Joy is 9!

August 3...the date looms large every year. It's a strange day - celebrating a birthday for a person who is not there to celebrate with you. Nothing seems quite right, but we do our best to honor Joy in small ways throughout the day.

It is so interesting and heart wrenching to explain Joy's life to each child as they grow older and understand more each year, yet it makes my mama heart happy to see how each member of our family remembers her and celebrates her more in their own way. One of the boys shyly asked for more details of what was wrong with Joy, and after I gave him a basic explanation, he told me it made him sad and he didn't really want to think about that anymore. And I totally agree and empathize with him!

Kathryn has gradually been coming to an understanding that she has a big sister in this nebulous place called heaven. We were painting rocks for Joy this morning and Kathryn sweetly inquired what Joy's favorite color is. I asked her what she thought it would be, and she said "maybe green, like you and me?" I approve!

Joy would be nine years old this year. As with my living children, I find this hard to believe. The passage of time is something I have a hard time comprehending; how it can be simultaneously so fast and so slow.

I am confident that God has formed our family and experience in just the way He wants it for our good and His glory, yet it is always tempting to think of what might have been. I feel like I post these thoughts every year, but I wonder what a 9 year old Joy would be like - artistic or a dancer or maybe a hockey player like her brothers? A bookworm or outgoing or a bit of all of these traits? She had red curly hair at birth - would it still be curly? How would she interact with her siblings? We seem to know a multitude of girls around the same age as Joy, which was difficult years ago, but is now more of a blessing, to see a child her age an imagine how tall she would be and what she might act like. As with so many things, it is all so bittersweet!

In a fun twist, this is the first year since her birth that the Olympics have been on her birthday. In 2012, I remember watching the Olympics during labor and thinking that I didn't know who was working harder - those athletes or me! This year I am glad to relax and watch the games without labor pains!

As has become our tradition, we will be having a book drive in Joy's memory - I will make a separate post with those details later today.

Please excuse the stream-of-consciousness nature of this post, and thanks for letting me remember our girl on her big day! As always, I am grateful for the brief time we had with Joy and look forward to being reunited with her some day.

Happy 8th birthday, Joy!

If there's anything Joy's life has taught me, it is to hold my plans loosely. I am still in work-in-progress in this area, but Joy's birthday celebration yesterday was a perfect example of this. It ended up being a lovely day of celebration, just slightly different than I had anticipated.  

The day started with my (newly) routine 6 a.m. walk. The sky was amazing (though I was hoping the old adage of "red sky in morning, sailor's warning" wasn't true). 

After that, I didn't have much of a plan for the day. My fallback was to let the kids watch too much TV so that I could kind of zone out. But this didn't make me feel like a super stellar parent (though there are certainly circumstances where I do this with no guilt).  I then remembered how we had found a painted rock at the cemetery last year and that Noah had not one but TWO partially used rock painting kits.  So I proposed that we paint rocks - some to keep, and some to hide. Two thirds of my kids were thrilled at this idea, and so off we went.  Liam even humored me by volunteering to paint a rock too.

While it's hard to imagine exactly what life with an 8 year old girl would be like, I figure that messy craft projects involving glitter are a safe bet! Here's the aftermath:

And our finished products- can you guess whose is whose?  (And if anyone knows Morse code that might be a hint. ha!)

Our family's tradition is to eat pizza and dessert (lately donuts) at Joy's grave.  We have lots of pizza lately and I saw an ad for Aladdin's which sounded amazing. Usually the food choice is up to the birthday person, but Joy delegated me as her official proxy so I made the executive decision to switch pizza up for Middle Eastern.  Surprisingly, everyone enjoyed it! 

We were also looking forward to our donuts, but when I went online to order at 2:45, I saw that they close at 3 on Mondays. Whomp whomp. Thankfully our gang is not super particular about treats as long as they are sugary, so Eric saved the day by picking up a pretty cookie cake on his way home. 

The littler kids and I placed our rocks, and then we took our normal walk around the cemetery (it really is a pretty place) and hid the rest of our rocks and gave thanks for the cooler breezy day (and lack of rain!).

