Josiah's heart

"In light of eternity, our journey really is short. Yet we have the opportunity now to learn and enjoy different things that we may never get a chance to do at any other time in our lives. Embrace this time. Weep. Grieve. Laugh. But view it as a time like no other, for we shall not pass this way again."

- Karen Glanz, "A Story of God's Faithfulness" from the Trisomy 18 foundations site

Before I go any further,  I need to thank Emily for the incredible pictures that are on today's post!  Derek does work for her husband and he was working on one of his job's when we had our ultrasound and found out what we were going to be facing on this journey.  Emily is a photographer and offered to take family pictures of us.  What a blessing!  This is just a little sampling of the amazing pictures that she took for us to capture Josiah, our family and this pregnancy.  

There are so many more of you that have blessed us immensely...your prayers, your friendships, gifts of time, of money, of notes, of cleaning our house,  of plans to be there when Josiah arrives, and so much more.  I can't say THANK YOU enough.  It's been amazing as we walk through this valley to know that we are not alone.  Thank you for asking questions and talking to me about Josiah.  Thank you for always letting us know you are thinking of us.  We are richly blessed.

I have found myself searching online for things like...  "trisomy 18 live birth"  and "boys born with Trisomy 18".  I am looking for the stories that keep this little seed of hope alive.  I just keep thinking, "what if"?  Is it possible that we might be able to meet Josiah, if even for a little bit.  It's a fine line sometimes between daring to let yourself hope and trying to remain resolutely realistic.  In general, I tend to be a realist.  I am not really prone to letting my mind wander, getting my hopes up and trying to "focus on the positives" so to speak.  I would much rather be pleasantly suprised instead of devastatingly disappointed.  So all this is kind of new for me....and strange.  I find it kind of crazy that I am letting myself consider the possibilties.  That is not something I would have predicted a couple of months ago.  Even at the beginning of this pregnancy I had a hard time accepting that it was really happening,  It took me a week to even tell my husband the good news!  So, in my searching the other night I came across two such stories which I just can't stop thinking about.  In one blog, the baby, a boy, lived for 70 minutes.  In the other, a little girl lived 8 weeks.  But those weren't the things that the Lord used to get my attention.  It was some of what each of those mom's said about their experience with their children, the Trisomy diagnosis,  and most impactful for me, the way they have since reacted to what God has ordained.  

The quote above is from one of those stories.  This mom's baby girl, Staci, lived for 8 weeks.  The link to her story is below if you would like to read it for yourself. 
- http://www.trisomy18.org/site/TR/Events/General?pxfid=1360&fr_id=1070&pg=fund

 She said quite a few things which I found very encouraging.  Things that I hope our family can mirror as we travel this road with Josiah.   It is things like the following which I am trying to focus on:  God does not make mistakes and is in control of everything that is happening.
She says on her post,  "Our faith became the centre of our entire journey. We came to the realization that this whole situation never was really about Staci, or us. It was about a loving God who makes no mistakes and is in control of all aspects of our lives. The T18 happened at conception. There was nothing we did or didn't do to prevent or cause what happened. Therefore, we believe God had bigger purposes for our whole picture. The lives that were touched through our journey with Staci still continue to amaze us. God was simply using us and Staci to bring about many wonderful changes, not only in our hearts but in the hearts of many others."

So that is my prayer today... that the Lord would be pleased to work in our hearts and the hearts of those who Josiah is touching to continue to grow us and prepare us for what He is doing.  To break hardened hearts where need be and to keep using Josiah's life to bring about His purposes.  

I know He is bringing about changes in my own thinking.  I was thinking about the ways that I view prayer.  In light of what the past 2 years have been like for us between losing Owen and then a heartbreaking diagnosis for what we thought was supposed to be our "rainbow baby"...the pregnancy we thought would be our ray of sunshine after the storm...my initial reaction to God's will was not pretty.  I really questioned what the point of all my prayers were.  Why did I spend so much time praying for another baby? Why did I spend time praying for a healthy safe baby when God clearly had his own agenda?  Why wasn't God listening to me?  Didn't He know that our hearts were already broken?  Didn't He remember Owen?  

That's where the second story comes in.  This mom wrote about her baby boy who lived for 70 minutes...but it was a quote at the end of her blog that got my attention.  She quoted 1 Samuel 1:27-28.  Now, the beginning part of that verse, I am very familiar with... "For this child I have prayed..." In fact, one night, early in this pregnancy I was sitting on the computer at some crazy hour of the night because I couldn't sleep.  I was probably looking things up online about some the bleeding issues I was having in my first trimester.  I apparently enjoy googling medical conditions late at night and convincing myself that I have every problem described online  :)  Ha ha!  

Anyways.... while I was searching online I came across a company that sold maternity shirts with the beginning of that verse on them  "For this child I have prayed...".  They were really cute and I thought it might be encouraging to be reminded as I wore that shirt that this baby WAS prayed for and that he or she was in the Lord's hands.  So I ordered one....  and I think I wore it one time before our ultrasound and T18 diagnosis.  I couldn't stand to look at that shirt after that and buried it in a pile.   A few days ago I was going thru the mess in our room trying to put stuff away and setting things aside to sell etc and I found that shirt.  I was very close to pitching it, but for some reason stuck in my pile of summer maternity clothes which will meet an as yet undetermined fate.    

I wasn't sure why I kept it at first, but now I think I know why.  There is more to that verse and I'm not sure I ever really latched on to what followed that first part until I read this blog.  Verse 27 continues "...and the Lord has granted me what I asked of him."  Then comes verse 28.  "So now I give him to the Lord.  For his whole life he will be given over to the Lord."    

