celebration of life

For where two or three are gathered together in my name, there am I in the midst of them. ~Matthew 18:20

this past friday night, greg and i, along with our families, were blessed beyond measure to be able to celebrate jonathan’s life with all of our friends. my sweet friends michelle, jennifer, and lisa put together a truly awesome event. i can’t begin to express our sincere gratitude to them, as well as to everyone who came, contributed, and celebrated with us. we were so honored and humbled by the turnout, which michelle estimated at over a hundred people at one point, who gave up their friday night activities to spend it with us.

we were also so touched by the overwhelming amount of gifts and monetary donations that were brought for children in need. it was incredible to see these two huge piles of baby items for the children's advocacy center and heart of the bride ministries, knowing that many, many children would be helped by them. there was everything from a crib and mattress, clothing, and diapers, to handmade quilts and blankets embroidered with "made specially for you as a gift from jonathan." we are so thankful that jonathan’s life is already making a difference. and this is just what can be seen and touched; the tangible difference. we trust that there is much, much more to God’s plan, yet to be revealed.

the celebration also included a buffet of wonderful food that was prepared by many people, as well as a huge, delicious cake. there were representatives from each charity who had the opportunity to share what the charity was about and how they were helping children. my friend tammy sang the beautiful song “my beloved” by kari jobe and then our church’s worship pastor, carey, spoke a beautiful and sincere prayer. like i said before, it all blessed us so much. we will cherish that evening for the rest of our lives.

enjoy the pictures! there are quite a few of them....

Make an on-line slideshow at www.OneTrueMedia.com

my tapestry

it’s a beautiful Sunday afternoon, and my house is completely silent. everyone is asleep, including the cats, except for me. i just can’t take a nap today, although i would love to. i have too much going through my head, but at the same time, i don’t know what to say really here other than it’s turned out to be an emotionally difficult week for me. with all the planning of jonathan’s care at the hospital, and the funeral and burial details, i suppose i am just emotionally exhausted from thinking about it all. i am trying to find a balance in celebrating this little life inside me and accepting the reality of his inevitable death, whenever it is that God has decided it should happen. and quite frankly, i simply still can’t believe that we have to even think about these things. this week, i have really felt the heaviness associated with not being able to see the big picture, God’s picture…and feeling like “why me?” instead.

thankfully, these moments where i am feeling a bit down tend to pass quickly. somehow, whether it’s through the laughter of my beautiful daughter, a hug from my husband, or even better: a perfectly timed, relevant scripture…things in the world are fine again and i am able to count my many blessings. actually, i lose count of them.

it was in a sermon several years ago that i first heard the analogy about “the big picture” being like a tapestry that God is weaving. since then, i have used this example many a time, usually to try to explain the unexplainable such as “why do bad things happen to good people?” we may never know, but i am thankful to know the One who knows.

Does suffering always make sense?
by John Piper

Certainly it doesn't make sense to us, no. But it does make sense to God. Therefore it is not irrational or ultimately absurd.

Our perspective is not God's perspective. We don't have the sight he has. There are numerous analogies of this. The one I like best, I think, is of the carpet. This one was used, I believe, by Corrie ten Boom, who suffered much as a person during World War II when she was imprisoned for helping Jewish people.

She said the suffering of the world is like looking at the bottom of a tapestry. God is weaving it from the top down, and he sees the picture developing. We're looking at it from the bottom up, and we're seeing all of these tangled threads. It doesn't look like it's making any sense at all, but it's the same tapestry.

In the Bible, God gives us enough evidence of his wisdom as a tapestry maker, enough glimpses of the big picture of the tapestry, and enough promises that he is going to make all the threads of our lives beautiful that, even when we can only see the bottom from time to time, we can trust him. And that's what we do in trouble.

We don't have to understand our own or another's suffering to the extent that we understand why it happened now, to this degree, and with these effects. We can't see all of that. What we can see are the promises, "I will work all things together for your good," and "I will magnify my grace in your weakness." God has given us enough in the Bible to know that there is a tapestry up there that I am a part of and that it's going to be beautiful. I'm going to hang on to him.

