Visiting Ava

Perhaps some grace can be bestowed upon people who have a blog and then abandon  it for months and months.  I of course am one of those people, and even though I’ve been busy composing blog posts in my head, you can’t read them if I don’t type them out!

And the honest truth is that I’ve been holding back because I’ve been feeling this pressure to make every blog entry deep and profound.  This is a burden that I and I alone have placed upon myself since our Ava journey and her death.  I ask myself, ‘Are people really going to want to read my trivial and somewhat meaningless entries?’   And then I tell myself “No, they wouldn’t”, and I walk away.   But let’s be honest, I’m not writing for the masses, I’m writing because it’s in me to write!   It’s something God has put in me to do that I love, so I have to let my go of my misgivings  and just write because I can, because I have a blog and I’m allowed to… so there!

So I might even attempt at posting a trivial entry sometime soon, this entry however is not.  Kinda ironic really.

This post is about visiting Ava, which as you can see from the picture below is what our family calls our visits to Ava’s grave. We all pile in the car and on the way there I feel sad, but I also experience a slight form of anticipation like I’m going to be near my baby again.  I get out of the car feeling a little keyed up, and then a few moments later I’m standing at her grave and I realize once again that I’m not feeling it.   In fact I’m having a really hard time feeling connected to this granite slab with Ava’s name on it.   Sure I’m standing over her… rather macabre.. standing over what’s left of your daughter..  but where is the sense of connection that I’m looking for?

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That connections not there because Ava’s not here.  This is just her memorial, the stone that we have erected to let the world know that we loved her and remember her.  It’s in a sense her little place in the world, but it’s here because she’s not here.

So where is she?

Well, since most of the western world today who acknowledges a God believes that every good person who dies automatically goes to heaven, most people would affirm with me that that heaven is where Ava is.

But for those of us who are followers of Jesus Christ and believe the Bible as the perfect and unerring word of God,  there aren’t actually any verses or even a verse in the Bible that clearly and definitely say that babies or small children automatically go to heaven.  Crazy right?  And to make it even more confusing the Bible makes it very clear that when we are born we get our own share of Adam’s sin often called ‘original sin’ and therefore we are all born sinners and from day one are separated from a good and perfect and just God who can tolerate no sin.   So now we have a problem because the Bible also tells us that there is NOTHING we can do to save ourselves,  nothing at all.  Not a word or a good deed or the power of positive thought or anything that could clean us up from this sin and shield us from the wrath of God and eternal separation from Him.  But then we are given hope… Jesus appeared on earth.   God in the flesh and He came among us and taught us and showed us a way to be right with God again.   This was through the work of the cross when Jesus died for us, and took our place and our punishment and bore our sin on the cross and paid the high price sin demanded, and then rose again!   Completely victorious, conquering death and sin, AMEN!   So the Bibles says if we believe in Him and accept His free gift of salvation, His blood will remove our sin and save us so that we can go and be with God in heaven for all eternity.

Um… so again that leaves us with a problem.  Because even though salvation is a free gift, we have to accept it.  Romans 10:9-10 says that we have to confess with our mouth that Jesus is Lord and believe in our hearts that God raised him from the dead in order to accept this free gift, which works for me, but how in the world was my 8 month old baby supposed to be able to do that?   How could she confess with her mouth that Jesus is Lord and ask forgiveness for her sin?   She obviously couldn’t, she was completely incapable.  That little baby that suffered so much in her short life, wasn’t able to take those steps to save her soul.  So it’s done then?  We are out of options?  Ava’s not in heaven?

Hold your horses!!!

The Bible is very clear that God gives salvation as a free gift and that He alone is sovereign.  And God is good… didn’t we see that all through Ava’s story?   And from the moment Ava died in our arms and Jason prayed that soul into heaven we have known in our hearts exactly where she was.  She is in heaven!  We believe this to our very core.  The same God who gave us the grace to endure her illness and eventually her death, who gave us joy through it all and never left us alone will be faithful to the end.  How could it be otherwise?

