Sunday, February 2, 2014


“I didn't know what it was I was feeling. Then I realized it was seeing someone and knowing immediately that you love him.”  - E. McCracken

One year ago, Super Bowl Sunday, in fact...... Josiah Owen Marx decided that he would not wait any longer......he was born, in the Lord's perfect timing and in answer to our prayers on February 3rd, 2013.  I say that it was in answer to our prayers because Josiah had Trisomy 18 and we were told that it was very likely that he would not make it to full-term and if he were to make it then he would likely not survive birth due to his heart defects.  I was scheduled to be induced on February 5th and I so desperately prayed that he would come on his own and in his own timing.  The Lord heard our cries and he gave us that gift as well as what we dared to hope for....the gift of time with our son.  We had almost an hour to spend with him before he slipped from my arms and was safe in the arms of Jesus.  The time was precious.  Happy Birthday in heaven my sweet and beautiful baby boy.  How my heart aches and misses you so....    Until Forever sweet baby.

We have 4 children.  Two of them are here with us and we get the amazing blessing and privilege of raising them.  That is not lost on us.  The Lord has entrusted us  with the most incredible children and is letting us, as best we can, with all of our love, bring them up.  And two of them are with our Lord and Savior, Jesus Christ.  There is grief.  There is joy, for what that must be like for them.  We are forever changed.  That is not lost on us either. 

Sometimes it is ever so hard to get started on a post.  I love to write, I have lots of ideas and fragments of things I want to say, but to sit down and get going is a chore sometimes.  Updating this blog never fails to be emotional and introspective.  That's always a tough combo.  Tough as it is to get going though, it's therapeutic and that's why I write.  I like to think that somehow the Lord can refine my stumbling words and the pain of our loss to bring comfort to someone who may need it and that's also why I write.

I do have some fun things to share too!  Back in March an amazing and unexpected gift was given to us in the form of a benefit held for our family.  The outpouring of support and love was overwhelming in the best of ways.  One of the goals of that benefit was to be able to take our first ever family vacation to Disney.  We took that trip at the end of April, and let me tell you, it was nothing short of magical!   I had never been there before so I had no idea what to expect.  It truly was a time of refreshing (even though it was exhausting!) and a time for our family to make some new happier memories reconnecting together after the past 2 years of heartbreak.  For those dear ones who wanted this for us, it was everything they hoped it would be and more.  What a blessing! And a special thanks to "On Your Way With Renee" for planning our trip, making reservations, and answering a millions questions for us!  Visit her facebook page if you are ever thinking of taking a trip to Disney! 

Another perfectly timed blessing came in the way of God's Tiny Angels....  I was connected with them at the benefit and was encouraged to let them help us in any way they could with some of Josiah's expenses relating to his headstone.  The week we got back from Disney we received word that his headstone was in and that the remainder of what we owed on it had been taken care of by God's Tiny Angels!  What a blessing!  His headstone was installed the following week..... He is right next to his brother, but our hope is found in Christ knowing that they are truly hand in hand with Him waiting for that day when we will be with them again.  My sweet boys....

When I think of the blessings that have met us along the way as we journey on I am strengthened in my faith, humbled by the extent to which I have been allowed to see His Hand working and in awe of His care for us in spite of the river of tears we feel pulling at us.  He works through us, you and I, and what a gift it is to be used of Him to bring relief, comfort and blessings to His people.  Praise be to God and great thankfulness for those vessels He is using. 

If you are looking for incredible organizations to donate to, we have been blessed beyond measure by more than one.  At the benefit there was a list of the great businesses who donated goods, services, food and auction items.  Additionally while we were pregnant with Josiah we were able to get a 3D ultrasound thanks to an organization called Sustaining Grace who worked with 4D Peek of Cleveland to cover the costs of that priceless blessing.  And most recently has been God's Tiny Angels.  Here
are a couple links for anyone looking to learn more about the ways these organizations bless families like ours:

In closing, I have to thank the Lord for each of you.  I am overwhelmed again and again at the kindnesses extended to us.  Thank you always for remembering Owen and Josiah.  Thank you for caring so much for Braden and Addison.  Thank you for what you have done and continue to do for our family.  I love that you remember, that you ask, that you keep our boys in your hearts alongside us.  You have truly been God's hands and feet to our family and it makes our hearts full in the midst of the floods that have come.  