Weavings

My life is but a weaving
Between my God and me.
I may choose the colors
But He knows what they should be.
For He can view the pattern
Upon the upper side
While I see it….
Only on the underside.
Sometimes He weaveth sorrow
Which seemeth strange to me
But I will trust His judgment
And work on faithfully.
Tis He who fills the shuttle
For He knows what is best
And I shall weave in earnest
And leave with Him the rest.
At last when life has ended
With Him I shall abide
Then I may view the pattern
Upon the other side.
Then I shall know the reason why
Pain with joy entwined
Was woven in the fabric of life
That God designed.
--Shawnee Kellie

song for the journey

praying our journey with jonathan is honoring to the Lord and a sweet song to His ears.

difficult tasks

it’s a beautiful spot. on this particular day, with the backdrop of dark grey clouds, all of the trees, shrubs, and grass seemed so much more green and full of life. the place smelled of freshly cut grass. there is a wonderful oak tree just above that provides plenty of shade on a sunny day. wind chimes hanging nearby tinkle in the wind and birds chirp happily in spite of the coming storm. i love this spot and hate it at the same time. this is the spot where we will bury our son.

this past week, greg and i made a majority of the funeral arrangements for our baby boy. as difficult and emotional a task as it sounds, we actually felt quite a peace about it all. neither greg nor i even shed a tear during the process, although several times i felt like i was close. there was one moment, as we sat in a very cold room surrounded by displays of urns and coffins, that as the funeral director casually described how they would pick up our son from the hospital and bring him back there, i almost lost my composure. otherwise, i felt very strong; protected from the devastating grief and pain that we could have experienced in this situation.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." ~Isaiah 41:10

"My presence will go with you, and I will give you rest." ~ Exodus 33:14

"Never will I leave you; never will I forsake you." ~ Hebrews 13:5

i also had a heightened awareness of jonathan’s little jabs and kicks while we were there. i did feel a little guilty about planning a funeral for a baby who is very much alive. i know it must be done, but it was like he was reminding me the whole time, “but mommy, i’m still right here with you!” i wish i could tell him that everything we are doing for him is because we love him.

later that evening, i received an email from a friend. she had passed my car on the road as i was turning into the cemetery entrance, and though she wasn’t even sure it was us she saw, she felt led to pray for us right then and there. as i read her message, i was blown away, and finally, the tears came. i truly believe that God planned for her to pass me at that very moment so that someone would be praying for us while we were there. i know our strength during that time was not something we could have mustered up ourselves. again, God had provided, and had gone before us.

"I will answer them before they even call to me. While they are still talking to me about their needs, I will go ahead and answer their prayers!" ~Isaiah 65:24

“With all prayer and petition pray at all times in the Spirit, and with this in view be on the alert with all perseverance and petition for all the saints [Christians]” ~Ephesians 6:18

jonathan update
yesterday, we had a somewhat uneventful doctor's appointment. no ultrasound this time, so no baby measurements to report. jonathan is still moving around quite a bit and his heart rate averaged 137 BPM while we were there. oh, and i have gained 10 pounds in 2 months! that's 13 pounds total now, at 25 1/2 weeks. there is no doubt our little guy is growing. i don't blame all the weight gain on him, but he DOES like chocolate, something i couldn't eat at all while i was pregnant with kate.

we also discussed the birth plan/ jonathan's care with our doctor. right now, from what we know of jonathan's complex heart abnormalities, if he is born alive, we are only going to provide "comfort care" for him. this means that we will just make him comfortable and love on him during his final minutes or hours. the other option is to submit jonathan to multiple open heart surgeries beginning moments after birth. i have done quite a bit of research on this, since we are (obviously) completely responsible and accountable for making decisions for jonathan's care if he is born alive. apparently, there is not much of a chance that jonathan would survive such a surgery after birth (as little as 5%) and even if he did survive the surgery, he still faces many more difficulties and surgeries from his other major organ abnormalites that we currently know of. we certainly don't want him to suffer, and we feel that submitting him to any sort of surgery would risk his comfort and possibly shorten his life instead of lengthen it.

needless to say, it has been a difficult week for us to have to discuss these type of decisions for our child. please pray for us, that we would be granted wisdom in making the right choices. please pray for our doctors, nurses, and other medical staff, for wisdom and sensitivity in their care and interactions with us now and in the future as we head towards delivery in the next 2-3 months. also, perhaps in caring for jonathan, that maybe their hearts would be changed in someway. please also pray that God will continue to provide all the grace and strength we need daily in order to be thankful for what we have been given, and to surrender any grief or pain to Him who promises peace in return.

