a few updates

"Researchers believe that about 95% of babies with Trisomy 13 are miscarried or stillborn."

we have made it 31 weeks!

yesterday, i went in for an appointment with my OB and i was pleasantly surprised with an ultrasound. it has been a few weeks now since we have seen jonathan, so i was very happy to see my little miracle on the screen. he was sleeping, but his little heart was beating regularly and his diaphragm was moving as if he was breathing. my OB explained that he was just "practicing" breathing for when he is born. she did a whole body scan and said that the main concern that she saw was still his kidneys. they are really, really large. but the good news is that there seemed to be a little more amniotic fluid today! an answered prayer! jonathan is also still breech, but we're still praying he will turn in time for delivery. he looked so good, like a perfect little angel. we even got a 3D picture of him "praying."

(profile of his face shows eye and nose pointing to the left, with both hands "clasped" up near his mouth. isn't this so sweet?)

we are starting to look towards an induction date the first week of november. we want to wait as long as we can, but i understand that in some cases it is better for both the mother's and the baby's health when the baby comes a bit sooner than the due date. my doctor and i are agreeing in prayer that we would like it to be very obvious to us that the time has come, whenever that may be. greg and i want to feel at peace about it. when this season comes and goes, there is no room for guilt, no room for regret. i sincerely appreciate having an OB who understands this and believes the same.

*****

updates:

peace
since i posted the blog "journey of faith, part two" (and i mean literally, hit the "publish post" button) i have experienced a great peace about everything. i'm sure it has a lot to do with all of your faithful prayers on our behalf. but i have a feeling it's mostly because i have truly surrendered what happens in the next few weeks to The One in Control. "by faith" i have been leaning back on God's promises to us and we know that God is not a liar. wow, if you have not tried this with any trial you may be experiencing and are in need of peace, i highly recommend it!

meeting with the social worker
directly after my disappointing OB appointment that i refer to in "journey of faith, part two", i went to meet with the birth center's social worker. it was very difficult for me to be in the birth center, especially since i was so discouraged with the way jonathan's heart had sounded that morning. i could barely talk without crying. it was almost too much. however, i got most of our questions about d-day answered. we've pretty much got our birth plan ready to execute and we feel confident that most if not all of our expectations will be met. it definitely makes me feel comfortable in our choice to deliver at this hospital, rather than in pensacola. i'm sure sacred heart in pensacola would be more than wonderful to us, but it will be nice to be closer to home, family, and friends.

photographs and keepsakes
i have received many, many messages about the importance of having a photographer capture every moment of jonathan's birth and life. we have lined up a photographer to be there, and in case she can't we have not one but two backups, including a photographer from the organization now i lay me down to sleep. we have also confirmed with the hospital our desire to keep any and all momentos from jonathan's birth as well as their cooperation with getting all the keepsakes we possibly can during our time with him, such as footprints, etc. thank you for your concern with this, and for your ideas on how to make memories of this time.

and finally...
one aspect of participating in the newspaper story that we did not really think through was the negative reaction. i really hate to bring this up, because the last thing i want to portray is that i'm more worried about the negative than the positive. i'm not. i'm actually trying to see the good in it! sure, we understood that not everyone would agree with our decision to carry jonathan. we just didn't imagine anyone would spew insults and hatred about it in the online comments following the story. (these comments have since been removed.) truly, i have nothing to say to these very few people because i know in my heart that we made the right decision. faith-based reasons aside, we are more than supported by our families and very experienced and skilled physicians about it. we have been assured that jonathan is not suffering and will not suffer in anyway by our decision. we have felt nothing but peace in our hearts about it. enough said.

sunday, the day the article came out, turned out to be a crazy day. so by the time kate went to bed that night i was exhausted, both mentally and physically. i spent some much needed quiet time praying and thinking about all that had come about because of the news article. i was incredibly thankful for all the support but i knew i needed a godly perspective about the negativity. i didn't want just a few negative comments out of the many, many supportive comments to steal my joy. so i gave it all to God and asked Him to teach me something about it.

during this quiet time, the concept of persecution popped into my mind. it was something i had never thought about before. i have always thought of religious persecution as being tortured or killed for following Christ, and that it was mostly experienced by people whose faith is much greater than mine. but i found it simply means any kind of oppression or harrassment because of faith or beliefs. i am not saying here that we are experiencing persecution on some grand level or anything, but only that i should have prepared myself a little better for the discomfort associated with the personal attacks levied against us and our faith. afterall, God warns us that it is coming:

"In fact, everyone who wants to live a godly life in Christ Jesus will be persecuted" ~2 Timothy 3:12

however, there is a blessing that comes with it:

"Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of [Jesus]. Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you." ~Matthew 5:11-13

as well as these commands:

"But I tell you: Love your enemies and pray for those who persecute you" ~Matthew 5:44
"Bless those who persecute you; bless and do not curse." ~Romans 12:14

and finally, a reason to delight in it:

"That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." ~2 Corinthians 12:10

isn't this wonderful? what have we to be afraid of? if anything, this just is another way God is showing us that we have made the right decision. if these personal attacks had not happened, i would not have learned this lesson. thank you Lord that You have taken something difficult and uncomfortable and given me more strength through it.

bless all of you who are reading this.

