This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.


sad wake-up call

i received sad news this week from a family who had previously contacted me through the "living with trisomy 13" website: the T13 baby they were expecting (and due with a week before jonathan is due) has already been born @ 23 weeks. it has been a very sad wake-up call for me. i guess i just expect the Lord to grant us our request that jonathan not be born before 36 weeks. we are not ready nor prepared to lose our precious boy before then. please continue to pray for this for us. however, we realize that God's timing is perfect and are submitted to that. please also pray for this family. i don't have permission to name them, but God knows who they are.

last night for the first time, jonathan snuggled up to the very top of my belly so that i could actually feel his little body. he seems to fit entirely into my hand. it was a very sweet time for me to love on him.


how you know people are praying

how you know people are praying, example #1,377:

when you meet someone for the first time ever and he recognizes your name from a prayer request at his church.

thank you, thank you, thank you for praying and for sharing our story with others.


theme of the week

a couple of nights ago, i was reading a passage in the devotional, "streams in the desert." i was just flipping through and came upon a story about sorrow meeting joy.

the very next morning when i went online, waiting in my inbox was a message a friend had sent me which included the lyrics to a song "when joy and sorrow meet" by avalon:

There’s a place of quiet stillness
‘tween the light and shadows reach
Where the hurting and the hopeless seek everlasting peace
Words of men and songs of angels whisper comfort bittersweet
Mending grief and life eternal where joy and sorrow meet
There is a place where hope remains
In crowns of thorns and crimson stains
And tears that fall on Jesus’ feet
Where joy and sorrow meet
There’s a place the lost surrender and the weary will retreat
Full of grace and mercy tender in times of unbelief
For the wounded there is healing, strength is given to the weak
Broken hearts find love redeeming where joy and sorrow meet
There’s a place of thirst and hunger where the roots of faith grow deep
And there is rain and rolling thunder when the road is rough and steep
There is hope in desperation there is victory in defeat
At the cross of restoration where joy and sorrow meet

later, in the car, i hear a song that included "joy" and "sorrow" in it's lyrics.

my sister then left the following comment on my previous blog entry:

Psalm 126:5-6 reads, "Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him."

The NIV Life Application Bible commentary says, "God’s ability to restore life is beyond our understanding. Forests burn down and are able to grow back. Broken bones heal. Even grief is not a permanent condition. Our tears can be seeds that will grow into a harvest of joy because God is able to bring good out of tragedy. When burdened by sorrow, know that your time of grief will end and that you will find joy."

another friend also shared with me the same exact verse, the same day.

i'm taking this as a not-so-subtle hint from You Know Who.


a different kind of hope

i will never forget the exact words our specialist told us after the first visit with him in which the ultrasound showed indications of a trisomy. “I’m sorry. I know this is not the news you had hoped for.”

no, of course not. our hope was that our son would be found completely normal, or with just an isolated defect at the very most. i had actually built myself up to believe that this would be the case.

after that appointment, i went home and researched all the things the specialist had found on the ultrasound. i knew before anyone told me that jonathan had trisomy 13. the next day, we received the phone call from the geneticist: the amniocentesis confirmed the diagnosis. we wanted to be assured, of course, that the amnio was absolutely accurate, that there was no margin for error. while ultrasounds can be misread, “the amnio results are 99-100% accurate.” they actually take cells from the amniotic fluid and grow them in a culture to study the individual chromosomes. in every cell they studied from jonathan, there was an extra 13. it was the worst case scenario.

what did i have to hope for? i have already mentioned in a previous blog post that a diagnosis of trisomy 13 is accompanied with years of research and statistics that all point to the same end result: a certain death.