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." ~Philippians 4:6-7

32 years and 25 weeks

yesterday, we celebrated my 32nd birthday and 25 weeks with jonathan on the same day. it was nice to celebrate as a family of four.

string of pearls

this weekend i received our keepsake box from the organization "string of pearls." string of pearls provides several resources for families like us who have received fatal prenatal diagnoses. i really wish we didn't qualify to receive one of these packages. but since we do, i am so very thankful that organizations such as this exist to help with some of the burden.


our package included a beautifully handmade prayer blanket, a tiny knitted baby cap, a plaster kit to make hand and foot molds, clay for creating hand and foot prints, a christmas ornament with paint to make footprints on the ornament, a journal, a small photo album, and an envelope for locks of hair, plus more. i was just so touched, pulling out one thing after another. someone who has been there before me knows very well all the things i will likely need to make lasting memories of our sweet jonathan. a very sincere thanks to laura with string of pearls.

and if anyone can think of any other things we can do or ways we can memorialize jonathan's time with us, please let us know.

a time to celebrate

today i am really struggling to type words that will completely relate how i am feeling: blessed, thankful, overjoyed, excited...who knew that you could still feel this way in such dour circumstances?

here i am, pregnant with a baby boy who is not expected to survive. the medical community considers his condition "not compatible with life" and allows for him to be easily and quietly discarded. for this little boy will never say a first word or take a first step. he will never throw a baseball or pick on his big sister. he won't grow up to be a doctor. and he won't ever get married or have children. these things are how the world defines a life.

i am so, so thankful that this is not how God defines a life!

when we learned of jonathan's prognosis, suddenly i became very aware that he would be considered a waste by many. my heart's desire became that jonathan's life would mean something, anything. i am so thankful that God knows the deepest desires of my heart and that it pleases Him to answer them. greg and i are completely humbled and honored that jonathan's life is already showing to hold more purpose and meaning in just a short amount of time...than what some people (including me) are able to accomplish in a lifetime.

greg and i have been so blessed by our friends, who are putting together a Celebration of Life honoring jonathan on august 28th. this celebration will benefit two organizations, the children's advocacy center and heart of the bride ministries, both in niceville. the children's advocacy center works to prevent child abuse, protect children and to restore lives of children affected by abuse here in our county. the heart of the bride works with and provides for orphans in several third-world countries. most of these children have suffered greatly and have never experienced the loving care of a mommy and daddy, like we had hoped to provide for jonathan.

we are hoping that all of our friends, family, and prayer partners will come celebrate with us! please consider donating in jonathan's name if you aren't able to make it and want to do something for him.

~Come and celebrate the life of Jonathan Tomaschko~

Friday, August 28, 2009

6:30-8:30 pm

Rocky Bayou Baptist Church

Niceville, FL

If you would like to honor Jonathan’s life in a tangible manner,

Greg and Lauren have asked for you to consider the following:

• A monetary donation to Heart of the Bride

• A gift to Heart of the Bride orphans*

• A gift to the Children’s Advocacy Center

• Words of encouragement, scripture or prayer for a keepsake box.

Cards will be available for you on the 28th.

Representatives from both HOB and the CAC will be at

the celebration to collect tangible gifts.

We ask that your gifts be brought unwrapped.

Labels designating HOB or CAC will be available on the 28th.

General gift suggestions for HOB or CAC include:

new or gently used clothing for ages 0-2,

blankets, board books, diapers (cloth or disposable),

sweaters and coats for 0-2.

*Gift registries have been established at Walmart and Target.

Both registries can be found under the name “Heart of the Bride Tomaschko.”