And that was our birthday celebration - a little different than planned, but very nice overall.  It's interesting to the kids' perceptions of the day changes from year to year.  Up until recently, Noah and Liam kept telling Kathryn that she had a sister in heaven named Joy, and she was adamant that she didn't...which is totally reasonable for a 2 year old.  But with all the "Joy" talk lately, she's starting to accept the idea.  I heard her telling Noah after we got home that she has a baby sister called "Joyce" (getting a little confused with the name of her great Aunt perhaps?) and that she made a rock for her. It's kind of confusing for even me - because in some ways Joy will always be a baby, but in reality, she is not in any way Kathryn's "little" sister.

 
It was really heartwarming to see the effort Noah put into making a "present" for Joy and how excited he was to give it "to her".  He loves to make cards and gifts and I was glad to have this outlet for him.

And Liam as always, was thinking and questioning. He insightfully asked if Noah would exist if Joy had lived.  And while it is certainly possible, it's also not likely that we would have planned to have 2 children 16 months apart. This led to an interesting conversation about how we can plan and scheme and dram, but God's plans ultimately prevail, and how we trust that is better in the long run. And also how it is okay to be sad about the fact that Joy is not here with us any more, yet rejoice because in a strange way, her death gave us Noah.   

(Please note my "choose Joy" shirt!)

In fact, his question is one I think about often.  I often ponder what Joy would be like and what it would be like to have an 8 year old daughter and what our family dynamic would be, but the truth is that we can never really know. Had Joy lived, would Noah be here? Would Kathryn?  It's kind of like a twisted time travel novel when you start thinking about it.  So while it is fun to indulge my imagination and to feel tenderness when I see an 8 year old girl playing tenderly with a younger sister and picture my two red headed girls in the ir place, I try to rest in the goodness that God has given us in our 3 earthly children and the promise that Joy is with her heavenly Father.

After the kids were in bed, Eric and I usually look at Joy's pictures and listen to her memorial service.  I was really dragging my feet starting the process, and was fine as we looked at maternity pictures. But as we started to look at pictures of her and her birth, it was too much for me. We had such a peaceful, dare I say, fun day, and at that moment, those pictures were heartbreaking.  After celebrating her place in our family and in our memory, I couldn't bear to look at her obviously broken body. Eric, being the wise and kind husband that he is, sagely pointed out that just because it was our tradition, we didn't have to look at the pictures if we didn't want to and that perhaps it was better to save them for another, less emotionally-charged day.  And he was right! (See Eric, it's in writing. :) ) It is tempting to feel a slave to tradition or what I feel I "should" do to honor Joy, but we truly had a day of celebrating her life yesterday, and it was perfect.   So I will end this post the same way we ended our evening - with a few pictures of her 42 weeks in utero, happy and safe and loved! 

This first one is before we knew how short her life would be, the rest are after her diagnosis. The profile by the wall picture are our classic pregnancy documentation photo.

The night before I was induced! Can you tell I'm tired of being pregnant?

Happy birthday, Joy! 



PS If you missed it, for the FIFTH year in a row, we are having a birthday book drive for Joy's birthday. In the past four years, YOU, Joy's family and friends (along with a generous match from Usborne Books & More) have donated over $5,000 of beautiful brand new books to Beverly's Birthdays, which is a Pittsburgh charity that provides birthday parties and gifts for local children in need. Being a family of bookworms, this has been a perfect way to celebrate and remember Joy and pay it forward on her birthday. Five thousand dollars of books - that is incredible and makes me tear up a little!

So please consider this your official invitation to participate in Joy's Fifth annual Birthday Book Bash. All donations are matched at 65% so that every dollar donated results in $1.65 of books to help celebrate Pittsburgh area children's birthdays. Ways to participate:

- easiest way: https://www.paypal.com/paypalme/bethsalesky

- the cheapest way (no fees): PayPal me at beth.salesky@gmail.com (make sure to choose friends and family)

- the old-fashioned way: contact me and let me know if you'd like to mail me a check

As it is Joy's 8th birthday, I'd love it if we can raise at least $800 to donate to Beverly's Birthdays.