“don’t give up hope!” and “doctors can be wrong!” we hear this a lot from well-meaning people. perhaps it appears that because of our acceptance and submission to jonathan’s eventual death shortly after birth, that we have given up hope. it’s been a complex issue to address for us. everyone knows a story of a child who turned out OK after being diagnosed with a disabling or fatal condition. additionally, it absolutely doesn’t seem fair that this should happen to a baby. what kind of God would allow it? it’s not easy to accept that this would be part of a divine plan.

i recently discussed this issue with a couple of friends, brainstorming the appropriate response while still being appreciative of everyone's encouragement. what we came up with was: while we absolutely believe that God could heal jonathan if He so desired and if it was part of His will, we still have to realize that for whatever reason or purpose God may have, trisomy 13 is one of those things defined by a common outcome. it’s the reality we must face, in order to be prepared for the months ahead.

so what, then, is our hope?
before i knew of jonathan’s condition, i had been slowly working my way through the old testament. it had been a hard read at times, trying to understand who God was and the purpose He had for a violent and rebellious people throughout ancient times. there were horrific stories of slavery, of war, of slaughter. my understanding of “who God is” was tested again and again in these stories. while i will never, ever claim to be a bible scholar…not even close…what i personally learned from these stories is that they are still relevant today. we are still a violent, rebellious people who commit the same horrific offenses. a people who desperately need forgiveness from a holy God. but i have also learned that God is much bigger than i sometimes give Him credit for, much bigger than the worst of humanity.

while i can never claim to even fathom what He is up to when He “allows” certain things to happen, i do know that God can still use our bad choices and awful circumstances, big and small, for His purposes, which are many times unbeknownst to us. He proves it over and over again throughout history. He also promises, for those who know Him and love Him, that all things work for good. (Romans 8:28.)

my circumstance is very, very minute on a scale of all the things going wrong in the world today. but i can see every day that God is involved in the very details of my life and jonathan’s life. He is not a God that suddenly becomes aware of circumstances and then reacts. He is as involved in the details of every grand-scale historical event as He is in our typical daily routines. He doesn’t make everything right in our lives all the time or promise us an easy journey, but He does give us everything we need, physically, emotionally, and spiritually, through His son Jesus. He gives us Hope when it looks like things can’t get any worse.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. ~ Romans 15:13

of course, we hope and pray for a miracle for jonathan. but if God lived in the box we tend to place Him in, then the miracle of complete healing for jonathan would be the one and only way we would hope or expect God to work, or that i could accept in order to for me to have joy ever again. yet we believe our God is able to do so much more than we are expecting, through our journey, through jonathan’s life, and perhaps in years to come. it would still be a miracle. it just might not be neatly wrapped up in the same package you might expect a miracle to be wrapped in.

Now to him that is able to do exceeding abundantly above all that we ask or think, according to the power that works in us. ~ Ephesians 3:20


the visit with our specialist

yesterday, we drove to pensacola for our follow-up with the specialist. the day for the appointment snuck up on me. normally, i would count down the days for an ultrasound, but i felt a little disengaged for this one. i was having a tug-of-war with my emotions: one moment i would feel thankful and the next, defeated. i felt that unless a miracle had occurred and our son was going to be found completely healthy, i was just going to be reminded that i was pregnant with a baby who would not survive. i wanted to feel excited to see jonathan and soak up the moment, but there was still a heaviness in the reality. thankfully, the very moment i saw my baby up on the big ultrasound screen, i melted. i became a proud mommy, watching my baby boy kick and move and suck his thumb. he was perfect. and i couldn't take my eyes off of him during the hour-long scan.

jonathan has grown so much in the 4 weeks since we last saw him. we learned he measured 20 weeks old (he's 21.5 weeks old) and he weighs 12 ounces. he also has managed to get into the head-down position, which is wonderful news! last time we saw him, he was breech and we were worried that he might stay that way, making for a more complex delivery.

the tech and doctor spent a long time studying jonathan's heart and listening to all the different valves and ventricles. our tense moment came when they listened to the heart beat. greg and i were a little shocked to hear the difference in the rhythm this time. 4 weeks ago, it sounded like a completely normal heart beat. this time, it sounded downright scary. the doctor acknowledged that there were several arrythmias, but that none of them were lethal in and of themselves. it was due to all of the enlarged holes between the arteries and the ventricles.

