Update

On Thursday Joe and I were able to meet the surgeon who will be operating on Stephen's heart.  He is amazing.  He spent an hour talking with us about all sorts of things, and though we were once again reminded of the gravity of the situation, we both left with smiles on our faces.  We know God is using this...and in the most unexpected ways.  During the consultation the Dr. asked Joe what he did for a living.  When he answered that he was a pastor that opened the door for a slew of questions regarding our church, denominations, morality, rituals, etc.   At one point he said, "I am sure you want to talk about your baby but what is your view on the Atonement?"  AWESOME.  We felt very relaxed and very grateful that our son will be in his care. 

We also learned a ton.  We learned more about the heart and how it is supposed to function and exactly what Stephen's heart is currently set up to do.   The surgeon reiterated that he has a very complex heart condition and gave us a better understanding of just how rare it is.  About one percent of all children born each year in the United States have a congenital heart defect.  It can be something very simple that will go away without interventions, or it can be something very severe and life threatening that requires surgical intervention.  As a result only .2 to .3 percent of all children born with a congenital heart defect require surgery.  Stephen's heart condition falls into a "single ventricle" category in which his specific anatomy is one of the most complex scenarios possible…which just makes him extra special =0)  

As of right now we will be moving down into a hotel on April 12th.  I am scheduled to be induced at midnight on April 16th so that Stephen will be born sometime during the morning on the 17th.  From there begins many unknowns.  Once he is taken over to Rady's Children's Hospital they will run various tests and ultrasounds on him.  Based on these tests and the doctor’s schedule a date for his first surgery will be set.  If all is well with him it will fall sometime between days 3-10 of his life.  There are 2 main options for surgery.  If he is healthy and all of his organs are functioning properly he will undergo the more invasive reconstructive surgery first.   They perform about 15 of these surgeries per year.  It will last about 6 hours and has a survival rate of about 80%.   When I asked the surgeon if there was any rhyme or reason to the 20% that don't make it he said a lot of it seems to ride on the first night after the procedure.  If he makes it out of the surgery he needs a good first night.  He still has to do well the next day, and of course the rest of his stay, but he believes the first night says a lot.  We will make sure to let everyone know when his surgery is scheduled so we can all send up extra prayers through those crucial hours.  

Another large unknown is recovery time and length of stay in the hospital.  The doctor said a best-case scenario is that he would be in the hospital for 3 or 4 weeks after the surgery.  If we run into complications along the way...who knows.  There are so many possible variables and factors that truly we will have to take it one day at a time.

 We have been asked how people can be praying for us so we put together a little list

• Miraculous healing.   
• A safe and “uneventful” delivery and a quick recovery for me so I can visit Stephen since we will be in different hospitals.
• Wisdom for the doctors and surgeon.  An amazing team of medical professionals will care of Stephen.  Please pray for them, as they will be making some major decisions in his first hour/week of life.
• For Life.  Please pray for his surgery and recovery and that he will make it through with no other complications or side effects.
• Our children.  This will be a scary time for us all but will especially be confusing for Michael, Elizabeth and Audrey.  Please pray for wisdom for Joe and I in knowing how to best care for them and that God would give their little hearts peace and comfort through the craziness that will be surrounding them.
• Joe and I.  That we will be given the daily strength and peace we will need to make it through.
• That God will use this for his divine purpose and that we would allow him to work within us.

Once again we thank you for prayers.   They mean more than you will ever know.

In Him,

Kim

A Mother's Heart

When I found out about Stephen I was more than devastated...I was heartbroken.  The pain was very real.  I physically ached for my son and felt like I had nothing left in me.  I felt helpless.  I kept thinking about all he would one day have to endure and how as his mother I could do nothing to take it away from him.   I felt hopeless.  I was basically being told that I would outlive him and that one day I would have to bury my child.  That killed me.  I know we don’t know how long any of us have here, and there is no guarantee for a tomorrow, but this brought that reality to life.  I felt guilty.  Was this my fault?  Was it something I did or didn’t do?  Was God trying to teach me something?  Was I not listening?  Boy does the devil try to get in your head.   I quickly learned (with the help of my brother) why we must hold each thought captive and to discard any of those thoughts that come my way.  God didn’t allow this out of spite or because I wasn’t being the best wife/mother, etc.  I may never really know “why” Stephen’s heart didn’t form properly, but I do know that he promises good can come from our sufferings and Joe and I have already seen sweet glimpses.  