Reflections on Joy's 7th birthday

Happy 7th birthday, Joy!  Just as I would say about any of my living children, it's hard to believe Joy is 7.  As is to be expected, the initial shocking pain of her loss has faded, but I remember her in many small ways nearly daily.  Every time someone asks me how many children I have, I pause before answering; on certain occasions I say "2 boys and girl at home and a daughter in heaven".  In other situations, I simply reply 3, and Liam pipes up (ever the detailed one), "well, actually, there's 4."  Or strangers in the grocery store comment on our strong red headed genes and I think "yes, we're not just 3 for 3 on the red hair, we're 4 for 4".  And I always hesitate before referring to K as the "3rd child" (usually in reference to her sleep schedule, as in "poor 3rd child just has to go with the flow")...she's not the 3rd child, although she is being raised as the 3rd. I usually default to "the youngest".

And of course as her birthday approaches, she has been on my mind a lot. Children's birthdays (particularly in this age of social media) provide such an opportunity to reflect on a person, on their personality and interests; to perhaps pick out a few fun pictures from the past year or from their baby days to share.  My oldest son's birthday is just a few days before Joy's, so this process is clear in my mind, and makes a stark juxtaposition with this day.

When your child is in heaven and has been since birth, it's obviously a bittersweet day.  While I know she was a redhead, I've often wondered in my mind what Joy would have been like - what would that snapshot of her say?   Until now, I've mentally combined her brother's traits - perhaps a creative bookworm or an analytical athlete?  Now having another little girl in our family, this wondering is slightly different and perhaps more bittersweet (yep, I used that word twice in this paragraph but it's one of my favorite words!). As I watch little K trail me around the house, imitating all my daily duties, observe her carefully feeding her baby (creatively named Baby) or as I scrape her scraggly hair into little red pigtails, it makes more real what having a little GIRL in the house would be like.  We will never know, this side of heaven, but based on the rest of our family, I think it's safe to say that Joy would be smart and stubborn, and based on many other 7 year old girls I know, she would be doting on her baby sister.

Although Joy is not here to show us all what she is like,  her life has left a pretty big legacy.  As I've posted here before, she has participated in organ donation and several research papers.  But more importantly, she has changed her family and the world around her.  In some ways, it's hard to even quantify how she has changed me personally - she has shaped me as a mother as much as my living children have.  After all, she has been part of my life for 7.5 of the 9 years I have been a mom.  I know she has taught me not to take any of my children for granted - for better or worse, I am aware of just how fragile life is.   I'm sure Joy's brief life has changed me and my parenting in ways I am not aware of.  She has also made me grow and change in my faith, helped me to contemplate eternity and heaven, and forced me to become more vulnerable in many ways.

Joy also has left a legacy in allowing us to be sensitive to other families who have lost pregnancies or babies at various stages.  When I received my poor prenatal diagnosis, I didn't know of any friends that had had a pregnancy loss.  I found a good support group online, and had wonderful support from family and friends, but neither of those are quite the same as having "real life" friends who could relate to my experience.  Unfortunately, we have had the privilege of walking through pregnancy and infant loss with several friends since them. (Actually, when I stopped to count them up, the total was over a dozen...which makes me incredibly sad to think of all that sorrow, yet happy to think of all those babies partying in heaven together. (and no, I'm sure that is not exactly theologically correct, just as all these parenthetical remarks are probably not grammatically correct!))  Some were already close friends, others were local moms who became friends due to our shared loss.  I am not eloquent and often don't know the words to say, but have sought to minister well to these moms and families by being available as a listening ear and trying to remember their little ones' special dates. (I'm not trying to toot my own horn by saying all this, merely sharing how God has answered our prayer to accomplish good through Joy's short life.)

Last but not least, for the past three years, I have organized a birthday book drive for Joy's birthday.  In those three years, Joy's family and friends (along with a generous match from Usborne Books & More) have donated over $4,000 of beautiful brand new books to Beverly's Birthdays, which is a Pittsburgh charity that provides birthday parties and gifts for local children in need. Being a family of bookworms, this has been a perfect way to celebrate and remember Joy and pay it forward on her birthday.