from our family to yours

we would like to thank YOU for all the love and encouragement you have shown us after the newspaper article was published. we never expected such a huge reaction to our story. thank you for all of your emails and blog comments. we have read each one and have been touched your sincere words of support. while it might not be possible for us to respond to each and every email or comment, please know that they really do mean so much to us and that you have blessed us tremendously. we hope you will continue to follow our story and pray for us. we still have a very tough road ahead and we could use all the prayers you are willing to offer up on our behalf.

with love and gratitude,
lauren, greg, and kate

"a purposeful life"

a few weeks ago, we were contacted by wendy victora from our local newspaper about doing a story about our journey with jonathan. today, the article was published (and on the front page nonetheless!) it was a little surreal to read our story in print, but we were very pleased with how it was written. we have appreciated the outpouring of support and prayers for our family.

you can read the article online at nwfdailynews but i have included it below as well.

Couple prepares to say goodbye to unborn son (with blog excerpts) Lauren and Greg Tomaschko hope their son, Jonathan, is born before they lose him.

September 26, 2009 6:59 PM
Wendy Victora
Daily News

For now, Jonathan Tomaschko is a tiny foot in his mom’s ribs. A ricochet of mini hiccups jiggling her belly several times a day. Each time he moves, his mom stops and concentrates on what he is doing. She doesn’t want to miss a minute of her son’s too-short life.

Jonathan is a baby who might live his entire life inside of his mom. If he does not die before he is born, he will die soon after. A few minutes. Maybe a few hours. Days would take a miracle.

“Not compatible with life” is the sterile medical phrase assigned to Jonathan’s condition. Trisomy 13 is a rare, always fatal, chromosomal defect. His heart and kidneys cannot function outside of his mom’s womb. He has an extra chromosome in every cell of his body.

“Meeting our son alive is our greatest desire in all of this,” says his mom, Lauren, adding that she and his dad, Greg, pray that they will be able to hold and comfort their son when he dies. “It’s our chance to be parents to him and to show him how much we love him, and by making sure he’s not alone when he takes his final breaths,” she says.

She has tried to imagine what it will be like laboring with her son, hoping that he survives the delivery, cradling him in her arms. It always makes her cry. “I imagine memorizing every single part of his body, the way he smells, the noises he makes, and declaring him ‘beautiful’ and ‘perfect’ in spite of any physical defects Trisomy 13 has caused.”

‘The long pause’
The Tomaschkos gave birth to their first child, Kate, almost two years ago. Lauren is radiant in her second pregnancy with a sleek baby bump that doesn’t quite measure up to her first. Jonathan will be smaller than their robust little girl.

When Lauren became pregnant last spring, they hoped for a boy to complete their family. At 17 weeks, Lauren and Greg went in for a routine ultrasound to determine the gender. Their baby was a boy, their obstetrician told them. But she saw something “kind of abnormal” during that ultrasound.

The Tomaschkos remember “the long pause” while the doctor looked at the black and white image. It was quiet in the room. They waited. “You could tell she was looking him over,” Greg says.

Two days later, they were sitting in the office of a high-risk specialist in Pensacola. Almost immediately, a high-level ultrasound picked up one serious problem after another. “We were holding each other’s hands. We were both crying,” Lauren recalls. “We knew we were dealing with something that could change our lives.”

They chose to have an amniocentesis that day, although they were concerned about the slight risk of miscarriage associated with the test. But there were so many apparent problems that doctors stressed that more information was needed. Within days, they had the official diagnosis: Trisomy 13.

The Tomaschkos made it clear that ending the pregnancy was not an option. Initially, they hoped Lauren would have a miscarriage. Almost immediately they changed their minds. This was God’s plan for them, for Jonathan. “We just knew deep inside that no matter what, he was our son,” Lauren says. “And we were going to continue the pregnancy. “We had to really believe that this was part of God’s plan for us,” she adds. “That God didn’t make any mistakes when he created our son.”

Finding words
Within days of learning that their baby would die, Lauren and Greg started blogging online at jonathansbabyjournal.blogspot.com.

In it, Lauren — writing for both of them — chronicles how Jonathan’s condition has both tested and strengthened their faith. Lauren writes about feeling him move inside of her and cupping his tiny body in her hand. About savoring every movement. “This day may be all that he has for now,” she wrote July 7. “No matter how bad of shape he is in, I still have to take care of him the best I can and love him like he was perfect. He has no other mommy but me.”

She writes about shopping at a baby store for the clothes to bury him in while other pregnant moms dreamily wandered the aisles, anticipating the arrival of healthy babies.

Lauren blogs about choosing his casket and buying a gravesite, about sitting in a cold room and trying to imagine holding her baby for the last time before handing him over. “I did feel a little guilty about planning a funeral for a baby who is very much alive,” she writes. “I know it must be done but it was like he was reminding me the whole time, ‘But Mommy, I’m still right her with you.’ I wish I could tell him that everything we’re doing is because we love him.”

And she writes about how they are grateful for that routine ultrasound that allowed them to learn early in her pregnancy about Jonathan’s condition. “We have been blessed with over three months now to do everything we can to prepare ourselves as best as we can emotionally and spiritually,” Lauren wrote Sept. 21.