I never noticed that before....and the Lord is using it to refine my thinking on prayer.  It's not praying for something I want and then being upset when that wasn't the Lord's plan.  I need to pray and ask God, while at the same time knowing that He is God.  He determines what will come to pass and He is sovereign over every moment, every triumph, every trial and every life.  I needed to be reminded of that.  Prayer is not some magic lamp with a genie who grants our wishes.  It is God who "plans our steps" as is said in Proverbs 16:9  "The heart of man plans his way, but the Lord establishes his steps." 

So, in light of that, we had our appointment yesterday with the fetal cardiologist.  We were scheduled to have an echocardiogram done on Josiah.  Derek and I both left that appointment feeling encouraged again.  The doctor said that he didn't note any change again in Josiah's heart function.  No deterioration, no leakage.  The defects are obviously still there, but his heart is still functioning well, considering.  I asked him if Josiah's heart defects were something that he saw babies surviving delivery very often with  and he said yes.  He said, you just never know.  He could still pass away in utero due to his heart or any number of problems and there is always the chance that he won't survive delivery.  And there is always the chance he will.  And then he said something amazing to us.  He said to call him when we go in for delivery and he would plan on being there to check on the baby after he is born.  I say that is amazing, because that is the first time I can remember hearing from someone in the medical field about making plans for "after".    It was great.  

So, outside of the Trisomy 18, which complicates things medically for Josiah when you factor in his non-functioning kidney and cysts in the brain, and not knowing how Josiah might be affected cognitively, I feel a little more hopeful.  When we were first told about the T18 I felt that we were being told over and over that Josiah wouldn't make it.  I understand that....you don't want to give someone false hope and you need to be honest with what the statistics shows.  But Josiah is not a statistic.  I don't know what the Lord has in store for us, but he has given us Josiah and he is HERE.  He is an active, kicking, wiggling, somersaulting bundle of energy.  And I can't help but be reminded that it is God alone who has determined his days.  

So pray with us for Josiah.  Pray that He will keep preparing us for what He has planned for us.  We are hopeful that we will get to spend some precious time with him before the Lord calls him home.  We just don't know what that means in terms of minutes, hours or days .  The Lord knows.  

 "For this child I have prayed and the Lord has granted me what I asked of him.  So now I give him to the Lord.  For his whole life he will be given over to the Lord." - 1 Samuel 1:27-28

Love,
Cat

Always "Kick" Me Goodnight....

For you formed my inward parts;

you knitted me together in my mother's womb.

I praise you, for I am fearfully and wonderfully made.

Wonderful are your works;

my soul knows it very well.

My frame was not hidden from you,

when I was being made in secret,

intricately woven in the depths of the earth.

Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

Psalm 139:13-16

Well, I apologize...I have been having a hard time updating this blog.  I know there are so many of you wondering what is happening with us & I just haven't been able to sit myself down and write for the past month or so....   

So...here goes.  I will try my best to be much better about keeping up with everyone.  We definitely need continued prayer and wisdom as we draw closer to Josiah's due date and whatever the Lord has in store for his life and our family.  

I just love the verse at the beginning of this post.  It reminds me that it is the Lord who knows Josiah's story.  He is sovereign over his life and ours.  I am 29 weeks right now.  Josiah's "official" due date is February 11.  He is an active active active little guy.  He reminds me SO much of my pregnancy with Addison.  He moves around so much more than I even remember Owen doing.  When I was pregnant with Owen, I remember comparing him to Addison as well , even thinking how much I was looking forward to having a "mellow" baby after her!  She was (and is!) a little stinker.   But, right now I am glad that Josiah is sharing some of these qualities with his big sister.  Addison has a big personality and I am thinking of Josiah in that way too.   I think he is a fighter and that's what he needs to be.  

Every year at our local craft show I get a family ornament made.  Last year, after we lost Owen I got one made but didn't realize that the lady who does them had a way of representing our loss.  So the pictures above show the one I had her make for ALL our kids for this year.  I love the way it turned out...it's just perfect.  Josiah is our little snowball.....

Over the past few weeks I have been letting myself hope.  I still have up and down days.  Some days I have a hard time shaking the sadness.  And some days I let myself actually start thinking......what if?  What if he makes it to term?  What if the Lord's plan is to let us spend some time with him?  What if we could actually bring him home if even for a short time?  His kicks and wiggles won't let me forget that he is alive and well with us right now.  And I have been reading ALOT on Trisomy 18.   I have received a couple of books (THANK YOU to each of you for thinking of us!),  I have been reading blogs and I have emailed a couple of other moms of babies living with Trisomy 18 ( Jill.......I really am going to get myself together and call you one of these days!  ) and I have overall been looking for HOPE.  And I am finding it.  And today I am feeling it.  Tommorrow might be a different story, but right now as I sit here typing this up, Josiah is kicking like crazy and I let myself think.......what if?  

So that has been my prayer lately....I pray that God might continue to give us the gift of time with Josiah and specifically that he might survive delivery even if just for a little bit.  I have already had to deliver one baby who was stillborn and would be so thankful to not have to endure that again.  I am not unrealistic.  I know that the statistics are not in our favor.  I know what the report from Akron Children's showed in regards to Josiah's heart and kidneys and brain.   I also know that God is the one who is writing Josiah's story and so I just need to leave it in His hands.  Right now He has called us to love him while we have him and to trust in Him.  So we keep praying for his little life and that the Lord will give us peace, comfort and wisdom as we walk thru this trial.  