So for the fourth year in a row, I'd invite you to participate in Joy's Birthday Book Bash.  All donations are matched at 65% so that every dollar donated results in $1.65 of books to help celebrate Pittsburgh area children's birthdays.  The easiest way to participate is to PayPal me at beth.salesky@gmail.com (make sure to choose friends and family so there are no fees), but if you don't do PayPal and want to participate, feel free to contact me and we can work something out.  As it is Joy's 7th birthday, I'd love it if we can raise at least $700 to donate to Beverly's Birthdays.  (And if you have book shopping of your own to do, 65% of your book purchase at this link will also be matched.  I'm not actively selling Usborne any more, but a good friend (providentially also named Joy) is helping me out with this book drive and would be happy to help you find the perfect book.)

Happy birthday, sweet girl!

Promise of a Good Outcome

I've been mulling over this blog post for a long time...like years!  I've hesitated to write it, because I don't want it to come off as trite or as religious gobbledygook.  So please read with the following in mind: 1) I truly do believe every word of this, but 2) this is hard to hear/read/accept when you are deep in grief.  So please don't hit your grieving friend over the head with phrases like "this is God's will" or "God will work this to good".  It is (in this fallen world) and He will (eventually) but it is also right to grieve over the brokenness of this world as manifested in people we love leaving this earth too soon.  So here goes...

Throughout college and young adulthood, I often said I would gladly follow God’s will, if only he would give me a banner in the sky letting me know just exactly what His will was.  I still haven't gotten that banner in the sky, but a day and half after Joy’s birth was pretty much as close as it gets.  Our pastor was in the middle of a sermon series about God's promises.  (As a side note, it was inspired by that year's VBS theme - Standing on the Promises of God. Our church rotates themes every 6 years, so that was again this year's VBS theme...part of what made me decide it was finally time to publish this post.  Those 6 years certainly passed quickly!)

Anyway, the sermon was entitled “Promise of a Good Outcome” and was based on Romans 8:28, which says “all things work together for good for those who love the Lord and are called according to his purpose”.   Now keep in mind that this sermon series was planned at least a couple of months in advance, and Joy was  born two weeks after her due date, so this was not orchestrated by human hands. But "somehow," this happened to be the topic less than two days after Joy's birth.  Here is a link to the audio of the sermon (and I'd love it if you listened to it - it's really good!), but I'm going to quote/summarize parts of it here.

At the beginning of the sermon, Rick announced Joy’s birth and death to the congregation using these words:  “[Explaining first that he had been on vacation and had just arrived back in the office on Saturday afternoon] …the first email that I received was of the announcement of the birth of the newest little one in our congregation – Joy Salesky – who lived for 15 minutes and then she went to be with the Lord. We knew that this would most assuredly be the outcome. Beth and Eric and I had conversations months ago about what was the appropriate actions to take as she was given a number of different options, as you can imagine. But we knew then that if Joy lived for 15 minutes outside of the womb, she would have at least lived for 9 months and 15 minutes. And so Beth and Eric decided that the most loving thing they could do was to provide Joy a safe and a warm place in which to live her 9 months. And then as was expected, after she was delivered she was taken home into eternity.  I have to tell you that causes one to reflect on the points that one might make on the text ‘we know that all things work together for good’…and so since 4:30 yesterday afternoon I’ve been rethinking and reshuffling and making not one change.  And so I share with you these things that help us to wrap our arms around this great promise – ‘all things work together for good for those that love God and are called according to His purposes.”