Our church has been working through the book of Romans and the past few weeks have dealt with original sin, so our beloved pastor Norm (who did Ava’s funeral service) was so kind to post this information on our church’s website last week regarding babies just to clear up this often muddied point.   Here are the reasons he gives for babies going to heaven when they die

  1. God is good and always does good.
  2. God is just and always judges justly.
  3. God is merciful.
  4. God is abundantly gracious.
  5. Salvation is always, for any who are saved, entirely an act of grace, a ‘free gift’ (Rom 5:15-17), and even our faith – necessary to believe, is a ‘gift’ from God.  So salvation is 100% a work of God applying Jesus death and resurrection to us by grace.
  6. We believe God applies this grace to those we are discussing who have never personally sinned, covering their original or imputed sin by Jesus atoning work on the cross.  God does this entirely by grace as well, without their having faith.
  7. Plus it appears when final judgment is discussed in the Bible those sent to hell for eternity are sent their for their own acts and attitudes of sin (Romans 1:18-32, Rev. 19, etc.)

For further reading on this I would recommend the following:

  1. Dr. Albert Mohler’s article HERE
  2. Dr. John Piper’s short article HERE
  3. Dr. John MacArthur’s three in-depth sermons HERE (you can read the sermon manuscript by just clicking on the sermon title or listen to the sermons by clicking ‘high’ or ‘low’).
    And I want to add that John MacArthur has also written a book I love, “Safe in the Arms of God“,  a must read for anyone who has lost a child.

I read those points from Norm and I want to yell “AMEN” from the top of my lungs!   And I read those articles as well and they resonate with my heart and my mind and what I take from them is that I  completely trust in God’s love and faithfulness to care for these little ones, when they couldn’t do anything to possibly save themselves.  He is just and good and I am to have no fear that Ava is anywhere but in heaven for eternity.  And she is there not on her own merit, but only by the mercy and grace of her creator who could do for her what she could not do for herself.

And so I’ll continue to visit her grave, even though I don’t get connection with my daughter that my heart craves.  But I can say in faith, just like the faith that King David had when his baby son died, that babies go to heaven.   I know that’s where Ava is and we will spend eternity together there with our Saviour.

” 22 He [King David] said, “While the child was still alive, I fasted and wept, for I said, ‘Who knows whether the Lord will be gracious to me, that the child may live?’ 23 But now he is dead. Why should I fast? Can I bring him back again? I shall go to him, but he will not return to me.”  2 Sam 12:22-23

Amen.

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Instead of perfection…

A few weeks ago Sarah and I were back at the hospital for another diabetes clinic.  We typically go every three months, but this time it had been closer to 4 1/2 and I was nervous.  To be honest, I’m always nervous at these appointments.   The team takes a look at all of Sarah’s numbers that have been downloaded from her pump, and they look at her A1C – a quick blood test they do that shows the over-all amount percentage of sugar that has attached to her red blood cells – and together this shows the team how well we’ve been managing Sarah’s diabetes.

And although that sounds benign on paper, as I’m sitting in the room waiting for the doctor to come I’m quaking on the inside.  I thinking of all the times that I forgot to give Sarah insulin, or we didn’t count carbs right and how often her numbers were higher than they should have been and then I feel like I’m  waiting for exam results.  Like they are going to come into the room and tell me if I’ve passed or failed, and all I can see in my mind is a big red “F” stamped on Sarah’s medical chart.     Now, in saying all of this I’m doing a disservice to Sarah’s wonderful medical team who has NEVER once treated her diabetes care like this, it’s just me.  It’s a heavy burden I put on myself and I’ve usually got myself so wound up before these visits I often shed some tears.