Their blog is one way that they feel they are giving meaning to their son’s life. His life might be short, but he matters. Instead of a baby shower, friends threw them a celebration of Jonathan’s life. More than $1,300 in cash and countless gifts were shipped to orphanages in Africa and to the Children’s Advocacy Center in Jonathan’s name. “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,” Lauren wrote in her blog.

Difficult choices
Jonathan, whose name means “Gift from God,” is due in November on the same date their daughter was due two years ago. It is almost certain he will not make it that long. Only about 20 percent of Trisomy 13 babies are full-term. Many don’t survive the first trimester.

The Tomaschkos are hoping that Jonathan will be allowed to choose his time to be born, but inducing labor early may be necessary. At 30 weeks, his condition is worsening. Doctors have said his kidneys are not functioning well and Lauren’s amniotic fluid is low. Her blood pressure is also becoming a concern. But his parents are not ready to say goodbye. Nor do they want to make the decision to induce him until they have to. When he’s born, he will die. “I don’t feel prepared to lose him yet,” Lauren says. “I want to enjoy more time with him.”

They cannot save their little boy. They can only celebrate his brief life and pray for the strength to deal with losing him. “I want him to be remembered as a blessing to us, to other people,” his mom says. Greg starts to talk and then chokes up. Long moments later, he regains his composure. “I want him to be remembered as our son,” he says. “And that he was ‘fearfully and wonderfully made’ and that he wasn’t a mistake. His life does have purpose.”

maternity photos

recently, we were very blessed to have been offered photo sessions by two very talented photographers! deb haussermann did our family-style maternity photos with the three (four) of us and lindsey newcomer, who i know from church, did some maternity photos of just myself. it means so much to our family to have these photos capturing a very special time in our lives. we are so grateful to these two generous ladies. please check them out if you need any sort of photography services!

i've made a short slideshow of some of the photos. we have decided not to show kate in any of the family photos, just for privacy reasons. all photos with the black background are by deb and all the photos with the white background are by lindsey.

enjoy!

Photo and video editing at www.OneTrueMedia.com

journey of faith, part two

yesterday, i had a not-so-great day and i was in need of a major attitude adjustment.

i hesitated to post this particular blog because i was afraid of what you all might think of me; my strength, faith, or a perceived lack thereof. but to not address the struggles in our journey, as if they are not happening, is not keeping with the authenticity of this blog. thankfully, a couple different times yesterday i was reminded that i am only human and that it's perfectly normal to feel this way. God can handle it.

i'll start at the beginning.

i have not been physically feeling that great this past week. i have been experiencing lightheadedness, weakness, and sometimes shortness of breath from doing a simple chore. i just knew it had something to do with my blood pressure.

i've also been doing too much googling and learning about all these bad things that could happen to jonathan and me in the next few weeks due to the low amniotic fluid. my doctors had warned me against googling.

i had a doctor's appointment yesterday morning and i found out that my blood pressure was a little high. i haven't had any other related problems (headache, swelling, etc.) so it's not too concerning yet, but it was alarming to me at the time nonetheless. about five minutes later, i'm listening to jonathan's heartbeat with my doctor, and it was awful. it was slow and lacked any kind of rhythm. my own heart immediately sank. i am so afraid of losing jonathan too soon.

oh, yeah. did i mention that my son will probably die at anytime in the next few weeks?

as you already know, from the beginning of our journey we have wanted jonathan to be born alive. we want to meet this little miracle of ours. since his condition is fatal, whether in utero or after birth, then we prefer to be holding and comforting him when it happens. it is our chance to "be parents" to him and to show him how much we love him. even just a few short minutes with him would be a gift that we would treasure for a lifetime.

however, recently i have begun to see just how much it really means to me that jonathan be born alive: i am desperate for it.

because it is so important to me, any obstacle that comes about, such as complications with my health or an awful-sounding heartbeat, really discourages me. i'm not in control over what happens and i don't like it. in fact, so many little things have to line up in place for me to perceive jonathan's birth going smoothly, that i feel like to believe that all these things could actually happen is possibly setting God up to "fail." and not just to fail me, but to fail everyone who is praying for this right along with me. and that people who doubted our decision or doubted what God can do from the beginning would be able to say, "i knew it wouldn't work out." the ironic part of this is that i am worried about what the cynics think when i myself am doubting what God is capable of in this situation.

however, if we lose jonathan in utero or during birth, i know eventually i would come to believe in my heart that it all worked out the way that it should have, in spite of the profound disappointment i'm sure to feel. really, i would. but i wonder if i would still feel disappointment that the cynics did not see the same miracle in all of this that we see.

so there it is. i'm just being honest. there is a battle taking place inside of my heart over my complete trust and submission to God's will in this situation. i'm not proud of it and i wish i could be strong all the time, but i know God can change my broken and weakened heart.

i also know God has a heart for the weak and lame. there are countless stories of Jesus healing people just like me in the new testament. of course, i would rather not be included in that demographic; i like to consider myself "whole" ~ but going through such a trial is extremely humbling. God knows that i need to be reminded that in my weakness, He is made strong. perhaps even in this struggle, He may be glorified.

[Jesus] replied, "You of little faith, why are you so afraid?" Then he got up and rebuked the winds and the waves, and it was completely calm. ~Matthew 8:26

He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." ~ Matthew 17:20

*****
later that evening, i spent some time going through some emails that i have received over the past couple of days from three other T13 moms who have already walked this road. each story was totally different but i was completely encouraged by each one. i noticed a similar theme in the three though....they all trusted God's plan and were all so thankful how their stories turned out. i thought about how God is writing my story and already knows the "ending." (or is it just the beginning?) i know that even now the Lord has appointed a time to take him home, and that it will happen as it should, even if it's not what i'm expecting.

i needed to read those messages yesterday, especially from other moms who have been where i am, and who can truly relate to the faith struggle i am having.

"Now faith is being sure of what we hope for and certain of what we do not see." ~ Hebrews 11:1

i read Hebrews 11 to be reminded of all the greatest stories of faith found in the bible. i was also reminded (again) just how much bigger our God is than what i give him credit for. i realized i needed to get back to the basics. what do i really believe in this situation?

by faith, i believe that God's purpose and plan for jonathan is much greater than i can comprehend.

by faith, i believe that God's plan is not to harm us but to give us hope and a future.

by faith, i believe that jonathan's time with us has long been ordained by God Himself.

by faith, i believe that all things will work for our good because we love Him.

by faith, i believe that God cares about the tiniest details relating to jonathan's birth and even death.

by faith, i believe that God is using jonathan's story to glorify Himself, someway, somehow, even if i will never see the fruit of this.

by faith, i believe that God will provide all the strength and grace we will need for every weak moment. (He already has for me even now as i write this.)

by faith, i believe that God will allow us to experience great joy even in the midst of sorrow.

by faith, i believe that God will provide us with much peace because we truly desire to honor Him with jonathan's life.

*****

"Then Jesus answered, 'Woman, you have great faith! Your request is granted.' And her daughter was healed from that very hour." ~ Matthew 15:28

quilt for jonathan

a longtime friend of our family recently contacted a talented quilter in NYC to make/refurbish this wonderful quilt and donate it in jonathan's honor! i know it will find a wonderful home at the children's advocacy center of niceville and will hopefully bring comfort to a child in need.


don't you love it?

theme of the week, take three

perspective

recently i was saddened to learn that another family listed on the "living with trisomy 13" website's prenatal page had lost their precious baby girl a few days ago. just a couple of months earlier, we were one of five families listed on the page. now, we are the only family on there. it is a lonely place to be. the picture there of the three of us smiling happily belies the sorrowful journey we are now walking a few months after that picture was taken. being the only family on there really puts things into perspective for us. it is now our turn.

*****

i finally called the birth center's social worker last week to make arrangements to meet with her in the next few days. i wasn't sure what to expect, probably because i don't really know what a social worker does, but i am glad i talked with her because i felt more comfortable with how it will all go down on d-day (delivery day.) she asked me a lot of questions about myself and our situation, probably to establish a bit of a relationship before we meet. during our conversation, i felt the need to let her know that greg and i had very strong faith in the Lord and that in spite of the sad situation we were in the midst of, "we do have perspective..." my voice trailed off at that point. i knew what i was trying to say, but i just didn't have the right words to complete the sentence. thankfully, she knew exactly what i meant.

*****

my mother and i have been talking about perspective over the past few days. it started when we were having the conversation about the unknown that lay ahead of us when jonathan is born. we have been blessed with over three months now to do everything we can to prepare ourselves as best we can emotionally and spiritually. but we won't know what is going to happen until we are actually walking through it. what we do know, however, is that the condition of jonathan's heart and kidneys means that we should expect the worst but hope and pray for the best. i don't think there is anyway greg and i can truly prepare ourselves for this experience. but i can absolutely say for sure that God has carried us thus far...why would He not carry us through the days that follow jonathan's death?

"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." ~Deuteronomy 31:6

"When you pass through the waters, I will be with you. When you pass through the rivers, they will not flow over you. When you walk through the fire, you will not be burned. The fire will not destroy you." ~Isaiah 43:2

my mother found this fitting quote and scripture in a daily devotional and read it to me:

"It seems there are two kinds of people in this world: those who have an eternal perspective and those who are preoccupied with the present. One is absorbed with the permanent; the other with the passing. One stores up treasure in heaven; the other accumulates it here on earth. It is all a matter of perspective."

"I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." ~Romans 8:18

i would like to think of both greg and myself as having this eternal perspective about our journey with jonathan. even if we only have hours or minutes to spend with jonathan here in this present time, we both know that we will see him again one day in heaven. our time spent here on earth without him is only but a dot on the timeline of eternity in which we will get to spend with him. this thought brings us much comfort.

however, there is a big difference between optimism and steadfast belief. i pray that i am not speaking just out of optimism. i realize that what we may experience when jonathan passes away has the potential to shake us to our very core. i'm sure i will think about perspective when this happens. there is that moment i dread when i know i will be personally handing my baby boy over to the funeral home representative and then realize that it will be the last time i ever see him, hold him, smell him, kiss him...and i'm sure i will weigh the eternal perspective against the present moment before God reassures me i am able to let him go. this moment may be our weakest throughout this whole journey. please pray for our strength.

may it be said of us:

"I have fought the good fight, I have finished the race, I have kept the faith." ~2 Timothy 4:7

"Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." ~ Philippians 1:6

"However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me—the task of testifying to the gospel of God's grace." ~Acts 20:24

29 week update

we had jonathan's 29 week appointment today with my OB. we will start seeing her every week now, just to make sure everything is going well with my health and to start focusing on delivery.

delivery. i can't believe it's already time to think about it.

everything went well today at the appointment. jonathan's heart sounded good and we were able to get a recording of it! he's been pretty active lately so i've been praying he's on the move to get into the head-down position. we talked with our OB about having a breech delivery and since i've already given birth before, she indicated it wouldn't be as big of a problem as it would if i was a first-time mom. there is still time for jonathan to turn, but in this case where there are developmental problems with the baby, it is very common for them to be in the breech position at birth. at this point, it sounds like it would pretty much be a miracle for him to turn around.

i have been feeling pretty good except for the occasional cramping here or there. i still have not had any swelling and i still haven't gained much weight (just one more pound in the last two weeks.) i guess one good thing about having too little amniotic fluid is that i can really feel jonathan's movements, both inside my belly and from the outside with my hand. i can tell exactly where his head is at all times and i can usually feel his arms, hands, and body when he's moving around. he also gets the hiccups quite frequently now, and my entire belly shakes along with them. this is one thing i found quite annoying when i was pregnant with kate, where now i desperately soak up every movement jonathan makes.

we are starting to make preparations for our time at the hospital now. yesterday i spent the morning packing a suitcase, washing jonathan's blankets and getting his little outfits ready. i have all sorts of things packed to create memories like plaster, paint, etc. thanks to string of pearls. next week i will be meeting with the birth center's social worker, who will be a liaison between us and the nurses, and from what i understand, will help us with whatever we need while we're there.

we talked briefly at our appointment today about setting an induction date around 37 weeks, if we make it that long. this would be around the first week of november. i really need to start praying more about this and i would love for you to pray about this for us too.

an induction would be ideal because then everything would be in place for us: our own doctor, well-prepared nurses and staff, a room ready for us. we live an hour from the hospital, so going into labor at home might cause some serious issues for us. (just imagine what we might have to explain to a police officer or EMT.)

however, i still struggle with the thought of setting a date because i really want this to happen on God's timing. i don't want to think for a single moment, "what if...?" or struggle with feelings of guilt or regret. thankfully, we know that God already knows how this is going to turn out. my prayer is that we can look back afterwards and know that it happened the way it was supposed to. that even the perceived "glitches" in our plan would turn out to be blessings.

i do realize also, after talking with several experienced doctors, that a lot of times, these things just work themselves out to where an induction is actually better for the health of the baby and/or mother. this is what i am hoping for. i try not to worry too much about these details because 1) i have no control over them and 2) if i have learned anything during this journey, it should be that the Lord will go before us. can you tell i'm trying to convince myself of this??

just for fun...29 weeks with kate and then 29 weeks with jonathan. there is quite a bit of difference in belly size (may be hard to tell in jonathan's picture.) jonathan's due date is exactly what kate's due date was two years ago (november 30.)

a huge "thank-you"

the picture i will treasure forever...

this picture was sent to me yesterday all the way from kenya depicting the children from heart of the bride's house of hope giving baby jonathan and YOU a huge "thank you" for your generous gifts and financial contributions for jonathan's celebration of life! money was also designated in jonathan's honor for the HOB's boys' ranch in zambia.

greg and i are still incredibly honored and humbled when we think about jonathan's celebration of life that took place a couple of weeks ago. it truly is a night we will cherish for the rest of our lives! whether you came and donated to one of the charities, or if you came just to support us, or whether you couldn't make it and were there in spirit and in prayer, we just want to say again, "thank you!" but those words just can't sufficiently express our deep gratitude to you.

the two huge piles of gifts for the charities...

we don't have all the details of all the donations, and we are still learning who donated what (and many of those contributions were anonymous.) but what we do know is that more than $1300 was donated in cash alone, and there was at least double that much donated in baby goods for both the children's advocacy center and heart of the bride ministries. all in honor of our precious son, jonathan. as parents, this blesses the deepest parts of our hearts, where more than anything we just want our son's life to matter. we want him to be remembered. we want his life to honor the Lord...

we desire to send out a more personal thank-you to each of you once we get all of the information. however, in light of the timing of jonathan's birth, which could be any day now, we hope that you will accept our sincerest appreciation this way for now.

thank you for loving us. thank you for loving jonathan. if the love and support you've expressed to our family could heal, jonathan would be whole right now. we certainly are stronger because of it.

with love and blessings to you,

lauren and greg

the threshing floor

as you know from previous blog posts, i believe that God sometimes "speaks" to me with "themes", which are generally ideas or verses that come to my attention over and over in unrelated ways. God knows He must be repetitive with these lessons, because i surely wouldn't get it on the first time around.

this time, i believe there is something for me to be learned from the "threshing floor." i have come across this concept many times while reading the old testament and other books and blogs. so i have spent the past couple of weeks learning what it means for me.

an ancient threshing floor was simply the surface upon which a farmer would thresh and winnow the grain harvest. it was usually in a place that was exposed to the wind, like the side of a mountain, for example. the threshing, or beating and trampling of the grain by hand or livestock, would cause it to become loosened from the surrounding chaff, which is inedible. then the farmer would winnow the wheat by throwing the beatened grain into the air to allow the chaff to seperate from the grain completely. the lightweight chaff would blow away in the wind while the heavier seeds would fall back to the earth to be gathered.

it's a simple place where a seemingly violent process occurs. but it's a necessary process in order for the wheat to be worth something, in this case, that the grain would be edible for the farmer's family or village.

you see, the grain must die for it to have life.

