part of it physically.)  

In everyday life, I confess that I am far too quick to attribute things to coincidence or "good luck" or just not to think about their source at all.  I definitely do not regularly reflect on the fact that  the thousands of small blessings of life come from the "giver of all good things".  That's not a good mindset for a believer to have, but it does mean that I'm not speaking lightly when I saw that I truly believe that God answered our prayers regarding even the small details of Joy's birth.  Furthermore, He was present in ways that we didn't even think to ask about (the red hair).  I think that's why the red hair is so precious to me - I suppose you could look at the medical care I received and say "that's just the way the hospital scheduling played out - how fortunate." and so on. But in my eyes, there's no way you can attribute long curly red hair to anything but the hands of a gracious and compassionate God. 

*Names have been changed in some kind of weird reverse-HIPAA protection of privacy. :)

Joy's birthday, part i

At long last, we knew that August 3 was the day that we would meet our daughter. There were many scenarios and possibilities regarding Joy's birth and we had planned and discussed our options as much as possible.  We also had many people praying regarding the details of that big day.  In the hours just before and after Joy's birth, we saw God's hand at work in ways that were unmistakable.

Actually, God's providence was at work long before we were even pregnant with Joy.  Two years earlier, when Liam's due date was nearing, I also had to have an induction.  I had planned and prepared or a natural birth and was terrified that being induced would end up leading to a C-section.  Thankfully it didn't!  Now two years later, I was so grateful for that experience and the feeling of confidence that I had that my body could handle an induction.   So when Joy was born, although I didn't love the idea of labor being induced again, it actually worked out well so that both of our families, including my sister from South Carolina, could be present for her birth. 

The hospital told us they would call us between 3am and 7am to come in.  They called at 5:30am, which was perfect - we got a decent-ish night's sleep but got on the road early enough to miss rush hour traffic.  Thankfully they were all ready for us at the hospital - I was grateful that we didn't have to spend time in the waiting room amongst all those excited soon-to-be moms.  They even arranged for us to have an out-of-the-way room in the corner.  It still took several hours to get things going, between paperwork to be filled out and decisions to be made.   This was another point in which I was glad for the preparations I had made for Liam's birth. We had taken Bradley childbirth courses, and one thing they stressed was being assertive (in a kind way) about your wishes for your birth. I am not naturally an assertive person, but I definitely had ideas about how I wanted things to go with Joy's birth, and was glad that I had had some prior experience in expressing my preferences to the medical staff.

[This is a birth story.  I tried to keep it rated G, but if you're squeamish, you might want to skip this part. Haha! It's interesting to me and to many others though, so I wanted to include it.]

Finally, at 9:20 am, the induction officially began!  An hour later, the contractions were picking up. By 1:30 they were really close together, but not all that strong.  I was able to get a mobile monitor for my contractions, so I was allowed out of bed.  I walked laps and laps around the labor and delivery hallway. We had decided not to monitor Joy's heartbeat during labor - I didn't think that I could handle going through labor knowing that she wasn't alive any longer.  Thankfully she was kind enough to move around periodically to let me know that she was still doing okay.

[I wondered if some people might think it's kind of odd to have pictures taken during this situation looking happy, but then I decided that I didn't care what other people think. So if you think it's weird, just don't tell me. I love pictures and love to document our life with pictures and am I'm glad I have these. Meanwhile, Eric was documenting his part of labor with pictures like these: 

If you know Eric and his penchant for Diet Coke, you'll know how appropriate that picture is! It was a very serious and sad day, but I was grateful for moments of levity and for my silly husband to help get me through the physical and emotional pain!]

By 6pm, I was tired, hungry and only dilated to 4 cm. That's when I started to get really discouraged.  The organ donation coordinator provided pizza in one of the lounges for our family and support team.  They tried to keep it a secret from me, but I could smell it on their breath when they came back in (Eric claims I have a super-human sense of smell).  Logically, I knew that they needed to eat, but I was pretty angry that I couldn't!   So I ordered tray after tray of "delicious" clear fluids - chicken broth, gatorade, and italian ice (which was actually pretty tasty but not all that filling) and pressed on.