This is the Lord's doing, and it is marvelous to see. ~Psalm 118:23

You faithfully answer our prayers with awesome deeds, O God our savior. ~Psalm 65:5

24 weeks

sometimes i like to go back and read my prior blog entries, because usually i catch things i have written that aren't evident to me as i am writing them in the moment.

i am a little disappointed in myself to realize i spend a lot of time blogging about jonathan's death, which hasn't even happened yet. i really don't spend all my time thinking about it, i promise. unfortunately, i guess that's just what has come out when i've blogged lately. i imagine it's due to the fact we have been spending a little more time thinking about funeral and burial plans. i will try to do better about focusing on the positive: jonathan is very much alive and...well, kicking....literally. i don't want to say "goodbye" too soon. i haven't had a chance to even say "hello" yet.

we are celebrating 24 weeks this week with jonathan. i can tell that he is growing! i can feel his body move at the very top of my belly all the way to the bottom, at the same time. i am thankful for being able to notice all the little quirks jonathan has. it helps me feel closer to him, like i am really getting to "know" him even though we have not yet met. for instance, he prefers to curl up on the right side of my belly. i rarely feel him on the left side. he is definitely not a morning person, as it takes a couple of hours to pass after i wake up before i even feel him move. his most active time is in the evenings. most nights i lay in bed and watch him move around, and i try to figure out which parts are his arms and legs. or i just rest my hand on my belly and wait for him to nudge me and i nudge him back. it's our own secret language. this is my favorite part of the day and the only time i can really focus on just him without a lot of distraction. i like to spend this time praying for him.

i have also been spending the evenings listening to his heart beat. at our last doctor's appointment, his heart rate was a high 174 beats per minute, even though it was very irregular. lately, i have become a bit more concerned because his heart rate is as low as 100 BPM but then goes back to 150 BPM. i got quite a scare when i heard it at 100. but the more i listen to it, i realize that it's just what his heart does. it sometimes beats in a pattern of 3s, then it beats steady for several minutes. then it goes to 2s. then maybe 3s again. if there is something seriously going wrong, there isn't much we can do about it. we don't really have any medical intervention available to us because of his condition. we don't have any choice but to trust that everything will play out as it should, according to the plan God already has in place for jonathan's life. i have to remind myself of this daily. therefore, i have chosen to just focus on his movements throughout the day for signs he is doing OK, rather than relying on his heart rate.

our next doctor's appointment is coming up next week. i hope to learn that jonathan is still growing and doing as well as he can despite his condition. i also hope to learn that his little heart is holding up just fine. he certainly has been a fighter thus far!

as always, thank you for your faithful prayers.

the ministry of sorrow

a few short months ago, i sat inside a church on a beautiful afternoon and watched a dear family – friends of ours - grieve for their infant daughter. i had never been to a funeral for a child before. i was there listening to the father speak from the stage for several minutes before i realized the tiny white box up near where he stood was the casket. it was a breathtakingly sad sight. there should be no need for caskets that small.

a few nights later, greg and i brought them a meal and spent some time talking about their daughter and their experience. we were completely astonished by their strength. i remember both of them talking about how as heartbroken as they were, they were still submitted to and believing that the Lord’s will for them, for them to lose their daughter, was part of a much greater plan. in fact, at the funeral at least two people approached the alter and prayed to receive Christ.

once our news about jonathan broke, this particular friend of mine was one of the first people to contact me and offer support. while it has been a true blessing to be surrounded by our wonderful friends during this time, to be able to confide and talk to someone who has been right where i am just recently…someone who can truly empathize…has been a God send. there is a certain comradeship in sorrow. i learned she also volunteers at the hospital and is on-call for support of parents who have lost an infant. she has bravely taken her grief and turned it into helping others. she has been given a ministry.

she is not the only one who has experienced significant loss to reach out to me. unfortunately, it has become obvious to me that losing a baby is more common than i ever thought. ladies i have known for years have reached out to me and told me about their similar experiences of which i was unaware. and people i have never met have sent me emails and cards, sharing their own personal stories with me and letting me know they are praying for me and available to me if i ever want to talk.