I didn’t hear this sermon until a few weeks later when it was posted on our church’s website. I hope you will agree that though it’s not quite a banner in the sky, it’s pretty hard to ignore a sermon that has your name in the beginning and goes on to say, “yep, this applies even to you, even in these circumstances.”  Because I’ll admit, the message of this sermon was hard to swallow at such an emotional time.  How could what we had gone through possibly be construed as “good”?   Here's what Rev. Wolling went on to say:

1. Good must be defined by the one is good – God alone is good and he is the one who defines what the good is.  Good is not equated necessarily with what I want or what I or others think I deserve and is not equated with my or others sense of fairness.  We must decide if we approach life with a view from above or view from below - the view from below defines good from my perspective; the view from above begins with God himself. 
2. All that is good declares the glory of God.
3. God’s good for us has its source in His divine sovereignty.  God’s plans are greater than just for us and our lives and perhaps what we’re experiencing is so that God may do His sovereign work in someone else’s life.
4. God’s goodness is over everything all the time – good and bad. 
5. God’s goodness for us often flows out of situations that seem anything but good  Sometimes the simplest, best and most faithful answer we can give to the question“How can any good come from this?” is “God only knows”.   God only knows…but he does know!
6. The ultimate good God has for us is making us more in His image.
7. The cross is the declaration of God’s desire to give us His best – restoration to fellowship with God.
8. The good in a circumstance or situation may be a change in us.
9. Seeing the good in certain things often requires the eyes of faith. 
10. Seeing the good may not happen until eternity: “we may never know” may be the most profound and faithful answer. For now we see as in a glass dimly – we only know in part.

He said all of this much more eloquently, but that's the Cliff Note version for you. 

As I alluded to in the introduction, I’ll admit that sometimes, emotionally, these truths don’t make me feel any better!  In these times, I fall back to the truth that “We may not know or understand the good in a situation until eternity.  Sometimes ‘God only knows’ may be the simplest and best explanation”. I’ve learned that it’s okay not to understand what’s happening.  You've probably heard the analogy of looking at the back of a needlepoint - it's messy and ugly and knotted with dark threads running every which way - it doesn't make sense until you see the other side.  And it's okay to be sad and grief-filled and even angry - this is a broken world in which we reside.

At other times, I realize the truth that the ultimate good in a situation may come from a change in us; from making us more into His image, or even for the change in someone else’s life.  Now 6 years removed (today!) from Joy's birth, I can see ways, small and large, that God is working our loss to His good.  It's hard to articulate all of them, but among other things, Eric and I have been able to support other families going through pregnancy and infant loss, we've grown deeper in our faith, and have come to appreciate even more how precious the lives of our other 3 children (and children in general) are.

So while these words may not bring immediate warm fuzzy feelings to one who is deep in grief (or deep in the muck of everyday "stuff"), they do bring the ultimate and only real comfort and hope.

I pray that these thoughts are a blessing to you in whatever season of life you are facing today, however good or not good it appears on the surface.

Happy birthday, sweet girl!

PS One other small way God is using Joy's life to good is through our annual book drive for Beverly's Birthdays.  If you're interested in donating this year, you can do so here. All donations will be matched 50% by Usborne and 25% by me so every $1 donated is $1.75 in books to help homeless and underprivileged children celebrate their birthdays!

A time to wait

It's amazing how different it can be to know something intellectually and to experience it firsthand. You can talk about the taste and texture of chocolate until you're blue in the face, but nothing beats a bite of gooey warm chocolate cake. You can see pictures of the Grand Canyon, but you haven't experienced its grandeur until you've stood there at the edge yourself. Similarly, I've believed for a long time that this earth and mankind itself is damaged by the effects of sin and the fall. However, seeing that wrongness firsthand in the literal brokenness of my daughter was entirely different. She was beautiful, but there's no denying that she was not as she was originally intended to be. This has become a vivid picture to me of how sin has marred the original beauty of creation.

Genesis 3:16 describes one of the consequences as sinfulness in the following way: "To the woman He said, "I will greatly multiply your pain in childbirth, In pain you will bring forth children." (NASB).  This is one of those verses that didn't have much meaning to me personally as a child and  teenager reading the Bible.  Even as an adult, I kind of took it as face value as a literal painful labor and thought it was a little odd - why such a specific way of punishment?  But after experiencing Joy's life and death, I began to delve a little deeper. I'm no theologian (I leave that to my husband!) but I think it is evident that the effects of sin and the fall are far more than excruciating contractions.  I would argue that things like miscarriage and pregnancy loss are definitely painful parts of childbearing. What about birth defects? Premature birth? Infertility? One could even say that unplanned singleness and the unfulfilled desire to have children are part of this tragic consequence.  I have walked along women who have experienced each of these situations and have seen the pain, both physical and emotional, these situations have caused in their lives.  So far from being a momentary pain, this "curse" of painful childbirth cuts deep into who we are as women and effects us physically, mentally, emotionally, and even spiritually. (Not to say that children and family are the ONLY parts of being a woman, but I think they are intrinsic, God-given desires for many women.)