At that point, the Maternal Fetal Medicine doctors who were overseeing my care suggested breaking my water to speed things up.  I was very much not okay with this - research indicates that the bag of water really protects an anencephalic baby's head during contractions, so I politely but forcefully turned down that idea.  I was again grateful for my Bradley classes that taught me that I don't have to go along with all the suggestions made to me and for a supportive midwife who agreed that breaking my water wasn't necessary at this point.  Finally at 6:30 pm, the contractions starting picking up in intensity.  I always joke that labor is the only time that people seem to be excited to see you in pain (hopefully it's the only time!).  The Summer Olympics were happening while I was in labor, so I remember watching some long-distance race and wondering who was exerting more effort!  I also distinctly remember watching Jeopardy - it was Middle School Jeopardy week and I was on a roll answering questions between contractions.  Random, I know. 

We chose to have a doula for Joy's birth, and she was so helpful in keeping me comfortable and encouraged. I maintain that I will never have another baby without a doula!  She kept me company as we walked around the halls and bounced on the birth ball.  Around 10 pm, I was completely exhausted and was ready to just give in and get the epidural so I could lay down and rest comfortably.  I had really hoped to go without it so that I could move around freely during and after birth.  Also, since I've never had anesthesia I was scared that I would have a bad reaction...and then there's the whole "needle in the spine" thing.  But I was so tired and in so much pain!  The Midwife checked me again and I was only at a 7. I told her and Eric that I thought I might want the epi, and she encouraged me to wait until 10:30.  I'm so glad she did!  I know that one of the common signs of transition (the end of labor before pushing) is feeling like you want to give up, but I wasn't optimistic that I was that close and couldn't allow myself to get my hopes up.  But apparently I was that close  - shortly after 10, I felt a little pop and a tiny gush.  I was pretty sure it was my water breaking, but the nurse didn't think so.  The next contraction proved me correct - all over the floor!  I guess that nurse should have believed me and moved me to the bed. Ha! After a couple super painful contractions, I jumped to 9 cm!   

During this period after my water broke, Joy let out a huge string of powerful kicks - at least 10, if not more. They were so strong that you could literally see my stomach moving from across the room.  I like to think of this as her grand finale and her fond farewell.  (At that point, I wasn't even sure if she was still alive.  She had either stopped moving as much or her movements were less noticeable with the pain of labor.  The midwife had checked with the doppler to establish a time that she was alive for organ donation purposes, but Eric didn't think it was a good idea for me to know whether they had found a heartbeat or not. I was so relieved to know that she was still alive and kicking, literally!) 

I felt ready to push, and the midwife said I could.  A couple of pushes later, the rest of my water was expelled with a painful explosion.  I'll spare you the details, but after a few excruciatingly painful moments, Joy Marie Salesky was born at 10:50 pm (less than an hour after I was ready to give up!).  The midwife placed her directly on my chest and into my arms, just like I wished.  She was a tiny thing, weighing only 4 pounds, 2 ounces.  

The neonatal team was on hand and immediately assessed her on my chest to see if she had a heartbeat, which she did.  The biggest prayer of my heart had been answered!  

Our medical team was amazing - as soon as Joy was born they toweled her off and cleaned me off and made me presentable so that our families could come in to meet Joy.  They were waiting just outside and were all in the room within a few minutes of her birth.  

Unfortunately, the force of being born was too much on her exposed brain and she never took a breath on her own.  After just a few minutes (10-15), her heart stopped beating and she passed peacefully from this world to the next. I don't even know exactly when it happened, but I do know that she was being cradled by one of her family members as she passed.  The saying is kind of trite but true - "all she knew was love," and really, what more can any parent wish for their child?

Falling in Love

Time is a funny thing - when we first got Joy's diagnosis, five months seemed like a long time to carry this child I knew I couldn't keep.  Now, a few years later, I started to think that five months was really quite brief and that I was mentally exaggerating this time in my life.  But now it's been over a month since I've posted here, and it feels like a long time...then I realized that I started writing here on Joy's diagnosis day, so I was pregnant during all these days that have passed since I've started the blog.  I guess when you're living life day by day, five months really does last awhile!

