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.)




jonathan's due date was today. i didn't think this day would bother me so much until it actually arrived. i spent the day decorating my house for christmas, trying to keep my mind off the fact that a few months ago i believed i would be bringing home a healthy baby about now. how different things wound up being.

over the past couple of months i've noticed that kate, who turned two yesterday, has become more and more observant of her surroundings. when we're in the car, she knows where we are going by certain landmarks. about a month ago, i told her i was taking her to the park. i usually take her to a certain park, but on that day, i was taking her to a different, better one. as i drove out of the driveway and into the street, she burst into tears, crying, "park! park!" apparently, i had not driven the direction she was accustomed to going when i normally took her to the park. i spent half of the drive there trying to console her and convince her we were still going to the park, it was just a different and better one!

this is how i tend to react when things in my life go in a different, seemingly wrong direction.

except it's God at the wheel and i'm in the backseat trying to explain to Him that He made a wrong turn.

He convinces me with:

"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." ~Proverbs 3:5-6

"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

so today, as i was pulling out decorations and hanging up wreaths, lights, and ornaments, i came to the box that held our stockings. i had just bought them last christmas, and i knew i had purchased four matching ones since i was hoping for a new baby this year. my heart sank a bit because for now there would be a stocking for jonathan, but i wasn't sure i could find another matching stocking for a future baby. but as i opened the box, to my amazement, there were five stockings in the box. then i remembered that i had purchased one extra one, "just in case." my heart became full of joy and praise. God knew that one day we would need five stockings.

my mantle looks so festive with lights, candles, and the four matching stockings. i even imagined what it might look like next christmas with the five stockings, if that is part of His will.

i can't begin to fathom what kind of plans God has for my future. but i do know they are good. so i am just going to sit back, relax, and enjoy the ride.



i wanted to share this picture that i took tonight of the sunset over navarre beach. what a beautiful taste of all the splendor jonathan must know! i'm so thankful that the Lord shares these crumbs of heaven with us, that our appetites might be increased for our true home.

(double click to open a larger screen)

"The Mighty One, God, the LORD,
speaks and summons the earth
from the rising of the sun to the place where it sets.
From Zion, perfect in beauty,
God shines forth.
Our God comes and will not be silent;
a fire devours before him,
and around him a tempest rages."
~Psalm 50:1-3


grace and thanksgiving

“All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.” ~2 Corinthians 4:15

the birth of my daughter just after thanksgiving two years ago has given this time of year even more meaning for me. i remember that particular thanksgiving day, hoping that i would eat myself into labor. instead, i was induced a couple days later and left the hospital with my arms full of 8 pounds, 4 ounces of beautiful, healthy baby girl. our lives had changed for the better and because of her we had that much more reason to be thankful.

since jonathan’s and kate’s due dates were the exact same date (november 30), my pregnancy with jonathan was measured against my pregnancy with kate from the beginning. i compared my weight, the babies' measurements, and how i felt during each pregnancy. we would also share special times of the year together, just as i did with kate. for instance, both babies were 12 weeks old when they flew on an airplane to st. louis to visit family. both babies were 15 weeks on our anniversary. both babies were 25 weeks on my birthday. we would share many holidays and special times with family, such as thanksgiving. or so i thought. i can’t help but think that jonathan should still be here with us for thanksgiving this year. but even though he’s not, i still have a 4 pound, 3 ounce reason to be especially thankful this year.

however, i could say that 2009 has been an extremely hard year for us. i could dwell over my grandmother’s passing early this year followed by the eight months of being consumed with a very complicated pregnancy and then losing our baby boy to a cruel disorder. i could be angry that God in all of His infinite power, chose not to heal my son. i could say that that alone would be enough difficulty for one year, but then add to it almost losing a pet (twice), less than a month after jonathan died and the related expense with keeping her alive and well…i could say i’m ready for 2009 to be over with.

this is the attitude i’m often tempted to abide in. it’s not pretty.

i know i am not alone in having a rough year. in fact, there is a lot of suffering going on in the lives of people i know right now: cancer. life-threatening surgeries. car accidents. financial burdens. infertility. divorce. death. the list goes on.

i’ve written here before that when you’re deep in the pit of despair, things become a lot clearer. some of you know what i mean. when i was there, i was able to see that the issues i felt made my life difficult, pre-diagnosis, were nothing more than petty annoyances. yet they caused me to take for granted many blessings in my life. post-diagnosis, i caught myself many times longing for my “old life” back, wishing there was some way to turn back time to the days where things were going pretty well in life for me, and to be more thankful for every moment.

fresh out of the pit, i still see pretty clearly these days. to believe anything other than the fact that i am blessed and have so much to be thankful for would completely dishonor jonathan’s life and depreciate the amazing grace that has been bestowed generously to me during our time with jonathan.

thanks to jonathan, i know better than to allow myself to believe that God is anything but good, even when it appears He allows bad or tragic things to happen. among the many lessons my time with jonathan has taught me, i have learned that when you’re in the darkest hours of your life, His grace is readily available and will provide for your every need.

"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." ~Hebrews 4:16

"And God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work." ~2 Corinthians 9:8

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

i am thankful for many of the same blessings year after year, but this year the blessings take on a bit more significance:

i am thankful for my husband. you don’t know what your marriage is made of until you are tested with a trial of life and death proportions; where the decisions you make together will not only affect the rest of your lives, but that you will both be held accountable for one day before God Himself. where if there is any strife or contention between the two of you, it becomes like a thread unraveling, eventually giving way under the pressure of being pulled in two different directions. i am so thankful that this is not our story. i am so blessed that when we were knit together in marriage 6-plus years ago that our most valuable asset we had in each other was our trust and faith in God. this is a cord not easily broken (Ecclesiastes 4:12.) greg and i didn’t have decisions to argue over. we only had each other to lean on while the decisions for jonathan’s life were left up to the Lord. our time with jonathan has only strengthened the bond we share.

i am thankful for our families. greg and i are blessed as it is to live so close to our parents, but to have their unending support in so many ways is invaluable. both kate and jonathan are so loved by them, and there is nothing better than watching your parents completely adore and care for your children. we are so glad that they were all able to meet jonathan shortly after his birth and enjoy that time together as one big family.

i am thankful for good health. my physical and emotional recovery has been good. our family is also doing very well.

i am thankful for my church. when i began attending about 8 years ago, i had no idea that i would meet my husband there, meet true lifelong friends there, and develop a much deeper relationship with the Lord thanks to my church’s careful devotion to teaching scripture. we know that our pastors and church body were faithfully praying for us, and they certainly bent over backward for us by putting together an amazing funeral for jonathan. our church family made certain we were fed well, that kate was looked after when necessary, and that basically any need of ours was met. their love for us and service to us is a true testimony of what the body of Christ looks like in action. what a blessing to be at the receiving end of it during our time of need.

i am thankful for my friends. when we first embarked on our journey, someone told me that during our trial, we would find out who our “true” friends are; that because of the difficulty and potential awkwardness of our situation, some people would not know what to say and just avoid us altogether. this has (mostly) not been the case for us. we have been blessed with many true friends who supported us in so many ways. we have even been contacted by old friends we haven’t seen in years who have offered their support. we have also gained some new “friends” through this blog and through the “living with trisomy 13” website, who have prayed for us and supported us.

but mostly this thanksgiving season, i am thankful for grace. grace means unmerited favor from God, and we certainly have been showered abundantly with it.