we left the visit very hopeful that jonathan has a great chance of making it to full term and even through delivery. thank you for your prayers already, and please continue to pray for this.

were were able to get lots of cute pictures of jonathan! he wasn't in the right position to get any good 4D shots, but we got plently of other good shots including some cute ones of his feet. i wasn't able to see his feet last time, so it was important to me to see them this time.

the first picture here makes me smile...he has the exact same spread-out big toe as kate did when she was born! we called it "the claw" for awhile, and she has since grown out of it:

and these are my favorite pictures: sucking his thumb!!

21 weeks along and counting!


turning guilt into glory

i have always imagined us as a family of four. i already had the baby girl of my dreams, so the addition of a baby boy would make us complete! ideally, my kids would be a couple of years apart: close enough in age to be good friends and far enough apart for my sanity. i also imagined that ideally i would be done having kids by the time i turned 32 (this year.) everything was falling into place, just as i had planned.

Many are the plans in a man's heart, but it is the LORD's purpose that prevails. ~Proverbs 19:21

i was so excited to find out we were pregnant again and our due date was the exact same due date i had when i was pregnant with kate. i immediately began praying for our new baby, that he or she would be normal and healthy. that was all i was asking for. if God wanted to make him/her cute and smart in addition to healthy, well, i was OK with that too.

as you can probably imagine, once i knew something might be wrong with our baby, i was flooded by waves of guilt. i searched my memory for anything i had done wrong while i was pregnant. was it the caffeine i had before i realized i was pregnant? was it the time i ate way too much seafood in one week? was it because i didn't take enough folic acid? was it because i was around cats? was it because i don't eat organically grown food? i mean, everything was suspect.

and then we learned that our baby's problem was chromosome-related. our baby was created from cells that carried faulty DNA. every single cell that makes up his tiny body carries 3 copies of chromosome 13 instead of the usual 2 copies, causing a chain reaction of chaos during the development of every significant part of his being. when you get down to the science of cell structure and multiplication into tissues, organs, and recognizable body parts, you begin to have a greater appreciation of the mystery of creation. it truly is a miracle how we are woven together, cell by cell.

i still didn't understand why this had happened to me. once i was able to see that there was nothing i did during my pregnancy to cause this disorder, i then began to feel like perhaps i had done something that deserved severe punishment from God. during that time, on two separate occasions, friends reached out to me with this specific verse that might as well have been Jesus talking directly to me:

As [Jesus] went along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’ ~John 9:1-3

i believe with all my heart that this verse was sent to me for my own reassurance during the days when i was full of guilt, of sadness, and of confusion. in fact, during this entire journey so far, every spiritual need of mine has been met in ways that can only be described as God using family and friends to encourage me. when i was in a fog and unable to muster the strength to search for the scriptures myself, i would receive the one i needed for that very moment via email. or, i would receive a book in the mail that contained the very spiritual food i was hungry for. when i was unable to pray for myself, i had people praying on my behalf. and, i have had friends tell me that they were praying for a specific need of mine before i had even expressed that particular need. the Lord had gone before me.

It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. ~Deuteronomy 31:8

today there is still that same comforting reassurance when i read John 9:1-3, however, now i am able to see the greater meaning. i realize that it's not about me at all. instead, i see there is a beautiful and grand plan in the works that involves the very life of my son. even this tiny being, who is considered medically "not compatible with life," has a purpose. while i may never understand the "why" or "why me" and the full purpose may never be known to me during my lifetime, i do know that God does all things for His glory.