one of the more touching emails i have received was from a woman who had come across our album on the “living with trisomy 13” website. she congratulated me on expecting a boy and said that when she was very young, she too had a trisomy 13 baby. she then explained that she had been forced to have an abortion. she encouraged me to cherish every moment i have with jonathan and wished the best for us.

i could completely sense the sorrow and regret that this woman still experiences through the tragic loss of her baby. it was apparent just in the context of her visit to this particular website and reading our story, years after her loss. i was so touched that she took the time to encourage us and bless us. also, the fact that she congratulated me substantiated our apparently mutual belief that there was still something to celebrate in jonathan’s life in spite of his death sentence.

i surely didn’t think of ministry when jonathan was diagnosed. like i have explained before, it took a couple of weeks just to get over the shock of what is to come for us. i can barely think of ministry now, since we are still in the very midst of our trial. i confess that most of the time i am an unwilling participant in my worst nightmare. i think of moses’ reaction when the Lord instructed him to rescue israel. “O my Lord, please send someone else…”

however, it has become clear what the Lord is desiring of me:

“Comfort, comfort my people, says your God.” ~Isaiah 40:1

Store up comfort. This was the prophet Isaiah's mission. The world is full of hurting and comfortless hearts. But before you are competent for this lofty ministry, you must be trained. And your training is extremely costly, for to make it complete, you too must endure the same afflictions that are wringing countless hearts of tears and blood. Consequently, your own life becomes the hospital ward where you are taught the divine art of comfort. You will be wounded so that in the binding up of your wounds by the Great Physician, you may learn how to render first aid to the wounded everywhere. Do you wonder why you are having to experience some great sorrow? Over the next ten years you will find many others afflicted in the same way. You will tell them how you suffered and were comforted. As the story unfolds, God will apply the anesthetic He once used on you to them. Then in the eager look and the gleam of hope that chases the shadow of despair from the soul, you will know why you were afflicted. And you will bless God for the discipline that filled your life with such a treasure of experience and helpfulness. ~Selected

God has shown me during this time is that he is an incredible comforter himself. he comforts me through his promises, through the love and support of our family and friends, and even through the words of strangers. he knows exactly what i need, but not just because he is God. it’s because he can completely relate: he knows exactly how it feels to have a son die.

"Blessed are those who mourn, for they will be comforted." ~Matthew 5:4
"He heals the brokenhearted and binds up their wounds." ~Psalm 147:3

i truly desire that greg and i will one day be at the point where we can minister to others in their grief. we still have a long road ahead of us, full of things we must learn and experience first. but it is a goal of ours.

"Heaven rejoices when you go through trials with a singing spirit. Your Father's heart is cheered when you endure the test and do not question His mercy. Be like a beacon of light and His own glorious radiance shall shine through you and Christ Himself will be revealed." ~Francis J. Roberts

pray for us that we would be sensitive to God's leading as we begin to embrace what His vision might be for any future ministry.

good news today!

ok, bear with me here...before you can understand our good news, i've tried to sum up all the information as best i could so that you will be able to better grasp just how great this news is for us.

one thing i haven't really gone into detail on here, has been jonathan's amniocentesis results. of course, the amnio confirmed full trisomy 13. trisomy 13 just in and of itself would have been by chance (up to 1 in 25,000.) but the genetic counselor told us that the trisomy 13 that jonathan has was by way of something called translocation, which means his extra 13th chromosomes were actually attached to the 14th chromosomes. this attachment between the 13th and 14th chromosomes is the most common translocation found and it's called Robertsonian Translocation. i have included pictures of chromosomes that show normal, trisomy 13, and trisomy 13 with the translocation for your understanding, below:





normal male chromosomes (above)

Female with Trisomy 13 (above)

Male with Trisomy 13, Robertsonian Translocation (above, look at the #14) this is what Jonathan has.

the fact that jonathan has a translocation at all concerned us greatly, because it usually means that either greg or i would be a carrier of the robertsonian translocation. if so, it would mean that our chances of having another trisomy 13 baby were much higher. i can't explain this well, so here is part of an article that describes it very clearly:

