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. 

Our Little Scientist

While we certainly did not make the choice to carry Joy to term based on the contributions her life could make to science, I am very happy to share that we were able to participate in several studies and published papers during and after her brief life.  Some of these might be of interest to you or people you know, so please feel free to pass these links on.

- Joy was an organ donor. I plan to write a completely separate post on that topic soon.

- The first study that we participated in was Duke University's study on Anencephaly and Neural Tube Defects.  There is still a lot that is unknown about the causes of anencephaly.  We know that it some cases are related to insufficient folic acid that causes the neural tube not to close completely, but there are questions as to other environmental or genetic components.  Duke is doing a multi-year study looking at DNA and environmental factors to try and solve some of these issues.   We were able to participate in their study by completing a phone interview and submitting blood samples from both Eric and I as well as blood from Joy's umbilical cord.  To date, Duke has collected samples from 5,700 individuals in 1,500 families.  There are no firm answers to date, but progress is being made. If you're curious, here is the link to their most recent newsletter.

- On a related note, Duke also completed a study in 2015 in which we were able to participate about the Psychological Effects of Carrying a baby to term.  The resulting paper has been published, and here is part of the abstract.

"Objective: The aim of the article is to examine the psychological impact, specifically symptoms of grief, post-traumatic stress and depression, in women and men who either terminated or continued a pregnancy following prenatal diagnosis of a lethal fetal defect.

Method: This project investigated a diagnostically homogeneous group composed of 158 women and 109 men who lost a pregnancy to anencephaly, a lethal neural tube defect. Participants completed the Perinatal Grief Scale, Impact of Event Scale – Revised and Beck Depression Inventory-II, which measure symptoms of grief, post-traumatic stress and depression, respectively. Demographics, religiosity and pregnancy choices were also collected. Gender-specific analysis of variance was performed for instrument total scores and subscales.

Results Women who terminated reported significantly more despair, avoidance and depression
than women who continued the pregnancy. Organizational religious activity was associated with a reduction in grief  in both women and men.

Conclusion There appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis. Following a lethal fetal diagnosis, the risks and benefits, including psychological effects, of termination and continuation of pregnancy should be discussed in detail with an effort to be as nondirective as possible. "

The complete study is found here - I think it is a really interesting read (though I may be biased!) I know I personally feel that though it was difficult to carry Joy to term, it would have much more difficult dealing with the "what ifs" that an early termination would have brought. I was excited to see this study that adds some scientific clout to my personal experience.  If you know anyone who works in the medical field, please be sure to pass this study on to them.

- Last but not least, we were contacted out of the blue about a year after Joy's birth by a CRNP at the hospital where she was born to see if we would be interested in participating in a case study about neonatal organ donation.  Of course we said yes, and we answered a series of questions via email. When I heard the word case study, I assumed we were one of many participating, but as it turns out, we ARE the case study.   In another case of God's providence in the little details, we got the first draft of the case study literally as I was in the hospital in labor with Noah.  Stranger yet, Noah ended up in the NICU for a week after his birth, and Mary, the co-author of the paper (another CRNP) was taking care of him in the NICU recognized our name on rounds and we got to meet her and have a great conversation.

There were some things I didn't like about the first draft (certain changes were made to the details of Joy's birth story to make it more anonymous. However, though the I know the point of the case study was not specifically related to anencaphaly, if a parent carrying an anencephalic baby would happen upon the paper, I thought that making some of the details of Joy's birth accurate that were chose for specific reasons and after much research would be helpful.)  We got to talk through these things with Mary and she and Kathy were happy to make the changes we desired.  So there are still a few things that are not quite true (Joy aka "Abbey" in the study) did not live for an hour, but overall the details are much more true to life.    Here is a complete .pdf of the study, if you're interested in reading it or passing it on to someone who works in a related field.

Joy's birthday party

As I mentioned in Joy's birthday post, our birthday tradition is to have dinner and cupcakes at the cemetery.  Last year the weather did not cooperate, but this year it was gorgeous and we had a great family time together.  The cemetery where Joy is buried is quite lovely, so we even took a little stroll around after dinner.  Like any good mom does, I'd love to share pictures of our celebration, so here are a few glimpses into our evening.


