Eleanor

My sweet Eleanor will be turning three years of age in less than two weeks, and as the saying goes...my baby is growing up too fast! I think she has literally grown an inch or so in the past week alone!

She's now in that in-between stage where sometimes she is still very much our baby girl and at other times she blows us away with her maturity - she's still wearing a diaper to bed at night and co-sleeping with us, but will say things like "Mommy, you can't speak like that to a child!" when I get snappy at her.

We're certainly getting a kick out of hearing her use words or sayings she picks up from us or from books, complete with body gestures and facial expressions. She'll say things like, "What's that awful pong?" when she detects an unusual smell, or she'll sit accross the dining table from daddy and say, "Lets have a combination, dad." - meaning conversation. Too funny!

Mere words cannot express the intense love that Jim and I have for her, nor can they fully describe what an amazing kid she is. Now I know why parents love to brag about their kids...it really isn't bragging...it's more like being blown away with the miracle of human intelligence combined with cuteness, and then reporting on what has been witnessed. We are forever grateful that we get to experience this joy of watching our Eleanor blossom everyday. 

Some of you may be wondering how Eleanor is/has been coping since the birth and passing of Eve. As I have mentioned in a previous post, Eleanor knew of the pregnancy and she was eagerly awaiting her little sister's arrival. She also knew that Eve was not well, and we had carefully prepped her to understand that there was a possibility we weren't going to be able to bring her sister home after she was born. We did so at Eleanor's own pace. It didn't take a whole lot of detailed or prolongued explanations.

Eleanor would talk lovingly about Eve everyday, but she didn't dwell on the possibility of loss nor did she show sadness - I don't think she was associating the facts about our circumstances with sadness. She did ask some questions but not a whole lot. We answered them simply, but truthfully. I could tell that her mind and heart were slowly processing things...she would surprise us with how well she understood what was going on through the prayers she'd lift up to God about her little sister.

Sadly Eleanor never got to meet her sister Eve. We had not planned for it to happen that way. In fact, we very much wanted her to be able to meet Eve as soon as she was born, even if she had been stillborn. We had hoped to give Eleanor the opportunity to have closure - as much as a 2.5 year old child can have closure. All the staff at the hospital from all departments involved agreed and advised us that it was actually good to explain and let your child(ren) in on what is going on at every step of the way, while making sure to use age-appropriatess.

However, after meeting Eve and seeing her frail body ourselves, we did not feel right for Eleanor to have to do so. So before Jim brought Eleanor to visit and pick me up from the hospital, just as we had pre-planned, he had a chat with her at home, and explained to her that Eve had been born but she would not be in the hospital because she died and went to be with God in heaven. Lots of questions ensued in the days following, but again, not a constant bombardment of questions demanding answers...it was more like she needed to keep asking the same questions over and over again until she felt like she understood and felt satisfied.

The night before our family-only funeral for Eve while talking to Eleanor about the next day's event, we were quite worried about how she would handle everything, especially after she had told us that she was sad Eve isn't here with us. However, at the funeral Eleanor did better than we had hoped for. Just as she was included at every step of the way, we made sure to include her in the service. Eleanor said a prayer to God about Eve and she sang a special song to her little sister. I think having made it our private family funeral has made the difference in her ability to be in the moment with us. Another thing that has helped was that we held the service on a sunny morning, under a beautiful white canopy with pink flowers and ribbons that the staff at the memorial park had set up for us on the lawn.

Since the funeral, Eleanor continues to talk about Eve. I don't think a day goes by without Eleanor saying something or asking a question about Eve. She has yet to show sadness about her loss. If it happens, we will try to handle it appropriately. Right now, we thank God everyday that Eleanor is doing well. We had suspected that most likely she would be okay. We knew that in most cases children are a lot more resilient than we adults think. Yet, like any good parent out there, we wanted to be careful and wise in the ways we explained things for her, as well as watchful of any unusual reaction and behavior. I think we were more concerned with how our actions and reactions would affect her so we were extra mindful of that.

A couple of weeks ago we took Eleanor to visit Eve's gravesite at the Memorial Park. We hadn't told her where we were going because we wanted to watch her reaction and find out if she'd remember the place and it's meaning. It didn't take long for Eleanor to recognise the place. As soon as we drove up through the park she said,  "Mom! This is where Eve is! Are we gonna see her? Mom, are we in heaven?" 

She surprises us everyday, and I can't help but brag...

Gratitude

Yesterday marked one month since the birth and passing of our little Eve. People have been asking, How are you doing? or How are you coping?.