For my thoughts are not your thoughts, neither are your ways my ways, saith the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts. ~Isaiah 55:8,9

Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways! “For who has known the mind of the Lord, or who has been his counselor?” “Or who has given a gift to him that he might be repaid?” For from him and through him and to him are all things. To him be glory forever. ~Romans 11:33-36

Worthy are You, our Lord and our God, to
receive glory and honor and power; for You
created all things, and because of Your will they
existed, and were created. ~
Revelation 4:11

by faith, i believe that God's plan for my life is far better than my own. i have long given up that plan of mine anyway. i am full of excited anticipation to see how God is going to use jonathan's life to "display His works."


addressing the elephant in the room

dear mr. elephant,

it's been almost 4 weeks now since your unexpected arrival, and we think you have overstayed your visit. you see, you take up quite a bit of space in the room. we're afraid you're making some of our friends feel...awkward. some of them probably don't know what to say to us when you're making such a spectacle of yourself. so if you insist on staying around, you could at least be nice enough to let our friends know:
  • it's OK to talk about the elephant. we know he's there too. in fact, if you pretend he's not there, it may make things even more awkward.

  • we realize the sheer size of the elephant alone may cause people to say awkward things. we know, because we have been there at one time or another. if it comes out wrong, we promise to remember it's the thought that counts.

  • once the elephant is addressed, he tends to decrease in size exponentially, and everyone becomes more comfortable.

  • we are still the same lauren and greg that we were before the elephant arrived. we just happen to have a third wheel now.

  • we smile and laugh just like we did before the elephant arrived. in fact, we can pretty much guarantee you that most of the time, we won't do anything like cry in front of you. well, unless you cry and then all guarantees are off.

  • we still like to have fun and hang out with our friends. and we need your friendship, your encouragement, and opportunites for fellowship now more than ever. a good day with friends trumps a bad day with the elephant everytime.

so, mr. elephant, we thank you for your cooperation in the matter. but if you continue to hang around much longer, we will have to start charging you rent.


lauren and greg



celebrating 20 weeks (last monday) with jonathan! he's been extremely active in the evenings, keeping me up pretty late. he seems more active than kate was. i'm enjoying every minute of it! i also seemed to have suddenly grown quite a lot bigger in the last 2 weeks. as of yesterday (20.5 weeks along), i have gained another pound! i am hopeful that this means jonathan is growing as well! we'll see on wednesday at our specialist's appointment.



just when i was wondering if anyone was actually reading this blog, i checked the stat counter i installed on the page that lets me know how many people visit. i was astounded and humbled to learn that up to 400 people a day from all over the world come and read about our journey with jonathan! that is amazing! thank you so much for coming to check out our blog. and especially, thank you for praying with us and for us.

we would love for you to "introduce" yourself by leaving a comment on any blog post. we are completely encouraged and blessed to read the comments and messages written to us. you can even leave an anonymous comment if you prefer, or send us an email. it is very much OK for you to talk to us about jonathan. we love talking about him.

many thanks,
lauren and greg


choosing life

since we have broken our news, some of the reactions we have gotten were quite surprising to us at first. most people have been completely supportive of our decision to continue the pregnancy, however, a few have expressed that they don’t understand why we have made that choice, or feel like we are not making the wise choice. for example, a distant acquaintance of greg’s, upon learning of jonathan’s prognosis, asked him directly: “well, did you think about having an abortion?” those reactions don’t surprise us anymore.

the answer is simply “no.”

however, my lifelong decision to be pro-life, personally and politically, had to be defended in my heart almost daily for a time. by this i mean that the issue hits closer to home than i ever imagined it could. before i can defend our decision to anyone, i must first be completely unshakeable in my belief that:

"Know that the LORD is God. It is he who made us, and we are his; we are his people, the sheep of his pasture." ~ Psalm 100:3.

