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.


things to remember him by

back in november, i blogged a little bit about some keepsakes i wanted to either buy or make in memory of jonathan.  specifically, you might remember the opal and 8 tiny diamonds that my mother had offered to me before he was born to make an original jewelry piece in memory of him.  and that, "coincidentally", jonathan's birthstone happens to be an opal and he was born on the 8th.

recently, i realized that i had never posted pictures of the keepsakes that have been given to me since jonathan's passing.  and because this is jonathan's baby journal, the pictures belong here...

the opal, diamond, and white gold necklace from my mother

friends gave us jonathan's name, in scripture verses

a friend gave me this lucinda kay "peas in a pod" necklace, symbolizing both of my children

two of my friends gave me this helen ficalora necklace with engraved silver charms

tiny footprints inside the cover of my favorite.

we were also given several beautifully handmade or embroidered blankets, framed art with scripture, and several christmas ornaments that mean a lot to us. 

so as i was thinking about what these keepsakes mean to me, (and what i wouldn't give up to have jonathan back, happy and healthy) i realized that there was a greater, more valuable keepsake from our journey with jonathan given to me by the Lord Himself:

a deeper faith.

"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy"  ~1 Peter 1:6-8


what He knows

it seems that sometimes in life, trials and devastation causing suffering are not solitary events.  they tend to come in the company of each other, don't they?  this has been the case for us lately, as a couple other lesser struggles and disappointments have come about in recent months following jonathan's life and death.  we've questioned God's reasoning.  we've questioned God's timing.  we've questioned decisions we've made after praying and feeling led in one direction that now seem wrong.  we've been stressed and confused.  and we're tired. 

little did i know there was a big lesson for me in one of these recent trials.

we have two female cats, a black and white one and a fluffy gray one.  we found the black and white cat on the side of the road when she was just five weeks old, apparently tossed from a car.  i spotted her peeking up through the grass from across a busy highway, while we were driving 45 mph.  therefore, greg thinks i planted her there so that we could happen upon her and keep her.  (i didn't.)  we bottle-fed her and raised her as the only parents she's known, basically.  the other cat was given to us by a friend when she was just a kitten, about two years later.  one cat is really sweet and friendly, and acts more like a dog.  the other cat is just plain mean sometimes, with a real wild streak. now, which one do you think is the mean one?  yep, the one we rescued as an orphan and now lives like a queen.  but i digress.

lounging in the bathtub

well, as if it wasn't bad enough to lose our baby boy, just three weeks after burying jonathan we almost lost our (nice) cat to an undiagnosed condition.  we didn't think the emotional distress or timing could get much worse.

one day we noticed she was really lethargic and not eating.  the next day we were in the vet's office listening to him tell us she was barely alive and that she might need a blood transfusion.  needless to say, we weren't about to bury anyone or anything else.  for the next several weeks, the treatments that followed for this cat were pretty much torture for her.  she was poked, prodded, stuck with countless needles, and she slept in strange places with barking dogs.  we held her down and shoved medicine down her throat every couple of hours, which had its own set of unpleasant side effects.  and just when things were looking better, she suffered a pulmonary embolism.  that was the night we said goodbye to her, because we thought for sure the vet was going to put her down.  and we didn't know how much more we could take of it.

the cat was suffering.  on top of it all, she was probably deeply distressed by the treatments she surely perceived as torture that her "parents" were putting her through.  she couldn't understand that what we were doing was for her good, that we were trying to save her life.  she didn't know what we knew.

our cat seems to have fully recovered since then, thank goodness.  but gosh, we sure complained loudly to God about the added emotional and financial stress and the timing of the whole mess.  i didn't know there was a lesson in that experience specifically for me until i came to a section in the book "if God is Good" by randy alcorn, where he shares the story of a three-year-old boy who had ingested some kind of poison.  on the way to the hospital, the boy's father continuously slapped the child to keep him awake so that the child would not fall asleep and die.  the poor boy did not understand why his father was hitting him like this.  the child was suffering not only from the poison he had ingested, but because he was perceiving his father's slaps as cruel.  of course he could not understand that his father only did it for the boy's own good, to save his life.  the child didn't know what his father knew.

and then there's the story of a certain family i know very well *ahem* who seemed to have it pretty good.  they're what you might consider a typical "good christian family", blessed by a good marriage, good jobs, an adorable baby girl, a nice house, and good friends.  life was very...good.  and then one day they learned that their new baby-on-the-way was diagnosed with a fatal condition.  in just a single moment, life was turned upside down.  suffering began immediately and stretched out before them like a long, desolate road.  their baby died shortly after being born, their lives forever scarred by such a loss.  what good could come from that?  what good God would allow something like that to happen? 

the Father, whose ways and thoughts are higher than ours, did allow it to happen.   perhaps in His sovereignty, He planned it to happen, knowing full well the suffering that would fall on this family.  but perhaps He determined the suffering they experienced (and still experience) was for good; necessary to save their lives, to save someone else's life, whether spiritually or otherwise.  and while they can certainly see plenty of the good that came from their suffering, they can't begin to fully know what the Father knows. 

but what we do know is:

"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

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

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

the lesson i've learned is that knowing Him means knowing that He is good, whether in times of blessing or in times of suffering.  knowing He is good means we don't have to question what He knows. 

i'm praying that knowing Him is enough for me.



out of the blue today, i received a couple of messages reaffirming just how much my little jonathan's life has touched others in profound, significant ways.

it's been five months that he's been gone, and i'm still hearing these things. from people i don't know (or hardly know.)

it's simply amazing. humbling. encouraging.