I have a stronger marriage.  Joe and I have clung to each other and God through this.  The way he has held me up and supported me made me fall deeper in love with him.  I always knew he was amazing...but seriously...he rocks.  He provides me such strength and comfort.  The night we found out I was a mess.  I went to bed at 7 and he just held me and did crosswords with me until I couldn’t keep my eyes open.  Every time I wept he pulled me in closer.  I am so thankful to have him and it is my prayer that we come out of this closer than ever.

I am a better mother.  It hit me how much of our anger is a result of our own sin.  I always hated how easily frustrated I could get with my kids.  I could go from relatively normal to boiling in like 2 seconds.  This news changed that.  For a good month I couldn’t yell.  Nothing could upset me enough to even raise my voice.  It wasn’t important.  My perspective on even their behavior had changed.  It wouldn’t upset me.  I still didn’t approve of their actions, but I would calmly deal with there behavior issues and truly discipline out of love not frustration.  It was strange and nice.  I wish I could say I haven’t yelled since...but I have.  The point is I have a better perspective on what is important in life.   My kids are awesome and bring me so much joy.  I choose to give them more of my time, not my computer, chores, TV, etc.  Our time is precious and I want to make the most of it.  I pray that I will not take them for granted and that I will always remember just how blessed I am.  

I have a deeper understanding of God.  When I felt like I was the only one who knew this pain I was humbled at the thought that God sent Christ to go before us all.  He watched his son be born, suffer, and die.  There is nothing that Stephen, or any of us, will in a sense go through that Christ our Savior didn’t.   He was born, suffered and died...but most importantly he was resurrected. That is where I find my hope.  As Joe has shared, our sufferings are not pointless but can produce hope...hope in what is to come.  I pray that I can stay focussed on the hope and allow God's peace to rule in me.  

So this is now our story.  It is not one I would choose for myself and would gladly let it be taken off my plate.  People have told me this will make me stronger...I don’t doubt it.  But I would rather be weak and have my baby in my arms then enter this unknown.   Nevertheless we have a new normal.  I pray that I continue to walk in the grace that God gives me.  I am grateful for his mercies that are new every morning...a phrase that can sound so cliche, but has become so real.  God has given me what I need to get through today...tomorrow’s worries just have to wait.

And lastly I have been in awe of the body of Christ.  It is so much more powerful and real than I ever realized.  I have been touched by how loved and supported we are.  People have such genuine concern for us and our son...it is a truly beautiful thing.  Thank you again for praying for Stephen.  Knowing how many people are lifting him up to God has brought us great peace.   We know we don’t walk through this alone, but have a great support of believers, family, and God himself who will see us through whatever the future may hold. When Joe and I were married we had this verse inscribed on our rings... 

“For this God is our God for ever and ever; he will be our guide even to the end”.  

Psalm 48:14

God has guided us thus far...and he will continue to do so.

~Kim

Joe's Thoughts On Pain & Suffering

The first few days after learning about Stephen’s condition were very rough and I spent many hours in prayer.  As a pastor for the last seven years I knew all the right answers that the Bible gives about pain and suffering.  Sin has disrupted God’s plan for humans and creation.  God is not to be blamed as the author of pain and suffering.  God even sent His Son to undue the power of sin (this will be fully accomplished at Christ’s return when all pain and suffering are finally removed). 

            Knowing these truths are much different than actually being able to live them.   I would never have chosen this for my son and I struggled with guilt, as I didn’t want to accept this from God.  My first thought after learning about Stephen wasn’t “God’s will be done”, but was anger.  Who wants to accept the fact my son might not live past the first week of his life.  I am glad to know that my God can handle angry conversations and people questioning His character (just read through Psalms and you will see this many times). 