A couple of weeks ago I was back at the hospital for a postnatal appointment. The day before and the morning of the appointment day I was pretty anxious and restless. I guess one can imagine why I'd feel so nervous, but strangely, at the time, I couldn't pin-point the exact reason(s) for feeling that way. In retrospect, it probably was due to the fact that I was mostly functioning on survival mode...just going through the motions in the aftermath...similar to being in a state of shock where your mind sort of stops thinking and your feelings go numb. People around us seemed quite surprised to see me out and about already, after just two weeks.

I had thought the appointment was going to be a quick postnatal check up with my doctor or the midwife. Due to my nervousness, I got to the hospital thirty minutes early. I sat in the waiting area looking at the pregnant women around me who were waiting to get their ultrasounds. I couldn't help but wonder if their pregnancies were going OK...if everything was OK with their babies...Then I began to think, Wow! Just three weeks ago I was sitting in this same place but Eve was still with me! People around don't know that! They probably couldn't tell. How could they? Could they?.

My mind wondered off for a few more minutes, and soon I found myself in a meeting room not just with the midwife or the doctor I saw on a regular basis, but also the social worker who had helped us with all the information regarding the logistical and emotional support they offered when dealing with the death of an infant child, as well as the doctor who actually delivered Eve. I had not expected to see them all again, let alone all at once! I sensed my nervousness level slightly increase, and I could literally feel my blood pressure go up. As soon as they started to ask me questions about my well being, the flood-gates opened and I couldn't hold back the tears. I was just overcome with emotions, mostly overwhelmed with gratitude for these amazing women who had been there and cared for me and my family all these months.

Though we have been on an incredibly difficult journey, God had surrounded us with so many wonderful people - Christian or otherwise, and sometimes in the most seemingly random ways - who had acted as the hands and feet of Jesus as well as the mouthpiece of God, to remind us of His loving presence and care for us.

In the past couple of weeks I have tried a few times to come back here to write, but it has been even harder to organise and express my thoughts...it's a whole new level of vulnerability I feel. Yes, there is grief and sadness, but there is also so much more...This past month, it has mostly been gratitude.

In God's Waiting Room (Part 7: God's Will Revealed)

On Monday, May 6, 2013 at 1 a.m., our precious second child Eve Hanna Jung was born and immediately passed on to be with her Lord and Saviour Jesus.

We have been grieving the news of Eve's fatal condition since the end of January, but Eve fought on bravely and dearly for 29 weeks, allowing us to see her grow inside mommy (thanks to modern technology) and feel her kicks and bumps. Eleanor loved her little sister from the very beginning as we watched her pray for, talk and sing to her on numerous occasions.

We certainly did pray for everything—for the doctors and the diagnosis to be wrong, and for a miracle—but this was the divine path and time for Eve and our family. We let her go into the loving and sovereign arms of our Heavenly Father. 

"She was yours for a time, but she was also spared the pain of this now life, and has gone straight to the forever life."

"She is not experiencing death any more, but she is experiencing life in a way that you and I can only imagine.  She is so full of life.  She is meeting so many very special people that we read about in our Bibles—but she knows them now face-to-face.  And she is waiting for you."

We held a quiet and private funeral service this past Friday, May 10^th at 10:30 a.m. at Castlebrook Memorial Park in Rouse Hill - an area about 40 minutes north-west from Sydney CBD. 

We were a bit anxious about how Eleanor would handle everything. The night before, after we tried to prepare her for the next morning's event, she displayed signs of grieving as she sadly asked why Eve isn't home with us and as she tossed and turned in her sleep. Our hearts ached all the more...

Thankfully though, Eleanor did better than we had hoped for. The intimate, family-only setting enabled us to get her involved and in the moment...she even lifted up a prayer and sang a special song for her little sister...what tender heart even at such a young age...

Thank you for all your prayers and support, especially for the past several months. We have no words to describe how overwhelmed we feel with the love that has been poured on us. We simply look forward to paying that love forward.

Blessings to you all as we honor Mothers worldwide this weekend.

1 For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. 2 For in this tent we groan, longing to put on our heavenly dwelling, 3 if indeed by putting it on we may not be found naked. 4 For while we are still in this tent, we groan, being burdened-not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. 5 He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee. 6 So we are always of good courage. We know that while we are at home in the body we are away from the Lord, 7 for we walk by faith, not by sight. 8 Yes, we are of good courage, and we would rather be away from the body and at home with the Lord. 9 So whether we are at home or away, we make it our aim to please him. (2 Cor 5:1-9)

In God's Waiting Room (Part 6: A Look Inside)

As we all know, certain events in our lives take us into a wide range of emotions all at once. Some people are very good at showing or expressing all their emotions whether it is by talking about it or through their body language. Others are good at burying some of their emotions and only bringing out the emotions they find most appropriate or acceptable, while still others keep their emotions so well hidden that they are down right indecipherable. 