The time we have been given with Josiah has been an unexpected blessing.  I have been really loving our little night-time routine.  He usually gets very active in the 8 to 10pm range and even if he has been snoozing right before I finally get to bed he ALWAYS "kicks" me goodnight.  Sometimes it might just be once or twice....sometimes he's still dancing as I fall asleep.  But,  he has done it every night since he started getting big enough to make his presence known!  Sometimes I find myself worried that I hadn't felt him for a little bit, and I just talk to him telling him to just give me a little kick so I know he's OK.  And he does.  It's hard not to smile when you feel that.  In the midst of all the what-if's there he is reminding me what IS.  He's an amazing little guy and I feel like I am getting a taste of his personality every day.  I am so thankful that God is giving us this time together.  I am so thankful that Daddy and the kids have all gotten to feel his kicks.  I am trying to spend these last several weeks focusing on what we have to share with him right now.  

Thank you so much to each of you for the different ways you have thought of us and cared for us over the past few months.  Thank you for your prayers.  Thank you for your emails, comments on this blog, messages and cards.  Thank you for remembering Owen.  Thank you for praying for Josiah.  Thank you for praying for the kids and for us. 

We have another fetal echocardiogram appointment next week so please be in prayer for that appointment.  At the last appointment the cardiologist said that there was no change and that his heart, in spite of it's defects, was still functioning fairly well and not showing any signs of deterioration, so we're hoping for a similar report at this next appointment.    

I'll be sure to update this blog after our appointment and let you know how we are doing...

Cat

Not Forgotten

Matthew 5:4  "Blessed are those who mourn, for they shall be comforted."

I am overwhelmed.... that is the best word I can think of right now.  Last week I was overwhelmed with panic and heartache and so much sadness I didn't think it was possible to stand under all of it.  The Lord truly heard our cries and through family, through friends, through our church family, through this little blog and through those who have found us through a site my friend put our story on ( aLittleBirdie.org: When Lightning Strikes Twice ) I have felt the prayers and hugs from SO MANY.  And now I am overwhelmed with daily reminders of the Lord's care for us.  I am so thankful for those of you who have messaged me, left comments for me,  and emailed me so faithfully.  I will write you back!  Thank you for those of you who made meals for us and have given us gift cards and sent cards of encouragement.  What else can we be right now but thankful?

Thank you so much to each of you who has prayed for us, prayed for Josiah, remembered Owen, cried alongside us and shared in our grief.  Thank you so much for sharing our story with your friends and your families and pleading for prayer on our behalf.  And thank you for reminding me that we are not alone.  There are other families who have experienced similar heartache and I am thankful for your willingness to share that with me.

I wanted to share some of what I've been experiencing over the past couple of weeks as well.  I have gone from fear, to panic, to despair and have been in such depths of sadness  that I feared I might never pull out of it.  I have felt in ways I never have before that Christ was far from me, or more likely that I was far from Christ.  I  needed reassurance that my life was not spinning out of control and that hopelessness was not the appropriate response, but despair seemed to be my constant companion.  I found myself even unable to find solace in God's Word.  Each verse I had committed to memory in the days after Owen passed away were  of no comfort.  I felt myself repeating God's promises and immediately breaking down in tears saying, "but I did that!  Where are you now? What are you doing to us? I did pray, I did trust and what did it gain us?"

I think one of the hardest things for me to wrap my mind and heart around in those first horrible blur of days has been the fact that one of the ways I found myself reconciling the loss of Owen was in thinking that God's plan was to give us Josiah.  If we hadn't lost Owen, we wouldn't have Josiah.  I was sure of it.  I just knew that that was God's plan.  Even with all the fear in the beginning of this pregnancy I felt He was just reminding me that I needed to trust in Him, but everything would be fine.  After all, who loses two babies?  Especially 2 late term losses?

And that brings me to Josiah.  In the midst of all my heartache I was forgetting about him.  At first I wanted to forget.  I didn't want to think of myself in terms of being pregnant.  I got rid of any of the pregnancy books I had in my house because it was too painful to read about "normal" pregnancies and the happy endings that awaited them.  I would take my prenatal vitamins each night and think "what's the point."  Gone was the stroller and infant carrier .....which, by the way, will now make 2 strollers and infant carriers that I have bought and gotten rid of because they were for babies I will never bring home and I can't stand to have the reminders here.
 It's ironic, about this last stroller too... as a side note....  I was determined in the beginning of this pregnancy to not replace the stroller I had purchased (at a garage sale of course!) for Owen and sold this past summer until we were literally in the hospital having this baby.  I had friends with infant carriers and wasn't worried about getting something to get us home from the hospital.  I told myself I didn't want to have to sell another stroller for the worst of reasons so I wasn't going to mess with it.  At some point over this past summer I found myself looking on craigslist and came across a super nice stroller for a great price and I took the dive and bought it.  I told myself how ridiculous and fatalistic I was being by not getting at least some things taken care of.  I had no intentions of setting up the pack n play or the crib, since I had a bassinet that could easily be brought over when we left the hospital, but surely a stroller and carrier were practical things to have ready to go...right? I can't even tell you how much it hurt to pull into the garage after our ultrasounds and the devastating news we received at them to see that stroller and carrier sitting in there.  I hadn't even taken it in the house yet.  I don't know what the future holds, but I just needed it gone.

But, the thing was, and the thing IS.... Josiah isn't gone. I have slowly, achingly and lovingly been reminded of that over the past couple of weeks as well.  The Lord has been patient with my lack of faith and He has been hearing my cries and pleadings and  my rantings and ravings and He has not left me without hope.  Slowly, ever so slowly, He has guided me back under His wings where I have found rest and solace so many times in the past year.  One of my favorite verses during my worst times missing Owen has been:

Psalm 57:1.  Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.  

I find myself once again finding comfort and rest in this verse.  Additionally, the Lord has been showing me that He is the source of my hope reminding me in Psalm 119:114 that He is my hiding place and my shield and that my hope is found in His Word." 

 I will confess, that has been hard for me lately.  To find HOPE.  To do as Romans 12 says and even REJOICE in HOPE.  But, back in June I DID rejoice in HOPE.  I was so happy to find out we were expecting again.  We waited so long...we waited and waited for Owen.  We waited and we lost.  We grieved.  We dared to hope again.  We waited and waited and then we had hope.  And we rejoiced!  

And that is the thing that the Lord has been teaching me most this past week.  That we do have reason to hope.  Josiah is here.  All is not lost. We have him right now in this moment.  Every night between 8 and 10 oclock-ish I am reminded that he is here and he will be heard!  He is alive...very much alive.  He is growing.  His kicks are getting stronger and he wakes up and wants to dance and wants to remind me that I am not to give him up so easily.  In the midst of all the shock and heartache I wasn't thinking of him.  I wasn't thinking of what a gift he truly is.  

The verse that the Lord has most used to remind me of His love for me has suprised me.  It's not one I would have normally turned to for comfort in such times as these.  As usual, my 2 amazing friends, Melissa and Darby (seriously...what would I do without you girls?  The Lord knows I need you....) have been so constant in their care for me and at some point very soon after our ultrasound they made a book of verses for me.  At first I had a hard time spending time in God's word because I felt such despair and even flipping through the verses they had written out for me was hard.  I saw so many of the verses I had leaned on through Owen and in the beginning of this pregnancy and felt lost and hollow reading them;  believing in His Sovereignty and yet having such a hard time accepting what He is doing with Josiah.  For some reason one in particular in that book,  Psalm 139:13-15,  struck a chord with me. 

 "For you formed my inward parts; you knitted me together in my mother's womb.  I will praise thee: for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knows right well.  My frame was not hidden from you when I was being made in secret, intricately woven in the depths of the earth."  

Josiah's life has from the beginning been in His Hands.  We are in His Hands.  He cares for us, he knows our hurts and our heart's desires and He wants us to trust in Him.  I'm not saying it's easy or that I am doing it perfectly but I am not despairing like I felt I was in those first few days.  What a blessing that is...to be reminded that  Josiah is His workmanship.  He formed him exactly how he is for a purpose.  I don't know what that is right now and confess that I have a hard time understanding why, but I can rest in the truth of His Word.  And there is comfort in that even in the midst of heartache.  

I know this is a super long post, but in closing I want to thank you all again for your continued prayers. We surely are feeling the love of God through them!  On Friday we have another appointment with the fetal cardiologist at Akron Children's so please be in prayer for Josiah and for us as we have another echocardiogram done of his heart.  

Thank you all for your messages and comments and emails and the like.  We have been greatly encouraged through each of you!

Love,
Cat

The worst kind of heartache

 When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. - Isaiah 43:2

It is with a heavy and tired heart that I find myself once again posting to this blog.   Over the past year it has been my dose of therapy and a way to update family and friends as to how we are doing after the sudden and unexpected stillbirth of our son, Owen at 41 weeks.  I felt, over and over again in those first horrible days how very much I was "in the flood".  Sometimes it threatened to overwhelm me, other times I grasped onto the support I knew God had so clearly provided us to wade through it.

Over the past year I have had my ups and downs....wanting to see God's hand in the loss of Owen, wanting to see some good come of it, knowing that He may not yet reveal what He has in mind and telling myself to be content in Him.  Then, in June, much to our delight, we discovered that we were once again expecting.  It was a pregnancy that I had prayed for even though I knew that it was going to be tough.  Not tough physically, I love being pregnant and feeling those baby kicks and even all the crazy changes that come with it, but tough emotionally.  I will never again go thru a pregnancy thinking that I get to bring a baby home in the end.  Never again will I assume that after that first trimester "all is well".  I knew this was going to be a tough one.  I had no idea how tough this will end up being.

We were cautiously optimistic.  And then....the day of my first prenatal visit, at 7 weeks I started spotting blood and cramping.  This is my fourth baby and I have NEVER had this happen before.  I was terrified.  Didn't God know how much we wanted this baby?  Doesn't He know that the latter part of this pregnancy is going to be horribly emotional for me given what happened to Owen....does the beginning have to be hard too?

To make a long story short, I ended up having 4 ultrasounds during the first trimester of this pregnancy and continued to spot on and off.  The doctors noted a "pool of blood" inbetween the uterine wall and the baby and believed that was the source of the trouble.  Overall they did not seem very concerned about it and felt that it would either continue to bleed out or get reabsorbed into my body at some point.
At each appointment I was a nervous wreck.  This baby's heartbeat has been very elusive, one time even requiring an ultrasound to confirm it.  Since it was at an ultrasound that I was told that Owen's heart was no longer beating,  it was a panic inducing experience to say the least.  So all in all, it has not really been smooth sailing.  My nerves have been frayed on more than one occasion and I know that I am failing miserably at trusting in the One who is the giver of all life.

At some point during the second trimester the spotting seemed to stop and I felt like I might actually be starting to relax and maybe even enjoy this pregnancy a little bit.  I hadn't really said to much about it to anyone, although obviously it you saw me you would know.  I did finally take a deep breath and posted a couple of great pics announcing the pregnancy with the kids onto facebook, which of course, makes it official :)

Then came our 20 week ultrasound on Sept. 24th.  This was an appointment I have been dreading.  I don't know why, I just couldn't wait to see that everything was OK and move on.  Quite frankly, what I really wanted to do was to fast forward to February or March and just see that everything was fine and be done with all the stress.  But, that has not been the Lord's plan for us.  And so.... at our 20 week ultrasound we find ourselves once again in the flood.

The ultrasound showed several abnormalities with our baby.  We got some preliminary findings from our doctor's office and were immediately referred up to Akron Children's Maternal Fetal Medicine Dept. to see a specialist that same day and have a level 2 ultrasound done.  The prognosis is not good and as you could only imagine we are devastated.  My doctor was wonderful, she knew how much we had been struggling and I could tell it broke her heart to have to tell us what she saw and refer us to Children's.