"Jesus replied, 'The hour has come for the Son of Man to be glorified. I tell you the truth, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds.'" ~John 12:23-24

there are so many examples around us, especially in nature, that the dying process is what allows for new life. even now, as we are entering the autumn season, the leaves will soon be falling and the grass and flowers will shrivel and die. but it is necessary in order for spring to bring forth new life. i think this is a beautiful example of Jesus' life. He died so that we may have life.

"Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!" ~2 Corinthians 5:17

i am so hopeful to see that this concept, albeit on a much smaller scale, is what God is doing in jonathan's life. yes, jonathan can still be healed. we pray for that. i would do just about anything if it would mean that jonathan would be born healthy and "normal." but i truly believe that God is showing me that jonathan's life might mean so much more in his death. knowing how many people jonathan's life is touching even now, i can't believe anything other than this would be true.

and i believe the process of threshing has been chosen for me. i don't attempt to understand fully what all this means for me. but perhaps this trial is the very tool God is using as i am being "threshed" and "winnowed"...where the worthless chaff in my life is removed completely and only the good remains. and while it is so very painful, He reminds me daily that He is the one leading me through it, and creating in me a stronger faith and character than what i had before it started. in the end, my "harvest" will be a blessing.

God uses threshing floors as places of significant events all throughout the old testament. the scripture that really speaks to me in my situation is 1 chronicles 21 where God tells king david to build an altar to the Lord on the threshing floor of araunah on mount moriah.

when david offered to buy the property from araunah, araunah told david he could have the property for nothing and that araunah would also supply the offering for the sacrifice upon the altar. "But King David replied to Araunah, 'No, I insist on paying the full price. I will not take for the LORD what is yours, or sacrifice a burnt offering that costs me nothing.'" ~ 1 Chr 21:24

david understood that he could take the easy path or he could take the righteous path, and he chose to do what was right. an offering is not an offering unless it costs something. i pray with all my heart that one day i will stand before the Lord and He will tell me that by keeping jonathan, we did the righteous thing and not the "easy" thing. that because we allowed Him to use jonathan's life in His own way and His own timing, that the good that has and is still to come from it will glorify Him so much more.
"So David paid Araunah six hundred shekels of gold for the site. David built an altar to the LORD there..." 1 Chr 21:25-26
the humble threshing floor became a place of worship to the Holy God.
and, it keeps getting better: [years later] "Then Solomon began to build the temple of the LORD in Jerusalem on Mount Moriah, where the LORD had appeared to his father David. It was on the threshing floor of Araunah the Jebusite, the place provided by David. " ~ 2 Chr 3:1
the beautiful temple, also known as the Most Holy Place, was eventually built on the very spot of that humble threshing floor. God had taken the altar of sacrifice and made it magnificent, the very place where He dwells.
i pray that this is my story: that i would build an altar to the Lord on this ground where i am being threshed; that i can still praise Him and worship Him, no matter the pain of what's been and what's to come in our journey. and that He will show me the beauty and blessings that can be harvested from such pain.

lessons from my children

"From the lips of children and infants you have ordained praise" ~ Psalm 8:2

kate and i were sitting down to lunch yesterday: tilapia, green peas, and "pot-pies" (french fries in kate-speak.) and as i'm getting ready to take my first bite, i could tell she was quietly watching me. i look over at her and she says, "amen, mommy!" she was reminding me that it was time to pray. we both clasped our hands together, bowed our heads, and i offered a simple prayer for our lunch. at the end, right after i say, "...in Jesus' name..." she always says, "a-MEN!" with a huge smile. sometimes we pray two or three times because she enjoys it so much.

wow, the lessons to be learned from a 21-month-old.

that day, i really felt convicted in my heart about praying. here i am, with a major ordeal going on in my life that i am totally consumed with...but i have forgotten about the little things that need to be prayed about too.

raising a toddler and being pregnant with jonathan at the same time has really magnified my need to "get back to the basics." both of my children have taught me so much more about God's love for us. i mean, think about it...we love our children with all our hearts and would do just about anything for them...isn't this how God must feel about us, except even more?

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." ~John 3:16

"This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins." ~1 John 4:9-10

of course, like any parent, God wants us to be happy and to prosper. there are so many verses about this. (check out Job, Psalms, and Proverbs.) but His great love for us also means that we must walk through tough times in order for us to be refined, and that He must enact consequences for us when we are purposefully disobeying Him. we as parents can relate to these "basics" on a much lesser scale.

"Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." ~ James 1:12

"...because the LORD disciplines those he loves, as a father the son he delights in." ~Proverbs 3:12

the lesson kate taught me yesterday about praying is so significant, the more i think about it. not only does she remember to pray when i don't, but she does it with such excitement and cheerfulness. she wants to do it over and over again. i believe that this is what God desires from us: to be cheerful pray-ers and to continually abide in communion with Him, even over the "little things." just because my prayers lately tend to revolve around the life and impending death of my son doesn't mean i should take for granted my many basic blessings such as food and shelter. i also desire to pray more out of delight and thankfulness than of duty.