So anyway, as soon as we made the decision to carry Joy, I knew this would be a difficult and unique experience for me.  Maybe that's an understatement? What I mean is that I had been in other challenging and uncomfortable situations with foreign travel or life decisions, but most of these were places that I had put myself, so I at least felt the illusion of control.  But in carrying Joy, there was no such illusion! 

During these months, I had so many prayer requests.  I did pray for myself and for Joy, but there were many times when I just didn't have the words.  I was (and am) so grateful for those around the country whom I knew were interceding on our behalf.   Though we would have loved nothing more, throughout this time, we had a sense that God's will was not to heal Joy.  I believe that one must be careful in saying we know God's will, and I don't believe that He couldn't heal her, but just that He would not in this situation.  That might sounds kind of harsh, but as we prayed and others prayed for us, God was beyond faithful to us and we saw Him in ways we never could have imagined. (You'll have to keep reading to hear more on that...)

When I first got Joy's diagnosis, I thought I would just wait out these five months as my duty to God and my daughter and then be happy when they were over. But as time passed and Joy's birth grew closer, that changed. Like any pregnant mother, I began to get to know my baby and I fell in love with her.  Joy was a mover and a shaker - she was always kicking and moving and letting her presence be known.  It's as if she was saying "I'm not going to be here for long, but I'm going to make the most of the time I do have!".

So as my due date (July 20) approached, though I was more than ready not to be pregnant anymore, I was filled with dread as I knew it most likely meant saying goodbye to my baby.  The last few weeks were a roller coaster.  It is common for mothers who are carrying anencephalic babies not to go into labor on their own (the speculation is that the babies don't produce the hormones to send a mother into labor and their soft heads also don't have the ability to apply pressure to the cervix).  So I wasn't surprised when July 20 came and went with no sign of a baby.  I also wasn't surprised that my blood pressure was up at my weekly check up - my high blood pressure had caused me to be induced a week early with Liam.  So I was mentally prepared for an induction at 41 weeks, but much to my surprise, my blood pressure was back to normal. So we kept waiting...up and down...up and down...

The Maternal Fetal Medicine Doctor I had consulted with was prepared to let me go to 43 weeks before inducing labor, but as I approached 42 weeks, the midwives and I decided that it would be best for me, mentally and physically, to have an induction at 42 weeks.  I think the waiting game at the end of pregnancy is always stressful, but this had an extra element of stress. I felt like a ticking time bomb!   Although part of me was not ready for to set an end date, (can you ever really be ready for an event like that?) I had a sense of relief and peace, and knew it was time to get ready to meet our daughter...

A Sad Farewell

[This is more than slightly off topic and rather lengthy, but since this is my little corner of the internet, I decided it's okay.  I probably won't even notice if you skip this post. I also plagiarized myself and took parts of this post from a post I wrote for my old blog years ago. So if it seems familiar to you, that's why! ]

Last weekend (okay, a couple of weeks by the time I finished this post!), I made what was probably my last trip to one of my favorite places in the world – JBM (Joseph Badger Meadows Camp and Conference Center). JBM is a camp that I attended as a child, and then volunteered at and worked at as a teenager into my early twenties. I did everything from being a counselor to painting fences to working in the kitchen and even served as the assistant summer camp director for a summer or two.  Even after I entered the "real world," I would take a week off of my job and volunteer at JBM for a week.  So, needless to say, I have a lot of fond memories of the place.

Unfortunately, the Presbytery that owns JBM announced this winter that it would be putting the camp up for sale. Thankfully, one of the pastors in the Presbytery is a former JBM staff member and worked hard to ensure that those of us who loved it would be able to say farewell.  And so May 2 was marked on my calendar for months and I approached the day with both dread and anticipation.