So those first two paragraphs have been stewing around in my head for awhile, but I wasn't sure where I was going with it. It seemed a pretty incomplete and depressing place to leave it as is!  And then I began to think of the holidays and all their entrapments.  Beneath all the holly jolly of the season, Christmas and the grand lead-up to its arrival can be a difficult time for many people for various reasons.   And in my experience, it is a particularly difficult time for those who have experienced "pain in childbirth" in any of its various forms.  At our house, it is seeing ornaments bearing our daughter's name on the tree, but knowing there will be no girly presents under the tree.  It is seeing the infant at the live nativity scene, thinking of what might have been. Just knowing that someone is missing who was much planned for and loved.  For so many women and families, the pain of loss is intensified during this merry season in various ways.

May I suggest that this underlying sadness is not only permissible but particularly appropriate at this time of year? In an under-celebrated way, this pain and the greater story around it truly is the reason for the season. It serves as a vivid reminder to our hearts that all is not as it should be; that despite the gifts and the food and the fun, things are not all as they were meant to be. As I'm sure you know, that baby in a manger grows up to be the savior of us all! The period of four weeks before Christmas is commonly celebrated as "Advent". Advent is commonly defined as "the arrival of a notable thing, person, event." So while we celebrate the first Advent of Christ in the manger, our hearts are more deeply longing for his second Advent; when the baby who we celebrate at Christmas comes once and for all to ultimately relieve the curse of pain in childbearing. What beautiful imagery! 

I recently discovered a CD entitled "Waiting Songs" by Rain for Roots. I love the whole thing and its focus on the waiting period of Advent. But one particular song has really gotten under my skin (in a good way). It's entitled "Mary Consoles Eve," and as the title implies, Mary is talking to Eve. I'd encourage you to listen to it, but here's an excerpt of the lyrics in case you don't:

"Eve, it's Mary, now I'm a mother too

The child I carry a promise coming true

This babe comes to save us from our sins

A servant king his kingdom without end

Almost not yet already

Almost not yet already

Almost not yet already

He comes to make his blessing flow

as far and wide as the curse is found 

He comes to make his blessing flow"

Of all mothers, Mary certainly experienced the curse of pain in childbearing - physical pain of traveling on a donkey or on foot while amazingly pregnant and giving birth in an inhospitable place surrounded by animals.  But what of the emotional pain of her pregnancy - the whispered rumors and gossip surrounding an unplanned and out-of-wedlock pregnancy?   But Mary knew the truth of the situation; she understood the promise of the babe she was carrying.  God is a master story-weaver - how better to break the curse of the pain of childbirth than by beginning with the birth of a baby?!  

So this Christmas season, whether your pain is one related to the various pains of childbirth or if it is another result of the fall (because really, isn't that the source of all pain?), I pray that you embrace it.  Yes, have your celebrations and enjoy your family and the carols and the merrymaking.  But take time to remember that the ultimate culmination of Advent is not Christmas morning, but Christ's second coming, when the curse will be broken and "He will wipe every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Revelation 21:4, ESV). What a beautiful promise of our ultimate hope - redemption and restoration! 

Merry Christmas...and happy waiting!

The Ups and Downs of Organ Donation

I will preface this post with these statements - this part of Joy's life is one of the few parts that I would change if I could (I mean besides the obvious fact of her living longer). I am glad that we were able to donate her organs, but there are parts of this story that did NOT go the way I had planned. I am coming to terms with that, but just thought I'd say that at the outset.