At Akron Children's we saw a wonderful doctor and the team up there was really nice.  We had a very short wait and then met with a genetics counselor to kind of go over what they might be thinking.  The ultrasound showed that the baby (a boy)  has a heart defect, where the lower chambers of the heart are not separated and there is a hole in between them.  Additionally, the main "in and out" arteries of the heart are both on the right side of the heart with a hole between them which causes the oxygen rich and oxygen depleted blood to mix together.  They also noted that one of his kidneys appears to be non-functional and is full of cysts.  They also noted cysts on his brain.  There were a couple of other things that they saw as well, but the overall consensus was that something was terribly wrong with our baby.  The doctor's initial thought was a chromosome defect, most likely  Trisomy 13, 18, or 21.  They would have to do an amniocentesis to test for any of those chromosome defects. They also scheduled us to have a fetal echocardiogram to get a better idea of the issues with his little heart.

In the days that followed I have felt like I have been set loose from my anchor.  I had Derek take me to hospital because I was convinced I had appendicitis after having severe pain in my side for 7 hours in the middle of the night.  Later that day, I thought for sure I had an ulcer, the pain in my stomach was so bad and I hadn't eaten in 2 days.  At 1:30 in the morning that next day I woke up my husband, who was already exhausted from our hospital visit the previous day and just from the heartache of what we were learning, and wanted him to take me back to the hospital because this time I was sure, at 36 years old that I was having a heart attack.  Looking back on it now, I know I sound like a crazy person, but   I absolutely was having a horrible tightness in my chest and the pain was shooting down my arm.  I told Derek I was afraid to go to sleep because I was sure I was dying.  I called over to the hospital and talked to the on call doctor who was really great.  She basically said that I could come to the hospital if I wanted, but she was fairly certain I was having panic attacks.  I'm sure she was right....  I thought I was handling things a lot better than I actually am.  It's been horrible and hard and every kind of sadness.

This past Tuesday we met with the team at Akron Children's and got the "official" word.  Our baby...our son... Josiah is what we decided to name him, has Trisomy 18.  The odds are very high that he will not make it.  The doctors have said that if he makes it to term, he will likely be stillborn or live a very very short time.   Josiah is due February 11, 2013.

We truly covet your prayers as we navigate this new flood in our lives.  Please pray for Josiah, I don't know how long we might have with him.  I don't know if he will make it to his due date.  I don't know if he will be born still or if the Lord would be pleased to give us even a little bit of time with him before calling him home.  Please pray for Braden and Addison...they were SO excited about this baby and it broke our hearts to tell them that we will more than likely not be bringing a baby brother home with us once again.  Pray for us....for Derek and myself, that we would cling to Christ in the midst of this heartache.  That He would give us the words to say to Braden and Addison and that we would find comfort in loving Josiah the best we can while we have him even now. We still trust in the God who holds are things in His Hands.  I don't have the slightest clue what He is doing right now so all I can do is rest in the truth of His promises.  He is with us.  He is sovereign over ALL things.

For you formed my inward parts;

    you knitted me together in my mother's womb.

 

I praise you, for I am fearfully and wonderfully made.

Wonderful are your works;

    my soul knows it very well.

 

My frame was not hidden from you,

when I was being made in secret,

    intricately woven in the depths of the earth.

 

Your eyes saw my unformed substance;

in your book were written, every one of them,

    the days that were formed for me,

    when as yet there was none of them.

Psalm 139:13-16

For more information on Trisomy 18, we have found this website helpful:

http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis

Love,

Cat

Owen's birthday memorial

"A butterfly lights beside us like a sunbeam.

And for a brief moment its glory and beauty

belong to our world

But then it flies on again,

and though we wish it could have stayed,

we feel so lucky to have seen it."

We had such a special night remembering our sweet Owen on his first birthday in Heaven.  It was wonderful.  What memories are made even in times of grief.

 I had wanted to do something special to remember Owen on what I knew would be a difficult day for all of us and had tossed around the idea of doing a balloon release and sky lanterns.  I liked both of those, especially the sky lanterns because I had never seen that done before and thought it would be something really cool we could do every year.  Unfortunately, the instructions said that it didn't recommend releasing the lanterns within 2 miles of farmland...and well.... that would be a problem around here!  I didn't want to be responsible for starting any fires anywhere.  THEN, my friend Melissa found the idea of doing a butterfly release.  I LOVED this idea!  I called the butterfly release company right away to see if there was enough of a notice to get the butterflies here by the 30th.  The website noted that they take reservations up to a year in advance for special occassions and at this point we were only about 2 weeks away from Owen's birthday.  I wasn't sure it was all going to work out....

But it did!  Chad from the the butterfly company called me back and I told him our scenario and what I wanted to order and he said it was no problem.  Perfect!!  So the deal is that they ship you the butterflies "on ice" basically.  They are supposed to be delivered before 10:30am the day before your "event" and then as soon as you get them you replace the ice pack they are shipped with so they stay chilled and dormant.  The butterflies came in 2 boxes full of individual envelopes with a butterfly inside each envelope.  They did a really nice job and you could have each envelope personalized.  We had Owen's name and Job 1:21 printed on the envelopes.  Then, about an hour before you want to release the butterflies you take the boxes out of the container and let them slowly warm up.