Driving up that gravel road into camp was almost surreal.  Not much had changed on the property in the 15 (yikes!) years since I worked there.  Of course, in lots of other ways, nearly everything has changed both in my life and the life of the camp.  But the old farm house still smelled the same, the paths took the same route through the woods, and the cabin doors still made the same slamming sounds.  As I walked throughout the camp, my mind was filled with memories of the time I spent there. Though there are plenty of funny stories and inside jokes to think about (and a few of those did come to mind), it was more of a general sense of reliving a period of time - a sense of remembering an old friend and the things we used to do together.  Or maybe like an old movie reel with continuous but somewhat fuzzy clips playing of faces and places - images of gathering in the industrial kitchen on staff night, silliness at the pool, traipsing through the fields and woods, quiet moments in the chapel in the pines, and hours spent on front porch cabins. It was almost like attending the memorial of a loved one - I was filled with sadness at what had been lost, but great happiness in remembering the time we spent together, both specific times and the general feeling of being at JBM.

I debated whether or not I wanted to take Liam with me to the JBM farewell.  Part of me wanted to share this special place with him, but the selfish part of me wanted to have my undivided attention to give to reliving my days at JBM.  Through a long chain of events, it ended up that he pretty much had to come with me, and I'm so glad it worked out that way.  It was so fun to see him discovering one of my favorite places - I was actually able to see it with new eyes through his wonder of hiking through the woods and questions about how camp worked and what we did there.  On our way home (and several times since) he has said "I'm so sad that JBM is closing. It is so fun there...I wish it didn't have to close."  Me too, buddy, me too!

Some (or many) of you have never been to JBM. So what does any of this have to do with you? Well, in thinking and rethinking all of this, I've realized a couple of things that are significant to my life now, and might be applicable to anyone, whether you not you've been to JBM or perhaps have a "JBM" in your life that has a different name and a different look.  

As I was anticipating my visit and pondering the good ol’ days at JBM, I was trying to figure out what made it such a special place to me. To a stranger looking around, it probably appears as a few hundred acres with a barn, a swimming pool, several other modest buildings, open fields, and wooded areas – nothing special. But to me (and many others), it is more than the sum of its parts. Looking back, it was a formative time and place in my life, in many ways. During the countless days I spent there, lots of memories were made. I could tell you stories of late nights around the campfire, silly songs and skits, canoeing down the Allegheny and spending the night on an island during a giant thunderstorm, mass producing s'mores, hours spent trying to think of indoor fun during summer rain, and meaningful devotions. 

So my first "life lesson" for myself is that memories can be made (and often are) in ordinary places.  JBM is lovely, but it's no luxury seaside retreat or exotic adventure.  Let's be honest - it was on the rustic side of the scale, with thin foam mattresses and spiders in the shower. But that didn't keep us from loving it!  I was actually a little nervous when I took Eric to JBM for the first time, because I realized that I spoke so glowingly of camp that he might be expecting more than what first meets the eye. I love to travel and I've done my share of foreign traveling, so I think I'm tempted to dream of the day when we can again go on foreign adventures or lounge on a pristine beach.  But in the meantime, precious memories can and will be made in the backyard; at the park; on the shores of Lake Erie.  I don't want to overlook these ordinary days and places in anticipation of something or somewhere "better" or "more exciting".

But, somehow, it’s more than the memories themselves that make JBM what it is to me. I also made friendships there that I still treasure today. It was an important time in my life. JBM was my first job, a place where I learned lots of new skills, from building a porch to belaying to planning and helping to lead a week of camp. In the process I learned a lot about responsibility, leadership, and decision making. I think foremost, JBM was a safe place; the first place outside my family where I experienced true community. High school can be (and sometimes was for me) a rough time on the self-esteem, but JBM was a place where I felt comfortable being myself; it helped me to come out of my shell. I had friends and mentors there who liked me for who I was, which in turn helped me to embrace who I was, quirks and all.  It epitomized the word "community". 

And so I've realized that JBM taught me the importance of creating community - friendship, acceptance, shared memories.  While my physical circumstances have changed and I no longer have weeks to spend in the woods with my friends, my desire (and others' too I suspect) is still to be connected to people: to live life together.  I want to be intentional about creating a true community in the midst of the places and people with whom I regularly interact. 