I'm not too sure in which category people would place me in general, but presently as we walk through this difficult and unknown journey, I am fairly certain I am definitely not good at making my feelings obvious. I know this because I have in a way sort of shut myself off and isolated myself...not intentionally...but it sort of just happened instinctively in a way that sometimes I can't understand it myself. 

I am in no way trying to deceive anyone, but the raging emotions that tug me from one extreme to the other makes it hard to truly express how I really am doing. I have to admit that it is quite a burden to carry - I mean having to "let others in" - on top of the weight that I am already carrying in making sense of and understanding my current reality. To be honest, sometimes I just wish people would just "get it" and automatically know how to deal with, approach and interact with me...but I know that it is selfish wishful-thinking. Also, I find it equally burdensome to have to be the one responsible for others' emotional reaction - or lack thereof - upon hearing of our tragic circumstances.

This is in no way "a rant" about how I think others should treat me, so please do not misunderstand me. I know our loved ones - family, friends, and even acquaintances - feel our pain but feel equally awkward and helpless as to how to comfort us...This is actually my way of apologising and trying to explain my behaviour which may puzzle some, especially family who I sometimes find it more difficult to speak to, or friends nearby whom I haven't been able to meet up with...I guess it's a subconscious defensive mechanism I'm employing because deep down I do crave understanding, support, and love...

Recently I read a blog post about grief by a mother going through some painful things in her own life, and she mentioned how sometimes Christians tend to isolate ourselves and "hoard our grief" instead of sharing it with the body of Christ, and thus making it our god. This of course also applies to non-Christians who may find it difficult to open up about their pain. I agree with her whole heartedly, but I think that there is a time and a way to share the grief. People who are grieving need to be given space, time, and the opportunity to feel the pain in their own terms even if it means isolating themselves for a short while, without being judged by others as being "ungodly", "faithless", or the like. So perhaps that's where I'm at: needing time...

More importantly though, one huge thing that I discovered about grief, while listening to a podcast on the subject by another lady sharing about the lessons she has learned after losing two young children of her own, is that joy and grief can co-exist. Wow! How liberating it was for me to hear those words! Just because I feel joyful about certain aspects in my life doesn't mean I'm not grieving over other painful ones, and just because I am grieving over a loss of something or someone, doesn't mean I can't be joyful about the blessings in my life.

As you may have noticed through the pictures and blurbs I post on social network media, my heart beams with delight and contentment when I am with Eleanor. God has been sustaining me and I've been finding joy in the ordinary, everyday things as I watch Eleanor burst with energy and love of life on a daily basis. That is what's most visible on the surface, though. Sometimes my heart is in turmoil and some nights I am not able to rest, especially on days after our visits to the hospital - which have been more frequent due to further concerns with Eve's heart and overall conditions of being further along in the pregnancy at around 30 weeks.

So today is a good start in letting all of you "in", beyond the surface. There are many layers of emotions, feelings and thoughts, but the following excerpt from a prenatal diagnosis support website (www.pdsaustralia.org) sheds some light into what's at the centre driving my emotions and behaviour at present. 

Finding out your baby has a condition

Finding out that your unborn child may have a serious or life-threatening condition may come as a shock to say the least. If you are not in the high-risk category, the shock may be even greater. Many of the parents who receive such terrible news every year are relatively healthy parents between 20 and 30 years old, living a wholesome lifestyle, many of whom have had other perfectly healthy children before receiving this diagnosis.

The parents who provided their testimonies explained they felt as if they had been thrown into a world they assumed belonged ‘only for others’. What should have been one of the happiest moments of their lives had turned into a shattered dream.

In order for parents and the community to make sense of the intense feelings that may follow such a diagnosis, it would be helpful to learn about, pregnancy attachment theory. Kennel and Klaus (1976) described nine steps that occur in pregnancy to explain human attachment. Understanding that most of these steps occur even before the birth of the baby can help us to acknowledge the grief issues that accompany the premature death of an infant or the loss of the healthy child that we had in mind.

• Planning the pregnancy

• Confirming the pregnancy

• Accepting the pregnancy

• Feeling foetal movement

• Accepting the foetus as a person

• Giving birth

• Hearing and seeing the infant

• Touching and holding the infant

• Caring for the infant

The first five steps occur before or around 20 weeks of gestation, which is currently about the time that most parents discover that their child has an abnormality. Most parents have already made plans, named their child, announced the pregnancy to their family and friends and imagined their life with the new baby by that time. Sometimes the child has a condition that is not lifethreatening but involves a lifetime of special care and special needs.

How can parents be expected simply to forget, and to make vital decisions involving the life and death of their child in just a few days? Many parents have described feeling an awkward sensation of grief while their child was still healthy in the womb, while others even felt guilty and didn’t understand why they would grieve for someone who was still alive and / or a child that would live. This is called anticipatory grief.

Indeed, your child is still kicking and is seen as ‘normal’ but you know that this will come to an end. You may be anticipating the next few months and starting to experience grief-like symptoms (Geldard, 1989). 
These may be:

• Emotional (sadness, anger, depression);

• Mental (preoccupation with thoughts of the baby, fantasies, fear of going crazy);

• Physical (aching, emptiness, lack of strength, palpitations);

• Social (desire to be left alone, problems communicating, difficulty planning

the future).

Although parents experience one primary loss in losing their baby or their dream baby as they imagined him or her, they in fact experience multiple ‘secondary’ losses (loss of their ideals, loss of hope, loss of their family, loss of innocence, loss of security, to name just a few). The pattern for many parents is the same as the one they will experience after the birth of their child; they go through stages of grief. Elisabeth Kübler-Ross (1969) identified five distinct stages of the grieving process: denial, anger, bargaining, letting go and acceptance. 

Research has shown that it is possible to go through those stages in any order or to go back and forth between stages. It is also imperative to keep in mind that not everyone will reach the acceptance stage.

• Shock (sudden numbness, inability to function normally)

• Denial (disbelieving the diagnosis, trying to find a solution)

• Guilt (the parents may wonder what they did, perhaps ate or drank, to make their baby sick)

• Anger (parents may be angry with the medical staff for what they did or did not do, or with friends for smoking in front of the pregnant mother etc.)

• Acceptance (the parents may come to terms with the diagnosis, decide about the funeral or special care the child will need).

‘Anticipatory grief is more than just pre-death grief symptoms over a few months. It is a journey towards the ultimate loss but is composed of many losses of the past, present and future’ (Gilbert, 1996, p. 269).

The problem with diagnosis of long-term or life-threatening disease in unborn children is that the mother may be pregnant enough for others to see it, and questions that would not be asked in the early stages of pregnancy will now arise from all sides. The questions that many people will ask are about the mother's due date, the sex or name of the baby and how happy the family is; these can be heart-breaking conversations for a parent who knows the baby will die shortly after birth or has a severe condition. 

Yes, we are grieving but we haven't given up.  We have put our faith, trust, and hope in the Lord for whatever may be in the books for us. Thank you ALL for walking with us and praying for us. We find great strength from the love notes and messages you send us. Our hearts are truly warmed...

In God's "Waiting Room" (Part 5: What's in a Name?)

"A good name is better than precious ointment..." - Ecclesiastes 7:1a

A dear friend - who himself is a father of four beautiful children - once commented that other than our faith and our deep love for God and His Word, there are perhaps only a few things we can leave for our children, a deep and meaningful name being one of them. I believe he is right. Materials fade, skills may be forgotten, advices ignored...but a name sticks forever. Even after we are long "gone", the first thing people still remember us by is our given name. 

Early on in our pregnancy we began to think of names for the baby we are expecting. Because I'd been wishing we were having another girl so that Eleanor could have a life-long best friend, picking a girl's name was fairly easy and we had settled for one. Jim was considering a couple of boy's names but we hadn't decided on a specific one just yet. Then, soon after we learned about our unborn baby's diagnosis along with the gender, I felt the urgency to pick a more fitting name given the heart breaking prognosis. 

Even though medically speaking the prognosis seems so final, we are still clinging onto Jehovah-Rapha, the Lord our Healer, and trusting in Him, our loving Father to give us strength and the faith to accept whatever His will may be for our baby and for our family. With that in mind, we went back to the drawing board to name our unborn precious child. Not long after, Jim sent me the following via email: 

I would like to name our daughter "Eve".  It is an English/French form of a Hebrew name "Chava", which is derived from "chai" meaning "life".  Of course Eve is the first woman, and the mother of all people, the one who gave birth to all human life.  

As we struggle with our little one between life and death, I want us to hope "life" for her, that God would bestow glorious "life" upon her. "Eve" recalls life that is shortened and yet life gained for all eternity in our gracious God as He receives into His loving arms His covenant child.

"Eve" is also short for "evening," referring to a time of anticipation for the following event. For our Eve, she can look forward to her dwelling in God's presence, in glory, and future resurrection, and future reunion with her parents and sister.

In the Bible, the first mention of a woman is simply that she is a "female" (Heb. neqebah) [Gen.1:27].  Even when Adam sings of her creation [Gen.2:22] made from his rib, and in all subsequent mentions [Gen.2:24; 3:1...], she is simply a woman/wife/(Heb. ishshish).  

Of course, we know that she and Adam fell in sin and were cursed and expelled from the Garden in chapter 3, but as soon as God's curse/gospel was pronounced, Adam's immediate next move was that of faith and hope by naming his wife the "mother of all living"/(Heb. havvah)/"Eve" [Gen.3:20].  

Adam, the first man who was cursed but heard the gospel, gave Eve her special name.  This testifies that all is not lost, but that "life" will continue even after death.  After our faint life in this broken and accursed world, we can look forward to our true and abundant life in glory!

I couldn't have agreed more with Jim's pick. I thought it was perfect as it is a constant reminder to us that our Father in Heaven is the creator of life and in control of it, in the present and in the one to come. 

For the middle name we wanted to keep the first syllable the traditional Korean family character passed down to our children's generation, which has the sound hae, therefore picking the Hebrew name Hanna which means "favour" or "grace". So our littlest baby girl's full name is Eve Hanna Jung - a life graced by God, or a life in God's favour - and she shares the same initials as her big sister, making it that much more special. 

In God's "Waiting Room" (Part 4: A New Reality)

When we came back from our nine months of furlough in the U.S., it was January of 2012 and Eleanor was 17 months old. After a few months of settling into our new home, we reconnected with the Mothers' Group we had been a part of since Eleanor was born. Out of the ten or so mother-child duos, only three had continued meeting up along with the addition of another mother-son pair that joined the group shortly before our return.

As we continued to meet up week after week, eventually all of the four mothers except myself got pregnant with their seconds. As the months passed and their 'tummies' grew, Eleanor's keen perception and language ability also began to grow exponentially. Slowly, she began to ask questions about the mommies' growing tummies, and I'd explain to her that there were babies in there. Then sure enough, my little smarty-pants Eleanor would take a good look at my flabby-and-pudgie-from-not-having-completely-lost-my-pregnancy-fat belly and would ask, "Do you have a baby in your tummy?"! This went on for - oh boy! - the duration of their pregnancies!

Then, as each of the four babies were born and the mothers began bringing them to our play times, Eleanor became fascinated with the sight of breast-feeding! As you can imagine, I had to answer to her countless hours of repetitive questions, "What are they doing?", "Why do babies eat their mommies 'tchji-tchjis' (Korean baby word for boobies)?", and so on. As if that wasn't enough...each week we got together with the group, Eleanor was more interested in staring at the mothers breast-feeding their newborns than playing with her friends.  After her dose of breast-feeding 'lessons', she'd come home and breast-feed her dolls.

Over the months, each time she'd see the babies in our Mothers' Group or any other baby at the park or at the shops, Eleanor would go up to them, tickle their feet or gently rub their cheeks and make comments like "S/he's a cutie!". Once, when the Mothers' Group came over to our house, we mothers were having tea at the table with the babies laying on the sofa and the toddlers just running around playing, and I literarily caught Eleanor quite boldly try to pick up one of the babies in her arms! She couldn't get enough of them; she just loved them to bits! ALL this to say...I was quite surprised by Eleanor's fascination, love, and interest in babies. We could so clearly imagine Eleanor with a little sibling...I guess that was the extra push that guided us in our decision to try for another baby.  

So when we finally found ourselves pregnant in early November of last year, we were beyond overjoyed! As you can guess, our hearts and minds began to imagine Eleanor with a little sibling - playing with...caring for...dotting on...we could not wait to tell her we were expecting a baby! Though we tried to keep our pregnancy quiet, we began to throw a few hints at Eleanor since by then she was nearly 2.5 years of age and already asking lots more questions about babies. When she'd ask me "Do you have a baby in your tummy?", I'd say "Would you like mommy to have a baby in my tummy?", or "Do you want a baby brother or a sister?". We even began praying together for one. Slowly, Eleanor began to piece the puzzle together on her own, and it didn't take long for us to casually let her in on our secret - this was after we had found out the baby's heart rate was normal after the initial scare. Amazingly, Eleanor never spilled the beans to anyone, and most people we saw on a regular basis didn't suspect anything because they already knew of her 'obsession' with babies.

Well, fast forward to January 18, 2013, when at ten in the morning Jim, Eleanor, and I found ourselves sitting in one of the waiting areas of the newly erected and sterile buildings of our local hospital. After thirty long minutes of waiting, Dominic, the Genetic Counsellor who had called us to come in for test results shows up, takes us to a nearby private meeting room, and after a few pleasantries goes on to tell us the devastating news.

Simply put, we were told that even though the nuchal translucency ultrasound result came back as normal, due to abnormal levels of two specific pregnancy hormones, I was found to be at high risk of carrying a baby with a genetic or chromosomal disorder.  He proceeded to tell us that if that were the case that, there is no cure for such a disorder as it affects every cell of the baby's body, that it is a fatal disorder whereby most babies are miscarried during the first trimester, that most of the babies that survive to the second trimester are also miscarried before they are carried to term, and of those that are carried to term, most are stillborn or die at birth or shortly after birth, with a very small percentage living past a few hours or days, and hardly any making it to their first birthday.

As if that wasn't hard enough news to hear, Dominic went on to tell us that most parents who find out they are at risk of carrying a baby with such a fatal chromosomal disorder, decide to terminate the pregnancy. It was really hard to hear and digest that...Bear in mind that these first trimester tests DO NOT diagnose a problem; they only signal that further testing should be done. As Dominic sat there waiting, giving us a moment to get over our initial shock from the hardest news we've heard, I couldn't help but wonder if he wasn't waiting for an immediate 'response' to his last statement...

Time seemed to have frozen, but the silence was broken as we began to discuss further testing options available, their risks, the time at which they can be administered. We were not ready to make any abrupt decisions; we wanted time to process everything, to gather all the necessary information we needed, and to PRAY! Thankfully, we had until week 20 of pregnancy, and at this point I was 14 weeks along. In the meantime, we were given the option and scheduled to return in two weeks to get another more thorough ultrasound to check our baby's condition, at least as much as they could see so early in the pregnancy, if we weren't comfortable undergoing further testing.

Those two weeks of waiting really felt like the longest of our lives. We were scared, confused, not knowing who to turn to...we had not made our pregnancy known to anyone except our parents and siblings...even though we didn't even know what nor how to pray, we just pleaded to God asking him to help us through it all. We kept the news to ourselves, turning to the only source of information we had...the Internet...and looked up and searched for whatever information we could gather, all the while scared of what the future could hold. We did further reading on the disorder, searched for stories of others who had gotten similar screening results only to discover that it was a false diagnosis...basically we were looking for a glimmer of hope...We had NO IDEA what we were doing. We contemplated asking a few close individuals to pray for us but we thought it'd be best to wait until we got a proper diagnosis.

On February 7, 2013 at 16 weeks of pregnancy, we headed to the hospital again for a more thorough ultrasound at which point one of the senior doctors, who later we found out is a specialist in the area of Fetal Chromosomal Abnormalities, came in to tell us that they had found serious and fatal abnormalities in our baby's tiny heart - one of the markers of the chromosomal abnormality they had screened our baby to have. He explained what the prognosis would be like if the baby is found to have or not have any chromosomal issues and the treatment options for each case scenario. He reassured us that no matter what, that they would take good care of us. We were so thankful to hear those words...

The doctor's recommendation at this point was that I undergo a diagnostic test - even though there is less than one percent risk of miscarriage - since it could tell us exactly what the problem is with the baby and they can make a better prognosis and come up with better treatment plans. By this point Jim and I had already discussed at home that we would go ahead with the diagnostic test.  Whether our baby had a chromosomal disorder or not, we needed to know how to fight for her life...Thankfully we were able to have the test done that same day. We'd only have to wait a few days - the weekend - to get the results.

Monday, February 11, 2013 rolled around and we were right back in the tiny meeting room at the hospital to hear that the tests did indeed confirm that our baby has a chromosomal disorder. The thought that we'd have to somehow explain this new reality to Eleanor was one of the things that pained my heart the most...

(to be continued...)

A side note

I know I have been taking my time to write. The truth is, I feel like I've reached a road-block so to speak. It hasn't been easy to organise all my thoughts and feelings to express myself in a way that I hope to be 'heard'. I hope you understand. There's so much I can and wish to share, but at the same time I feel the need to keep some things private, and all the while I'm trying to be careful as to not subconsciously offend anyone with what I share here - the facts, my thoughts and my take on things. I guess mostly I just feel very vulnerable. 

One of the very first things that happened to me at the very beginning of this painful and scary journey was that I became overcome with a sense of guilt. Guilt for not having been more compassionate towards others whom I've witnessed suffer in the past; guilt for having overlooked the fact that there may be people I know going through hardships and how I may not have extended my hand and my heart when they needed the most. 

More specifically, I began to recall the many friends and relatives who've lost a parent or another family member, the friends who've lost their five year old daughter on an automobile accident, the friends who lost their three month old newborn son to SIDS, the friends who've watched, fought, and prayed for the life of their premature daughter whom the Lord eventually took to be with Him after two months, the friend who struggled with cancer for nearly ten years before going 'home'...I can't help but think about how fragile they were when going through what they've faced, the vulnerability that has probably caused them to take cover at times, in place of facing each day and, more importantly, people in general.

I guess it's true that it takes a certain amount of hardship to really understand the pain of your brethren and honestly empathise. I am certainly not saying that I am 'there' but that I feel I may be on my way. Then, just this month we hear the news of the tragic death of the son of Rick Warren - the well known pastor of Saddleback Community Church and the author of A Purpose Driven Life - and I came across this article that very much touches on the subject of vulnerability in the face of trials. 