One of our big desires for Joy was that she be able to donate her organs. Organ donation is very important in our family - my uncle has received two kidney transplants, one of which was donated my aunt (his wife). Of course we didn't choose to carry Joy just so that she could donate her organs, but I did want every bit of her life to be filled with purpose. What better way than a physical part of her continuing to live on in someone else?

When we had our initial meeting with the neonatologist and palliative care specialist, they weren't aware of any opportunities for organ donation.  I pressed the issue a little (politely of course) and they agreed to look into it for us. I knew that the regulations varied state by state, but that there should be *something* we could donate. Eventually, they put me in touch with the Donor Liaison at CORE (Center for Organ Recovery and Education), the local organization that handles such things.  Our Liaison, whom I will call Alice, was wonderful. She had done research and had a couple of options to present to us.  It was a little confusing because the requirements for babies are constantly changing depending on supply and demand.   There was a possibility that she would be able to donate her heart valves if she was big enough. I didn't hold out much hope there because Liam had barely met the size requirement at full term with a fully developed head. 

Alice also told us about a new program through a research company called Cytonet (which apparently has been recently acquired by Promethera) that was extracting liver cells from donated organs and transplanting them in livers of children who were ill with a particular kidney disease to boost their liver's health until a liver transplant match could be made.  The cells from one baby can be placed in up to three babies! Or such is my extremely unscientific understanding of it.  The only requirement of that donation was that Joy be born alive.  Of course, to donate the liver cells, the liver had to be "harvested" (a word I really don't like) within two hours of her passing. This would limit the time we had with her, but after thinking and praying about it, we decided this was the right decision. No amount of time with her would be "enough" but we thought that two hours would be plenty for us to hold her and have our families meet her.  And of course she could come back to us after her surgery.  We let Alice know of our decision, also knowing that we could change our minds at any time. 

Although Joy didn't live long, the fact that she was born with a beating heart was enough to qualify her for the liver cell donation. I've already written about the time we spent with her after birth and her being transported to the surgery, so I'll just put an excerpt here:

"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 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."

So the donation itself was hard for me, but we anxiously awaited news of the recipients of Joy's cells.  We got good news fairly quickly that they were able to harvest a good amount of cells and that they would be put in storage until a match could be found. After a few months, we followed up with Alice, and got this news: "the serologies (blood tests for different viruses) for her cells came back Cmv positive (not really all that uncommon), because of that they would typically infuse those cells into a baby who was already CMV positive (they could not go into a CMV negative baby because the babies are immunosuppressed and the virus would harm them). They did not have a CMV positive infant to infuse with the cells, so instead of not using the cells at all, they have used them to research the best way to infuse children with this type of cell therapy to increase their rate of survival.  Even though the cells did not go directly into another little one, Joy’s donation has be critical in improving the cell therapy process so that many, many more babies can benefit."

Honestly, this news was hard for me to take. Intellectually I know that this is an important part of research, but I wanted to have a face and a name (or two or three) to say "those babies are the ones my daughter helped."  Obviously there's nothing I can do about it except pray that many more babies will eventually benefit because of Joy’s donation.  

Our organ donation story did not stop there - as I posted about before, we were also featured as *the* case in a case study about neonatal organ donation. You can read more about that here. 

If you happen to be reading this and are in a similar position and are considering neonatal donation, I have a great resource for you.  An acquaintance of mine whom I met through an online anencephaly support group has a passion for education parents and the medical community about this very topic. She lost her son to anencephaly shortly after Joy was born and actually donated his whole body to research!  She has an amazing website called Purposeful Gift if you are interested in reading more. 

The spring after Joy's birth, we were invited to CORE's annual ceremony to recognize and thank donor families. We were excited to be included and looked forward to the event. Most of the event was lovely. I forget the details now, but know there were several speakers (both donor and recipient families) and a big balloon release.  Afterwards, we were invited inside to eat lunch while we watched a slide show remembering each of the year's donors. Each donor family had submitted a picture and some brief information (a 15-20 word description, if I remember correctly) about their loved one and it was made into a slide show. They were in alphabetical order by last name, but only first names were shown on the screen.  So were never sure where we were in the alphabet, but I kept my eyes glued to the screen for 20 minutes waiting for the S's to arrive to see my baby girl. All of a sudden, the music stopped and the show was over. And no Joy. I could barely look up to meet my family's questioning eyes. When I did, I just burst into tears. We happened to find Alice, who found one of the organizers, to figure out what happened. No one was really sure. They knew her picture and slide had been included in an earlier draft because several people remember seeing the picture of her little feet.  But somehow it did not make it to the final presentation. It was an honest mistake and they did apologize, but it really upset me.  I liken it to your child's name being skipped at high school graduation.  Except in that case he would be there to jump up and down and say "hey! you forgot me!".  I was so excited for Joy's one moment in the sun, and it didn't happen.   Apparently it still upsets me as I'm tearing up as I'm typing this.   We did eventually get a DVD of the revised presentation, so I snapped a picture of her slide to give Joy her public-ish recognition now.

  

One last thing that was a lovely part of the event was that each family was invited to make a quilt square to honor their loved one. This square is sewn into a quilt that travels around on display to promote organ donation awareness.  On my own, I'm sure the square would have been quite sad, but thankfully my mom and aunt are amazing seamstresses. They used my aunt's sewing machine to embroider an actual (enlarged) copy of Joy's footprints onto our square.  And being the thoughtful ladies they are, they made a copy for and framed it.  Here is her square, and then her square sewn into the quilt. Thankfully the square didn't get lost in the shuffle (oooh...does that sound bitter? haha!) 

So that is our woeful tale of organ donation.  Although it didn't go quite as I imagined, I am glad that we made the decisions that we did and gave our sweet girl the opportunity to be an organ donor! 

"Celebrating" Pregnancy and Infant Loss Remembrance Day

Today, October 15, is a day nationally recognized as Pregnancy and Infant Loss Remembrance Day. Whew - that's a mouthful!  

We actually didn't do anything special to celebrate, not even participating in the "wave of light" at 7 pm as I had planned.  At first, I felt kind of guilty.  But then I as I thought about it, I realized that we had celebrated the day in a perfect way.  What did we do?  We spent a beautiful autumn day at the pumpkin patch and corn maze.  We laughed, enjoyed being together, and had a really great time as a family.  Each of the boys picked a small pumpkin from the patch, which go perfectly with the little pumpkin I just got for Joy.

When I think about it, this is kind of how we try to remember and celebrate Joy in our daily lives.  And though he has plenty of faults, I am so proud of how Liam does this in such a natural way on a regular basis.  Any time there is a family based project at school, he always remembers and includes her - this week it was an ice cream cone that they added one paper scoop for each family member. Sure enough, Liam's cone had 5 scoops.  Whenever someone asks about how many kids we have, he is quick to include her (even sometimes when it is comical, like when we are paying for admission somewhere).  He proudly shows off pictures of "my baby sister" when new people come to our home. A few weeks ago, we were going to be near the cemetery where Joy is buried with some spare time. Liam repeatedly asked if we could go see Joy. We actually ended up taking our lunch there and having a beautiful picnic with Joy - all on the prompting of our sweet boy.  He is natural but genuine in the way he incorporates his sister's memory into our lives. 

We have a lovely little "Joy bear" made by Molly Bears in the exact weight Joy was when she was born.  She has a special place of honor on a shelf in our room, but always comes down to join us for family photos.  We just had the boys' picture taken this past week, and I love how gently they treated "her" and seeing how sweet the pictures turned out. 

Of course, having a stuffed bear in a picture in no way makes up for the not having a sweet (or spicy) 4 year old red head in that picture.  But it truly warms my heart to see how these two are so proud and happy to remember their baby sister in this day and on a regular basis.

There is definitely a time and place to take a moment to be silent and remember our little ones who are gone to soon, and I will try to light my candle next October 15.  However, I think the best way to remember these babies (either our own children or those of friends and family) is to live life well - full of *joy* and love with whomever God has placed around you; to celebrate them in the small daily moments and incorporate them into family traditions and special moments.  And I'm thankful for another curly red-head who leads our family to do just that.