"Individuals with Robertsonian translocations can have these as the result of a spontaneous event occurring during the meiosis (in either parent) that produced the egg or sperm from which they were made, shortly after conception, or from the inheritance of the same from one of their parents. Robertsonian translocations are present in approximately 1/1,000 newborns. Individuals with balanced translocations are usually healthy and often unaware of their condition, especially if there is no prior family history that has led to the diagnosis, and often their chromosomal ‘abnormality’ will not be discovered until they have difficulty having children. The problem arises when individuals with Robertsonian translocations try to make gametes [sperm/eggs.] In the case of someone who has a balanced 13;14 translocation, the possible gametes she will produce may contain:

1) One free copy of chromosome (chr) 13 and one free copy of chr 14.

2) The translocation (chr 13;14) chromosome alone (which contains one copy of chr 13 fused with one copy of chr 14).

3) Chr 13;14 + one free copy of chr 13 (essentially, a gamete with TWO copies of chr 13 rather than just one).

4) One free copy of chr 13 (and NO copy of chr 14).

5) Chr 13;14 + one free copy of chr 14 (TWO copies of chr 14 rather than just one).

6) One free copy of chr 14 (and NO copy of chr 13).

Obviously, 3 through 6 are gametes that have the incorrect number of chromosomes (either too little or too much genetic material). When these gametes get together with the, presumably, ‘normal’ gametes from her partner (which contain one free copy of chromosome 13 and 14), the following possibilities result (in the same order as above):

1) Two free copies of chr 13 + two free copies of chr 14 = NORMAL

2) Chr 13;14 + one free copy of chr 13 + one free copy of chr 14 = translocation ‘carrier’ (just like Mom) with NORMAL TOTAL amount of genetic material

3) Chr 13:14 + TWO free copies (one EXTRA from Mom and one from Dad) of chr 13 + one free copy (from Dad) chr 14 = TRISOMY 13

4) Two free copies chr 13 (one from Mom and one from Dad) + ONE free copy of chr 14 (NONE from Mom and one from Dad) = MONOSOMY 14 (miscarriage)

5) Chr 13:14 + one free copy of chr 13 (from Dad) + TWO free copies (one EXTRA from Mom and one from Dad) chr 14 = TRISOMY 14 (miscarriage)

6) ONE free copy chr 13 (NONE from Mom and one from Dad) + two free copies of chr 14 (one from Mom and one from Dad) = MONOSOMY 13 (miscarriage.)

Therefore, mathematically, she has only a 2 in 6 (33.3%) chance of having a baby that has the right TOTAL amount of genetic material; one of these will be entirely chromosomally normal and the other will be a translocation ‘carrier’ just like herself. Two-thirds of her babies are at risk for being chromosomally ABNORMAL.

But, as I mentioned at the outset, things are not quite that simple. Indeed, her actual risk for having a baby with a chromosomal abnormality is much lower than this. The monosomy 13 and 14 embryos will not be successful at all and the trisomy 14 embryos also have very little chance of surviving much of the first trimester. Most trisomy 13 embryos will also be lost early in first trimester and the few that survive will have only a small chance of surviving the pregnancy and even a smaller chance of living more than a few hours or days after birth. These babies all have severe congenital malformations and if they manage to survive birth and the neonatal period, profound metabolic disturbances, and mental retardation. Indeed, the ‘selective forces’ are so strong against these chromosomally abnormal conceptuses that at least two-thirds of her pregnancies in which a pregnancy is actually confirmed will be chromosomally normal and the chances of actually DELIVERING a chromosomally abnormal baby are probably only about 1%! The overall risk of miscarriage is about 25%. "

so finally, here is our good news: the genetics counselor called me today and told me that she received the blood test results that showed both greg and i have perfectly normal chromosomes! which means, kate does too. the chances of us having another trisomy 13 baby is less than .006%, and kate doesn't have to worry about it either when she's ready to have kids. this is wonderful, wonderful news and an answer to our prayers. when i found out, i literally did a praise-the-Lord happy dance in the middle of a store. and then i privately shed a couple of tears. this is truly the next best thing that could have happened besides jonathan being miraculously healed. i mean, obviously we believe that God is in control and the creator of any future babies we may have. we also know that we can make a beautiful and smart NORMAL baby. but just to know that trisomy 13 probably won't happen again fills me with even more hope for the future of our family.