However on this visit I was so relieved to find that we passed!  hahaha   Sarah’s A1C’s had come down slightly (which is good!) and the doctor was fine with what her numbers had been over-all and I could finally relax.  I thanked the doctor for being so good to us, and always being encouraging rather than judgemental.  He asked me if I had heard his space-ship to the moon story.  I hadn’t, so he told me.  He told me the story about how U.S. President John F. Kennedy wanted NASA to put a man on the moon.  Finally in 1969 they were ready and Apollo 11 started it’s journey into outer-space.  The doctor then asked me how many times during that journey the rocket was actually headed in the right direction towards the moon.  My guess was 75% but he came back and said, “Nope, 5%”.   I was really surprised by that number… wow!  The doctor went on to say that we need to take that perspective with diabetes care.  We are always striving for the moon and those great numbers, but have to realize that it’s a process, that it’s going to constantly need tweaking and small changes here and there, but the most important thing is to keep going.  It’s a journey.    And I liked that.   Perfection is obviously what we are striving for, but the fact that NASA did something amazing without perfection has really made me think about Sarah’s diabetes care in a new light.  It give me a long-view sort of mindset – one that takes some pressure off the here and now, knowing that we probably never will perfect, but there is always tomorrow.

But God clearly wanted to bring this idea into other areas of my life, and one of those is my anger.  My anger and frustration with my kids when they aren’t listening or they argue with each other, or they don’t do what they are supposed to do, and how I can just get mad when life doesn’t go my way.  I get frustrated because in my mind I’m telling myself, ‘It’s not supposed to be like this, why can’t everyone just do what they are supposed to do so we can have the happy life that I want?’

I read this line regarding parenting from Auntie Leila over at Like Mother like Daughter the other day… “The sooner you learn that frustration is part of the process, the happier you will be.  Our worst enemy is thinking that things should be perfect.”   This quote almost knocked me over!  And it struck me that it’s so true!  I was looking at problems completely the wrong way, thinking that they shouldn’t exist at all, instead of realizing it’s just a part of life!

It’s kinda funny because my friend Tania is currently parenting 4 little girls, 3 years of age and under, and we get a kick out of 2 of her children who get frustrated so easily, even when they are trying to accomplish things beyond their skill level.  Like her baby who gets frustrated because she can’t crawl around as fast as her older sisters can move around, and so just puts her  head down and howls.  We laugh because we know it’s part of the process.  We don’t expect a baby to just stand up and walk one day… we know that it takes lots of practice, lots of falls and lots of frustration on their part and we accept that it is part of the process of growing up and learning a new skill.  So why have I decided somewhere along the line that things in my life have to be perfect all the time?  I’m not perfect, why would I expect this of others?   Clearly I need a paradigm shift.

Apparently perfection isn’t always a good thing anyway.  I recently read an article from John Piper entitled  “Parents, you can’t build heaven here”.   He said that too often we try to make heaven for our children in the right here and now.  We try to bring too much perfection in a child’s life – guarding them from too much or trying to give them too much in the name of our love for them, but this actually back-fires because it teaches children that they deserve perfection.  And then when life (as we all know too well) falls very short of the perfection they are used to – these kids don’t know how to persevere and deal with problems.  Instead of helping them,  we’ve actually hindered their growth.

The verse that is used in John Piper’s article is Philippians 3:12, such a great verse….

12 Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. 13 Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, 14 I press on toward the goal for the prize of the upward call of God in Christ Jesus.  Phil 3:12-14

Paul is telling us to keep going because we haven’t obtained perfection.  Yes, it is our goal, but we have to keep forgetting what is behind and straining forward towards our goal.  He doesn’t beat us up for not having obtained it… obtaining it is a future thing to look forward to, through the hard work of living and trying and striving.

I can see that it’s time for me to accept that frustration is a part of my life I can’t escape and so just deal.  And if that frustration causes me to stop and refocus, or learn something new, or teach my children something new, or make changes along the way to my final goal (which in my life is to be more like Christ), then right now I am willing to take frustration instead of perfection – knowing that when perfection finally comes it will have been well worth the fight.

 

Where I was…

Lately I’ve been feeling kinda unsettled.  I think because on one hand I’m happy to be home and looking forward to preparing for Christmas with Jason and the kids.  But on the other side, I’m very aware of where we were last year and how we were still waiting for Birdy with the uncertainty of what was going to be ahead.   And I do feel like I want to reconnect with where I was, maybe just to make sense of it all?    So I decided to go back and read my blog from last year.  And I found this post that I wrote a year ago today… and I ended up encouraging myself… isn’t God good?   What I read was such evidence to me of the grace of God that was holding our hearts then, and is still holding us know.  And the best part… a year later I can say that every single word is true.   Having Ava, losing Ava was such an incredible and rewarding thing that we will forever praise God for bringing her into our lives and for the work He did in our lives through the whole process.

So I decided to repost what I wrote, so here it is.   It was entitled “Ruin my Life“….

Oh these crazy followers of Jesus Christ, and the crazy songs that they choose to sing!

Why would anyone sing a song asking God to ruin their life?  Talk about very scary stuff.    And to be honest when we first started singing this song at church I was a little bothered, thinking that I’m not singing that,  I like my life just how I like it, thank-you!

But then we got pregnant with number 5 – that huge surprise.  And we sang the song again at church on that first Sunday after and I cried.  NOT that I was thinking that God was in the process of ruining my life per-see… but that His plans were clearly not my plans.. here’s what we sang…

Woe to me I am unclean
A sinner found in Your presence
I see you seated on Your throne
Exalted, Your Glory surrounds You

And the plans that I have made, fail to compare, when I see your glory…

Ruin my life  – the plans I have made
Ruin desires for my own selfish gain
Destroy the idols that have taken Your place
‘Till its You alone I live for, 
You alone I live for.

Holy Holy is the Lord Almighty 
Holy is the Lord! 

Holy Holy is the Lord Almighty 
Holy is the Lord!   ( Jeff Johnson)

And so it’s kinda become Jason and my theme song through this whole pregnancy situation if you will.    We do now feel in a way like life as we know it has been ruined, I know whatever the outcome of this pregnancy is, we will have been changed forever.   But the amazing part it, we will have been changed for the better.

God is taking hold of our lives.   And even though I cling and I fight and I cry and occasionally think about how my life would look if none of this happened,  I can see that striping all the external stuff away, letting go of all my plans of how I thought things would turn out,  and just focusing on God and doing my best to be obedient and having faith in Him is so incredibly beautiful and rewarding.

There is an amazing sense of peace that God has given me as my time gets closer (thanks for praying everyone!) and I know that any strength I have has come from him.     And we can know for certain that this is His plan and His alone because He has taken such incredible care of us through the past months,  which brings me so much joy because I can know that I don’t have to worry about one minute of one day going forward, He is going before us and will take care of us.

And in this world where the biggest thing seems to be control…where we feel like we always need to be in control…  just know it’s all a sham.  We have so little control.    But don’t despair,   when God starts to move and plans and lives start to be ruined,  it doesn’t have to be negative, just cling to Him and move with him and it can truly be the best thing that ever happened to you.

Amen.

512 Nights…

Last Saturday I got this text from my friend Tanya, Aleeda’s mom….  “512 nights at Ronald MacDonald and now we are all home!”    It just blew me away that it had been that long that they had lived in Toronto,  and seeing those numbers was a bit shocking.   Our family was only away for 6 months and that felt like forever, so times that by 3 and then you can see how Tanya would say that coming home really isn’t coming back to “normal”… it’s kinda like coming back to a completely new life again.    And even though Tanya and Brian’s journey has been far from easy… far far far from easy… I love seeing how their faith in God has given them incredible strength to face all the challenges and hurdles of having a  baby with hypo-plastic left heart who needed a heart transplant, and how through it all they have stayed sane and stayed positive.

Now the journey is still far from over.  Aleeda is still being fed through her g-tube and is on quite a few meds, so she and her baby sister are going to keep Tanya very busy, but I know that God chose wisely when He gave Aleeda to Tanya and Brian and I hope that someday Tanya finds a way to share her story for everyone.

The girls and  I actually went and saw them today – we are so fortunate that home for them is only 40 minutes from here… hurrah!  Sarah had said that she just wanted to see Aleeda smile and she got her wish…

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Doesn’t Aleeda look amazing?    Sarah also spent alot of time holding the baby like she had been doing it all her life…

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But to be honest, seeing pictures of Sarah holding babies kinda makes Jay and I sad.  There are so many pictures of Sarah holding Ava and we just wish that it was still Ava that she was holding… sigh.

While we are on the topic of Sarah… Jason and I attended a class last week to learn more about using an Insulin pump as a method to control diabetes.  We learned more about how the pump works and they also talked about how we can begin to start the process to get Sarah pumping if that is something we want to do.   Here is a handy dandy illustration of what a pump looks like…

isulin pump

Basically the pump is a little digital device that you wear on your belt, which pumps insulin through tubing that is attached to you.   Having a pump would be great for Sarah because it would allow her to eat what she wants when she wants, just like the rest of us.   But the downside of that is that you are kinda married to the pump in the way that it’s always there… it never leaves your side, literally. 🙂

Right now we manage Sarah by giving her injections of insulin, which is restricting because she has to eat at scheduled times and has to stick to a strict set amount of carbohydrates for each meal – but in between snacks and meals we don’t really have to think about her diabetes.    So I guess it’s one of those things where you have to weigh the pros and cons and figure out what works the best for you and your family.   I’m fairly certain that just because of the flexibility we will be perusing the pump, but that means now we have to figure out which pump to get!   So if anyone has any suggestion for us, we’ll take them!

Other than that, it’s just business as usual around here.  I am pleased to report that with some help from my friend Rachel,  I finally manged to tackle the room in our basement that held a lot of our belonging we had brought home from Toronto.   I thought I couldn’t sort it all because some of the stuff was Ava’s and I was pretty sure it would make me sad.  As it turns out it didn’t make me sad, and I realize now it wasn’t Ava’s stuff that was bothering me, it was just the mess and chaos that was bothering me!   I do feel like I am close to whipping this house back into shape and getting things all organized so that it can be functional for us.  But it’s taken a long time because life is busy here with 4 children plus diabetes.

Today is actually 3 months since Ava died.  Three months already.  And then in a few weeks it would have been Ava’s first birthday…. December 4…. Ava Day. 🙂   We haven’t quite figured out how we want to celebrate it, other than the kids want to decorate our house with birds and probably eat cake.  But I hope that as part of ‘Ava Day’ we can find a way to reach out to other families who are struggling with a baby in the hospital.   We will see what happens and I will keep you posted.

And we just wanted to thank people once again for your continued prayers and support.  Even after three months we still miss Ava like crazy, but are truly thankful to be home and I think Tanya would say the same thing, especially after 512 nights away.

Challenges

I had a bit of an emotional day yesterday.  And no, it wasn’t because of Ava, it was because of Sarah… or I guess because of her diabetes.    Since we’ve been home and the care for Sarah has shifted from Jason to myself, I’ve been going at it for two months now, but it struck me that this is not going away… ever.   And it just seems so huge.

I guess it’s just that some days it’s just so over-whelming.   Like Thursday night when I made dinner and then sat down to figure out the carbohydrate count of the meal… for some reason it just ended being so complicated and I just couldn’t figure it out and dinner was delayed and it was extremely frustrating.   And then there are the days when Sarah doesn’t want to check her blood and flinches when she gets her needles and I just want diabetes to be gone and I just don’t want Sarah to have to deal with it for another day.

I’m so grateful to my friend Kim who was doing some research on Type 1 diabetes on Thursday and sent me some pins and then I went looking for some myself.  So I’m not sure if she found these or I did… but I like ’em…

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And this one, the definition of bravery….

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And of course this one…

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Hahaha.    But once again God is faithful and He gives us the peace and the grace to deal all the ups and downs of diabetes.   Through the times when Sarah’s sugars are out of wack and we don’t know why, or when we think about the upcoming seasons of candy and treats and having to find a way to make it all work for her, without making her feel stigmatized or left-out, and without making her resent her siblings or them resent her.  Sigh.   Oh the challenges life throws our way.

And speaking about challenges, please pray for Aleeda and her mom Tanya.  Aleeda is our little friend from Sick Kids who received her new heart at the end of July, but is still in the hospital dealing with some feeding issues.  Before her heart transplant she was doing a combination of oral feeding and being topped up through her ng tube at night.  But now the doctors have decided that she needs a g-tube, a surgically placed feeding tube that will go directly into her stomach.   I’m excited because I actually have a plan to go to Toronto on Monday to spend the day with Tanya and Aleeda and our other friends at Sick kids, so I would really appreciate your prayers just to ensure my health stays good between now and then so I don’t carry any unwanted bugs to Aleeda.

Please also pray for little Leo, another one of our cardiac friends who is having major surgery done at Sick Kids on Monday.  We are so grateful he will be in good hands!

I’m so thankful that I serve a great God who knows all about challenges,  and has promised that He will give me everything I need.   That why I love this verse,

2 Peter 1:3 His divine power has granted to us all things that pertain to life and godliness, through the knowledge of him who called us to his own glory and excellence,

I can just rest in His promises.  Praise God.

Amen.

Flown away

Our sweet little Birdy has flown to Jesus. She died peacefully in our arms tonight and is finally free from all the pain and suffering that was hers.

Our hearts are hurting and rejoicing at the same time and through all of this we feel so blessed for every minute we had with Ava.

I’ll share her verse one more time…

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

Hard to hear…

This morning when rounds came they were still being led by doctor who the head of the heart transplant program, and she knows her stuff.   She was the one who decided earlier this week that Ava should get the heavier diuretics twice a week – but since Ava’s kidney’s aren’t responding that well anymore, she now needs to receive diuretics every other day.   Anyway…

While they were talking on rounds, they decided that since it’s clear that Ava is not doing well,  they are going to try to start her on another heart drug tomorrow – Dobutamine.   It’s like Milrinone,  and if it works, the dr said we might be able to buy Ava another 4-6 weeks waiting time for a heart.    This news kinda broke my heart.     Jason and I know Ava isn’t doing well, we know her little heart is just getting worse and everyday and I can see the effect of that… but hearing an actually time-line was hard.

And it doesn’t mean the doctor knows for sure that’s all the time she has left,  and we understand that.  But I think they are just looking at Ava’s downward trend even in the past few weeks, and since it has been going downhill pretty rapidly, I think it’s fair for them to assume that at some point you have to reach the bottom.

If God is going to send us a new heart, we need it to come fast.   But in saying that, our doctor also told me today that if Ava does get a new heart now, it will likely be a slow recovery for her as her health has deteriorated so much.     Even today she is still having blood in her diaper, but they have decided not to treat it, or even find out what the problem is, as the cure would probably be harder on her than the disease.

So we are just asking for your prayers once again as we wait and trust for God’s perfect plan.

My friend Christa posted this quote on Pinterest, and so I wrote it out and pinned this up at the hospital today in Ava’s room…

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So even though the news was hard to hear today – we know it’s still not the end of the story for Ava.

God still has a plan and He is faithful and sure.

A Verse and a Video

Ava had an OK day today, I think her teeth were bugging her and that made her a little cranky, and that tired her out so she slept most of the day.   But just before dinner she woke up and was happy and smiling for me.  And then tonight Jason and Will went up to see her and got more smiles again.    We are so grateful that even though CPAP is her life now, she can still give and receive love and bring us joy.

I just wanted to share a verse that I’ve been clinging to lately that another cardiac mom emailed me….

John 9:1-3 (ESV)

Jesus Heals a Man Born Blind

 As he passed by, he saw a man blind from birth.
 And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

It reminds me again that God has a purpose for Ava and He planned for her to be exactly how she is.  I pray that her story would be one that does glorify God and we truly pray that the works of God may be displayed in her…  and wouldn’t it be amazing the work He displayed was bringing her a new heart?   Oh God, please bring Ava a new heart!

