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.


God is still good

i'm sad to report that baby michael was born at peace last night around 9:35. his parents' utmost concern for him was that he did not suffer, and they have assurance that he did not. please continue to pray for this grieving family.

when God chooses not to answer a prayer, or answer a prayer in a way that is different than what we think it should's very easy to struggle with the "whys." i admit, i wonder why the Lord would take michael before he was born.

but after examining who God is....

He is righteous and just: "He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is he." ~Deut. 32:4

He is perfect: "As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in him." ~Ps. 18:30

He is full of grace: "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 Pet. 5:10

He is merciful: "The LORD, the LORD, the compassionate and gracious God, slow to anger, abounding in love and faithfulness..." ~Ex. 34:6

He is love: "...God is love. Whoever lives in love lives in God, and God in him." ~1 John 4:16

He is good: "For the LORD is good and his love endures forever; his faithfulness continues through all generations." ~Ps. 100:5

He is truthful and faithful: "God did this so that, by two unchangeable things in which it is impossible for God to lie, we who have fled to take hold of the hope offered to us may be greatly encouraged." ~Heb. 6:18

He is wise: "Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out!" ~Rom. 11:33

He is all-knowing: "All the days ordained for me were written in your book before one of them came to be." ~Psalm 139:16

and, we cannot possibly begin to fathom why God does what He does: "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." ~Isaiah 55:9

by faith we must accept His ways, but knowing these wonderful truths about Him makes it that much easier.

so no matter what the answer to our prayers for michael could have been, God is still good...


update on baby michael

thanks so much for praying for the family i mentioned in the below post! she has been in labor all day but not much progression. right now it looks like baby michael will be born tomorrow sometime.

please keep praying, especially that michael would be born alive. a long labor might be tough on the little guy. i'll post an update when i get one.

with love and gratitude,


please pray

i have learned that when you walk through a trial, the Lord is very gracious to go before you. He doesn't let you go through it alone.

i have seen this very evidently in our journey with jonathan, as God placed special people in our life that had experienced similar, recent loss.

six months before our diagnosis, a sweet friend of mine lost her baby girl at 22 weeks.

back around the time that kate was born, good friends of greg's lost their son shortly after birth.

and a little over three years ago, friends of ours from church lost their baby boy to trisomy 18.

each of these families has provided much encouragement and support to us over the past several months. they understand exactly what we are going through.

recently, i was talking with my friend who lost her baby girl about how the Lord had provided people like this in our lives to help us through. my friend, too, had incredible support from someone who had lost a baby shortly before she did.

well, i want to share this story and ask for your prayers for a special family.

early last spring sometime, i was at the destin commons playground with kate and met a very nice woman who was there with her two kids. she asked me about kate's dress, which i had made, and before i knew it she had made a couple of dress orders. and that was the start of our friendship.

she has been an amazing prayer warrior for our family after learning of jonathan's diagnosis, and was also the one who blessed us with the prayer/wish frame that we used at jonathan's celebration of life and at the funeral. (pictured)

tomorrow, her sister-in-law, who is carrying a trisomy 18 baby boy, is being induced. my doctor is also her doctor. she will deliver at the same hospital we did. i know she will receive the best care in this area.

please pray that her baby boy will be born alive. they long to meet him and to hold him, just like we did with jonathan. please pray for an easy delivery and for much peace for her entire family. please also pray for her doctor and the nurses that will be taking care of her.

thinking of what she will go through tomorrow brings back those mixed feelings of sorrow and joy. it is a hard, hard, journey but we "can do all things through Christ who gives us strength." Phillipians 4:13. only because of Christ did we make it through. and it will be the same for this family.

thank you for praying!


virtual book club, anyone?

thanks to the thoughtfulness of my husband this christmas, i am now beginning the book "If God is Good" by randy alcorn. it's about faith in the midst of suffering and evil. (yes, i wanted this book.)

here is the brief synopsis:
Every one of us will experience suffering. Many of us are experiencing it now. As we have seen in recent years, evil is real in our world, present and close to each one of us. In such difficult times, suffering and evil beg questions about God--Why would an all-good and all-powerful God create a world full of evil and suffering? And then, how can there be a God if suffering and evil exist?

These are ancient questions, but also modern ones as well. Atheists such as Richard Dawkins, Christopher Hitchens, and even former believers like Bart Ehrman answer the question simply: The existence of suffering and evil proves there is no God.

In this captivating new book, best-selling author Randy Alcorn challenges the logic of disbelief, and brings a fresh, realistic, and thoroughly biblical insight to the issues these important questions raise. Alcorn offers insights from his conversations with men and women whose lives have been torn apart by suffering, and yet whose faith in God burns brighter than ever. He reveals the big picture of who God is and what God is doing in the world–now and forever. And he equips you to share your faith more clearly and genuinely in this world of pain and fear. As he did in his best-selling book, Heaven, Randy Alcorn delves deep into a profound subject, and through compelling stories, provocative questions and answers, and keen biblical understanding, he brings assurance and hope to all.

i found these wonderful tidbits in this book, which i can completely relate to in our experience with losing jonathan, and that i'm sure many other people can as well:

"God knows what good may arise from a disease or disability and what evil could come if that disease or disability were withheld or healed." (p. 232)

alcorn continues to share about a young woman born with hypertelorism, a facial abnormality and quotes from her website:
“I don’t really like the phrase “birth defect” – it contradicts my theology. A “defect” implies a mistake and I believe that God is sovereign. If he had the power to create the entire universe according to his exact specifications, then my face was certainly no challenge for him! If God is loving, why did he deform my face? I don’t know – maybe because with a normal face I would have been robbed of the thousands and thousands of blessings that I have received because of my deformities. It seems odd, but usually our greatest trial is what most molds and shapes us. It gives us character, backbone, courage, wisdom, discernment, and friendships that are not shallow.” (p. 232)
alcorn also quotes the mother who wrote:

“I believe that God chose this sorrow for our family. And surprisingly, what I first felt was a sorrow, I see now as a joy. In all sincerity, if given such a chance, I would not change the journey our family has traveled. We have all learned, we have all grown, and we love the Lord and His sovereign direction for our lives.” (p. 232)


one thing we have heard people say to us over and over again that they felt that we did not deserve to lose jonathan, and that it just wasn't fair that it happened to us. however, i have believed from the beginning that jonathan's life was no mistake. his short life was ordained long, long ago by a God who knows the good that was and is to come of it, even though many will not understand why this happened.

two and a half months later, i still believe this and especially now that we have seen some of the fruit of his life. seeing the good that has come from this journey given us much to be joyful about in spite of the sad circumstances. every day we become stronger in our faith and in our determination to trust the sovereignty of God. i just don't know how people make it through tough times without any Hope.

so....all that to say that i'm really looking forward to reading this book. i need a fresh biblical perspective on the suffering we've experienced lately. (and i'm especially glad that someone else did the years of research and wrapped it all up in a tidy package. is that wrong?)

if anyone, especially other T13 moms, would like to join me in reading the book "together," let me know. i'm sure i'll be occasionally remarking about the book here and i welcome your comments and messages.


remembering jonathan at christmas

i've been contemplating which thoughts to post here lately. our journey with jonathan has certainly had it's share of mountains and valleys, and the same is true of our time of grieving for our loss. most of the time my posts are constructed of thoughts over a period of days but lately my thoughts are scattered all over the place and cannot be pieced together to make any sense. on a day where i might feel sad and consider writing one thing, it is countered the next day with joy and i feel like writing something else.

this thing called grief can be very paradoxical at times.

it is how i feel with christmas being right around the corner. sad that there are four stockings hung and only three of us to enjoy them. sad that the only tangible hint of jonathan anywhere is the ornament on our tree that bears his footprints. sad because we are experiencing another "first" without our baby boy. i admit, these thoughts take away a little of the sparkle out of the season for me.

and yet, every day it seems, my spirits are gently lifted in some way. to this day, we still get a card in the mail here or there with someone telling us how they are praying for us. or i receive an encouraging email from someone, telling me how much jonathan's life has touched them. it always comes at the right time.

isn't that just like God to do that?

it is so important to me that jonathan's memory continues. i will always have the memories of my pregnancy and then the 40 minutes we had with him. i get to say that i have "two kids." just because jonathan's life was short does not diminish the fact that he lived. but, i don't get to make any new memories. and i suppose i'm just like any other proud mother out there who enjoys talking about her kids. i like talking about jonathan. and i'm thankful i have friends who allow me to, and sometimes even bring it up first.

greg and i said from the beginning of this journey that we would keep jonathan's memory alive in our family. kate will continue to be a big sister. any future baby will know about his/her big brother. we will continue forward in a positive way, celebrating milestones of life as if jonathan was still with us. except we will just bring the celebration to him at his resting place.

i just bought a small christmas tree that in years to come our family can decorate together and place at his grave. it's a small, small way that we can include him each year. i imagine creating lots of handmade ornaments (mostly by kate) and decorating it amidst lots of joy and laughter, year after year. for it won't be lost on us that jonathan is having the ultimate christmas celebration with Christ the King himself.

how it brings me such joy that jonathan is still being remembered and treasured. as a parent who has lost a baby, i know i am not alone in my deep desire that my child will not be forgotten.

isn't that how God surely feels about His Son?

thank you for allowing me to remember them both here.

merry christmas to you!


my mom found this baby angel ornament at target....note that it says "gift from God" at the bottom. that is what jonathan's name means. isn't it perfect? by the time i got there to buy several to give as gifts in remembrance of jonathan, i couldn't find any more.


missing her brother

like i mentioned in this previous post, kate is very aware of where we are, even when we're driving in the car.

driving to a friend's house this morning, we passed heritage gardens, where jonathan is buried.

this was our conversation as we passed by:

kate: jon-than? hi jon-than!

me: you mean jackson? (i was confused at first, since jackson was the little boy we would be seeing that morning.)

kate: jon-than! please?

me: aw, maybe next time we'll go visit jonathan. you miss him, don't you?

kate: baby jesus.

me: yes, jonathan is with jesus.


everytime we go visit jonathan's grave, kate has the best time. she actually looks forward to going. and when it's time to leave, she always says the same thing: "bye-bye, jon-than! miss you!"

i'm so thankful that my little girl has such a tender heart towards her baby brother who she only met once. i pray she never forgets him.


a must-read

i have a new favorite author and his name is randy alcorn. i just finished his book, "heaven", and i'm telling everyone about it.

for me, it gave great perspective during these past few difficult months. there is that cliche that people use when you go through a devastating event: "with time, it will get better." or, "this, too, shall pass." reading this book was like i had pushed a fast-forward button for my grieving time for jonathan.

in a nutshell, (the book is 500+ pages long, but don't let that scare you) isn't it true that when you're in a situation that you know is temporary, it makes it a lot easier to get through it? when there is a light at the end of the tunnel, people can endure extraordinary difficulties for a short amount of time. for me right now, it is the death of my baby boy. for someone else, it may be a difficult marriage. or taking care of a family member who is unable to care for themselves. or, it may be a missionary who has given up all material possessions and family to live in a jungle far from home in order to share who Jesus is.

i get that now.

i believe that it is a better understanding of heaven and what awaits us there, that allows for someone to be able to gracefully endure the hardships of this world that we all will face at some point. it is the understanding that our life here in this world is but a fleeting moment while our time in true paradise lasts for an eternity.

"Behold, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind. But be glad and rejoice forever in what I will create, for I will create Jerusalem to be a delight and its people a joy. I will rejoice over Jerusalem and take delight in my people;the sound of weeping and of crying will be heard in it no more. Never again will there be in it an infant who lives but a few days, or an old man who does not live out his years..." Isaiah 65:17-20.

alcorn does a great job of sticking to the scriptures and making sure that everything he says is biblically-based and not opinion or flippant inference. he covers all the questions people have about heaven, including what we will know and learn, what our relationships with each other will be like, what we might do in heaven (will we be bored?) it's a must-read for everyone, believers and unbelievers alike, and especially, in my opinion, moms like me who need to know more about this place where our babies are and what it will be like to see them again.

if you read it, or have read it, i'd love to hear your thoughts.


2 months

my sweet jonathan is celebrating his 2-month birthday with the angels today. i imagine that there is no better birthday party than one celebrated in heaven, and that the happy birthday song does not sound any sweeter than when sung by angels.

i'm praying for all the mommies i know out there who have also lost a child or who are carrying babies who have received a fatal diagnosis. whether you have contacted me by email or through this blog, you are on my mind today (and often.)