"Delight yourself in the LORD and he will give you the desires of your heart." ~Psalm 37:4

"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

heeere's jonathan!

we are always so incredibly blessed by our specialist and his staff at the sacred heart-pensacola perinatal medicine office everytime we go. they are so wonderful to us and we are very thankful that they are part of our journey with jonathan. at our visit this past week, they especially blessed us by allowing us to have these short video clips of jonathan via ultrasound. in a situation like ours, these memories are priceless.

i uploaded 5 short clips to make one video montage. if you watch closely, this is what you can see:

clip #1: jonathan's profile, (top of head is pointing left) showing his mouth moving, his heart beating (far right on screen.) his hand is near his chin.

clip #2: up close video of his heart beating. looks pretty good at 146 BPM. only a couple of stutters.

clip #3: full view of his face, turned toward the screen. you can see his eyes, nose, mouth, teeth buds, etc. the view moves in and out of focus.

clip #4: profile view. note his fingers waving at the screen (his hand is up near his eye and the other is by his chin.)

clip #5: full face again, with heart beating. if you look closely at his face, you can see his left eye moving around.

Make video montages at www.OneTrueMedia.com

28.5 week update

as you can imagine, the experience of getting my amniocentesis a couple of months ago was not pleasant. i had just had the detailed ultrasound in which we learned something was very, very wrong. i was crying and shaking on the ultrasound table. i had just had a super long, thick needle jabbed several inches down into my belly. we were trying to absorb the thought that our baby probably had a fatal condition. and the really nice, cheerful nurse is bottling up all the fluid coming out of the needle. "baby pee!" she says, waving the bottles of amniotic fluid in my face with a grin, "and it just gets worse as they get older!"

ah, baby pee. i remember staring at the vials of fluid but the idea of "baby pee" did not fully sink in until yesterday, really.

we did not receive the best news at yesterday's appointment with our specialist.

it appears that jonathan's kidneys are not doing so well. they are extremely dilated and echogenic. he is not producing urine as he should, therefore, i do not have enough amniotic fluid. our specialist indicated to us that this condition is more serious than jonathan's heart condition now and would probably have a direct effect on his lifespan after birth.

it was hard for us to really see much during the ultrasound because there was not a lot of fluid between my skin and the baby. so while we did get some video and photos of jonathan, they are not very clear. also, when the tech was scanning the baby's head, i felt pretty significant pain because of the hardness of his skull pressed up against my belly. his head is right below my ribs.

and that's another thing we learned: jonathan is breech again. i do not know how he got there because you would think i would feel such a significant event as a baby turning right-side up inside of my belly. this must have occurred at night while i was sleeping. however, it does explain the sharp, shooting pains and "bearing down" feeling i have experienced in the past couple of weeks. apparently, he is trying to stand up or something! he is also enjoying playing soccer with my bladder.

we were also told that the placenta looks abnormal now. this, along with jonathan's trisomy 13 potentially causing a hormonal imbalance, along with too little amniotic fluid, means that i am at high risk for pre-term labor and pre-eclampsia.

in other news about jonathan, we learned he weighs exactly two pounds. this is the 28th percentile. they don't start to worry about his growth until he's around the 10th percentile. i have not gained any weight this week and my blood pressure is still good. i haven't yet experienced any swelling either which is great news considering my risk.

our prayer requests:
~ that jonathan would be born alive, if even for a few minutes, no matter if he's born next week or next month.
~ that jonathan would turn himself into the head-down position. if he doesn't, it looks like i will be delivering a breech baby. my doctor will not do a c-section on me (this is best for my health and for any future pregnancy. this is what we desire, anyway.)
~ that my health will not be adversly affected in spite of these new pregnancy complications.
~ that if i do go into labor early, my own doctor will be available for delivery.
~ that greg and i will be fully prepared, emotionally, physically, and spiritually for what's to come in the next few weeks.

i don't think i was fully prepared for this news. i guess i imagined that we would learn everything was still the same with his heart and that he was doing OK. i also assumed that it would be the last time we would be going to the specialist. we now have a follow-up appointment on october 7th to see where we stand with everything, if we make it that long.

at the same time, i can't say we're completely caught off-guard. we knew that trisomy 13 would cause many complications such as these. i guess i'm just struggling with the idea that this is actually happening. we've been blessed to have gone as long as we have with no real change in our situation and to be able to experience joy at times, even. but now i suppose we are on our way back into the "valley." we know that the Lord is with us, but we still covet your prayers.

i will post the pictures and video clips next time.

choosing thomas

please take a moment to watch this family's trisomy 13 story, as reported by the dallas morning news just this past week. i can't help but wonder if our story will be like this. even some of the things this mother says about their experience and beliefs are similar to things i have expressed here on our blog. it's just another way of knowing that we are not alone on this journey.

theme of the week, take two

"To whom much is given, much is expected." - Luke 12:48.

another "theme of the week" has been revealed to me in the most interesting ways. this time, it was basically the above verse, over and over again: i read it somewhere, then it was quoted by someone else, and then my doctor and i had a brief conversation about it at our last visit. all unrelated events over just a couple of days.

i had to research the context of the scripture before i could begin to apply it to myself or our situation. the best description i found was: the more knowledge a man has, the more practice is expected from him; and the greater his gifts are, the more useful he ought to be, and diligent in the improvement of them.

interestingly enough, jonathan's name means "gift from God." and what a gift he is proving to be. as i am reminded often, for some reason God is entrusting us with this special gift. i have believed this from the beginning, but to hear others affirm it is heartening. in fact, all throughout this journey, the concept of being given "a gift" has come up again and again. this gift just has different wrapping than one would expect.

