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


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