I don't really care for this picture of myself, but it's the only one we got that I was in!






We sang "Happy Birthday" to Joy before we had cupcakes, and I think Noah was a bit confused. He was looking around a little like "where's this mysterious Joy person?"!  That certainly didn't stop him from enjoying the cupcake!
 





I love this sweet picture of Noah and his sister!


Happy birthday, sweet Joy!

The aftermath, part ii

I know I have been extremely neglectful of this blog lately, but I do really want to finish Joy's story.  So, when we left off, we had just left the hospital and had a beautiful service for Joy.  So now what?  It was back to real life.  On the surface, everything was much the same as it had been before - I was a stay at home mom with an active little boy.  But I was acutely aware of just how normal and same everything was.

Thankfully, I felt amazing well physically quite soon after Joy's birth.  This meant that we were out and about, doing all that regular "fun" summer stuff.  But that's not where I wanted to be.  I remember breaking down one beautiful summer evening as the three of us were at our neighborhood park.  I didn't want to be at the park - I wanted to be home on the couch, nursing a newborn and managing a wild toddler as I had imagined months before.

Honestly, this time is a little fuzzy in my brain.  With the Olympics coming up soon, I was trying to remember why the last Olympic games seemed so fuzzy to me (unusual, because I LOVE the Olympics).  Then I realized that they were taking place four years ago, just as Joy was born and died.  No wonder I don't remember the results very clearly!

Anyway, I do know that it was a strange mix of emotions.  For the first few weeks, I was terrified that someone might ask if I was pregnant, since I looked, as most newly postpartum women do, 5 months pregnant.  Nothing fit and nothing looked right.  I remember it being frustrating in the same way after Liam was born, but at least I had a cute baby to distract everyone from my lumpy look!  Mercifully, I got very few comments or questions.  Looking back, it must have seemed odd to people whom I saw on a regular basis (librarians, the grocery store clerk) that one day I was very very pregnant and the next I was not but did not have a baby.  I guess in those situations people knew better than to ask, and I was so grateful.  For as openly as I can discuss it now, it was very hard to discuss it at that point.  I did have one situation where a lady I saw at a CSA pickup excitedly ask "where's the baby?" when she saw I wasn't pregnant.  I was able to calmly explain that she passed away shortly after birth but that we were expecting that to happen.  Of course, she expressed her sympathy and apologized for asking, and I was put in the odd position of comforting someone else over my child's passing.

At the same time, Joy's passing made me even more grateful for Liam and the crazy normalcy he brought to my life.  Not that he was a replacement for her, but a welcome distraction, and a reminder of the blessings that God had brought into our lives already.  And of course, he wasn't about to let me sit on the couch and wallow in self-pity - we had parks to visit and matchbox cars to drive.  He had a terrible transition from crib to big boy bed, but part of me didn't mind snuggling him in his bed as he fell asleep...it was good to be needed by my "baby".

I was (and am) grateful for the continued support of our church family during this time. Our church has an amazing meal ministry in which volunteers deliver meals thrice weekly for a month or two after babies are born, during illnesses, etc.  The church graciously provided meals for us for several weeks after Joy's birth.  Part of me felt slightly guilty about this because I was physically capable of cooking for our family (see above regarding feeling fine), but mostly I appreciated the fact that they were willing to care for us in this time of mourning.  And though I wasn't taking care of a new baby, it was still emotionally and physically draining taking care of a two year old during this strange period.  Speaking of which, our children's ministry director graciously offered Liam a free spot in our church mom's day out program for the remainder of the summer.  I really appreciated the chance to flop on the couch and just be quiet and still, take some time to journal, or even go and sit at Joy's grave.  "The church" today often has a bad reputation, but I think we saw the church at its best during this time.

