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.


a song for this part of the journey

this song has meant so much to me on this particular part of my journey, that i wanted to share it. everytime it comes on the radio, i have to stop and give thanks for everything the Lord has done for me. i hope you'll take the time to listen and read the lyrics. by the way, i did not make the video, but it was the best one i found for this song.

Healing Hand of God
Jeremy Camp

I have seen the many faces,
I fear in the pain.
I have watched the tears fall plenty,
From heart ache and strength.
So if life's journey,
Has you weary and afraid.
There's rest in the shadow of his wings.

I have walked through the valleys,
The mountains and plains.
I have held the hand of freedom,
It washes all my stains.
If you feel the weight of many trials,
And burdens from this world.
There's freedom in the shelter of the Lord.

I have seen,
The healing hand of God,
Reaching out and mending broken hearts.
Taste and see the fullness of His peace,
And hold on to what's being held out.
The healing hand of God.

I have touched the scars upon His hands,
To see if they were real.
He has walked the road before me,
He knows just how I feel.
When you feel there is not anyone,
Who understands your pain,
Just remember all of Jesus' suffering.


Cast all your cares on Him,
For He cares for you.
He's near to the broken and confused.
By His stripes,
Our spirit is renewed.
So enter in the joy prepared for you.


The healing hand of God (x2)
And hold on to what's being held out (x2)
The healing hand of God


God at work, part three: woven together

on june 24, 2009, we helplessly watched the ultrasound screen at our appointment with the maternal-fetal specialist, as he explained to us all the abnormalities he was seeing in our son's body. 

and then, the news:  our son would die, most likely in utero.  maybe within days, maybe within weeks.  his chance of survival after birth was almost non-existent.

how could this have happened?  did God make some huge mistake when creating our son?

no relevant information could be found in any pregnancy book i owned.  so those books were put away and we turned to the scriptures for answers.

what we found was that jonathan was woven together by God exactly the way he was supposed to be and that his days were ordained long before he was conceived. (Psalm 139.) 

introducing:  woven together

For you created my inmost being;
you knit me together in my mother's womb.

I praise you because I am
fearfully and wonderfully made;
your works are wonderful,
I know that full well.

My frame was not hidden from you
when I was made in the secret place.

When I was woven together
in the depths of the earth,
your eyes saw my unformed body.

All the days ordained for me
were written in your book
before one of them came to be.

~ Psalm 139:13-16

woven together is the name of the ministry i am working on, which aims to honor pre-born babies who are purposefully created in such a way that they receive a devastating prenatal diagnosis, as well as to encourage mothers as they bravely choose life while facing eventual loss. 

each prenatally-diagnosed baby will receive a  personalized, embroidered preemie baby blanket, personally "woven together" by me.  the idea is not original or complex, obviously, but i think something that makes it extra special is that the name or monogram of each baby will be embroidered on the blanket.  i believe every mother who is facing or has experienced a loss understands the importance the child's name being remembered, and of a lasting personalized keepsake. 

for those mothers who experience an unexpected loss during or shortly after birth for any reason, my plan is to embroider the name or monogram of their babies onto a piece of fabric that can be used as a quilt square, a photo album cover, in a framed photo set or shadow box, the front of a pillow, or other keepsake project.  the possibilities are endless.  i've decided to make it a more "do it yourself" type of keepsake, because it allows for many keepsake ideas and possibilities, as well as the satisfaction of making something special for your child. 

i am truly honored to be able to offer encouragement to those mothers who are walking the same difficult road as i am, as well as to do something for others in memory of my precious son jonathan.  right now, i am prayerfully seeking the Lord's guidance on this ministry, and am expecting it to evolve somewhat as certain needs or requests come to light. 

eventually i'll post more details, contact info, etc. 

i would love to hear your thoughts or suggestions as well by way of a comment. :)


God at work, part two: healing and a new ministry

part of what God's been working on in my heart these days is healing.  it's been a long process, and it's not over yet.  but the more i draw close to Him through prayer and reading scripture, the more i can truly feel Him binding up my wounds. 

i never realized until this year just how many scriptures are about the sorrows we all will experience here on earth and how, with God's grace and mercy, He leads us through the trials we face and we become stronger because of them.  i'm guessing that i never noticed them all because until this past year, i had never had moments where i truly didn't know how we were going to make it through each day; where waking up each morning meant we were another day closer to my son dying.  the promises to me in those scriptures were the only hope i had to survive the nightmare i was living.

and now when i re-read those scriptures, i am at peace.  comforted.  but i'm especially joyful, because my God did not let me down.  every promise came true.  and now i know, from experience, that He is absolutely trustworthy and good. 

and that, my friends, is where i began noticing healing in my heart. 

in the past couple of months, i've seen healing in my life in other ways:  i've held my first newborn that wasn't jonathan. my sister's baby, sophie, was born in march.  i found out that my sister was pregnant a day or two after i found out that jonathan would die.  i wasn't sure how i would feel about sophie after she was born, but to my surprise, i'm actually OK about it all.  i've even enjoyed being around her (and not in some i-want-to-steal-your-baby kind of way. in case you're wondering.)  but mostly, i know that jonathan fulfilled a purpose in his short life, and he did it well. and i'm proud of him; proud to be his mommy. i wouldn't want it any other way.  no other baby could fulfill what jonathan accomplished.