Those days and weeks of summer were seemingly endless. In fact, we often wished our time away – "how long until lights out?" or “only a few more hours until peace and quiet and a staff trip to Quaker Steak.” But soon enough, the week was gone, and then the summer. And even after the summer was over, there was the promise of another summer of fun. But like most good things, it came to an end. The responsibilities of a grown-up life came calling, and it was time to replace playing in the sun with internships and jobs.  And whaddya know - now I regret wishing those days away. I didn't know just how great of a thing I had.

But guess what? I do the same thing now!  I find myself counting the hours until bedtime, or until Friday, or until everyone is out of diapers.  Thankfully I'm more becoming more aware of this tendency and trying to break myself of it. I'm not trying to say that you should enjoy EVERY minute of EVERY day - life isn't all sunshine and puppy dogs. But when I actually stop and think about it, our summers at camp weren't all perfect either. There was plenty of rain, a little vomit, difficult campers, and poison ivy.  That barn in the picture above? I pretty much hated spending time in there, but we did nearly every day!  But in my mind, I remember my time at JBM with nothing but fondness.  I have a suspicion that the same will be true of this period of life. The sleeplessness, the messy house, and the out-of-control behavior will fade from my memory, and I will remember this as such a sweet period of time.  I must be getting slightly more wise in my old age (haha!) because I am trying to slow down and treasure those moments of sweetness as they happen - a toddler's chubby fingers in mine; deep belly laughs from both boys; the simple fun of playing a board game with a preschooler.  Because I know that one day I will wish I could return to these simpler days in the same way I'd like to revisit the days of JBM, I'm striving to enjoy them to the fullest right now. (Note that I said striving, not always successfully!) 

There is still a deep sadness within me that another generation will not grow up knowing the simple beauty and community of Joseph Badger Meadows, but I'm grateful for the memories I have and the lessons I've learned from this special place.

Whether you've been to JBM or not, I hope you can relate to something in this post. I'd love it if you'd leave a comment with your thoughts on your special place, or a favorite memory at JBM. 

PS In all seriousness, if you know of an organization in eastern Ohio or Western Pennsylvania that is looking to open a camp, let me know!  It's the prayer of my heart that JBM will continue as a place where kids and adults can experience fellowship and draw closer to God!

For Better or Worse

Today is Eric and my 8th wedding anniversary...or is it "Eric's and my"?  Okay, today is our 8th wedding anniversary! Haha.  

In Sunday school this week, we watched a video on family and marriage, and they interviewed a bunch of couples.  One of the questions they asked was "Did you know what you were saying yes to when you got married?".   The question was answered with a smile and a resounding "No" by most couples.  I was actually reflecting on the same thing last year on our anniversary.  Though we wholeheartedly meant our vows when we said them and went into our marriage knowing that not every day would be puppies and rainbows, we had no idea what the years would bring us.  I never would have guessed that in five years, we would go from this:

to this:

(By the way, both were unusually gorgeous days, Pittsburgh weather-wise!)

I hesitate in categorizing Joy's life as "worse," as there was definitely good that came out of her short existence, but I also feel pretty safe in saying that it's hard to categorize the death of a child as "better."   [Of course, I'm not suggesting that we're the only ones to experience the "worse" part of "for better or for worse."  Just thinking of a close circle of friends, I can think or couples who have faced infertility, cancer, the death of a parent, and a devastating house fire.  I'm sure none of those couples stood at the altar and imagined those difficulties in the first decade of marriage.]

Though we had no idea what the future held when we said "I do," I'm glad that Eric has been the one to walk with me through this.  I've read that men and women tend to grieve quite differently, and that has been true for us.  Of course, our journey has not been without its bumps, but I think we have complemented each other well as we have processed our loss.  I tend to be more introspective and quiet (though this blog certainly implies otherwise!) while Eric is able to compartmentalize things (in a good way!) and is much more willing to engage others in discussion about our situation.    He truly was a solid rock for me as I dealt with the daily reality of carrying a child that we knew would not live.  Most importantly, his firm conviction of and reliance upon God's sovereignty even in the midst of our difficult situation helped me to cling to those same truths even when they didn't match my emotional state at the time. 

So, happy anniversary, my dear. I have no idea what other "better and worse"s (wow, this post is full of questionable grammar!) our future will bring, but I'm glad we will weather them together.