And just in case you have a minute, I took a little video clip of Ava last night.  It’s nothing super or fantastic,  it was just Ava happy and playing with me talking to her.  She looks pretty good, but because she’s not on CPAP she is working harder to breathe and she was only able to play for a few minute before she was all tired out.

Oh – and I guess I’m so used to Ava I don’t see all her extra hardware… but I wanted to assure you that nothing on her, the chest leads or the ng tube going in her nose, or the picc line in her arm hurt her,  now they just feel like part of her and she is very used to them. 🙂

Enjoy!

You are loved

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By Christa

Philippians 4:6-7 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus

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Be Still….

Be still, and know that I am God.  Psalm 46:10.

If you’ve read previous posts, you will know that our unborn baby has a critical heart condition, critical aortic stenosis, and  that we were able to go to Toronto where they did a procedure on her heart Aug 16th to open her aortic valve which was had been so small her heart couldn’t pump blood through it and we were rejoicing.

But things have taken a turn.   We went back to Toronto this past Friday – the 24th so see the cardiologist for a check-up and what he saw after the technician took 79 pictures of my baby’s heart had him disappointed.  Her valve is open, but crazily enough, it’s now too wide open.  Her poor weak and swollen left ventricle doesn’t have the strength to push the blood out to the rest of her body without the help of the valve and so blood is coming back in – ‘regurgitating’ they call it back into this left ventricle.  And this means it hasn’t been able to heal at all.   Thankfully they couldn’t see more damage then they saw before, but certainly didn’t see any improvement in it.    So we are sad.

But all is not lost!  An open aortic valve is still far better than a closed one and if that valve could shrink just a little to help stem the flow of back-ward blood,  her left ventricle may still have a chance at healing and as we all agreed, the procedure had just been a week before and we just need to give it more time.  More time and lots more prayer.

And this is where faith kicks in.  Faith in God when things just don’t seem to be right, in fact in human terms they seem to be going wrong.   Sure it’s easy to rejoice and trust in Him when things look promising and we are hopeful things will turn out the way we want them too,  but how about when faced with the possibility that things might turn out exact opposite of what we want?   What if this baby still will lose the left side of her heart and have to have a palliation of her heart done where they turn the right side of her heart into a duo-purpose pumping machine and I have to spend weeks with her in the hospital, perhaps months away from my other kids and miss Christmas and New Years?  Honestly that thought breaks my heart.

However, again, even though I’m sad, I still I have hope.  I know God can still heal her, and even if that takes surgery and months of healing, I’m still completely trusting Him.  I’m not broken, maybe somewhat bruised, but definitely not abandoned.  And the Bible is full of verses to comfort me, starting with being still and just knowing that God is God.   I think John Piper once said that the things God does may be confusing, but God himself is Not confusing,  I love it because it’s true.

And as Jason pointed out to me, maybe His whole plan here is not to heal her, it may be to do some greater work which we can’t see,  which would be amazing as well.  God doesn’t give us all the answers, nor does He let us see the whole picture, but He does offer peace and hope and strength.

Here is the passage I’m clinging to right now…  Isaiah 40 27-31…

Why do you say, O Jacob,
and speak, O Israel,
“My way is hidden from the Lord,
and my right is disregarded by my God”?
28 Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
31 but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.  (emphasis mine)

Even as I read that I can smile (even with a few tears in my eyes).  I can’t question God,  He hasn’t forgotten me, and if I wait on Him,  He will renew my strength.   In fact if you really want me to cry quote a verse from earlier in the chapter, verse 11…

He will tend his flock like a shepherd;
he will gather the lambs in his arms;
he will carry them in his bosom,
and gently lead those that are with young.

Wow, that can just make me cry like that! 🙂   He knows I’m extra vulnerable right now (and let’s be honest, more emotional) but praise the Lord,  He is gently leading me and what ever happens with our precious baby girl, God will never forsake us.  Amen.

I’ll keep you posted.