"Every good and perfect gift is from above..." ~James 1:17

however, we realize that our gift is not ours to keep. perhaps the memories of our time with jonathan, during pregnancy and for however long he lives, are for ours to keep. but we must offer our gift back to God, trusting that His plan is better and greater that we could ever imagine.

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

at this very moment, i want to believe i can do it: offer back the life of our son with unclenched hands. in fact, this is what i desire to do, as hannah faithfully dedicated her longed-awaited and prayed-for son, samuel, to the Lord in 1 Samuel 1. an offering is not a true offering unless it costs something. again: "To whom much is given, much is expected."

the cost of this offering will be great. even though i have not yet met jonathan... i have not yet smelled that sweet baby skin, i have not kissed those tiny feet, i have not yet looked him over and declared him "beautiful" or "perfect" in spite of whatever flaws trisomy 13 has caused during his development.... i know the moment i meet him will be accompanied by the deepest love and instinct of every mother: to feel like i cannot possibly live without him. how am i going to live without him? only by God's grace.

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

27 weeks

we are celebrating 27 weeks with jonathan this week. it's a significant milemarker in this journey because it's been 10 weeks since we've found out about his condition and we've probably got 10 weeks at the most left in the pregnancy. sadly, the past 10 weeks have flown by so we realize we don't have much time left to spend with him. of course, we have no way of knowing what will happen after delivery. we may have only minutes or hours with him, or we may have several days. i am truly at peace with whatever happens at that point. again, our prayer is just that he is born alive so that we can meet each other. we are assured by our doctor that he can even be born alive at this point in our pregnancy, if he decides to come earlier than expected.

jonathan is getting really big now, and is still moving around pretty good most of the time. and like i have mentioned before, he really loves his sweets. usually it's chocolate of some sort. yesterday, he wanted a starbucks grande mocha frappacino (decaf of course!) and so i certainly obliged him. i'm surprised i haven't gained all that much weight yet. hopefully it doesn't sneak up on me. but at this point, what baby wants, baby gets.

so we had another doctor's appointment yesterday. i was a little concerned all morning because i hadn't felt jonathan move all that much for several hours. but when we listened to his heartbeat at the appointment, it sounded great- normal, even. my belly is also measuring on track for where i am in my pregnancy. i have gained another pound, which puts me at 14 total. we didn't get an ultrasound this time, but in less than a week we will be traveling back to pensacola for our last appointment with our specialist. we'll get another very detailed ultrasound then. because i will be so far along in my pregnancy, we will be able to get an excellent look at jonathan's heart and perhaps a prognosis as to what we can expect in the next couple of months. we also hope to get lots more pictures and maybe even a sound clip of his heartbeat.

one interesting note about my doctor's visit yesterday: i learned that my triple-screen blood test results came back completely normal. another reason not to trust these tests, or even take them at all in my opinion.

and finally, on a somewhat sad note, this week is our genetic counselor's last week working at our specialist's office, as she is moving on to another job. she has been absolutely wonderful to us, and a friend from the beginning of our ordeal. we know that God placed her in our lives specifically to help us during this time, as he has done with many, many other people. we will miss her.

refreshed

I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth. ~Psalm 121:1-2

wow. what a difference a couple of weeks makes! i knew there would be hills and valleys in our journey, but i am amazed how God has promptly taken us out of the valley and back up the hill again in such a short time. where in the valley of facing difficult decisions two weeks ago, there was oppression and low visibility, like walls closing in on us, this week’s hill is very much a breath of fresh air; the place where i remember what it’s like to be able to see for miles and miles. it’s a glimpse of the bigger picture again. the view reminds me that i am just one small speck in a very magnificent landscape. (or perhaps, one thread in a beautiful tapestry!) again, God is so much bigger and better than i give Him credit for. i am humbled by the fact that He is so magnificent but that He still cares for little ol’ me. "Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows." ~Matthew 10:29-31

even though reaching this hill in our journey doesn’t change our circumstances, it does refresh us with new strength, new grace, and the confidence to make it perhaps one more day, one more week, one more month.

thank you, again, for your blog comments, your emails, your cards, your prayers. they mean so much to us. i am very aware that i am not the only one traveling a rocky road, yet you still take the time to remember us and encourage us. i realize that you may be facing a circumstance that mirrors my own, or perhaps is much more serious. or maybe you are facing day-to-day struggles that leave you weary. wherever you may be in life, whatever sorrow may be yours right now, whether you are standing in a valley or on a hill…please know that God is with you and He loves you wholly and completely. every hair on your head matters. greg and i have never been more sure of this truth.

i do understand it is difficult to grasp this truth when you are in the midst of a trial. i rest in the great assurance that jonathan will never struggle with this. he will never know anything other than the love of his parents and love of his Creator. he will never question his significance in life, because in heaven he will know the very depth of the impact his little life made during his time on earth, whether he takes a breath or not. i think that several months from now, when i am longing to hold my sweet baby in my arms, this thought will give me peace.