Strengthen the faint-hearted

The months before Joy's diagnosis were a time of transition for our family. We had recently left the church where we met and got married and where I had attended for 10 years, and had begun attending a smaller church closer to home.  Eric's reasons for leaving were largely theological, while I was seeking a local community of moms.  (I always joke that this makes Eric sound super-spiritual and me pretty shallow, but it is what it is!)  I had plenty of friends, but many of my friends were either too far away to get together for an hour or two to play and visit, or were just in a different stage of life.  After over a year of being a stay at home mom, I was feeling the need to connect with other SAHMs.

I had been invited to join a Tuesday morning Bible study at our new church.  I really wanted to join, but had a previous commitment, so I deferred.  I was re-invited just as my previous Tuesday commitment was ending, and so I cautiously joined. My introvert personality tempted me to withdraw on a day-to-day basis after such a difficult life event, but there was a part of me that was anxious for community.  So it was with mixed emotions that I joined the group. At this point, I had known about Joy's diagnosis for a few months - it was about halfway between her diagnosis and her birth.

As someone who is generally self-sufficient and prefers to keep her emotions under control, it was a vulnerable time. But these ladies were so generous, kind, and gentle with me.  I know it sounds cheesy, but I truly believe that these new friendships were a gift from God.  I had amazing support from family and other friends as I carried Joy, but there is something unique about the daily, ordinary encouragement I experienced from these new friends.  In many ways, it was remarkably unremarkable - play dates at the park, conversations around the kitchen table as our kids snacked.  But these moments remain vivid in my mind, and mean more to me, both then and now, than my friends may have realized.  Looking back on it, it serves as a reminder to me how just being real and being present to other can be a big deal, even if it doesn't seem like it at the time. 

I am grateful for all the people in my life, both then and now, who weren't afraid to mention Joy's name or to ask how I was doing (and mean it).  I am often guilty of being scared of saying the wrong thing and opting to say nothing instead, and I know many others feel the same.  And yes, sometimes people did say things that weren't all that helpful (just being honest here!). But at least from my perspective (particularly in the situation where the crisis was such a visible elephant in the room!), I much preferred that someone say something, even if it was awkward, than to say nothing at all.  It meant a lot for someone to take the risk of broaching the topic to me.

Just a month or two after I joined this Bible study, I was asked how I felt about having a prayer shower for Joy. I was nearly flabbergasted!  This was something I had read about in my hours of internet research and thought it was a lovely idea, but didn't feel comfortable asking my friends of family to do...it just seemed to much to ask.  And here were these ladies I had only known for a few months, who wanted to bless me in this way. It was the first, but certainly not the last time that the words of Ephesians 3:20 rang in my head: "Now to Him who is able to do far more abundantly beyond all that we ask or think..."

So a small group of gathered on a Saturday morning for a simple but beautiful celebration of Joy's life.  Knowing that Joy wouldn't have all the other celebrations of a typical child, such as birthday parties or a baptism, made this day that was all about her so special. There was delicious food, good conversation, and even little favors for the guests.  I received some lovely keepsakes - journals, a picture that hangs in our living room, etc.,  - that I still treasure, but the thought and love that was behind it are lovelier still.  And being that it was a prayer shower, there was a wonderful time of praying for me and for Joy and for the days to come. Here's the framed picture that the group got for me.  Interestingly, it now hands in our living room right where I took my monthly maternity pictures. 

Our pastor ends nearly every sermon with a benediction based on 1 Thessalonians 5 (I didn't know it was from there until I sat down to type this and looked it up!).  He says:

And now go out into the world in peace;

Be of good courage;

Render to no man evil for evil;

Strengthen the faint-hearted;

Support the weak;

Honor all men and women ["and babies" - my mental addition];

Love and serve the Lord;

Rejoicing in the power of the Holy Spirit

During this difficult season of my life, I felt like our church (and many others in our life) really lived out the charge given in that benediction. Those words nearly brought to tears each time I heard them while I was carrying Joy. Even now, three years later, during the benediction, I often think of this time in my life and the love shown to us.  In many times it was a sad, difficult period of our lives, but there were definite moments of sweetness, and the generosity and care of friends and family was one such bright spot.  "The church" often has a bad reputation in our modern culture, but I think that this was a wonderful example of the church being the church as God designed it.

So that's my charge to you who are reading this post  - Go out into the world and strengthen the faint-hearted; support the weak. While I can't guarantee that it will be this kind of life-changing experience for the recipient of your kindness, I think it's safe to say that more likely than not, it will be appreciated and noted by them in their time of difficulty.  It doesn't have to be something big to feel like something big to someone else.

Family of 4 photos, part ii

Check out the introduction to these pictures here.

By this point, someone was starting to get a little restless.  I don't know how funny I found it at the time, but looking back, I love these pictures!

This is the problem with outdoor photo shoots - so many interesting things to look at, point at, and discuss!

 

 We did finally get a GREAT picture on the bench! 

I love this one too!

Melissa (the photographer) wanted to take a few photos of just me.  I've seen some beautiful maternity pictures (and some horrible ones - haha!) but I'm just not that comfortable in front of the camera myself.  I did want to get a couple of just Joy and I, and I'm glad I did.  Do I look as awkward as I felt?!

She also wanted a few pictures of just Eric and I, which felt equally awkward for both of us!  Haha. Liam was really getting restless by this point, so this didn't last long. I was too afraid he would wander into the pond.

Don't worry - we're almost done. Just a few more family shots!  I had a big debate about buying the rights to all the photos, and now I'm so glad I did.  

 I really like this one - the reflection in the water and the fact that it's taken at a distance.

What a happy-go-lucky little man!

I think those are a perfect way to end - there goes our little family of 4, off into the sunset.

Family of 4 Photos, part i

During my research phase, I discovered (or rediscovered - I think I had heard of them before) Now I Lay Me Down to Sleep (NILMDTS), which "provides the gift of remembrance photography for parents suffering the loss of a baby".   They are a nonprofit that recruits and trains photographers who provide their services free of charge.  "Lucky" for us, we had time in advance to make arrangements with a NILMDTS photographer, so we contacted a few local NILMDTS photographers, and a lovely lady, Melissa Distel, agreed to take pictures of Joy after her birth.  I wanted to meet her before Joy's birth, and also wanted to get some family pictures, so we did a photo session with her at a local park.

I was worried that I would be uncomfortably huge at the end of my pregnancy, so we had the pictures taken at the end of April, about three months before I was due.  Thankfully, I didn't suffer from polyhydramnios and didn't get any larger than your average pregnant lady, so we could have waited a bit, but it's still clear I'm pregnant.

These pictures are so bittersweet to me.  We decided long before Joy's birth that we wouldn't take Liam to the hospital when she was born, unless she lived significantly longer than expected.  God willing, we have years and years to spend with Liam, but wanted to soak up the short time we had with our little girl with no distractions.  So most likely, these would be our only photos as a family of four.

We have a couple of these printed and displayed around our house, kind of an "Ebenezer" (a reminder of God's presence and help) to God's faithfulness to us in this time as well as a tribute to our daughter. But honestly, in looking back through all the pictures in preparation for this post, some of my favorites are ones we don't have out.  They're the candid ones of us interacting with Liam, of us just enjoying each other and being silly.  Because honestly, Liam was one big bright spot in the midst of the sadness of those months of carrying Joy.  Facing the prospect of losing one child, I was able to better appreciate the gift of the little firecracker I had already been given.  I honestly can't imagine carrying Joy without having her big brother there as a motivation to get my sad and tired behind off of the couch, as a reason and inspiration to smile and laugh through some very difficult moments.  It's hard to wallow in misery when you have a 2 year old to entertain and to entertain you. 

There's a lot of these, so I'll probably spread them over two posts.  Enjoy!

 Liam was at such a ham stage at this age. He kept lifting up his shirt to get a laugh!

 He was also very distracted by planes, cars, people, you name it.

Progress Pictures

With Liam, I was really good at taking monthly(ish) pictures of my growing belly.  I wasn't quite as good with Joy, and poor Noah, well, I think he has two.  So here she grows:

17 weeks, 1 week before we found out about Joy's diagnosis:

 23 weeks:

35 weeks:

 41 weeks:

 42 weeks:  (I feel like "42 weeks pregnant" is not a statement that anyone should ever have to make.  More on that later!  So if I look huge and uncomfortable and tired, you know why. And if I look like I just rolled out of bed, it's because I did. This picture was taken as we were getting ready to leave for the hospital on the day of Joy's birth.)

So there you have it!

waiting game

So, the decision had been made...and thus began a time of waiting.  I don't know about you, but I'm not a good waiter, generally speaking.  I felt kind of like a ticking time bomb.  I guess every expectant mother feels that to a certain extent, but I just felt like I was counting down to a day I both dreaded and anticipated.  

But meanwhile, I had months to live, day by day.  I did a lot of research and reading, both on the internet and in books.  Someday, I plan to make a post about some good resources I found. In this situation where there wasn't much I could control, I felt empowered by knowing as much as possible.  There were many times that I found myself telling the midwives or nurses or other medical professionals what I had garnered from other mothers of anencephalic babies. I am so grateful for the support and resources that I found online.  While technology does have its drawbacks, it also has some amazing benefits, and being connected with moms across the world who have walked this unusual and very specific path was certainly one benefit. 

There were other things we did to prepare as well. We had family pictures taken - our only official pictures as a little family of four.  We took Joy on a family vacation to the beach, and she came to Niagara Falls with us on our 5th anniversary trip. She even came on a girls' weekend to celebrate our 10th anniversary of college graduation. Some families who are carrying a baby with a fatal diagnosis really go over the top in documenting their baby's life or doing special and elaborate things with him or her before he or she was born...kind of equivalent to those detailed, Pinterest-inspired birthday parties.  I'm not criticizing those people (after all, it's the only time you have with this little one, so if you want to go all out, go for it!), but that wasn't really my style.  However, I did want to mark the special times that we had with Joy before she was born. 

If you know me, you know I LOVE pictures. I have zillions of pictures of travels and our boys and my life, and I usually share them quite freely.  However, I haven't shared many pictures of my pregnancy with Joy. Any pictures that were public from that period are usually just of Liam.  It's not because I was ashamed of Joy or of my pregnancy, but it was just hard.  I didn't mind talking about her or the situation, but breaking the news to people was almost unbearable.  The words were difficult to get out, but seeing people's reactions was even harder. It often put you in this weird situation of having to console them; to say "oh, it's okay," when it clearly wasn't.  Every time I told someone about Joy's diagnosis, it was almost as if I was receiving the news all over again myself. 

So I adopted a two pronged plan for the inevitable questions any pregnant woman receives.  If it was a stranger in a store or someone I was unlikely to see again, I usually just answered their question with the truth, but not the whole truth.  "When are you due?"  "July."  "Do you know what you're having?" "A girl."  People must have thought I was the least excited pregnant lady ever, but oh well.  See? Not so brave!  Of course, if it was someone who I knew I would see again, I would tell the truth about Joy's short life.  (I'll admit that my strategy failed once and someone I thought I would not see again I did...over and over.  Oops! But for the most part, my plan worked to save the emotional roller coaster.) 

We were new to our church when we found out about Joy, so it was a strange combination of meeting people and having this sad news to deliver.  We were really blessed by our church's children's minister, who graciously offered to pass the news along in the church so that those we came in contact with would already know about our situation.  Eric was also able to talk about Joy and her diagnosis in a slightly less emotional way than I was, so he usually accepted the task of breaking the news to people for me.  I'm very grateful to these two, and thanks to their help, I didn't actually have to pronounce "I'm carrying a baby who won't live" to many people. 

All that to say, though I documented my pregnancy, I didn't share the pictures because I wasn't ready for an onslaught of questions about this baby from people who didn't know what was going on.  But lucky you - you know the whole story, so I'd love to share a few pictures from that time with you.  Plus, I'm hoping to print this blog out as "Joy's Story" when it's done, and I'd love it to have some visuals.  Oh, and excuse my face.  The old wive's tale that "girls steal your beauty" is true - my face was a broken-out mess the whole time I was pregnant with Joy!

This was at my parents' house, shortly after the diagnosis.  I feel like my smile doesn't quite reach my eyes!

Happy birthday to my mom and I!

Eric and I took a 5th anniversary trip to Niagara Falls. It was a great time for us to get away and relax and spend some time processing but also some time escaping! 

Liam (and Joy's!) first Memorial Day parade. Liam LOVED it. 

We took a semi-impromptu trip to Virginia Beach, just the 4 of us.  Traveling with a toddler is challenging, but sun and sand and a change of scenery was enjoyable for all of us! 

Camping was a big tradition in my family growing up.  It was fun to take Liam camping for the day with my parents, and even Joy got to join in the fun. 

The zoo! 

This is one of my all-time favorites.  Liam turned two shortly before Joy was born, so he was kind of oblivious about the whole thing.  I guess because my stomach just slowly got bigger, he didn't really question the whole thing.  He certainly did enjoy using my stomach as a gigantic mountain for his vehicles.    I remember thinking that this was as close as playing together as this brother and sister would get this side of heaven, and this picture perfectly captures it!