sweet baby sophie

i've also attended my first baby shower, which happened to be for my dear friend lindsey, who i occasionally mention in this blog and as you'll remember, she lost her baby gabrielle at 22 weeks. she's now due in a couple of days with her baby boy, luke. being at her shower was not uncomfortable for me at all, and i wouldn't have missed it for anything. my gift to her included about five baby items that i enjoyed handmaking for her.  and that's another example of how i know i'm healing:  it doesn't bother me one bit to make cute baby items for other people's healthy babies or for baby showers.

two of my favorite friends, cathy and lindsey

and that's why now i feel is the time to start using my sewing ability to encourage others who are walking a similarly difficult road as i am.  it's one of the two things i have in mind to do for jonathan's legacy.

it all starts with a story about my sewing room. 

about two years ago, when my sewing hobby was becoming a small business, i decided to turn one of our extra bedrooms into my sewing room.  some people have guest bedrooms, some people have dens or offices, and i've even heard of some people having man-caves.  so having a sewing room was like having my very own get-away room...and freed up my dining room again for dining.  but not that we ever use it for dining anyway.  (who does??)

so you can imagine my predicament when i became pregnant with baby number two (jonathan.)  i hoped he would be a girl so i could stick her in a crib in kate's bedroom and keep my sewing room.  and yes, i realize how selfish this is, but at this time i was busy, busy, busy and needed a place i could spread out and work.  and, i had my sewing room just the way i wanted it.  i know:  selfish.

when we were in my OB's office on june 22nd of last year, getting that fateful ultrasound, we actually found out that we were having a boy before our doctor discovered any problems.

i was in shock that i was having a boy.  i had been sick for several weeks, just like i had been with kate.  i just assumed because of this, i was having another girl.  and in that moment of shock, several things ran through my mind as i tried to grasp i was going to have a baby boy.  and one of those things, i'm embarrased to admit, was that i was going to have to give up my sewing room.

a few seconds later, my doctor discovered our baby had a cleft lip, a marker for a genetic disorder, specifically trisomy 13.

so, given what transpired in the days and months to follow, with the diagnosis of trisomy 13 and severe heart defects, and then jonathan's eventual birth and death....whether to keep a sewing room or make it into a nursery becomes completely, absurdly trite, doesn't it?  what i wouldn't give up to have my baby boy here, happy and healthy. 

well, in a horribly ironic twist of fate, i got to keep my sewing room after all, and learned a hard lesson in perspective through my circumstances.  i quit sewing for several months and canceled all my orders.  most of what i sew is for babies and toddlers anyway, so there was another reminder i didn't need during that time.

it wasn't until the end of september that i picked it back up, when i realized how sewing could be therapy.  when you sew, you focus and concentrate on every stitch, every cut, making sure it's precise.  there isn't much room to think about anything else, lest you make a mistake.  even at the end of my pregnancy, when i would sew, it was the only time i wasn't thinking about having a baby that was going to die.

seven months later, sewing is still therapy to me.  i'm back in the swing of things and people are having lots of healthy babies, so business is good.  but i also want to do something to honor the babies who have been diagnosed with a poor or fatal condition prenatally, and those babies who are born still or die shortly after birth.  i am completely convinced that each of these children have just as great a purpose in life as any healthy child, but with a shorter life span.  and as proven in jonathan's life, as well as many other babies who have died that i know of, God can take the least of us and glorify Himself the most.

more details to come.


where i've been.... case you've been wondering.

for the last week or so, i've been here:

and here:

and here:

and here:

and here:

and here:

enjoying it before it's gone....


7 months and mother's day

remembering my sweet jonathan today and thinking about all the other mothers i know who have also lost a baby.

i am praying for God to bless you this mother's day.



God at work, part one (and another prayer request)

the next several blogs will be written as a series entitled, "God at work" and will record some of the amazing ways He's been active in my life lately.


looking back over the past six months (almost 7 months now) of life without jonathan, and being able to analyze that time without the bias of sadness lately, i've come to realize that there's another factor that plays largely into the difficulty of the six-month milestone.

and that is, what happens now?  where does jonathan's legacy go from here?

yesterday, i was talking with another mom of a baby in heaven, and we both agreed that it really is so important to us that the memory of our lost children continue somehow.  and the longer that child is gone, the harder it is to accomplish, it seems.  for me, it was at six months that i reached a point of feeling like i needed to do something more than just my blogging.  i needed to do something to extend jonathan's legacy that would also benefit moms who are just embarking on this difficult journey i've been on for almost a year now.  to "pay it forward", so to speak.

so, for the past several weeks now, i've been praying about and brainstorming ways to extend jonathan's legacy. 

and i've realized that i'm only good at two things.  that's right, just two.  it's humbling, but the Lord has shown me that i can use both of those things in my overall mission.  so i'm OK with it.  :)

i'll be introducing them seperately in future blog posts.


i have another prayer request if anyone is willing to pray for this....

as you know, i live on the emerald coast of florida, which is located right on the gulf of mexico, between pensacola and panama city.  it includes the cities of destin, fort walton beach, and niceville, plus two large air force bases and several other small towns.  we have snow white beaches and crystal green-blue water, and the best seafood anywhere.

in a matter of days, our entire gulf coast is probably going to be devastated by the oil spill off the coast of louisiana.  devastated as in, catastrophic loss of animal life, ecosystems destroyed, people's livelihoods ruined, and our tourism industry (basically, our economy)  tanked.  it has the potential to create damage we might not recover from for years and years.  i know our God is sovereign and there is nothing that comes to a surprise to Him, but i also believe He has the power to step in and minimize the damage to not only our area, but to the other affected states as well.  please pray for this on our behalf, if you are so willing.

in the meantime, i'll be spending my time at the beach and eating shrimp until the oil rolls in.

a sincere thanks,