            If I had let my anger get the best of me I would have turned into a person of despair, either rejecting God as loving or believing God is distant and does not really care about me.  I am thankful that I did not end there as it has so tragically for others.  As I poured over the Bible and the familiar passages I have shared with others who have faced hard times God graciously started to help me understand pain and suffering a little better.

There are two very telling passages that stuck out to me from the book of Romans; the first is Romans 5:3-5, “ Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” 

How appropriate that the verse talks about suffering and allows it to be a beneficial thing.  Suffering gives one perseverance and then character and then leads one to hope.  Hope does not disappoint us because of the Holy Spirit that we as Christians possess.  Sufferings, which we all will face in different levels, are going to lead to two things: hope or despair.

Without sufferings it will be very difficult to see the hope of the future because we as humans get to caught up in this temporal world.  This leads to the next verses that has become so vital for me, Romans 8:18, 22-25, “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us… 22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.”

Our present sufferings cannot compare with the future glory that Christians will be a part of.  This is very difficult to see in the moment.  Romans 8 is so powerful.  We as humans know something is wrong and that is why sickness and death is something we dislike and we groan under this pain.  We were not created to die or face suffering but sin has brought both of these into the world.  The hope of Christians is found in the fact that we are adopted as God’s children and this adoption will be completed with the redemption of our bodies (the resurrection).  How amazing that one-day the Christian’s body will be made whole, perfect and not able to decay and will be in the perfect presence of God for all eternity (Look at Revelation 21:1-7 for a clear picture of this).  This is the hope of anyone who is a Christian who dies, whether a week old or at a 100.

The last major thing that has given me hope through this whole process is the fact that Jesus died and suffered on the cross.  His suffering produced hope in at least two ways.  First, that suffering does not have to be pointless and secondly, hope in the salvation of sins.  Our sufferings, which are not pointless in Christ, can have meaning and hope because of Christ’s suffering.  The worst act of humans was to kill their creator, but this horrible act brought the greatest hope for humans and creation.  Sufferings are tragic, as the result of sin, but can bring hope as they draw us to the fact that all things will be put right in the future and that our bodies will be perfect at the resurrection.

Never in my life have I prayed more or learned more about God.  So at least right now I can see how God can use the most tragic events in one’s life to draw them closer to Him.  Suffering is not pointless but reminds us of how fragile this life is and how we need to put our hope in Christ.  Suffering shows us not to get caught up in this world but to see the bigger picture, to point us to Christ as Savior and our continually need for God.  My prayer is that Stephen’s condition is used by God and for God to make an impact for the glory of His name.

Stephen Joseph

On December 20th our lives were forever changed when we found out that our unborn son has a rare and very complex congenital heart defect.  Stephen’s heart did not form the way it was designed to and without multiple surgeries he cannot survive outside of the womb.  He is due April 24th but the doctors are planning to induce labor right at 39 weeks, and possibly move our family down to the Ronalds McDonald house the week before, to ensure we are where we need to be.  He will be born at Sharp Mary Birch in San Diego and then immediately taken across the way to Rady’s Children’s Hospital.  

He has some major challenges ahead of him as he will require three major surgeries, one within the first week of life.  The surgeries themselves bring inherent risk of death with about 70-75% of babies surviving all three surgeries.  The surgeries cannot fix the problem but will only prolong his life (how long the doctors do not know, but many patients face major complications in their late teens to early twenties). 

We have wrestled through many emotions over the past few months.  The saying “God never gives you more than you can handle” took on a whole new meaning.  When we hit the lowest point in our lives we realized there was nothing we could do.  God alone can see us through this trial and even gives us peace and hope along the way.  We know he is in control and loves Stephen more than our human hearts are capable of.  We know our suffering and Stephen’s suffering can have hope because of Christ’s suffering on the cross.  We believe God can heal his heart in an instant... and that is our greatest prayer. We also know that if he doesn’t we he will ultimately use this for His glory.   

Stephen already has so many people praying for him and for that we are very grateful.  We created this blog to help keep you updated on our lives and to ask for continual prayer.

We will be posting more about our story and what we have learned but for now please continue to pray for a miraculous healing.  

With Much Love and Hope,

Joe & Kim