preparing for jonathan

on monday we celebrated 23 weeks with jonathan. my pregnancy with him has very much felt like my pregnancy with kate: completely normal. people ask me all the time “so, how are you feeling?” my immediate reaction is always to reply about how i am doing physically: “Great.” it’s true…the morning (all day) sickness is long gone, i am getting decent rest, and i feel the constant reminder of my precious jonathan through his little kicks and punches all day long. i have absolutely nothing to complain about. i treasure this little life inside of me and thank God for him everyday.

because i feel so "normal", every day i shake my head and marvel about how if not for the science of ultrasound, we wouldn’t have a clue something was wrong with him. both greg and i are glad we know. i am thankful for the months we’ve been given to prepare, emotionally and spiritually. but more than that, i’m thankful that we knew before we began preparing our lives for the arrival of our baby boy into this world; before we started decorating the nursery, before we bought the first piece of clothing. i think those things would have made a mockery of us in a way, if we aren’t to bring jonathan home. i have come to know several stories now where the families did not know until after birth and the baby didn’t make it. to me, that circumstance would have been so much more difficult to bear. the Lord has been tender to us by allowing us the foreknowledge. my heart truly goes out to those families who were caught off guard.

so last week i made the expectant moms' customary pilgrimage out to a huge retail baby store. i needed several things for kate, but i also wanted to take the opportunity to look for a couple of things for jonathan. i hadn’t yet bought him anything. i have realized lately that he could arrive at anytime, so i wanted to be at least a little bit prepared with some things we would need at the hospital.

i didn’t really think through how being in that store or shopping for jonathan would make me feel. the moment i walked inside, i felt that awful feeling of sorrow creeping up on me. i purposely avoided the aisles full of all the things i would have needed if jonathan was going to be able to come home with us as a healthy baby. pregnant moms were slowly perusing the aisles, adding items to their gift registries. older ladies walked around with lists, obviously shopping for mom-to-be’s. i was just another pregnant mom in a baby store, except i was probably the only one who was sad about being there.

i wasn’t sure what i needed for jonathan. i knew that i wanted to buy a soft, white blanket to wrap him in for his hospital pictures. i also knew i would need a nice newborn-sized outfit and tiny socks, perhaps for him to be buried in. however, i don’t know how big he will be when he’s born, or what season of the year it will be in. eventually, i found the perfect blanket, as well as a nice fall/winter newborn outfit. i actually hesitated at first when i saw the price. how could such a small outfit cost so much? but then i remembered that it may be the only item of clothing i ever buy for him. it is money well spent.

i was also reminded by the cheerful gift aisle that i need some keepsake items, such as a shadowbox, maybe a shortened-version of a baby book. i may have to find the ones appropriate for my situation online. for instance, they sell birth announcement cards. i will likely need birth and death announcement cards. i won't be finding those in a store anytime soon. however, i did find a baby-sized bible that was covered in a beautiful, embroidered white fabric.

one thing that has become apparent to me during this experience with jonathan and magnified by this particular baby store outing is that in the past i have placed value on things that are no longer important. or actually, that never really were important now that i see a bit more of the bigger picture. it reminds me of the verse: "For now we see through a glass, darkly..." ~1 Corinthians 13:12. being in a pit of despair isn’t much fun at all, but things do become much clearer down here. there are fewer distractions. the things that are truly important remain, but everything else fades away. for instance, it doesn’t matter what brand clothing my child wears or the style of décor in the nursery. all the material things i thought i "needed" to provide for kate when she was a newborn seem so frivolous now compared to the more substantial things i need to provide for her baby brother. by saying this, i don't mean to discount the great joy expectant moms have when the time comes to register for gifts and to select all the fun items they will need. i just mean that there is a line between need and want. it's the same in life. i'm trying to become content in my circumstance and to be more careful about what i place value on. but most of all, i'm mindful to enjoy and be thankful for every moment i've been given with jonathan.

"Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also." ~ Matthew 6:19-21

"I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through [Christ] who gives me strength." ~ Philippians 4:11-13

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." ~1 Thessalonians 5:16-18

a journey of faith

the following blog includes several excerpts from my journal, written over the past month.

so many of you have loved us and encouraged us daily with cards, emails, and blog comments. i thank God for you everyday. we have heard many times now how strong and even surprising our faith has been during this trial. my first reaction to that is that i’m surprised too! but i stand firm on the fact that it is not anything we have done on our own. it is because of all of your prayers for us and God’s love and provision for us that we can be strong during this trial. but in order to be authentic here on this blog, it is important for me to share my struggles as well.

i was thinking the other day about God’s plan for jonathan’s life, you know, the one i mention over and over again here on this blog. i realized i tend to acknowledge it as if it stands alone; as if it’s compartmentalized and not a central component of my very being. the truth is, God’s plan for jonathan’s life has just as much meaning for him and his future as it does for me and my own journey of faith.

from the moment we learned of jonathan’s condition, through the months of anguish sure to come, my faith has been and perhaps still will be, shaken a bit. some days are worse than others. there are those moments where i’m just ready to shake my fist at God, scream aloud that it’s not fair, and turn my back. to know that at anytime in the next few days or months, i will be walking into a maternity ward to deliver a baby, and will most likely leave empty-handed and brokenhearted... how could God expect me to react any other way to such heart-wrenching conditions? i consider myself a strong believer, yet, i have never been placed in a circumstance quite like this, which requires me to walk out my faith like never before. in fact, the faith i’ve had for years now seems to be inadequate for the task ahead.

i guess i could sum up my faith prior to this, simply by saying that if i could bottle it, the label would say “caffeine-free, diet faith.” it lacks the quality ingredients that can only be gained by experiencing God in ways that go beyond the neat little phrases and familiar verses people use to somehow validate their faith. it's also much, much easier to believe in and love God when things are going well in life. while i have always chosen to believe everything He says is true; to walk by faith and not by sight…now it is like He is asking me directly, “so do you still believe everything I say I AM?”

there are times where i feel like i will totally be consumed by the sorrow of what's to come. i have never felt anything like it before. it makes my heart heavy and my stomach queasy. i feel like i breathe it in and it's thick and suffocating. it's exhausting to wake up every morning, even when i've gotten good sleep, and remember that i'm one day closer to my baby dying. it wears on my patience.

Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. ~Lamentations 3:22-23

i have mentioned in a previous blog post that to “let go and let God” (see, there’s one of those neat little phrases right there…) has been freeing for me. actually, it has been more than freeing…it has been exhilarating, like jumping in an icy-cold spring of water on an excruciatingly hot summer day. it is refreshing and cleansing. to see God at work, meeting me right where i am, without me doing much of anything except perhaps bringing to Him faith the size of a mustard seed…it’s incredible. there are days where my prayers sound exactly like this: “OK, God. Help.” and He does. He doesn’t take away my awful circumstances, but He makes them bearable. everything He promises me remains true. again, He proves that no matter what, i can trust in Him.

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. ~Psalm 3:5-6

what a journey of faith i am on. God has taught me more in the past few weeks than i have learned in 31 years. i am learning that in order to have strong, steadfast faith, one must endure trials and testing. the path is not easy, but i'm learning that where there is sorrow, there is still joy. where there are tears, there are still smiles. where there is trouble, there is still triumph. where there is silence, God still "speaks" to me through his word and gives me comfort that cannot be found anywhere else or through anyone else. my understanding of who God is has increased. my faith has become stronger, and for that i am thankful. one day, i would like to be at the point where i am thankful for this present suffering. one day, i would like to be able to look back at what i had walked through and, if i was given the choice to change my circumstances, that i would still choose not to change a single thing because of the faith, wisdom, and other blessings i had gained through the experience. i am not there yet, but i know it is a work in progress.

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us. ~ Romans 5:1-5

a sweet friend sent me this song during the time i was journaling these things about faith. maybe it will speak to you as it did to me: