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.



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 :)