"But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God— not by works, so that no one can boast. For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do." ~Ephesians 2:4-10

it is "by grace" that through jonathan’s life, i can better understand 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. though the trials and tragedies we face may sometimes cause us to question God’s goodness and purposes, we must be steady in the belief that God knows what we don't, and none of this changes who He is.

“Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will.” ~Romans 12:2

it is also truly “by grace” that i can be thankful in the midst of what most people consider to be an unimaginable tragedy. that i am able to get out of bed each day. that i am able to smile, laugh, and count my blessings.

“From the fullness of his grace we have all received one blessing after another.” ~John 1:16

may you also have much to be thankful for this season.



greg and i have tried our best to be as open as possible about our journey with jonathan, partly so that we would avoid some potentially awkward situations. well, last week i had my first really awkward moment since i've "re-emerged" back into life without my pregnant belly. i went into one of my favorite stores where i know most of the ladies who work there, and i just figured that all of them knew about my situation. sure enough, one of the ladies excitedly asked me where my new baby was. i was put on the spot. i fumbled with my words, doing the best i could to gently explain what had happened. as she stood there with her mouth gaping open and tears in her eyes, i realized i probably had ruined her day. and what wasn't the first time and surely won't be the last, i became the comforter.

note to self: don't go there anymore! be better prepared!

well, i still haven't prepared myself for the next time, hence my complete avoidance of a certain sweet lady at the walmart fabric counter today. ( i didn't really need that fabric anyway.) i am completely OK with my story and how it turned out. other people may not feel that same way. i'm just not sure i want to face ruining someone else's perfectly good day when all they wanted to know was how my new baby was doing.

"jonathan is doing great! better than great, actually!" is what i really want to say. because i know he is.


my mom asked me the other day how long i was going to keep blogging here. i have been thinking about that too. i guess as long as i have something to say about jonathan or my time with him, then i will say it in this forum. this was always intended to be his "baby journal" anyway. blogging/journaling has been very healing for me and i'm very glad to share his story with anyone who might read it. i know that reading other moms' blogs, especially T13 moms, has comforted me on my own T13 journey. i pray that perhaps my blog would do the same for someone one day too.

recently, i have been saddened to hear about the deaths of several other T13 babies who i have prayed for and whose stories i have followed on the living with trisomy 13 website. having been there myself just over a month ago, the grief and sadness these families must feel is still very fresh for me. i haven't cried for jonathan lately, but i have cried for these other precious babies. i have also felt joy in hearing how beautiful these stories turned out. the words these moms have written in their blogs and memorial albums have truly resonated with me.

one thing i have learned is that everyone grieves differently. there is no guide for what's appropriate, and i think this is a good thing. i have mentioned in a previous blog that i feel somewhat guilty for grieving more for jonathan while he was still alive than after his passing. i have also realized that there is an expectation of me, of how long i should grieve and what my grieving should look like. i was beginning to think that maybe something was wrong with me because i haven't cried for jonathan in a long time. or maybe, i just didn't want other people to think something was wrong with me because i was....happy.

this past sunday, i was released from my guilt when i read about king david's grieving for his infant son in 2 Samuel 12:21-23:

"His servants asked him, "Why are you acting this way? While the child was alive, you fasted and wept, but now that the child is dead, you get up and eat!"

He answered, "While the child was still alive, I fasted and wept. I thought, 'Who knows? The LORD may be gracious to me and let the child live.' But now that he is dead, why should I fast? Can I bring him back again? I will go to him, but he will not return to me."

there are so many more interesting details to this story about king david and his infant son, but the part that stands out to me is that david knew that continuing his intense grieving would not bring his son back to life. he loved this child, that was apparent. praying for the life of this child was more important to him than eating. but he had accepted God's will for the death of his son. when he said, "I will go to him, but he will not return to me" means that david knew he would eventually join his son one day in heaven. it apparently brought him the peace necessary to carry on with life after the death of this child.

this is me. and i am very comforted to have read this passage.

if you have also lost a child and this is not you, that's OK too. everyone is different. cling to the truth that the Lord promises to comfort His children:

"For the LORD comforts his people and will have compassion on his afflicted ones." ~Isaiah 49:13

"As a mother comforts her child, so will I comfort you." ~Isaiah 66:13

"I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow." ~Jeremiah 31:13

"Blessed are those who mourn, for they will be comforted." ~Matthew 5:4

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows." ~2 Corinthians 1:3-5


dear jonathan

my sweet jonathan,
i have been wanting to write you a letter for awhile now. however, i know for sure that my words will never be adequate to express what you mean to me. i can only hope that when you were welcomed into heaven, the Lord showed you the depth of our love for you and what your life has meant to us and to others.

when your daddy and i first learned of our pregnancy with you, we were so excited. our lives were going to change because of this wonderful blessing. little did we know!

i made your sister, kate, a shirt that said, "i'm going to be a big sister!" and she wore it to break the exciting news to your grandparents. everyone loved you from the moment they knew you were to be. we wondered what you would be like, if you would be a boy or girl? would you have blond hair and blue eyes like your sister? were you going to have more of mommy's or daddy's personality? we began planning for you, and dreaming about your future. from the very beginning of your life, we knew that you were chosen for our family and we couldn't wait to meet you.

at only 17 weeks old, the story of your life changed drastically in just one day. as we watched you on the ultrasound screen dancing, kicking, and so full of life, they explained to us that something was wrong and you would probably die. the road before us had suddenly forked and there was a decision of great magnitude and consequence to be made about which road to travel. one road was very wide and smooth but led to death, and the other was very narrow and rocky, but led to life.

sweet baby, please know that there never really was a choice. we knew the decision whether you lived or died did not belong to us.

we came to terms with the realization that the story of your life would be different and shorter than most. in our quest for understanding, we put away the pregnancy and baby books and began studying the scriptures. in our acceptance, the Lord showed us that His plans were no less greater for you.

dear jonathan, do you know your life has made a difference in this world?

did you know that from the moment we told others about your diagnosis, family, friends, and even strangers were on their knees praying for you? did you know that our friends and family told their friends and families, and therefore a huge prayer chain was created just for you? did you know that this blog, which was only intended to be a simple vehicle to keep family and friends updated on our situation, has been read by over 65,000 different people? did you know that through the generous donations of goods and money from those you have never met, children in need from our local area and all the way in africa will be helped and provided for because of your life?

did you know that people have told us that their lives, their faith was changed because of your life story? did you know that people have told us that they made the decision to continue their pregnancies even though they too had a fatal diagnosis, because of your life? did you know that complete strangers have told us how they look forward to meeting you one day in heaven? did you know that because of your life, family bonds were made stronger and deep friendships were forged? did you know that the significance of your life has touched even young children, who prayed for you, drew pictures of you for us, who came to your funeral by choice, who have talked to you at your gravesite, and who have told me how "cute" you were?

dear jonathan, one of the best days of my life was the day you were born.

five minutes old here

we could not have known that this day would be so wonderful, as we walked into the hospital with both fear and excited anticipation of your arrival. i will never forget the moment when you were born and we learned you were alive! i will never forget seeing you for the first time and thinking how perfect you were. and i will never, never forget the indescribable feeling of being in the Lord's presence when He took you home. your hospital room became a sanctuary that night.

dear jonathan, there was so much rejoicing when you were born. when our doctor went to inform our family and friends that you were here and you were alive, a celebratory cheer of praise and thankfulness echoed down the hospital hall. when they weighed you and we learned you were 4 pounds, 3 ounces, we also cheered for you because at only 32 weeks old and expected to be small, it was a major achievement! you were so determined to make it, weren't you? but the greatest gift to us and indeed a miracle, was that the Lord blessed us with 40 minutes with you. forty minutes was 39 minutes above and beyond what we had petitioned of God. we rejoiced in every minute we had with you. and while that time was brief, we do not forget that we had 32 weeks and 4 days with you as well, which we will always treasure.

dear jonathan, do you know that you have changed my life?

before you came, i was OK with my comfortable life, my comfortable identity, and my comfortable walk with the Lord. and i was OK with not changing a single thing about it. because of your life and the journey we went on together, my faith has been transformed from barely adequate to unshakeable. my perspective no longer flounders in this world but has become established on the eternal. they said you were too sick to survive, but because of your "sickness", you have brought great healing into my life. they called your condition "incompatible with life", but you showed me how beautiful life really is.

because of you, i have learned how to truly love unconditionally. to trust unconditionally. to believe and to hope unconditionally. i have learned through your life that God's promises are always true and His will is always best. i have learned that it's not about me nor my plans for my life, it's about Him and His plans, for His glory. and jonathan, i do believe i can justifiably say that your life did indeed bring Him glory. not because of anything we did, but because of everything He did. sometimes during our journey, i felt as if i was just a front-row spectator watching your life take on incredible meaning and purpose. how blessed are you that God would choose you for such a mission. and how blessed are we that we witnessed it first-hand.

there is just so much to tell you, so much good that has come of your life that i cannot begin to describe here. perhaps you know all this better than we do, and even more. you, sweet jonathan, have an amazing legacy. your life is a miracle. we are so proud to have been chosen to be a part of this miracle. and there will never be a day that you are not a part of us, a part of our family.

we love you and miss you so much. we look forward to the day we get to hold you once again.




a few nights ago, my 23-month old baby girl had trouble sleeping and was crying out for me. i went into her room, scooped her up and sat on the edge of the bed and rocked her side to side and sang to her in the dark. after a few minutes, it hit me that the last time i rocked a baby side to side like that was at the hospital, right before the funeral home came to get jonathan.

while my arms ache for jonathan every day, i am so thankful i have a perfectly healthy little girl to help "fill that void" so to speak. getting up in the middle of the night to rock her back to sleep isn't something i complain about these days.

some of my most treasured memories are those of rocking kate right before bedtime while i was pregnant with jonathan. once my belly got really big, kate would kind of "cuddle" against me as i rocked her. every once in awhile, i would feel jonathan move and kick while kate was curled up against him. i always wondered what she must think when she felt him move like that. i explained to her that it was her baby brother moving in "mommy's tummy." i will always cherish those moments of rocking and holding both of my children at the same time. those moments were heaven to me. and now i realize i won't get to do that again until heaven.


one month ago today, we welcomed our precious baby boy jonathan into our family.

one month ago today, we had to say goodbye, for now.

thanks to jonathan, i think about heaven everyday. it's just so much more real to me now.

before jonathan, i really didn't think much about it. my ignorance of heaven was very much like that of a child's: i imagined lots of clouds, angels singing, and Jesus. i didn't think much past that because i just didn't feel like i needed to be concerned with all those details.

but now, i need to know where my son is. it's partly necessary for my peace. there were days shortly after jonathan passed away that i begged God to show me somehow that jonathan was with Him in heaven, and that he was OK. and then i felt guilty for asking such a thing from God, because He had already been so gracious in showing me His involvement in so many other details encompassing jonathan's life and death. for me to question jonathan's resting place seemed, well...ridiculously absurd of me the more i thought about it. i just didn't know enough about what the bible says about heaven. seeing the whole picture, at least what God has shown us in His word, will surely help give me perspective. it's since become my new passion.

so recently, i read up on a few verses including the last couple of chapters in revelation to gain a better perspective. and the very next day, i received in the mail the book "heaven" by randy alcorn. (thanks robin p.!) it was such great timing. i've already learned several things by reading the first few chapters. one thing is for sure, heaven is going to be awesome.

"Better is one day in your courts than a thousand elsewhere." ~Psalm 84:10

There Will Be a Day
Jeremy Camp

I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth,
that we will enter in this rest with wonders anew

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering

There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place, will be no more,
we'll see Jesus face to face
But until that day, we'll hold on to you always

I know the journey seems so long
You feel you’re walking on your own
But there has never been a step
Where you’ve walked out all alone

Troubled soul don’t lose your heart
Cause joy and peace he brings
And the beauty that’s in store
Outweighs the hurt of life’s sting

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering


I can’t wait until that day where the very one I’ve lived for always will
wipe away the sorrow that I’ve faced
To touch the scars that rescued me from a life of shame and misery
this is why this is why I sing

There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place, will be no more,
we'll see Jesus face to face

There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place, will be no more,
we'll see Jesus face to face

There will be a day, he will wipe away the tears,
He will wipe away the tears,
He will wipe away the tears,
There will be a day.



well, i don't really have any deep thoughts to share this time. i do have several unfinished blog posts just sitting there waiting to take on some sort of meaning, yet the words aren't coming as easily these days. this past week or so we've been busy with "normal" things, both by choice and not: i'm trying to get back into my sewing/embroidery business, kate and i have been outside quite a bit enjoying this beautiful weather, and we have also had the unfortunate experience of a car in the shop and an emergency with one of our pets. on the same day. you know...normal stuff.

we are doing great though. i really feel like we did most of our grieving for jonathan while he was still alive. i feel a bit guilty about that, like maybe we should be grieving for him more now, but we just feel so much peace that it's hard to feel anything else. i know we'll have a few bad days here and there for many months and years to come, so i don't want to take these good days for granted. having lots of good days doesn't make me miss him any less...just makes it more bearable that he's not here. thank you for continuing to pray for us.

one thing i am starting to do is to look for things i can do to "remember" jonathan (not like i really need any help with that.) but you know, keepsake-type stuff. right now, all of his blankets, clothes and hospital belongings are put away in decorative boxes. i have an idea to make a "memory wall" with some of his things, such as a shadow box or two, but i'm not sure if i'm ready to go through those boxes.

i am also on the lookout for some personalized jewelry ideas. my mother has an opal stone and eight tiny diamonds just waiting to be used for something. she offered them to me a couple of months ago. coincidentally, jonathan's birthstone happens to be an opal and he was born on the 8th. i am probably going to get an engraved pendant of some sort as well.

so...if any of you know of some great personalized jewelry websites or keepsake ideas, please let me know!

in the meantime, i have some blogs to finish :)


40 minutes

shortly after jonathan passed away in our arms, we asked our doctor and nurses how long he actually lived for.

"40 minutes!" was our answer.

it wasn't until later that we began hearing about the significance of such a number. thanks to our worship pastor who enjoys teaching on the significance of small things in the bible that might go unnoticed, such as numbers, dates, and more, we did eventually wonder about the significance of "40 minutes." he had already explained to us the significance of jonathan's birth date, the 8th of october (which would have been the 9th of october, israeli time.)

this is what i found summarizing the significance of the number 40 from a couple of good sources on the internet:
The number 40 holds particular significance in the Bible and refers to a precise number, not just a long period of time....A 40-something time period, whether days, months, or years is ALWAYS a period of testing, trial, probation, or chastisement (but not judgment) and ends with a period of restoration, revival or renewal. It is the product of 5 and 8, and points to the action of grace (5), leading to and ending in revival and renewal (8). Thankfully, God is consistent, so the meaning of a number in Genesis remains the same all the way to the book of Revelation. Sometimes the spiritual significance is not revealed directly, but in the case of "40" and its many examples throughout the Bible, we can be certain of its importance and significance.

there are many events in the old and new testament regarding the number 40. here are most of them, without being repetitive:

~ it rained for 40 days and 40 nights when God wanted to cleanse the world and start over. (the story of noah's ark)
"And rain fell on the earth forty days and forty nights." ~Gen 7:12

~ noah waited another 40 days for the water to recede before he opened a window in the ark. "And it came to pass at the end of forty days, that Noah opened the window of the ark which he had made" ~Gen 8:6

~ when jacob, the father of joseph, died in egypt, he was embalmed following the egyptian custom which required 40 days. they believed that this was the period of preparation of going into a new life, what they called the afterlife.
"...taking a full forty days, for that was the time required for embalming. And the Egyptians mourned for him seventy days." ~Gen 50:3

~ moses was on the mountain with God for 40 days before writing the ten commandments. "Then Moses entered the cloud as he went on up the mountain. And he stayed on the mountain forty days and forty nights." ~Exod. 24:18
"Moses was there with the LORD forty days and forty nights without eating bread or drinking water. And he wrote on the tablets the words of the covenant—the Ten Commandments." ~Exod. 34:28
"When Moses came down from Mount Sinai with the two tablets of the Testimony in his hands, he was not aware that his face was radiant because he had spoken with the LORD." ~Exod. 34:29
"Now I had stayed on the mountain forty days and nights, as I did the first time, and the LORD listened to me at this time also. It was not his will to destroy you." ~Deut. 10:10

~ it took the israelites 40 days to search out the promised land and bring back fruit for everyone to see.
"At the end of forty days they returned from exploring the land." ~Num. 13:25

~ the Lord sentenced the israelites to spend 40 years in the wilderness.
"Your children will be shepherds here for forty years, suffering for your unfaithfulness, until the last of your bodies lies in the desert. For forty years--one year for each of the forty days you explored the land-you will suffer for your sins and know what it is like to have me against you." ~Num. 14:33-34
"The LORD's anger burned against Israel and he made them wander in the desert forty years, until the whole generation of those who had done evil in his sight was gone." ~Num 32:13

~ david killed goliath after forty days of his defiance of israel.
"For forty days the Philistine came forward every morning and evening and took his stand." ~ 1 Sam. 17:16

~ elijah, strengthened by food provided by an angel, went forty days and forty nights to mount horeb where the Lord passed by and he heard the voice of God."So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God." ~1 Kings 19:8

~jonah warned the city of nineveh they had 40 days until God would overthrow the city. the people repented in those 40 days and God spared the city.
"On the first day, Jonah started into the city. He proclaimed: "Forty more days and Nineveh will be overturned." When God saw what they did and how they turned from their evil ways, he had compassion and did not bring upon them the destruction he had threatened." ~Jonah 3:4 and 10

~ Jesus fasted for 40 days in the wilderness.
"Then Jesus was led by the Spirit into the desert to be tempted by the devil. After fasting forty days and forty nights, he was hungry." ~Mat 4:1-2

~ Jesus was seen in the earth 40 days after His crucifixion.
"After his suffering, he showed himself to these men and gave many convincing proofs that he was alive. He appeared to them over a period of forty days and spoke about the kingdom of God." ~Acts 1:3

~also, interestingly: eli, david, solomon, and joash reigned over israel for forty years each.


after looking up scriptures about the significance of "forty" and reading about the various trials and testing that happened, i was very encouraged to learn that no matter the length of the trial (days, months, years) or reason for the trial (testing, punishment), that the Lord was still very present in its midst. i see it in our trial, which thankfully falls into the category of "months" and not "years."

i look back and realize how difficult and stressful it was when we were pregnant and facing the unknowns, compared to now even though jonathan is not here with us. for now, we can see how the Lord lined up all the details to make for a very smooth delivery day. now, we can see how the Lord provided for us in our time of need, through Himself and through others. and now we know how the story ended, and how beautiful the story was. i don't know what i had to fear. the Lord promised us through many of the verses i've posted on this blog that He would carry us through, and He did. it was my lack of complete faith and understanding that kept things difficult and stressful for me. but He still provided, even in my moments of unbelief.

these scriptures about "forty" remind me how Lord was with us in our time of testing:

He didn't leave us alone to find our way. He led us through our time of testing, just as He had the israelites..."Remember how the LORD your God led you all the way in the desert these forty years, to humble you and to test you in order to know what was in your heart, whether or not you would keep his commands." ~Deut. 8:2

several months ago, i wrote about how the Lord provided our "spiritual food", just like He provided manna for the israelites in their time of testing in the desert. "The Israelites ate manna forty years, until they came to a land that was settled; they ate manna until they reached the border of Canaan." ~Exod. 16:35

we see now how the Lord has blessed us tremendously in our journey, and has provided for our every need. "The LORD your God has blessed you in all the work of your hands. He has watched over your journey through this vast desert. These forty years the LORD your God has been with you, and you have not lacked anything." ~Deut. 2:7

the Lord provided me a relatively comfortable pregnancy, in spite of jonathan's condition. even at 32 weeks and at high risk for pre-eclampsia, my feet had yet to swell once in my pregnancy. just as he provided for the israelites basic comforts in their time of wandering the desert: "Your clothes did not wear out and your feet did not swell during these forty years." ~Deut. 8:4

and finally, just as the Lord used the sign of a rainbow as a promise never to flood the earth again: "I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. Whenever I bring clouds over the earth and the rainbow appears in the clouds, I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life." (Gen. 9:13-15), i like to think of the significance of 40 minutes as a promise for renewal and restoration for us after our trial.

i do believe we are already in a period of renewal and restoration. perhaps it came in the abundance of peace we experienced once jonathan passed away, or perhaps it was in the relief of realizing that our period of intense testing had come to a close. i don't know exactly when it began, but i know it's here. every day i am a little bit closer to feeling healed and whole again after this trial. and every day i am more thankful and more joyful than the day before, knowing that jonathan is healed and whole in heaven.


a long overdue "thank you" note

there are angels among us.

when greg and i first embarked on this journey, we couldn't have forseen the wonderful and thoughtful deeds that would be done for us in our time of need. it has been a true blessing to see how our friends, family, church family, and even those we don't know personally, have lifted us up in every way.

a special thank you:

~ we truly believe that we could not have gotten better medical care anywhere other than with our obstetrician, dr. jennifer esses in sandestin, and with our maternal-fetal specialist, dr. jim thorp in pensacola. both doctors are incredibly gifted in their knowledge and skill, and supported us and cared for us with such kindness and compassion. we are so, so thankful to each of them and to their staff. a special thank-you to dr. esses, who not only was there for us as a physician, but also as a friend, prayer-warrior, and a valuable part of our support system. we appreciate you so much.

~ the hospital where we delivered both kate and jonathan, sacred heart hospital on the emerald coast (sandestin), was also wonderful. our nurses, jessica, crystal, deja, khris, and our social worker, dawn, went above and beyond their duties to help us and care for us in every way, including coming in on their own time and staying late past their shifts. we are so grateful to you for what you did for us before, during, and after jonathan's birth. a sincere thank you.

~thank you to our genetic counselor, beth, who provided us with all of the necessary information on jonathan's condition, who made herself available at anytime to answer our countless questions, and who supported us with the bad news and celebrated with us with the good news.

~a special thank-you to our friends jennifer, michelle, and lisa (and their husbands) who have done so much for us these past few months, including caring for kate, bringing numerous meals, putting together jonathan's "celebration of life", helping with the funeral, and who have been on their knees praying for us since literally "day one". thank you also to our friends, mike b., cathy and ken, and leigh ann, who traveled from different parts of the U.S. (and from another country!) to come support us and be there for us in our time of need. we love you all and are so thankful for your friendship.

~a special thanks to our church pastors and staff, especially pastor carey dean and sr. pastor carey olson and their wives, who loved us, counseled us, prayed for us, and provided for every need that we could possibly have during this time. thank you especially for all of the work that went into jonathan's funeral, including the hosting, officiating, the flowers, the childcare that was provided, the technical assistance, and more. we are so blessed by you. thank you.

~our large group of friends and church family: there are literally a hundred or more people we should be thanking by name, for the amazing acts of service and love that were done for us during our journey. greg and i want to express our deepest gratitude to those who brought us meals, babysat for us, sent cards to us and our families, gave us free medical advice, called us to check on us, and prayed for us, among many other acts of kindness.

~thank you to our wonderful neighbors who made themselves available to us in our time of need, who supported us at jonathan's celebration of life and funeral, who donated to charity in jonathan's name and who sent flowers and spoiled me with a pedicure and massage :) we appreciate you all so much.

~a sincere thank you to lindsey newcomer for taking maternity photos, and to deb haussermann, who took maternity/family photos and also spent several hours with us at the hospital taking pictures of us with jonathan. these pictures are priceless to us, and we will treasure them forever. thank you for donating your time, energy, and talent to our family in this way.

~to our prayer partners, including those who follow our story here on the blog: we could have not made it without you. we have heard of how faithfully you have been praying for us, even though many of you don't even know us personally. we have heard the stories of about how some people felt "an urge" to pray for us at certain times, which we later learn that that specific moment was so significant in our journey. we have learned of people waking up in the middle of the night, burdened to pray for us. these stories are a true testament to how the Lord has used you to lift us up in our time of great need. thank you for asking of the Lord on our behalf to answer our specific prayer requests during this time, especially the prayer that jonathan would be born alive, and for our peace and strength through this time. please know that the Lord has answered these prayers for us, and has blessed us abundantly. i believe that for years to come, greg and i, and perhaps others, will still be talking about the amazing things that the Lord accomplished through jonathan's life and that some of these things are yet to be revealed. thank you also for your encouraging words to us via email and blog comments. they have blessed us greatly!

~we thank all of our family, friends, and even those we don't know personally, for your donations in honor of jonathan to the children's advocacy center and to heart of the bride ministries, and also in jonathan's memory to heart of the bride ministries.

~thank you to thereseann from the "living with trisomy 13" website. because of your site, we were filled with much hope about traveling this T13 journey. thank you for reminding us that we are not alone, and that there is plenty of wonderful support for families like us. we have connected with some truly wonderful families via this site.

~thank you to laura with "string of pearls", whose keepsake box provided us with wonderful memories of jonathan to enjoy for many years to come.

~last but not least, thank you to our families. words cannot express how much your unconditional love and support means to us. thank you for all that you have done for us. we love you so much.

we are so thankful for each of you.

"I thank my God every time I remember you." ~Phillippians 1:3

with love,
lauren and greg


an exquisite grief

the weather here on the emerald coast has absolutely gorgeous this past week. it's been breezy and cool, and there hasn't been a cloud in the sky for days (until today!) when i'm outside in the fresh air, i can't help but think about jonathan.

did you know that two weeks ago i gave birth? i honestly have to remind myself of this. there isn't all that much to remind me of it these days. the physical pain of such an event is mostly gone now. i am back into my "regular" clothes, and all of my maternity clothes are packed up and put away. i am able to sleep better at night. physically, i have recovered pretty well, especially for it being only two weeks. i'm sure it was because jonathan was so small, and because the Lord has been merciful.

however, the grieving process has begun for me. it's hard to describe, because there is still that marriage of joy and sorrow that i am experiencing. joy, because i could not have asked for any more of God's favor on us during this time, and especially by meeting jonathan....and sorrow because my arms ache to hold my sweet baby again. the sorrow i feel in missing jonathan is incredible.

we were warned that this part, the grieving process, would be the hardest. i think that perhaps this deep sorrow was part of the many reasons some people questioned our decision to carry jonathan. they wonder why would we choose to do this to ourselves? as if the pain of terminating the pregnancy would not be as deep. but we chose to carry jonathan, knowing that it probably would be harder. we would bond with him even while he was in the womb. we would meet him face to face. and we would have to say goodbye. we knew this season would inflict suffering, and leave us with scars.

but we would not choose to do it differently, even now in the suffering. we didn't do it for the promise of any gain for ourselves, for we surely weren't promised any reward. we did it because we believe that we were called to walk this path for purposes that God alone knows. you see, we only had two options: terminate in unbelief, or to carry on and believe. i realize that this would be difficult for someone who doesn't know God or want anything to do with God, to grasp.

so yes, greg and i will probably always be scarred from this. but instead of the scars being reminders of the hurt and pain, we will consider them badges of honor, as we are so honored that the Lord would choose us to be jonathan's parents. therefore, our grief is exquisite.

i imagine that this is how the Lord feels about his children, but so much more. He is honored to be our Father, and bears the scars he suffered in order that we would know Him as such.

“Behold, I have inscribed you on the palms of My hands.” ~Isaiah 49:16


i am happy to report that 6 out of the 7 days this past week were good days. days where i didn't cry very much, or at all. days where i felt more joy than sorrow. days where i felt like i was able to keep the right perspective in all of this. i noticed that on those days, i had plenty of rest.

after that one rough day this week, i decided to go alone to visit jonathan's grave. i wasn't sure how it would make me feel, if i would cry the whole time or not, or if it would make me miss him even more. it was a lovely day, and i spent several minutes taking in beauty of the place; the smell of green grass and fresh flowers, the cool breeze in the air, the sound of the windchimes, the bright blue sky...and i tried to comprehend what he must be seeing in heaven. i imagine the beauty of the changing season here must pale in comparison to the beauty he is experiencing. but soon, my eyes came to rest on the power lines out near the road and then there was the sound of a noisy truck passing on the highway that was a rude reminder of the world's imperfections. i didn't cry for jonathan that day, because i know he's so much better off where he is. he will only know beauty, and in more ways that we can comprehend here.

i also decided right then and there, that i would not make myself feel guilty about when or how often i visited jonathan's grave. i wasn't coming to visit him, because i knew he wasn't there. so it wasn't like i was neglecting him or something. i needed to realize that. instead the place is symbolic of a deeper relationship, the relationship i now have with the Father because of what He's done in my life these past few months. from now on, i will come to the gravesite not just to remember jonathan, but perhaps moreso to remember the gift He gave me, through jonathan's life.


meet our precious gift

"I Will Carry You" by Selah

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?
People say that I am brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who’s chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says…

I’ve shown [him] photographs of time beginning
Walked [him] through the parted seas
Angel lullabies, no more teary eyes
Who could love [him] like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who’s chosen Me
To carry you

birthday, part three

(continued from birthday, part two)

an answered prayer
jonathan was born at 7:16 pm. "is he alive?" is all i wanted to know. "he's alive!" our doctor told us. i remember being so relieved and so happy, saying, "thank you, Lord!" and then, we saw him for the first time. his little forehead was wrinkled up and his mouth was open, trying to cry. he stretched out his arms and legs and even opened up one eye. greg cut the umbilical cord. and then suddenly, he was in my arms.

i hadn't thought about what i would say to jonathan beforehand. while i held him, greg and i were mostly speechless. we absorbed every detail about him. he had wavy blond hair, just like his sister, and tiny blond eyelashes. his skin was the softest thing i have ever felt. he had long feet and perfect little toes. he even had a bit of a double chin! he was so beautiful, so little and so...normal looking. i don't know how to put that eloquently. we just didn't know what to expect, knowing that he would have some abnormalities. i don't think we would have cared what he looked like, since we love him so much. but the only truly obvious sign of the trisomy 13 was a bilateral cleft lip. i remember thinking later, how easy that would be to fix. it was his inward parts that could not be fixed. after a few moments of just admiring him with teary eyes, we finally found words to speak to him. we told him over and over how much we loved him. we told him "happy birthday" and told him about all the people all over the world that were praying for him.

jonathan became very peaceful, and didn't move very much after several minutes. it was like he was sleeping. there was no struggling, no suffering. we had prayed so much for that, and had been assured many times by doctors that he wouldn't suffer. we were thankful to witness such peace. every once in a few minutes, the nurse would come check his heartbeat with the stethoscope. it was 50, then 40, then 30.... we showered him with kisses and "i love yous" through our tears. and then, 40 minutes after being born, at 7:56 pm, jonathan passed peacefully away.

40 minutes had passed like it was only 5 minutes. the entire time spent with jonathan was done with such intense focus on him that it was over before we knew it. but it was the best 40 minutes of my life. for 40 minutes, we were truly a family of four.

our little piece of heaven
once i knew that jonathan was gone, i did my best to try to imagine jonathan being gently taken from my arms by Jesus himself. i knew that the Lord was near to us, and gave us incredible strength to make it through that moment. i was sad, yes, but i was not devastated. the only way i can describe it is that we had such peace, and even a celebratory spirit within us, as we "let him go." i tried to imagine what jonathan must have been experiencing in that moment. perhaps it was the first moment of his life that he was able to comprehend something. i wonder if he knew he was face-to-face with his Creator. i wonder if he knew that we were his parents and that we love him so very much. i wonder if there were other loved ones in heaven to greet him. i wonder if he will always be a baby in heaven. thankfully, one thing we don't have to wonder about is if we'll see him again. thanks to jonathan, the Lord has reminded me that this life on earth is not what it's all about. heaven is what we should long for. and now I have my precious jonathan to look forward to seeing again, for we know that we will spend far longer in heaven with him that we ever would here on this earth. i am so thankful for this hope we have in Jesus.

"We've been given a glimpse of the real thing, our true home, our resurrection bodies! The Spirit of God whets our appetite by giving us a taste of what's ahead. He puts a little of heaven in our hearts so that we'll never settle for less." 2 Corinthians 5:4-5, The Message

"I will thank you, Lord, with all my heart; I will tell of all the marvelous things you have done. I will be filled with joy because of you. I will sing praises to your name, O Most High." ~Psalm 9:1-2

making memories
we were able to spend over 5 hours with jonathan. most of this time was captured in photos, as our families and friends were able to meet him and adore him with us.

greg gave jonathan a bath to clean him up, and it was so precious to watch my husband carefully and lovingly bathe his son. greg was amazing with him; so proud to have a baby boy.

once i got jonathan back in my arms, he smelled so sweet, and i breathed him in deeply as often as i could, hoping to always remember how he smelled in that moment.

our wonderful nurses, deja and khris, along with our social worker, dawn, graciously spent several hours with us, helping us get footprints, handprints, foot molds, and other keepsakes. we dressed him in a light blue premie outfit, which dwarfed him, and tiny premie socks. close to midnight, deja swaddled him for us and we spent some more time alone with him, rocking him, talking to him, taking more pictures...before we knew it was time to let him go.

a little after 1:30 am, the funeral home came to get him. it was the moment i dreaded. the hospital provided a little basket for us put him in for the transfer to the funeral home. we tucked him into the basket just as we would have tucked him into bed. we placed his little blanket with him and kissed him and touched him for the last time.

and then he was gone.

"I am leaving you with a gift--peace of mind and heart. And the peace I give isn't like the peace the world gives. So don't be troubled or afraid." ~John 14:27

"The LORD gave and the LORD has taken away; may the name of the LORD be praised." ~Job 1:21

all through that night, i would wake up and look at the clock on the wall. he's been gone 2 hours now. 3 hours now. 5 hours now. it was the hardest night of my life. i just wanted to wake up to a new day with lots of sunshine and a healthy baby in my arms. thankfully, i was not able to dwell much on these thoughts, with God's help i'm sure. when my mind wanted to wander to those places, it actually took too much effort to stay there for long. i actually could not escape the peace that surrounded me. writing this even now, i stand amazed at how God provided so much strength and grace for me in what should have been my darkest hour.

"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever." ~Psalm 23:4-6

i truly believe that once we come to realize that our children do not actually belong to us, they belong to the becomes so much easier to let them go. the Lord would not have required us to do it without His help, without His provision for our every need.

(i will post pictures today as well, in another post.)


what is normalcy?

greg and i are easing back into our "normal" lives now. i am still not sure what that means. a few days ago when we were so busy with funeral plans, i was looking forward to getting back to normalcy. but i realize now that it means "getting used to being without jonathan." we miss our baby so much.

we took kate to a local pumpkin patch yesterday. it was our first outing as a family in a long time. it was nice to have fun together, but we couldn't help feel that someone was missing. kate got to pick out a big pumpkin for herself, and a baby pumpkin for jonathan. she is very aware that she has a baby brother named jonathan. i am certain she remembers meeting him. when you ask her who her brother is, she always says, "baby!" and when you ask what the baby's name is, she will say, "jon-than." she also recognizes him from his pictures.

on the way back home from the pumpkin patch, we stopped to visit jonathan's grave. greg and i always note how beautiful it is where he is buried. the flowers from the funeral were fragrant and still blooming even though it had been several days now. the trees are still very green and full of life in spite of the falling temperatures. yesterday, it was very breezy, so the windchimes hanging all around the other graves were dancing and singing nonstop in the wind. there was a patch of sun right over jonathan's grave, as if to keep him warm. we could have spent hours there with him.

then today, we went to church for the first time since jonathan was born. we missed going for a couple of weeks there at the end of my pregnancy, since things were getting worse with jonathan. it was good to be back, and it did make things feel more "normal" again. afterwards, we again stopped by jonathan's grave since it was just next door. we wanted to make sure none of the flowers had blown over in the wind. when we were about to drive away, kate said, "bye-bye, jon-than!" in the voice of a sweet big sister.

i hope normalcy doesn't mean that kate forgets she has a baby brother. or that we try to fill our days with meaningless chores and obligations, in order to "take our mind off" of missing jonathan. or even worse, that we try to fill that "God-sized" hole in our hearts with anything other than God.

so i don't want to go back to normalcy. for how can we go back to the way we were, once we have met this little boy? how can we go back to who we were before, after we have experienced a greater love and emerged from this trial with a deeper faith? how can we be anything but changed for the better for what we experienced through this journey? we have been called to be better than what we were before jonathan came to be. so thanks to a little boy, who was deemed "not compatible with life" and only lived for 40 minutes....we have learned what life is truly all about.

"Life is not measured by the number of breaths you take, but by the moments that take your breath away." ~ Anonymous


we sang this song at church today, "you are good". it is such a fitting song for our journey. He is so very good.


birthday, part two

(continued from birthday, part one) greg and i arrived at the hospital right around noon, and we were immediately ushered into our room. it was a huge room at the end of the hall, and was a delivery and postpartum room all in one, which was nice since we would be staying in it the entire time.

our last pregnancy pictures with jonathan

things happened pretty fast from there. we met our nurse, jessica, and later our social worker, dawn, when she came to check on us. before i knew it, i was changed into a hospital gown and had an IV put in my arm. we took a few moments to unpack jonathan's keepsake items, and the nurses set up a nice "display" of them in the bassinet. unfortunately, i was not prepared to deliver a baby that day, so the only thing i had all day to eat or drink was a muffin and a diet sunkist. i was starving and thirsty, and all i could have was basically ice chips.

i love ice chips....ok, who am i kidding.

we are determined to spoil this baby, no matter how long he lives for!

my doctor showed up right after lunchtime and gave me a couple of pills to encourage my body to begin preparing for labor. i was already experiencing mild contractions at this point, just like i had for the past week or two.

soon, our room was buzzing with family members and i was in labor. it didn't take long for the contractions to get pretty intense. thankfully, i didn't ever have to be put on pitocin for the contractions. things were moving along well, so i asked my nurse and my doctor again for their opinion on getting an epidural. jonathan was still breech, and in case he got stuck for any reason, they would have to resort to forceps or my doctor would have to manually go in and pull him out. that scared me. i was assured that jonathan's health would not be compromised by the epidural, but it would for the other drugs that were offered to me. for this reason alone, i opted to get the epidural but no other drugs.

the epidural did not work completely for me, just like i had experienced when i got one during kate's delivery. apparently, it has something to do with the nerves in my spine. only one side goes numb while the other is completely normal. with kate, it happened on my right side, and with jonathan it happened on my left. i'm sure just feeling the contractions on only one side helps alleviate the pain a bit, but it was still pretty bad.

we occasionally monitored jonathan's heart rate during labor, just to make sure he was still with us. however, one time it was so high, it didn't even measure on the machine. later, it registered at 220 BPM or so. we were thankful to know he was alive, but i could tell that greg and i would be so, so disappointed if we checked one time and didn't hear anything. it would have really broken our hearts, right before i would have to deliver. so we ended up deciding not to listen anymore and just to trust in God's will for jonathan's life, if he was meant to be born alive.

our photographer, debbie haussermann, arrived and then we spent some time alone with our pastor as he read us verses from psalm 118 and from psalm 27 and prayed for us and for baby jonathan. it was at this time, he encouraged us with his observance of God's perfect timing in all of this. for greg and me, it is sometimes hard to see it, because we are the ones walking through this trial. so to hear about the many ways God's fingerprints were all over this very day, was amazing. we plan to share these details in a future blog.