"The word of the LORD came to me, saying, "Before I formed you in the womb I knew you, before you were born I set you apart…” ~Jeremiah 1:4-5

i confess, the first couple of days after hearing the diagnosis were so devastating to greg and me, that we both immediately expressed our desire to each other and to only a couple other people that we wanted to miscarry naturally as soon as possible, and we asked for prayer for that very thing. we thought at that time, from deep in our sorrow, that it would be the most merciful thing God could do for us and our baby. i was only 17 weeks along. it would allow us to avoid many potentially heartbreaking issues the further i progressed. it seemed like that would be the easiest and best solution. during those low, low moments that week, i also understood a little better why someone who would hear the words, spoken from an experienced doctor, “your baby has too many defects to live outside the womb” and “he has no chance at life” could fathom the idea to terminate. you see, there is no hope offered in a diagnosis of trisomy 13. all of the negative findings of the ultrasound or amniocentesis are laid out on the table very clearly, presented alongside all of the daunting research and statistics that has been gathered over the years. it is completely overwhelming in every way. so of course there is no hope given to any parent. the option to terminate sounds like the best way to go for most of these parents, and many follow through (up to 80% according to some studies.)

greg and i couldn’t spread the word of our baby’s diagnosis for almost 2 weeks while his parents were out of town, so we only shared with family, a couple of our closest friends, and our ABF pastor and his wife. we know prayers went up all day and all night for us. and an amazing thing happened during that those first few days: our hearts completely changed and the very next time greg and i discussed the life of our baby, we both had decided that we wanted him to live for as long as God desired, not how long we desired. if that meant carrying to full term, then so be it. we didn’t want to cut ourselves short of any blessing God would like to give us during this time, especially if that blessing meant holding our son while he passes peacefully away. there is so much dignity in that for our son: to be held and comforted by his loving parents in his final moments, rather than…well, i think everyone would agree there is no dignity in cutting any life short, but especially by elective termination.

so back to the “issue.” what we weren’t able to comprehend in our deep sadness those first couple of days was that God has a plan and purpose in everything, and even when it appears He made a mistake creating our son, we know He didn’t.

Psalm 139:13-16 says

“For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."

God created our son just the way he is. and for some reason, He specifically chose us to be jonathan’s parents, to care for him while he is alive, and to love and cherish him for the rest of our lives. what an honor!

and what an about-face from what we were feeling that first week. i want people to know more than anything that there has already been great freedom and even joy in our decision to just “allow” God to work in any way He desires in our lives and in jonathan’s life.


tenderness in the preparation

just three weeks in now, our journey has only begun. but already i can look back and see how God has been gently preparing me for what would be the most difficult trial of our lives. i've been playing these experiences over and over again in my mind. while many things were subtle, there were several things that stood out...

my introduction to fatal trisomies happened a few years ago when a young family from our church lost their precious baby boy to trisomy 18. i had never heard of it, and didn't really understand what it meant. and because i had not yet become a mother, i didn't comprehend the profound loss, i didn't know what to say, and didn't really know how to pray for them. but i never forgot their story.

shortly after that, while i was several months pregnant with kate, i stumbled upon the blog of a family who had just found out that the baby girl they were expecting was diagnosed with trisomy 18. i immediately became a follower of that blog, praying for this family, and shedding tears over the mother's words. because i was very pregnant at the time, i felt like i could at least relate to the fear, and maybe even a bit of the sorrow, of losing the child you had desired, prayed for, and already fallen deeply in love with. the mother spoke of the heartbreak involved in setting up a beautiful nursery for her baby, only to realize that her baby would never sleep in her crib, crawl on the carpet, or wear any of her clothes. while the intimacy of her heartbreak was difficult to absorb, it was absolutely necessary for me to read it. the strength, the courage this family had was amazing. they completely trusted in the Lord for their every need, for their daily dose of grace. they spent 8 wonderful days with their baby girl.

i thought at the time, my lesson from reading the blog was to not take anything for granted. i would like to believe that for the most part, i didn't: not the midnight feedings, not the dirty diapers, not the projectile vomit. i didn't mind being tired, and i never let myself feel frustrated during those sometimes difficult weeks of induction into parenthood. i reminded myself about how some mothers don't have the privilege to change dirty diapers before their little one slips away. when i wanted to complain, i always thought about this story.