There was a glitch the day before which had me pretty unsure of how the whole thing was going to work out.  The butterflies were delivered 2 hours late!  I was freaking out a little bit!  They were supposed to be kept chilled and the ice pack was pretty much mush when I got it.  The box was cool, but not cold by any means.  I replaced the ice pack right away and then just kept praying that all the butterflies would be alive for our release the next day.  The Lord is in the details though.... He keeps reminding me of this.  I need to trust in Him and not be anxious.  I have such struggles with this and yet He patiently shows me this again and again.  Owen's service was at 7pm.  Around 6 I took the ice packs off the butterflies and took the boxes of envelopes out of the container.  I went to check them around 6:30 and heard some crazy scratching noises.  YAY!  I knew at least one butterfly was alive and waiting to fly!

The service was beautiful.  The weather was perfect.  Our friends and family gathered around us and we were so thankful.  The elders from our church led the service with a fantastic message of remembrance and hope from Charlie, prayer led by Bill and a hymn led by Eric.  And then we released the butterflies.  It was incredible and wonderful.  What a memory for us to hold onto.

In closing this post, I wanted to share what Derek wrote to Charlie when asked to write down some thoughts that we have had over the past year as we have coped with the loss of our son.  Following his thoughts I have posted some pics from the memorial service and butterfly release:

"It is in some ways very difficult to communicate what impact Owen's life and death have had upon us. There are some things that just can't quite be put into words. We now experience emotions and a perspective on things that were previously unknown to us. But if we would try to capture in words just a few things that have impacted and changed us with Owen's passing, here are some of our thoughts. Obviously, Owen's death has caused us to experience a measure of deep grief that we had never known before. Certainly we had before experienced times of sadness or disappointment through various circumstances, but all these previous moments were dwarfed in comparison to the day that we beheld our lifeless son. Believe us when we say that holding him has changed who we are forever. That kind of grief does something to a person; maybe we can say that it puts a soft spot in one's heart that wasn't there before. Now that soft spot will be there with us until our lives are over; and Owen's memory can at any moment kindle that soft spot in our hearts and bring back all those emotions that we felt on that day. Interestingly, Owen was named after Derek's favorite Christian author, John Owen, who himself outlived and had to bury all eleven of his own children. And so first of all we've come to know real grief through Owen's life and death.

Secondly, Owen's life and death has brought about a keener sensitivity to the shortness and uncertainty of this present life. When we say, "the uncertainty of this present life," we don't mean that it is uncertain from God's point of view, for "known unto God are all his works from the beginning of the world (Acts 15:18).  He has declared the end from the beginning, (Is. 46:10). But rather life is uncertain from our point of view. We truly don't know what God has in store for us each day. Neither one of us had any idea what we were about to find out on Tuesday, August 30, 2011. Losing a child was always just something that happened to other people, so we thought. We didn't know that this would also become our story. And so losing Owen has brought a greater awareness of how the things of this life, and yes even our loved ones, are temporal and can be taken away from us at any moment. While we can certainly find some level of joy and thankfulness in the things we enjoy and in our relationships, it is however now clearer to us how we cannot find our ultimate joy and satisfaction in things and people who can at any moment be removed from us. It is in God and His Son Christ Jesus that we have a most stable and abiding place for our souls to rest.And losing Owen has been an incredible providence used by God to teach us this; God most often afflicts His people  to teach them things they might not have learned as they ought otherwise. That's why the Psalmist says in Psalm 119:71, "it is good for me that i have been afflicted; that i might learn thy statues." And so Owen's life and death have been used to teach us something of the shortness and uncertainty of this present life.

Lastly, and bringing together everything that has just been shared, it has been through Owen's life and death that we have come to know more of the peace of God which passes understanding. How can people ever get over the loss of a child? How does grief not turn into despair? Well, we will never get over the loss of Owen. He now has a soft spot in our hearts that we be with us always. But, by the grace of God this grief will not turn into despair. There's something mysterious about Christians being able to both experience grief and peace at the same time, or grief and joy at the same time. We have been taught through the loss of Owen that both of these are real to us. Our grief is real, but our peace and confidence in God's ways towards us are equally real. We may mourn, but our joy is not taken away. This is because although Owen's death has truly affected us, yet there is something else that has effected us greater; and that is the salvation that comes freely in Christ. We have a hope that can't be taken away from us in Christ. He gives both life and joy everlasting. And so we can know the peace of God and the joy we have in Christ while also truly grieving over the loss of our son. What an amazing thing God has worked in our hearts.

In closing, we remember one of the mothers of our good friends coming up to us on Owen's funeral day. She said that she thinks that Owen's death will probably have a much greater impact on us and others than his life would have. She is probably right. And although we would have rejoiced to have him with us, God has seen fit to glorify Himself in a greater way through His loss."

Just when the Caterpillar thought the world was over, it became a Butterfly...

A year ago...

" Is it raining, little flower?
Be glad of rain; 
To much sun would wither one;
It will shine again.
The clouds are very dark, it's true;
But just behind them shines the blue.
Are you weary, tender heart?
Be glad of pain:
In sorrow, sweetest virtues grow,
As flowers in rain.
God watches, and you will have sun,
When clouds their perfect work have done."

- Lucy Larcom, "Streams In The Desert"

One year.  It's been one year.  One awful, incredible, interesting, wonderful, sad, fast, year.....  August 30 is a day that will never again be just another day for our family.  That is Owen's birthday.  The day that we were forever changed.  I have had countless moments of "we should have" 's leading up to this day.... We "should" have a baby with us for this or that, we "should have"a 6 month old right now, we
"should have" a one-year old on August 30th.  We should be having a birthday party, not a memorial service at the cemetary.    Worse than all the "should haves" have been the moments of "last year this time."  I was hugely pregnant all last summer...the WHOLE summer....  Owen wasn't due until August, but people were asking me clear back in May when I was due, assuming I would say "oh any day now" and couldn't believe I had to make it to August.  And, it was the end of August at that!  Owen's due date was August 23rd....  so anything that I have done this summer I find myself thinking, well "last year this time".  "Last year this time...." I was pregnant with Owen.  He was with us...he was moving and kicking and wonderfully alive.  And.... now we're just left with "we should have".....