From there, life just continues to go on.  I don't think you ever get over the loss of a child, but the grief ebbs and flows and changes.  Certain situations happen that bring our loss sharply into focus again, and then other times it is not in the forefront of my mind.  For example, we have a group of friends whom we have been close with since we were all young single people.  Now most of us are married with children, most of whom happen to be boys (just recently a few girls joined the clan, but at least 3/4 of our offspring are male).  We were on a camping trip recently with this group, and one couldn't help but observe that ALL NINE children on the trip (6 and under, may I add) were BOYS! Of course, this observation was verbalized by myself and others over the course of the weekend, and every single time I couldn't help but think that there should be a grubby little redheaded girl in the midst of all those boys.  Of course no one is making that remark to be hurtful, and I even commented on myself, but it certainly stings a little every time the topic is brought up there or in other similar situations.  I have a few friends who occasionally chime in with a comment that shows they have not forgotten about Joy.  It's not necessary, but it is truly appreciated in those instances to know that though she is out of sight, she is not out of mind. 

While I've always mourned the fact that I wouldn't get to see her grow up, that has become more real lately.   Four years removed, I frequently see a few girls were born at the same time of Joy.  I've always considered this a mixed blessing - it's kind of nice to be able to see approximately how old and big Joy would be, but of course it's reminder of our loss.  For some reason, perhaps because they are growing up from toddlers to little girls, it's really hard to fathom that we could have a 4 year daughter in the house, playing ponies and princesses and watching Frozen ad nauseam.  However, I am so blessed with my 2 boys, and truth be told, probably make a better boy mom than a girl mom. Bring on the dirt and the noise and the trucks and Legos!  

Happy 4th Birthday, Joy!

I think I've started every birthday post on Facebook or my blog for all three of my children with these words..."I can't believe X is Y years old". So true to form, let me say, I can't believe our sweet Joy is 4 years old...or would be 4 years old today...or was born 4 years ago today. (I never even know quite how to phrase it but you get the point!)

These four years have passed quickly in some ways, and yet it seems so long ago that Joy was born and we got to hold her and be with her for those few moments. In that time, Liam has grown from a inquisitive chubby toddler to an inquisitive long-legged kindergartener (eek!) and another inquisitive preschooler has joined our family.  

While the birth and passing of Joy has brought sorrow and sadness to our life, her brief life has also brought many *joys*. We've seen the support of close friends, family, and the church, who celebrated her birth and remember it four years later. We've seen God working in our lives and are excited to testify to that fact. We were able to participate in scientific research of several kinds (I'm hoping to post more on that soon.). We've been able to walk alongside others facing pregnancy and infant loss. 

So much about the situation is bittersweet, and it is epitomized in hearing Liam talk about his baby sister. In the way that children are, he is very candid about the situation and talks from the heart without reservation. His understanding of Joy's life has continued to grow - I don't remember the first time we told her about Joy, but we talk about her frequently (usually led by his cues) and fill him in gradually as is age-appropriate. At this point, he knows that she was born when he was 2 and died a few minutes later because something was very wrong with her head. He is so sweet in talking about her with Noah - "Noah did you know we have a sister? Let me show you the picture of her feet (which is on display in the living room). I will tell you about her." Oh, it just breaks my heart, but makes it swell at the same time. Just the way he matter-of-factly uses the word "sister" - it's not a word we hear in our house frequently. And the fact that no 6 year old should have to explain to his 2 year old brother about their deceased baby sister. But he handles it so well, even if in a different way than an adult does. (By the way, I'm not making Liam out to be some kind of angel, he certainly has his faults...but the way he deals with this situation amazes me.) He proudly told his mom's day out teacher that today is his sister's birthday and we're going to have pizza and cupcakes to celebrate at the cemetery. I guess for him, it is just part of his life. He asks questions when he is curious, processes it, and moves on. The other day we were folding laundry and he asked me "Did Joy ever wear clothes?" I told him that she did wear clothes in the hospital and that she was in fact buried in clothes. He thought for a minute, said "that's kind of weird that she was buried in clothes." I agreed, then the conversation changed topics. I'm grateful for this not-so-little guy and his sweet care of his baby sister's memory. Here's a picture of the boys last fall with their "Joy bear" who was lovingly made by Molly Bears in the exact weight of Joy when she was born.

I don't think you ever get over the loss of a child, but the grief ebbs and flows and changes. While I've always mourned the fact that I wouldn't get to see her grow up, that has become more intense lately. At first, I was mourning the loss of that tiny baby, of growing a child I could not take home. But now, particularly as Noah is growing older and has such a distinct and entertaining personality, I am mourning the fact that I will never get to watch her grown up. I often wonder what Joy would have been like. (I mean I understand that her growing older was not part of God's plan, but I'm just letting my imagination wander here). Would she have been spunky and energetic and analytical like her brothers? Or more reserved like her mom? Athletic or artsy? Silly or serious? As the boys turn from babies into real little people and we see their unique selves emerging, it makes me mourn for missing those milestones and funny moments with a sweet red-headed girl (at least that much I know for sure!). 

In the past, I've struggled with how to celebrate this day. This year, I feel like I'm confident with the plan we have in place. It's still a strange way, but I think we're celebrating in the best way we can. Earlier in the week, we mulched her pretty little garden that some good friends donated in her honor - full of pink-blooming perennials. This morning, while the boys are having fun at Mom's Day Out, I am taking the time I normally spend working to update this long-neglected blog. And this evening we will take pizza, cupcakes, and balloons to the cemetery and have a little picnic. (I'm hoping the weather cooperates this year!)

Each year for Joy's birthday we have also made donations in her memory - to our church (who is planning some artwork for the nursery), to the pregnancy resource center, etc. This year, in addition, I am planning to donate some books to Beverly's Birthdays, which is a Pittsburgh non-profit that provides birthday cheer for children experiencing homelessness and families in-need. Every Birthday Cheer Bin that goes out to a child on their birthday contains a book along with 5-6 other gender and age appropriate gifts, including a toothbrush and toothpaste. Last year they distributed over 1,100 of these Birthday Cheer Bins.   We love birthdays around our house, and though we don't have extravagant parties, we do make them a special occasion for the special person.  In Joy's case, there's no one to shower with fun and gifts, so it seems like the perfect chance to share the love with a little someone who is here but is not in a situation to receive a birthday gift or party.  If you'd like to join me in donating, you can do so here.   And all donations will be matched 50% by Usborne, plus of course I will be donating any commission I made because I'm not doing this to personally profit! (And it made me set a goal, so I just picked $400 for her 4th birthday - I'm happy just to donate our own contribution.)

So happy birthday, sweet girl! We love you and miss you and can't wait to see you again someday! 

Happy (belated) birthday to me!

This is slightly off topic, but it's my blog, right?  Yesterday was my birthday.  Birthdays have always been (and still are) kind of a big deal in my family - not necessarily with elaborate gifts, but a special day to celebrate you.  We got to pick what we wanted to eat (and later choose a restaurant), got thoughtful gift, and were just generally the center of attention.

I recently became aware of a nonprofit, Beverly's Birthdays, that helps spread this same birthday cheer to children experiencing homelessness and to families in need.  You can check out their website here, for more info, but generally speaking, they provide birthday parties and gifts to kids who otherwise wouldn't have this kind of birthday celebration.  Every Birthday Cheer Bin that goes out to a child on their birthday contains a book along with 5-6 other gender and age appropriate gifts, including a toothbrush and toothpaste.  Last year, Beverly's Birthdays distributed over 1,100 of these Birthday Cheer Bins.  

So for my 36th birthday, I'm hoping to raise $360 dollars that will be matched at 50% through Usborne Books and More and matched 25% by me (I will be donating any commission I earn too so I don't personally benefit from this financially.) to donate some amazing books to the children served by Beverly's Birthdays. If I reach my goal of $360 dollars, that would be over $630 of amazing, high-quality children's books donated to a great cause! 

I'd love it if you'd donate even a few dollars to help some little ones experience the great feeling of being celebrated in a special way!   Here's the link if you're interested in donating - https://www.youcaring.com/beverly-s-birthdays-546326