"This was the LORD’s doing; It is marvelous in our eyes. This is the day the LORD has made; We will rejoice and be glad in it." ~Psalm 118:23-24

close to about 7 pm, it became time to push. i could tell that jonathan was coming, and i wasn't even pushing yet. i was pretty sure that i was feeling him kick as his feet were about to present, and now that we know he was alive when he was born, i am positive that was what i was feeling. my doctor showed up and the pushing began. after about 4 sets of pushing, jonathan was born at 7:16 pm! it was so much easier than i could have ever thought, with jonathan being breech. i'm sure the Lord was merciful on us with such an easy delivery. i was able to enjoy jonathan from the moment he was placed in my arms! be continued...and i promise lots of pictures of jonathan next time.

where joy and sorrow meet

it was dark and pouring down rain when i woke up yesterday morning. my first thought was, "oh no. i hope it doesn't rain during the funeral." i pictured us standing at the gravesite with umbrellas, just as you see in the movies. my heart sank a bit, because i was determined to enjoy the day as much as i possibly could, given the circumstances. rain would interfere with this, i was sure of it.

a couple of hours later, we were solidifying all the funeral arrangements with our pastor over the phone. he mentioned how i probably felt stress over the rain this morning. he went on to say that the day that jonathan was born, october 8th, was the last day of the jewish holiday "feast of the tabernacles", also known as the "day of salvation." after this time, the ancient jews would start praying for rain. rain, he told me, was symbolic of the Holy Spirit. so the rain we experienced in the morning was symbolic of the Lord being present with us on the day we would bury our son.

that brought me much comfort.

"Since in Israel the rains normally stop in March, there is no rain for almost seven months! If God does not provide the "early" rains in October and November, there will be no spring crop, and famine is at the doorstep. This ceremony, then, was intended to invoke God's blessing on the nation by providing life-giving water. It is in connection with the Feast of Tabernacles and this eighth day that the gospel of John records a fascinating event. John wrote: "In the last day (eighth day), that great day of the feast, Jesus stood and cried out, saying, If any man thirst, let him come unto me, and drink. He that believeth on me, as the scripture hath said, out of his heart shall flow rivers of living water" (John 7:37-38). The Son of God was saying in the clearest possible way that He alone was the source of life and blessing; that He could meet every need of the human heart."


this past week has flown by. 7 days ago, i had no idea that we would be here. 7 days ago, i was still hoping we would have another month left with jonathan before being induced. 7 days ago, i would never have guessed what was ahead of us in the coming week. and now, here we are: having already given birth, experiencing 40 wonderful minutes with jonathan, loving on him when he passed so peacefully away, and then yesterday, celebrating his life and mourning our loss with a funeral.

greg and i have been so wrapped up with preparing for the funeral that it seems more like a month has passed, rather than a week. we are tired. we are somewhat just "going through the motions" right now. and we are looking forward to getting back to our "normal" day-to-day life, whatever that may look like now. we are now a family of four, except our newest member just happens to call Heaven his home. so we aren't operating like your typical family of four. but make no mistake, jonathan is very much a part of us.

"What we have once enjoyed we can never lose...all that we love deeply becomes a part of us." ~Helen Keller

yesterday was probably the second-most anticipated day of our journey, next to delivery day. we were very intimidated by it, but again, astonished by the strength and grace the Lord provided to us to make it through.

we were actually OK until we pulled into our church's parking lot and there, front and center, was the hearse. the walk from our car, past the hearse, and into the church was a very long and hard walk. and then, from the foyer of the church, we could see straight down the center aisle of the sanctuary the tiny white casket that held the body of our baby boy. it took several moments to compose ourselves, but eventually we went in alone to spend time together in front of the casket. it was a surreal time. it was hard to believe that we were actually experiencing this. that our baby was actually in there. but then, we reminded ourselves that jonathan was not there. he was in heaven, probably looking down on us, saying, "mommy and daddy, don't cry! heaven is awesome!! i'll see you soon!"


the funeral was absolutely wonderful. i know that you don't typically think of funerals being wonderful, but this one was. yes, it was sad. but it truly was a celebration of a tiny life that has touched so many people and has blessed us in ways that we can't begin to fully describe. we are truly so thankful for our baby boy, and i speak for both greg and myself when i say that meeting jonathan face-to-face was worth every hardship, every teardrop, every physical and emotional burden we experienced throughout this journey. we would make the same decisions again. we have no guilt, no regrets. we have experienced peace and love on an extraordinary level. it has been a blessing.

the "wish frame", where people placed scripture and messages to us and jonathan

a few of my former bosses from the sheriff's office


our wonderful social worker, dawn was there on behalf of some of the nurses who couldn't be

friends, cathy and lindsey

celebrating the day with JOY

our families

with my friend cathy's husband, ken

the ceremony was filled with songs we love, sung by our dear friends who have been right there with us during the journey, lisa, jonathan, and faith. the songs were "enough", "where joy and sorrow meet", "blessed be your name", and "since the world began."

during the song, "blessed be your name", three of my closests friends read scripture in between the stanzas.

we also played a slideshow that greg and i put together, with scripture and pictures of jonathan.

because both greg and i have several friends and family members who were unable to make the funeral and wanted to be there, we plan on posting clips of the songs and message as soon as we get around to uploading them.


since the cemetery in which jonathan was buried was directly next door to our church, greg, our pastor, and i rode in a golf cart behind the hearse in the short drive to the gravesite. it was ominously overcast and windy, and the thunder was already rolling in the distance. it reminded me of the day we came to the cemetery to make the funeral arrangements. the birds were still chirping in spite of the coming storm. by the time we reached the gravesite, it had begun to sprinkle, and then steadily rain harder as we walked to the tent over our son's grave. greg and i had decided that it would just be the two of us attending the burial, with our pastor. we wanted to spend that final time alone with our son.

after our pastor prayed with us, greg and i had a few moments alone with jonathan. by then, the weather had really deteriorated, and we were ushered to the safety of a waiting van. the lightning was too bad for us to stay out there under a metal and canvas tent. so unfortunately, our time spent with jonathan before his burial was cut short. my mind really wanted to go to those places where i question God, saying, "why would you let it happen this way," etc. but those thoughts were overpowered by the reminder, again, that jonathan was not there in that box. that would not be him in the ground. the time had come to say "good-bye, for now" and "i'll see you again soon."

even today, i like to think of the symbolism of rain being the Holy Spirit. we were definitely covered by it at the gravesite.


after the time spent at jonathan's grave, our families and close friends all went out and celebrated again at a mexican restaurant. this is fitting, because 1. jonathan had lots of chips and salsa while i was pregnant, and 2. who doesn't enjoy eating chips and salsa, surrounded by lots and lots of loved ones? it was the perfect meal for this day. i wonder if there is chips and salsa in heaven? jonathan would probably like that.

afterwards, it had finally stopped raining, so we went back to jonathan's grave with our families and stayed there until it was completely dark. i had another fleeting moment of guilt, leaving jonathan behind under cold, wet soil, but that thought was immediately conquered again. please continue to pray that we will stay strong in our moments of weakness and the Lord would continue to show us that jonathan is very much at peace with Him.