But, it's more than that... Owen's loss has been unbearably awful and at the same time I have been able to see glimpses of God's hand in it over the past year.  And for that I am thankful.  I am thankful that I know where Owen is.  He is safe with our Heavenly Father.  There is no fear for his soul and I know that even in the midst of the aching and longing we have for him to be here with us, he is exactly where he is supposed to be.  God's hand is in it all.  The truth of that doesn't make me miss him any less or keep me from crying when I think over this past year, but it does make me thankful.  THANKFUL for the hope we have in Christ.  Thankful that His promises are true.  Thankful for God's people and the comfort they continue to provide.  Thankful for God's providence in circumstances and conversations and timing.
Shortly after we lost Owen a dear friend asked me if I could find myself being thankful for what had happened.  I didn't think it was possible.   I didn't even know what something like that would look like. How could I be thankful for the worst thing that has ever happened to us?  I wasn't angry with God or despairing....but thankful?  That seemed completely nuts.  But now...looking back over the past year I am starting to see a glimpse of what she was getting at.  I have had so many things to be thankful for over this past year.  Certainly, it doesn't make me miss Owen any less.  At the same time I see how God has worked these things out because of Owen.  And that is amazing.

What follows are a couple of quotes that helped me at various times over this past year.   I'll close this post with the words of the hymn "What E're My God Ordains" which was sung last year at Owen's funeral service.

Thank you to each of you for your prayers, cards, messages and posts letting us know that you are thinking of us.  We are so thankful! What a joy to be able to look back over this past year and see God's word in practice...

 Romans 12:15  Rejoice with them that do rejoice, and weep with them that weep.

*************************

 “May this be your experience; may you feel that the Hand which inflicts the wound supplies the balm, and that He who has emptied your heart has filled the void with Himself.”   
~J. Hudson Taylor

**************************

There is a Christian art of enduring pain, which we should seek to learn.  The real goal is not just to endure the suffering which falls into our life; to bear it bravely, without wincing; to pass through it patiently, even rejoicingly.  Pain has a higher mission to us than to teach us heroism.  We should endure it in such a way as to get something of spiritual blessing out of it.

Pain brings to us some message from God which we should not fail to hear.  It lifts for us the veil which hides God's face, and we should get some new glimpses of His beauty every time we are called to suffer.  Pain is furnace-fire, and we should always come out of this furnace with the gold of our graces gleaming a little more brightly.  Every experience of suffering ought in some way to lift us nearer God, to make us more gentle and loving, and to leave the image of Christ shining a little clearer in our lives.
                                                                                         ~(J. R. Miller, "In Green Pastures")

******************************************

What a blessing to be a Christian--to have a hiding place and a resting place always at hand! To be assured that all things work for our good, and that our compassionate Shepherd has His eye always upon us--to support and to relieve us.  - John Newton

*********************************************

What E're My God Ordains 

Whate'er my God ordains is right

His holy will abideth

I will be still whate'er He does

And follow where He guideth

He is my God though dark my road

He holds me that I shall not fall

And so to Him I leave it all

Whate'er my God ordains is right

He is my Friend and Father

He never seeks to do me harm

Though many storms may gather

Though now I know both joy and woe

Someday I shall see clearly

That He has loved me dearly

Whate'er my God ordains is right

Though now this cup, in drinking

May bitter seem to my faint heart

I take it all unshrinking

My God is true; each morning new

Sweet comfort yet will fill my heart

And pain and sorrow shall depart

Whate'er my God ordains is right

Here shall my stand be taken

Though sorrow, need, or death be mind

Yet I am not forsaken

My father's care is round me there

He holds me that I shall not fall

And so to Him I leave it all

About Owen part 2: 6 months

Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast. - Psalm 57:1

Today marks 6 months since we lost Owen.  Or yesterday....  or sometime in between yesterday and today.  He was born still on August 30th.  And February is strangely short.... and today is March 1st.  

To be honest, that kind of irritates me.....  I realize it's irrational, but Owen should turn 6 months on the 30th and that day doesn't even exist in February.  That just kind of irritates me.  

I am  thankful for the remembrance of friends during this time.   My two very best girlfriends never let a marker like this pass without letting me know that they remember too.  I am so thankful for that!  So thankful for both of them and knowing that I can continue to talk about Owen with them and other dear friends who have drawn close to us during these past months.  It still feels good to talk about him.  Sometimes it is hard.  Sometimes I can't even think about him without crying.  Sometimes I am fine.  Whenever anyone asks me how I am doing I always give the same answer... "it depends on the day".   The reality of it is that it depends on the minute.  It depends on what I've seen....what I've done....what I've been thinking about.   The past couple of times that I have updated this blog I have been in a funk for several days.  That didn't happen initially when I started this.  It was therapy at the time.  Now it's difficult.  I think of things that I want to write, but don't want dwell on his loss for too long because it's too hard to pull myself out of it.  I feel like I just want to stay in this little cave and have a pity party.  

If the Lord brings us to mind, please do continue to pray for us.  We continue to covet your prayers.