In His Hands,

Thursday, April 4, 2013


"The Lord is good to those who wait for Him,  to the soul who seeks Him.   It is good that one should wait quietly for the salvation of the Lord."- Lamentations 3:25-26

March 3rd at 5:01 pm marked one month.... one month since we said hello and goodbye in the short space of an hour.   It was peaceful, beautiful, and agonizingly heartbreaking all at the same time.  Yesterday at 5:01 pm marked 2 months.  Time marches on.  I miss our sweet baby.......he was so tiny and so perfectly himself.  The Trisomy 18 left it's marks on him, for sure, that little finger sticking up and his little hands clenched, and it made him so perfectly....well......perfectly Josiah.

The 3 pictures I have on this post are of the hand imprints that were taken of Josiah at the hospital.   I love that his little fingers were captured so perfectly.  The second one is of Braden, Addison, and Josiah's hands all together.  Love it.


Lined up our staircase we have pictures of the kids... hospital pics, 1 month, 3 months, 6 months and so on.  Up at the top I have Braden and Addison's 1 year pictures and then I have Owen's pictures from the day we had with him.  This past week Josiah's pictures were added to the wall.  Most days I smile as I walk past all those pictures.  Some days I stop and study Owen's and I can't stop myself from asking Why?   Sometimes I scream it......sometimes I cry it......    Why Lord?  Why did you take him from us?  Don't you know we were waiting for him?  Didn't you see we were ready for him!?  Why Owen?  Why Josiah?  Why did we lose two??

I am not superman...I have questions, I am broken, I wonder if my heart will ever heal.  I am human.  I am trusting and clinging to the promises of His Word, but some days it is ever so hard to do.  I know we all have times like this...

There are two songs by JJ Heller that I am just really loving right now....  "Your Hands" and "Who You Are".  I will post a link to them below, but the words are so reassuring and encouraging to me at this point in our journey.

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That you would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
O Lord before these feet of Mine

When my world is shaking
Heaven stands....
When my heart is breaking
I never leave your hands....

I know you hate to see me cry
One day you will set all things right....

I just love that last part... it is good to be reminded that He does not rejoice in our sufferings and that He will truly make all things right in His timing.   So even in my asking "why?" I still know that the Lord is over all these things.

And so that is the reason I love that other JJ Heller song... she says,  "sometimes I don't know what You're doing, but I know Who You Are...."

You have a Father's heart
And a love that 's wild
And You know what it's like....
What it's like to lose a child

Sometimes I don't know what You're doing
But I know Who You are....

How true are those words?  We can't see how His plan is going to play time maybe we will be blessed enough to be able to look back and see how He worked all these things out for His glory and our good.  But for now, I can completely relate to not knowing what He is doing.  I have no idea why 2 of our 4 children have been called home so soon.  But, throughout this journey He has taught me to trust in Him.  Lately there have been a couple of verses in particular that have brought a lot of comfort and clarity to my thinking....Isaiah 55:8-9, is one that I find myself coming back to again and again whenever I find myself asking "why?"  It says, "For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord.  For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."

I might never, this side of heaven, have all my "why's" answered, though I surely hope He continues to let me have glimpses.  I hope and pray that He is doing big things with both Owen and  Josiah's life, for I know He does all things well.

" For the Lord will not cast off forever, but though He cause grief, He will have compassion according to the abundance of His steadfast love; for He does not afflict from his heart or grieve the children of men."  - Lamentations 3: 31-33

There have been several times over the past couple of months that I have sat down to update this blog.  It's been hard coming for some reason.  But, in that time I have had lots of time to think.  Time to think. Time to pray.  Time to be sad and time to be thankful.  Mostly what I think about is the amazing way that the Lord answered prayers so clearly in the events surrounding Josiah's birth.  How can I not be thankful for that?  Inexplicably, but for the grace of God, I have felt a closeness and peace with Christ that is certainly beyond my understanding given the earth shattering grief that has accompanied it.

 I am so thankful for your continued prayers for our family.  Thankful for the amazing benefit that was held for us and for the support we have received from all of you as we navigate these waters.
I know that many are wondering how we are doing in the weeks that have followed Josiah's loss.  All I can really say is that it depends on the day.  Things were just so different with Josiah.  It was the knowing that made the difference.  Owen's death was so sudden and so unexpected.  The day he was born was the beginning of our grief.  With Josiah the grieving began at that ultrasound in September.  That didn't make it any easier....just different.