Here is the article (which you can read in full if you hover over and click on the title) along with an excerpt from it which I would like to highlight: 

Rick Warren's Grief: The Comfort and Cruelty of Speculating on Suicide by Kristen Howerton:

I was devastated to hear the news of Rick Warren's son, who took his own life on Friday after a lifetime of battling serious mental illness. 

Unfortunately, over the past 24 hours I've seen both individuals and news outlets posting speculations about Rick Warren, his son and their relationship, with what I perceive to be an attempt at figuring out what went wrong. People seem to want to assign blame to something or someone -- to unlock some mystery that would explain Matthew's suicide.

When we hear about grieving parents it can be so tempting to try to assign blame, because if they aren't to blame, then we have to grapple with the reality that sometimes, tragedy is senseless. This is an uncomfortable truth: awful things happen to children that parents cannot prevent. It's a truth so painful that we would rather throw grieving parents under the bus than face it. 

I think this is an awful but real human impulse -- we want to find a way to exclude the possibility that something bad could befall our children. I will admit here that I'm not immune to this impulse. When something horrific happens to another child, I find myself quickly cataloging the details, trying to find something that would make the tragedy exceptional -- some slip-up that the grieving parent made along the way that would comfort me from a concern that it could happen to me. I've done it when I've heard about infant death: I've scrambled to figure out if the parent was doing something wrong. Was there some rule they failed to follow that would assuage my anxiety about my own child's mortality? I found myself doing this as I watched the Sandusky trial as well -- quickly casting aspersions on parents of the victims for their lack of discernment.

I've been going back and forth between writing this post along with another draft of just the continuation of our 'current story'. In the end, I felt I needed to clear my mind first to really come across as genuine as I can when sharing this journey with whoever is reading and following. I am in no way assuming that those who visit this blog will turn against me. My main point is that the more I try to make  sense of the reality that our family is facing these days, the more vulnerable I feel...on the one hand I desperately want to reach out and ask for support, but on the other hand I fear that in doing so I will expose my wounds to greater hurt.

As a woman and a parent, I personally am quite sensitive to what I can handle seeing or even reading.  So if I do not include details of our experience please understand that I am simply protecting our privacy as well as protecting myself and others from unecessary burden and heartbreak. At the same time, I am only human and sometimes I may slip up and disappoint. Either way, I hope you continue to read with a grain of salt. Whatever I may or may not share, I hope you understand...

In God's "Waiting Room" (Part 3: Joy and Pain of Parenthood)

It's a well known fact that parenthood is hard. It's a never ending roller coaster of exhilarating joy and crippling fear. Even the best of parents in the world will admit to it. One of the biggest fears I was plagued with as soon as Eleanor came into our lives was our 'advanced' age as her parents...the number of years between her and us, her parents...the stark reality that as Eleanor would develop and grow, we'd only continue to - quite literally - 'decay' physically.  Yes, quite dramatic of me...but I couldn't help the awful thoughts like What if something were to happen to either myself or Jim, or even to both of us, leaving Eleanor all by herself?, or What if Eleanor becomes an orphan before she even finishes college?, etc.

I know I wasn't 'the only' nor the first parent to have those fears. My younger sister who got married and had her first kid at age 23, has recently decided that she and her husband will never fly anywhere together without their kids. I think the rational behind that fear of mine was the tragic fact that my own father passed away just six months shy of him turning fifty years of age, when my youngest sister and brother were still quite young. I think when one experiences the death of a loved who's life was cut way too early, the issue of mortality becomes much more real and close. Maybe we become extra fragile and fear that death could strike, again, sooner than expected.

Ironically, these contrasting feelings of fear and joy associated with parenting - left us with the desire to have more children...realistically just one more. You see, we hoped God would gift us with a sibling for Eleanor so that she'd have someone as close in blood as it gets to her parents - besides grandparents, uncles and aunts, and cousins. However, we weren't driven by irresponsible or frivolous impulse. We prayed about and thought through the risks and costs of such a pursuit.

So you can imagine our excitement when we found ourselves pregnant in November of last year, 2012!  We were besides ourselves. According to our calculations, it looked like this baby's due date was very close to Eleanor's birthday! We so desperately wanted to tell our families right away. When we told our parents about being pregnant with Eleanor, it was on Christmas Day in 2009. We had hoped to be able to tell them about this pregnancy again over Christmas.  However, due to the nature of the sensitivity of pregnancy, we were cautious as to not share the news with anyone before we felt things were ok.

We were even more careful to not 'jump the gun' when during the very first ultrasound at six weeks to confirm pregnancy, we were told that the baby's heart rate was bordering on the low side. We were scared, worried, and our hearts dropped. But the midwives reassured us that it could just be that the baby was still too young. They scheduled for us to come back the next week for a second ultrasound, at which point our baby's heart rate had gone up to "normal" range. We let out sighs of relief and went about our lives for the next few weeks until the hospital would schedule us for pre-natal care starting sometime at 12 weeks of pregnancy. (Note: In Australia, a lot of hospitals will not allow pregnant women to make a booking until one is 12 weeks along. Until then, you're expected to be seen by your  family doctor, aka your general practitioner.)

We were contacted for our first pre-natal consultation in early January at 13 weeks which coincided with the nuchal translucency and the biochemical screening (not a diagnosis) for abnormalities, particularly chromosomal ones.  When we were pregnant with Eleanor, we received our pre-natal care for the first four months in the U.S. when we were there for our short furlough. There, screening for fetal abnormalities was optional and we had opted out. Well, with this current pregnancy, because of my age, we were under the impression that such screening was not  'optional' but more of a necessary precautionary routine. We happily obliged because we thought there would be no harm in knowing of anything unusual as it would only help us to receive proper care.

We received the nuchal translucency ultrasound result right away and it had come back as being normal. We were grateful and relieved!  But we would have to wait a few days for the biochemical test results.  Naively we convinced ourselves that everything was fine. We wanted to wait for the blood tests results first, but we couldn't keep from sharing the news with our families any longer. So we did, and as expected, everyone was extremely happy for us.

The very next day, we received a call from the hospital asking us to come in right away for the results of the blood test results. Right there and then I feared it wasn't good news. If everything was fine, surely they would have just given us the result over the phone., I thought. Our hearts raced faster than the speed at which we drove to the hospital. Our stomachs were in knots and our eyes glassy as we waited for Dominic, the Genetic Counselor with whom we'd be speaking.

(To be continued...)

In God's "Waiting Room" (Part 2: Journey into Parenthood)

When Jim and I got married nearly 15 years ago, in 1998, we both agreed we wanted four children - two boys and two girls, and in that specific order. I've always wished I'd had an older brother, so I wanted my children to have one...and of course, children must have siblings in the same gender to play with, especially close in age, so our next child must be another boy....also, a family is not complete until you have children in both genders, so next we'll have a girl...and so on went our dream. 

Well, things didn't quite happen as we had wished and hoped for.  In fact, we struggled with a life of infertlity for the first twelve years of our marriage. We struggled together as a couple, then secretly as individuals each going through the emotional and sometimes spiritual ups and downs at different times. Mostly it was a quiet and lonely struggle for us. We confided and found solace and support in friends going through similar pain, but in the end our true comforter and healer was our Father in Heaven. 

Then, as we found ourselves on the journey toward redemption from such pain and struggle, God "mysteriously" - but we believe providentially - gifted us with Eleanor in 2010.  I cannot fully explain what it is like to be given a gift you fully did not expect...it had taken a painstaking 12 years of searching, tweaking, and figuring out our life's purpose as a childless couple, and now we had to "shift gears" and literally figure everything out all over again...it was/is both scary and exciting. It felt  as though suddenly life came in full force and we are extremely grateful to God and we do not take anything for granted. 

In November of last year, 2012, we found ourselves pregnant for the second time! And thus began this season of our lives where we find ourselves, as Jim puts it, in "God's waiting room". 

(To be continued...)

In God's "Waiting Room" (Part 1: Keeping Memories)

It is with a bit of aprehension that I return here to write about life as it unfolds during this season. Some of you who used to (or still do) follow this blog may have received emails from us about the incredibly difficult predicament in which we as a family find ourselves. (More on this later...)

It is a very difficult time for us and most of the time we have no idea how to process things let alone clearly articulate our thoughts and especially our emotions...no one is ever prepared for such circumstances, there's no "dress rehearsal"...Actually, we are quite shocked and surprised at our "composure" and ability to carry on...it is truly only by God's grace and mercy! So each day, we find ourselves sitting in God's "waiting room", clinging onto Him who feeds us each morsel of nourishment we need to survive until His will for our lives is revealed, hourly, daily, monthly...

As much as I'd love to be able to beautifully and eloquently express myself here, I am not a writer. Heck, often times I have a difficult time expressing myself in person! Words always fail me...Also, I still have much to learn when it comes to living a grace-filled, graceful, and a gracious life.

I have come back to blogging to record my thoughts as best I can mainly in order for me to be able to come back and REMEMBER, especially God's daily mercies for us as a family during this time, but also to keep family, friends, and whoever may be interested, informed. So I hope that you read this without any expectations or judgement, but as a means for you to walk and pray with us in heart and spirit.

I'm still unsure whether I will post my blog updates on facebook...this may be the only time. So if you would like to follow and keep reading, please save my link name onto your reading list. Blessings.

To be continued....