A couple of Sundays ago during worship Charlie prefaced a Isaac Watts hymn by drawing attention to one of the last stanzas in the hymn "I Sing the Mighty Power of God" where it says:  Creatures that borrow life from Thee are subject to Thy care;  there's not a place that we can flee, but God is present there...   He was drawing our attention to that phrase "creatures that borrow life from Thee" .   That really hit home for me.  We are just here for a fleeting moment are we not?  Some of us more fleetingly than others..... but God is in it all!  He knows.  He has not forgotten.  He is present.  There is not a single thing that is outside of His control. I am reminded of Job 1:21 again and again... "The Lord gave and the Lord hath taken away..."  But then what??  Then comes "Blessed be the name of the Lord forever"

 Even in our suffering He is an everpresent help.  And in our joy.  I don't want to forget that part either.  This life is hard.  Things don't go the way we thought they would.  It certainly wasn't on my radar that I would ever lose a child.  But, I am not the only person to have suffered loss.  I can dwell on it and get lost in it or I can ask God to help me thru it.  I will never be "over it".  I can only imagine that the thought of  Owen or the thought of another momma going thru a loss will always draw tears.  Everything leaves a mark.  I am scarred, I am beaten, I am hurting, but I am not alone.  There's not a place that we can flee, but God is present there...   but more than that, as if we need more, His Word tells us in Hebrews 13 that He will never leave us or forsake us!  Matthew 5 tells us that those who mourn will be comforted.  What promises we find in His Word!  Comfort for our hearts, a balm for our souls and promises from an unchanging and merciful God!

I Sing the Mighty Power of God

1. I sing the almighty power of God,
That made the mountains rise,
That spread the flowing seas abroad,
And built the lofty skies.

2. I sing the wisdom that ordained
The sun to rule the day;
The moon shines full at His command,
And all the stars obey.

3. I sing the goodness of the Lord,
That filled the earth with food;
He formed the creatures with His Word,
And then pronounced them good.

4. Lord! how Thy wonders are displayed
Where'er I turn mine eye!
If I survey the ground I tread,
Or gaze upon the sky!

5. There's not a plant or flower below
But makes Thy glories known;
And clouds arise and tempests blow,
By order from Thy throne.

6. Creatures that borrow life from Thee
Are subject to Thy care;
There's not a place where we can flee,
But God is present there.

I want to finish writing Owen's story.  I have gone over much of it already in some of my early posts.  But I want to think about him.  I want to be thankful for him.  I want to talk about him.   He was a blessing.  

Some of the details are starting to get a little fuzzy and that is frustrating for me.  I am glad that I did take the time to write those early posts because reading over them reminds me.  I will never forget him by any means, but the details start to fade.  


If you are new to this blog, you can get some of Owen's story under the "About Owen part 1 post....  )
One detail that I will not forget is walking into the hospital to deliver my baby.  When Derek came to the OB's office we talked with the midwife about what we wanted to do next.  There was no heartbeat...Owen was gone.   She said we could go home.  We could take a couple of days and then would induce me when I was ready or I could head over to the hospital and deliver him that day.  

We didn't hesitate.  I wanted to go right to the hospital.  I was in shock.  This wasn't happening.  Somewhere in the back of my mind I knew I had to see him to be sure.  If I went home it would have been torture.   Plus, we have 2 small children at home.  How can they understand what is happening if nothing has changed from their perspective?  They would still see Mommy with a baby in her belly.  They wouldn't understand.  


So we drove up to the hospital.  What I distinctly remember walking into the hospital is seeing a man as I got out of my car walking thru the parking garage holding a boppy.  I'm not sure how I even made it into the hospital.  We were walking behind him and he was carrying a boppy in for his baby.  I tried not to look at him but I couldn't help myself.  His baby needed a boppy and mine never would.  I nursed both of my other 2 children and I am very intimately acquainted with the many many many uses of a boppy.  And I had a new one at home that was just for Owen.  It was heartwrenching.    Just those little things......


Like I've said before in previous posts, I do not have a bad thing to say about the staff at Akron General.  They were wonderful.  From the minute we walked onto the Labor and Delivery floor you could tell they were aware of what was happening and they were compassionate.  


Obviously I had to be induced since nothing at all was happening.  I have had an epidural and pitocin for induction with all 3 of my kids.  I had kind of been entertaining the thought off and on of trying to deliver Owen without the epidural before this happened.  I hate getting them and my body seems to take to them annoyingly well and I am  numb for hours and hours.  I couldn't feel a single thing when I had either one of the previous two.  Now, I realize, that some would say "great!  what are you complaining about!  Sounds like a good plan...besides, isn't that the point of an epidural!".  I just didn't like it.   I couldn't move for hours, it made me super groggy, I just didn't like it.  But it doesn't matter.  This time I didn't want to feel anything.  All those plans went out the window.  My midwife asked if I wanted a birthing ball etc etc.  No way.  I wanted the epidural.  I wanted to be numb.  I didn't want to know this was happening.  


Unfortunately this was the worst epidural I've had.  I got the shakes, which has never happened before, then I got sick....thought for sure I was going to puke.  Then at some point in there I am quite sure I just started freaking out.  Somewhere in the 5 or 6 hours I was there waiting for things to progress it must have started hitting me.  My baby was gone.  I still had to deliver him and go thru all that trauma and I would have no baby to take home with me when it was all said and done.  I would bear all the marks of someone who just had a baby without the only thing that makes it all worth it.  He was never coming home.  


As I have said before, delivering Owen was the most surreal thing I have ever had to endure.  It was almost total silence in between whispered bouts of encouragement to push.  It seemed like it took forever to deliver him...but he wasn't able to help at all.  And he was big.  8lbs 14 ozs.  and 19 1/2 inches long.  He was over a pound bigger than either his brother or his sister.


This is getting kind of long again, so I'll continue on next time......


I was thankful for so many things that day.  I wasn't prepared for what was happening but I am thankful again for family and friends who got us through and thought of things that we couldn't.  


And even right now..... I am sitting here finishing up this post.  My 3 year old just got up from her nap.  She wants a snack.  Cat in the Hat is on......she must get up and dance.  Right now.  There is music.  She must dance.   Thank you Lord for our children.  All 3 of them.  


- Cat