 "But we are not of those who shrink back and are destroyed, but of those who have faith and preserve their souls." - Hebrews 10:39

Here are those links ....


Wednesday, February 20, 2013


I wish I could think of some kind of new way to say Thank You.   It is an amazing "problem" to have....  :)  We have been nothing short of overwhelmed by the outpouring of love and support that we have received since we found out that Josiah had Trisomy 18.  I have been so touched by the messages, comments on this blog, cards, emails and every kindness that has been shown to us over the past several months.   We are incredibly grateful for the meals and gift cards  that are being provided for our family.  It is just wonderful to not have to think about getting dinner put together every night.  And there are so many other ways we are shown how much we are cared for.   Gifts of time, of money to help with expenses, provisions for Josiah's memorial service and really is overwhelming to think about.  And we can't say thank you enough!    To sit back and really know that we have had SO many people praying for us has been one of the biggest blessings in this trial.

We have been so incredibly uplifted by so many other things over the past couple of weeks as well...  and on March 2nd there is another amazing day in the works for our family.  My two dearest and best friends, who have been absolutely incredible supports for me through both the loss of Owen and now Josiah, are putting together a Benefit Dinner on our behalf.  Again....  we are overwhelmed.  Even watching them put this evening together has been well.... overwhelming.  Addison's preschool teachers, our families, our church family, friends and people we don't even know (what a blessing!)  have been just incredible in putting the dinner and silent auction baskets to make this day so amazing for our family.  What can I say but thank you???
Here is the link to the Dinner for anyone who might be able to attend:

I was scrolling through facebook the other day and a friend of mine from college had posted a link to a blog.  The title of the post caught my eye.  It was called "Mom Body".  Well...I certainly know what that is like, so I clicked on it to read the post.  I didn't look to see who's blog it was or anything like that I just started reading it.  The first thing that made me catch my breath was that the author said she only got to be a mom to her son, Owen for 3 weeks....   Suddenly I felt like there was a whole lot more to this woman that I was going to be relating to.   I read a little farther.  She was talking about Super Bowl Sunday and how she wasn't paying much attention to the game or the commercials because she was watching something unfold thru facebook.  She was praying for a birth that was taking place...and praying that the family would get to spend some time with their baby.

I almost dropped my phone.... She was talking about ME.  She was praying for Josiah and our family.

I don't think I realized until that moment the impact that Josiah's life is was having and is continuing to have.  It is overwhelming.

After I composed myself I realized that I did know Owen's Mommy, although not personally, but I absolutely remember when her son joined our Owen in Heaven....  We prayed for her and her husband as they had to go thru the heartache of losing their son.  I still pray for them and her blog reminds me that we are not the only ones who have walked this road.  I just wish I could fast forward into the future and see how the Lord is working in all this.  I know He is...  I just don't know how.  But, I am seeing glimpses.  This was a glimpse.

Answered prayers are glimpses too... I have had some time to just sit and think about Josiah and his big life and I am starting to come out of the fog a little bit.  There were BIG answers to prayer on February 3rd.that I talked about in my last post.  But now, I'm starting to think about other ways in which the Lord worked everything out on Josiah's birthday.  Just one quick one I wanted to share with you had to do with our family being healthy for his delivery.  Braden, Addison and Owen were all summer babies....I have never had a winter baby before.  I never had to worry about us being sick around my due date!   And this winter has been terrible...the flu, strep, crazy fevers... all sorts of nastiness going around.   About 2 weeks before I was to be induced I tried to quarantine our house as much as possible... I was so scared that my kids might get the flu and wouldn't be allowed up on the maternity ward when Josiah was born.  I didn't know if we were going to be able to bring him home or not and I was terrified that they might not be able to meet him.  I just wanted us to all be able to be with him for however long we had him.   Sure enough, the Thursday before I was to be induced Addison woke up with a crazy high temperature.  It was 104.7...she was burning up.  I took her as soon as I could to the dr. where she tested negative for strep & the flu.  It was just a virus that she had to work through.  The last random virus she had lasted about a week...and was followed up by a terrible cough for another week.  Argghhhh!!   She had about 5 days to get better before I was to be induced AND Braden needed to stay healthy!  I know there were prayers going up for us....  Addison's fever broke around noon on Saturday.  Josiah decided on Sunday morning that he wasn't going to wait until Tuesday to join us and my water broke.  How is that for answered prayer??  OH......and Braden never did get any signs of that virus.

Thank you Lord for showing us that your Hand is in the details....

"Hear, O Lord, when I cry aloud;
be gracious to me and answer me!
You have said, "Seek my face."
My heart says to you,
Your face, Lord, do I seek."
Psalm 27:7-8

In Him,

Sunday, February 10, 2013

One Week

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely holding on
But there's a greater story
Written long before me
Because He loves you like this

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence 
Has brought me to His voice

- From the song, I Will Carry You by Selah

One week ago came the day we have been waiting for......9 months of waiting.  9 months of praying, of hoping, of joy, of sorrow, of dread and anticipation, 9 months of waiting......and waiting.  Waiting is not really my strong suit, but this was a different kind of waiting.  This was different because 4 months ago we got the news that our much hoped for baby, Josiah had Trisomy 18.  Those words changed everything.  

Trisomy 18 was heartbreaking.  And strangely, Trisomy 18 made the waiting so much sweeter.  Trisomy 18 made me pay attention.  It reminded me that this little life was fearfully and wonderfully made just as he was.  It caused me to lean on God in ways that I never thought I could.  Just 18 short months ago we were burying our son, Owen and now here we were again facing that very real possibility for Josiah.  I didn't know for sure what God's plan was in all of this.  We were devastated and heartbroken.  Then slowly came hope.  And the reality that part of God's plan was already playing out.  We lost Owen at 41 weeks due to a cord accident.  There was no warning.  There was no expectation that morning as I drove to my ultrasound appointment that I would be leaving the hospital a day later with empty arms and a broken heart.   God's plan for Josiah was different.  I knew He might still call him home sooner than I wanted Him too, but I wasn't sure.  I was finding hope and realized that we were given a blessing even in Josiah's diagnosis.  We were being  told to cherish every minute we had with him because our time together might be short.  And so I paid attention.  Every kick, every wiggle, was cherished in a way that I hadn't been able to do with Owen.  Because this time we knew...

So we prayed.  We prayed for so many things.  We prayed for Josiah.  Even before the Lord gave him to us we prayed for him.  We longed to heal our broken hearts.  We missed our sweet Owen.  He was wanted and loved.  And we prayed.  The Lord heard our cries and gave us Josiah.  And what a blessing he has been to us.  Not in any ways that we would have expected or would have asked for.  And we once again find ourselves with broken hearts and empty arms.  But even in that I can see the blessing that was in that little 5lb 7oz baby boy.  He was such a sweet little guy but he had such a big big life.

I was expecting Josiah's birthday to be February 5th.  That was the day I was scheduled to be induced.  And Josiah is our 4th baby.  And I have been induced every single time.  I did pray so much that Josiah would come on his own......I didn't know what would happen when he got here and I didn't want to have to "pick the day" if things didn't go well.  I knew the Lord was in control of things though so I was at peace with the induction.  So I planned for Tuesday.  But the Lord and Josiah decided that Sunday was better.  And so the unbelieveable happened on Sunday February 3rd.  Between 9 and 9:15am my water broke.  And that was it......  we were going to meet our Josiah.  And we didn't have to wait until Tuesday.  

We were scared......and we were hopeful.  There was so much unknown.  But we were thankful.  Thankful that Josiah decided that he was coming on his own.  Prayers were answered.  

Josiah Owen Marx was born at 5:01 pm on February 3rd, 2013.  He was 5lbs 7oz. and 17.5 inches long.  And he was just perfect. 

And again.......prayers were answered.  Josiah was with us for close to an hour.  We had prayed and prayed for the gift of TIME with him.  The Lord heard our cries.  He gave us that sweet precious gift of time.  We had time to talk to him.  To tell him how much we loved him.  To snuggle with him.  Time to feel Josiah's heart beating and to hold his hands.  Time to watch him breathing.  Time to share his life with his brother and sister and time to make memories.  And at 5:59pm Josiah went from our arms to the arms of Jesus.  

How blessed are we though?  Our hearts are broken and full at the same time.  Prayers were answered. Sometimes we don't get to see until months or even years later the ways in which the Lord answers our prayers, most especially if he answers in ways we weren't looking for.  Jesus was merciful to us even through this trial....... We had Josiah.  Even if for just a short time, he was ours.  And when it was time, Josiah came on his own and we had TIME with him.  What a blessing even in the midst of a heartbreak. 