several things have come up while i've been pregnant with jonathan. a few weeks ago, there was one particular night where i was praying for a couple of my closest friends. as i did so, more and more people came to mind who had some serious things going on in their lives. i needed to pray for them, too. and still, even more people with urgent needs came to my mind until i was overwhelmed. i took the opportunity to examine my life and saw how easy and comfortable it was at that moment. that was exactly how i liked it, and i didn't want to do anything that would require me to become uncomfortable. i became quite perplexed and embarrassed by this. while i was thankful for my blessings, i thought about how i wasn't doing enough to reach out to others who were struggling so much. i thought about how i had been "spared" thus far from tragedy or deep suffering. a few verses came to my mind about suffering, and how God used it for many different purposes to include refining, discipline, and testing. it is also a consequence of standing up for righteousness, and because we live in a fallen world. but mostly i realized that, especially as a christian, suffering was inevitable no matter the purpose God intended through it. it was a profound moment for me. that night i said out loud to God: "i am afraid you are preparing me for something...."

i will share with you, as i have with only a few of my closest friends, that during this pregnancy i have been very uneasy, even fearful. not like i have "known" that something was wrong all along, but just afraid that something could be. in spite of my fear, i never did really think that it would "happen to me." people have babies all the time, what were the odds??? it was enough, though, that i prayed about it constantly. i searched the Scriptures for what God had to say about my fear. i wanted to speak to my doctor about it. i wanted to do the blood tests. i had a greater need this time around to know that everything was OK with my baby. at our doctor's appointment on june 22nd, we were so, so close to knowing that everything was OK. the heart sounded good. i was measuring fine. and it was a boy! it wasn't until our doctor flipped to 4D ultrasound when she saw something very small that might be abnormal. if she hadn't been experienced enough to look for this particular thing, we would not know to this very day. so while it was a shock, it wasn't completely a surprise, if that makes sense. there was devastation, but relief in the knowing. my fear of the unknown had to become trust in the Known.

so here i am. my trisomy story may be a little different from the others, but only in the small details. there are similarities in the experience of sorrow, of dreams for our children not coming to fruition, and the knowing that our family will never be complete without that child. there has already been suffering in our grief. for greg and me, our grieving will likely be three-part: the grief we have already experienced over the news that our child will die, the grief to come when it is time for our child to pass away, and the grief we will have, year after year, wondering what jonathan would be like now.

therefore, i rejoice in the following promises:

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast." ~1 Peter 5:10

"And my God will supply every need of yours according to his riches in glory in Christ Jesus." ~ Phillipians 4:19

"...My grace is sufficient for you, for my power is made perfect in weakness." ~ 2 Corinthians 12:9

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." ~Romans 8:28

how real these truths have become to me. and how thankful i am that God has shown me great tenderness already in the way He prepared my heart for this very season of our lives.


back to normalcy

there is nothing like housework, cooking, and chasing a toddler around to snap you right back to normalcy. and i never thought i would be so thankful for the first two (i'm always thankful for my toddler!) yesterday i was quite the picture: barefoot, pregnant, not a bit of makeup on, and standing in the kitchen mixing a huge batch of chocolate muffins while spaghetti was simmering and the embroidery machine humming. once i noticed myself, i couldn't help but be amused. my, my, how things have changed over the past 2 years. but i know i'm right where i'm supposed to be!

so the past few days have felt quite "normal" again. apparently, the world does not stop just because i found out my baby will die. (although...i think some people's world stopped only because michael jackson died, which happened to be during the same week i received my amnio results. but i digress...) the laundry and dirty dishes still piled up. the groceries still ran low. and my sweet little kate still needed the same amount of attention now as she needed before the "news." but despite the feeling of normalcy again, is the one thought never far from my mind: my life, OUR lives, will never be the same again. i remind myself it's all part of God's plan.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11

jonathan update
july 3rd (6 days ago) we met with my OB to discuss our diagnosis and what steps to take next. another blessing has been my doctor. she is not only skilled and experienced, but she is a christian and fully supports us and our decision. and she has been praying for us. how wonderful is that? she spent a lot of time with us, patiently answering our long list of questions all while her waiting room was full. we were very thankful. during this visit, we learned that jonathan is a little over a week behind in growth, which is to be expected with a T13 baby. not too bad considering he is still growing. also, i have only gained 2 pounds this entire pregnancy, which (to me) is unusual. i'm showing, but i'm not that big. we also got to listen to his heartbeat, which was a strong 154 bpm. it sounded completely normal although we know otherwise.

we will be meeting with our high-risk specialist again on july 22nd. we hope to learn more about jonathan's heart condition, as well as any other information we can get. while we don't want to get overly concerned with all the details, because we know that God can heal any or all of jonathan's defects, we do need to know quite a bit about our son to make sure we make the best, informed decisions once he is full term. please pray that he makes it to at least 36 weeks, and without my health being compromised. i have read there is only a 20% chance of him making it to full term. it really would be such a blessing for us to have him as fully developed as possible, even breathing, when he is born.


thank you

greg and i want to express our sincere "thanks" to everyone for their overwhelming support and prayers. we have received many emails, messages, phone calls, and cards that have been so encouraging to us. we have had gracious offers of help with kate and for meals. we are truly thankful for your love and prayers. please know that the prayers for us are indeed working and that greg and i have many, many more good days than bad. we are doing better than we ever thought we could in the midst of such devastating news.

while it is hard for me to have to walk through such a difficult trial in a very public way, i feel that it is very important for everyone to know what we are going through. journaling and blogging has been a huge release for me already. during those nights when sleep is far from me, if i can transfer those thoughts running through my head into some other medium, then i feel like i can just let them go and find rest. it literally clears my head. therefore, this has become a place for me where tears fall as i write, and where healing happens with every drop.

at first i felt the reason everyone should know about our son was because i wanted to avoid the awkwardness of having to answer seemingly innocuous questions from people who were unaware of our circumstances. as i continue to grow bigger each month, i am sure to hear: "is the baby's room ready?" "are you going to have a baby shower?", etc. i guess i was afraid that those types of questions would pierce through the thick skin i selfishly desired to grow for protection over the coming months. while i know i will face questions like that no matter what, i feel the purpose in why i want everyone to know has changed. i know i will not be the last person i know of that will be confronted with having a child who has been given no hope of survival. i want people who are facing what we're facing to know they are not alone. we have surely not been alone in our walk. i sincerely pray that we can be used in such a way to help others, now or in the future. even if that means being transparent with our struggles and heartbreak for now.

a great example of families reaching out is this website i was so blessed to have found that first week: this site is dedicated to families who decided to continue their pregnancies despite the odds they were given with a diagnosis of trisomy 13. i poured over the hundreds of stories of families who were just like mine, going through the very same things we have or will have gone through in the next few months. it was so encouraging to see how God was at work in their lives through their circumstances, just like He is already doing in ours. if you are interested, check out the "treasured memory albums" or the "prenatal diagnosis family albums" on their site. and have tissue ready. ****however, to clarify something: while some of these babies live for much longer than expected (up to a few years even), our jonathan was diagnosed with Full Trisomy 13, which is much more severe than the Mosaic or Partial diagnoses, which sometimes do not have as detrimental an effect on the development of the baby.

my encouragement today: "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." - Romans 15:13


our gift from God

that first week, it was very hard for me to sleep. i saw the numbers 3:30 on my alarm clock almost every night. my brain was going full speed ahead while my body was completely worn out.

those nights were the hardest.

it was during one of those nights that i went over boy names in my head. greg and i knew we needed a name with significant meaning because this was going to be a very special baby. we didn't have a book of names yet to look anything up, so we hadn't talked much about names we liked yet.

but as i lay there, a name literally popped in my head from nowhere: "what about Jonathan?" i liked the name a lot, but it wasn't necessarily a name i would have picked out originally. i thought about jonathan of the Bible: he was a young man of courage, strength, and determination who looked to and relied on God. i decided to look the meaning of the name up on the internet first thing in the morning.

so imagine my pleasant surprise when i found that the name means "Gift from God." i can't help but believe that this name was meant to be.

we are still working on a middle name.


fairy tale interrupted: the first week

it was Monday, june 22, 2009. that night/early morning i did not sleep well. i was up at intervals starting at 4 am and finally gave in and got up at 5:30. i’m sure it was because of the excitement of having our routine ultrasound that morning in which we hoped to find out the gender of our 17 week old baby. my appointment was early, and of all mornings, kate decided to sleep longer than normal. i set out her breakfast and then paced around until i finally went in to wake her up. she is so adorable when she sleeps. i stood there beside her crib for a few minutes, caressing her back before she finally stirred. she popped up into my arms and rested her head on my shoulder and we held each other for awhile. my morning was off to a wonderful start.

fast forward a couple of hours. it’s a boy! i’m in shock. i really thought i was having a girl. and then our doctor sees something on the ultrasound that caused her to refer us to a high-risk specialist, just to make sure there was nothing else going on. our hearts became heavy, but we were still hopeful that our son was going to be OK.

by wednesday morning, our hopes for a normal, healthy baby were dashed when one “marker” after another was discovered during our level II ultrasound, namely several “major structural heart defects.” i had an amniocentesis done that same day and learned the official results from that on Thursday, only a day later.

our worst fears were confirmed. the diagnosis is Full Trisomy 13, an extremely rare chromosome disorder which is not compatible with life outside of the womb. in fact, it is the worst condition a fetus can have and still somehow live and grow in the womb. if he survives the pregnancy, he is not expected to live long after birth. we were told by the genetic counselor that in our case, it probably wasn’t a hereditary condition, it was more of a “random” occurrence (up to 1 in 25,000) that took place at conception.

needless to say, it was the worst week of our lives. we went from being excited to finding out what we were having to realizing that we weren’t going to have a happy ending for now, in fact, we were in for a very rough road ahead.

what happens now
we believe that God alone is the giver of life and it is He who takes it away. when we told the high-risk specialist that there was no other option for us but to continue the pregnancy, he assured us in our decision and told us that every couple that he has ever known in his practice who has made this decision, were blessed and found much joy in the end result. regardless, we are trusting in God’s plan and provision for us. if He chooses to bless us through this, then that is great. either way, we know it is the right choice for our child. our prayer is that we would be able to hold him and to love on him, if only for a few moments.

we have many follow-up appointments scheduled in which we will find out more information each time we go. because our baby is so small now, the size of his heart is only the size of the fingernail on your pinky finger. it’s hard to predict exactly what is going to happen until the baby grows in size and the doctors can see it better via ultrasound. we have decisions to make as to where we will deliver, what is best for our baby, and so on. we also have funeral arrangements to make. never in my wildest nightmare did i ever think i would be doing something like that for my child.

how we are doing
some days it doesn’t seem real. both greg and i have said many times that we’re ready to wake up from this bad dream. watching that fateful ultrasound while it was being conducted last week made the situation seem distant and outside of me, if that makes sense. at that moment, it was taking place on a computer screen, not in real life. but when i feel the baby kick or move and it snaps me right back to reality. he is here. he is with me. this day may be all that he has for now. no matter how bad of shape he is in, i still have to take care of him the best i can and love him like he was perfect. he has no other mommy but me.

so….we are doing OK. we have our moments of disbelief, of extreme sadness, of numbness. but most of the time, we are completely submitted to trusting that God will bring us through this just fine, if not stronger than ever. it is not something that we can do on our own; we know we are being uplifted all day long in prayer. our new reality is that we cannot change the circumstances we’ve been placed in. so our choice in how to react is to make the best of them: to celebrate the life of our son, no matter how short, to be thankful and to praise God for his blessings and provisions, and to pray that others will be drawn to the Lord through the life of our son.