thank you so much for letting me know how much my son's life means to you.

thank you for allowing me the opportunity to feel like a proud parent.

but mostly, thank you for reminding me that we serve an awesome God who can truly use any life for His glory, even a life that only lasted 40 minutes.


count it all joy

today, march 8th marks five months since we lost jonathan.  (it also marks the day his life began a year ago.  maybe that's TMI for most of you, sorry.)

five months seems like a long time from where i stand right now.  i know that grief takes all sorts of forms, and here at five months after losing jonathan, i guess what i feel mostly these days is just weariness.

while there's comfort in life going back to normalcy after a loss, there's also some grief that it has gone back to normal, whatever normal is these days.  life just moves on so quickly, without a second thought to those it leaves behind.   i feel sad that jonathan is being left behind.  there's only so much i can do for him with him not being here.  the parent in me wants to care for him in tangible ways, too, which of course i can't.  it's a bit draining at times.

so i stepped it in to high gear with kate.  i got her potty trained in no time.  i've been taking her to all sorts of playdates.  i've been patiently obliging her requests for "play with me, mommy" even when i don't feel like it.  i've been giving her lots of extra "snuggle time" when she wants it, where she wants it.  i've been making sure she's seeing me smile more than not.  basically, i've been spoiling her with love but still maintaining order and discipline in her day.  i feel that i can't let my grieving for jonathan, which tends to show up in my life as impatience, interfere with doing the best i can with kate.  maybe what i've described sounds easy.  but for me, it's draining.

also quite draining has been five months of grieving for jonathan and missing him.  he's always in the back of my mind, no matter what i'm doing or what i'm thinking about.  i could be in the middle of laughing at something i find hilarious, and yet the sadness of jonathan being gone is there. 

it's been five months of fighting those thoughts that come to remind me that "by now", if he hadn't had that extra chromosome, he would be laughing.  rolling over. sitting up.

it's been five months of trying to keep the memory of him fresh; for me, for my family, for anyone who cares.

it's been five months (and much longer) of experiencing lesser trials that have stemmed from the greater trial of carrying and then losing jonathan, such as friendships being strained and lost, the reappearance of the elephant in the roompublic negative reactions to our story, and an occasional sense of feeling alone or out of place, to name a few.

it's been five months of daily submission to the hard truth that God's plan to take him was better than my plan to keep him.

it's been five months of meditating on some very deep theological matters that, quite honestly, i have neither the spiritual maturity nor brain capacity to make much sense of any of it.

and on top of it all, God's been awfully quiet with me lately.  or maybe, i just can't hear Him right now.   which adds to the weariness, since the awareness of God's presence in our lives during my pregnancy and the months following had been extremely comforting.

yet, i do realize that all of these things i write about are not hidden from God, since He knows my every thought and prayer.  within a few days of voicing my weariness about everything to Him, He answered by leading me back to the scriptures that remind me that:

"The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." ~Deuteronomy 31:8

"And surely I am with you always, to the very end of the age." ~Matthew 28:20

and then yesterday at church, we had a very powerful time of worship that focused on the verses James 1:2-4 that says...

"My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience.  But let patience have its perfect work, that you may be perfect and complete, lacking nothing."

and we sang the song, "count it all joy":

Lord I’ll count it all joy
When my troubles
Close me in on every side
 Lord, I’ll count it all joy
When this road of faith
Runs through the darkest night

For I know You’re at work in me
Yes I know You’ll provide
All the grace I need

You have always been my Rock
I will trust You forever, forever
You have never failed me God
I will trust You forever, forever

Lord I’ll count it all joy
When the weight of sorrow
Drives me to my knees

Every heartache and pain
In Your mighty hands
Is forming Christ in me

And I know that Your Word is true
Yes, I know every trial
Will only prove

Who can separate us
From You and Your great love

it was at that moment, i realized that although the weariness i was feeling was very real and possibly even justified, my attitude needed to be adjusted yet again.  i was not counting it all joy.

and then, we sang the song, "blessed be your name."  it probably wasn't a coincidence that this song was also performed at jonathan's funeral.

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

we finished singing and one of the elders stood up to pray and he began by saying that while the Lord does choose to give and take away, He doesn't take away Jesus.  i didn't hear any more of the prayer because i knew that that was the cure for my attitude adjustment.
this whole time i have been mostly concerned with doing my best not to take kate for granted in the midst of my loss of jonathan, but i had in fact taken for granted the value of what i have been given through the gift of Christ.  through Christ, i have access to all of God's promises.  i have unconditional love from the Father.  He gives me the strength to overcome any loss.  He also reminds me that : "Whatever was to my profit I now consider loss for the sake of Christ.  What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord" ~Phillipians 3:7-8

i realize that lately, i have not been able to experience joy because i have focused too much on what i have lost, and not enough of what i have gained.  yes, there actually was gain from losing jonathan.  more than what i can comprehend in my limited abilities.  but i have seen enough to know that the gain is significant.  therefore, i haven't had a problem counting some of it joy, but i know it takes a greater faith to count it all joy. 

counting it all joy includes being pregnant with a sick baby.  counting it all joy includes losing friends and being publicly ridiculed because of the stance you take for your faith.  counting it all joy includes holding your baby while he dies.  counting it all joy includes living the rest of your life with a (insert name here)-sized hole in your heart.  the faith i want is the faith that still counts it all joy. 


"Let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God." ~Hebrews 12:1-2

"Do not grieve, for the joy of the Lord is your strength." ~ Nehemiah 8:10

"You have made known to me the path of life; you fill me with joy in your presence, with eternal pleasures at your right hand." ~Psalm 16:11