Blessed be the Lord,
for he has wondrously shown his steadfast love to me
when I was in a beseiged city,
I had said in my alarm,
"I am cut off from your sight."
But you heard the voice of my pleas for mercy
when I cried to you for help
-Psalm 31: 21-22 

Thank you doesn't seem adequate enough for all the prayers that have gone up continuously for Josiah and for us over the past several months.  But please know how truly humbled and blessed and encouraged we have been.  What an amazing God we serve.  A God who hears our prayers and brings us together to comfort one another when comfort is needed most.  So thank you......  thank you for holding us up, for taking care of our needs, for meals, for cards, for gifts of money, for flowers, for gifts of time, for giftcards and thank you so much for being there for us.  

In His Hands,

A HUGE Thank you to Christina at Grace Designs Photography for sharing in our joy and sorrow on Josiah's birthday and for capturing precious memories of our time with him.  Below is the slideshow she put together for us....

Monday, January 28, 2013

Sweet baby boy

Things have been definitely been moving along the last couple of weeks.   I had my 38 week checkup this morning and I am 3 to 4 cm dilated.   Last week I was 2 cm and the week before that she didn't note anything significant so things are in motion for Josiah to make his debut. I had an ultrasound done today as well to check on Josiah's position and to get an estimate on his weight.  He is head down, which is great!  They are estimating his weight to be about 6lbs.

So, unless the Lord has other plans in mind, I am scheduled to be induced on Tuesday, February 5th.

Gulp....  that is kind of scary.  Mostly just because I don't know what is going to happen when Josiah gets here.  There are so many unknowns it seems with Trisomy 18.  There are the good kind of unknowns, where these babies are strong and prove everyone who says "incompatible with life" wrong. And then there is are other unknowns.....  will be be breathing?  Will his heart be strong enough to survive delivery? Will we get to meet Josiah?  Will he come home with us?

I am thankful to have the hope that surrounds some of these unknowns....   I never would have even thought that there would be a possibility of bringing Josiah home back when we first received his diagnosis.  Now, I just have to admit that I don't know what is going to happen.  I really have no idea.  The Lord does though and we can rest in that.  I remind myself again as we enter the end of this part of our journey of Psalm 139.  Josiah is fearfully and wonderfully made, just exactly as he is.  He was made for a purpose and God knows what that is even if we can't see how or why or anything but the next few minutes in front of us.  As I was reading over that passage again, I was brought to verse 16:

" 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 were none of them."

What a timely reminder today....  Josiah is His workmanship and his big life, no matter how long the days will be are all perfectly in His plan.

We continue to pray for time with Josiah and are so thankful for all of you who are constantly praying with us for him.  Thank you so much for your support and love through this journey.  We are so thankful to know that  we have had constant love, prayer, support and encouragement through these trials.  From losing Owen, to carrying and loving Josiah for these past few months there are just no words to express our gratitude to each of you for the ways in which you have loved us and blessed us.

I am not sure what these next days will hold....  I am having lots and lots of contractions and they have obviously been doing something!  I don't know if Josiah will wait until next week or if he will come earlier on his own, but I am spending these last days cherishing each of his kicks and wiggles not knowing how much time we have together.  It has truly been a blessing carrying this little bundle of energy.  He has impacted our lives in ways we never could have imagined after losing Owen and in spite of the heartache that may await us I am blessed to be his Mommy.

Thank you all for your continued prayer and care for family.   I will keep you posted on what happens!


Wednesday, January 9, 2013

Getting closer

Right before Christmas we were blessed to have an incredible opportunity to "see" Josiah on a 3d ultrasound.  All of the details were taken care of by one of my dearest friends Melissa who got in touch with an organization called Sustaining Grace (  & 4d peek of cleveland  to make all the arrangements including paying for our session.  It would have been something that was outside our means to have done so it was a double blessing to have the ultrasound done and not have to worry about how we were going to pay for it.  

Josiah was feeling very cooperative for our ultrasound and we got tons of great pictures of him.  He was wiggling and squiggling all over the place and it was great to let our kids and families "see" him in that way.  I can feel him jumping around all the time, but obviously it's hard for our children to understand that although we don't know what the Lord's plan is for Josiah he is here with us now....alive and kicking!  So it was really special for them to be able to see him and try to get a little bit of understanding, as much as a 4 and 6 year old are able.  It's hard for Derek and I to always know what to say to them, but we just try to prepare them as best we can for what even we ourselves don't understand.  Josiah's life is completely in the Lord's hands.  We just don't know what to expect.   

I have been feeling much more hopeful about Josiah's impending arrival.  I still know that we may not have years, but only minutes or hours, but we would be so thankful for any time we can have with him.       I am still amazed at some of the stories in the Trisomy facebook group and online telling of the resilience and determination of so many of the T18 babies and their families.  So, come what may, I am determined to have hope for Josiah.  I am not wishing this pregnancy away, eager to get to the end, because therein lies the great unknown, but I am determined to sit up and take notice of each of his kicks and wiggles and rejoice in his life.  

We are at about 35 weeks along right now.  He still seems as strong and as active as ever which is so encouraging.  I have noticed he's kind of changed our evening routine a little bit.  He still starts moving around when I finally sit down on the couch in the evenings but then he settles down.  I might get a little kick or two from him when I go to bed, but I think he's settling in for the night since that used to be his seriously active time.  These past couple of weeks I have noticed that he has been waking up to dance in the 5-6am range instead.   I think he's becoming a morning person :) ha ha ha

As I look over these pictures of Josiah, I sometimes find it hard to think that there is anything "wrong" at all with him.  This pregnancy reminds me of being pregnant with Addison....he won't let me forget he's here, just like her!  He looks just perfect in the pictures we got.  He looks just like our other kiddos and he even looks plump!  I know what the amnio results showed, confirming the Trisomy 18 diagnosis and we have been to the cardiologist 4 times to have hour long echocardiograms and ultrasounds done of his heart so I am not in denial about what Josiah is dealing with but looking at his little face just makes it hard to believe sometimes.

This past week we did have a meeting up at Akron Children's which was difficult.  We needed to put together a birth plan, outlining as much as one can in situations like this, what we would or would not want done in various scenarios.  How much intervention do we want to happen if Josiah is born alive but is struggling etc...   It was hard to think in those terms.  We wanted to have some kind of an idea to let the doctors know our wishes for Josiah.  We want to give him every chance there is, but at the same time we don't want him to be in pain or struggling to stay with us if that is not what the Lord has planned for him.  I am praying that Josiah will make it clear to us what we should do.

So, things will be changing here in probably about a month or so. I feel like we have been in a holding pattern here for the past couple of months and it has been nice.  He has been snug as a bug and as long as he's been kicking and moving I haven't found myself worrying, which is amazing for me!   Josiah's due date is February 11.  Each day that we get to have with him is a blessing and a miracle, so we wait expectantly for the Lord's will in his life and in ours.  I still am praying for time with him....   even just a little.  So please continue to pray for us.  Pray for Josiah, that he will be strong and that the Lord will help us to help him when he is born.

Pray for our children, Braden and Addison.  It is hard to know what to tell them sometimes.  They know that Josiah has a "boo-boo" on his heart, but we can't tell them for sure what that means in terms or his living or dying and that is hard for them, I know.  When we first found out that Josiah had Trisomy 18 we were told by the doctors that Josiah would more than likely be  stillborn or live just a few minutes.  When we told them about Josiah's heart and his boo-boo we sat down with them and talked to them and tried to prepare them for what we understood would be the scenario...that baby Josiah would probably die and that just like baby Owen we would not be bringing him home.  

Over the past couple of months I have found that there are so many other scenarios with Trisomy 18 that we just can't be sure of what will happen.  It is hard to prepare Derek and I, let alone a 4 and 6 year old for so many unknowns.  We can't say that Josiah will die, we could actually bring him home!  How amazing would that be?  And what a reminder for us that Josiah's life is truly in the Lord's hands....whether it be for minutes, days, or years.  Anything is possible, so please pray for the kids that they might be comforted and have understanding as we all walk this road together.

Pray for Derek and I as we await Josiah.  We have hope for some time, but know that we need to be accepting of whatever the Lord has willed for our family.  Pray that we do what is best for Josiah, pray that we are open to what Braden and Addison need and pray for our families....grandmas, grandpas, aunts, uncles, cousins and friends as we know that hard days may be coming.  Pray that we would find comfort and peace and even joy in the plans the Lord has for Josiah and our family.

"For I know the plans I have for you, declares the Lord, plans for peace and not for evil, to give you a future and a hope." - Jeremiah 29:11

Thank you for your constant prayers!
Cat, Derek and family

Wednesday, December 5, 2012

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.

 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 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 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