Birthday Countdown--2 Days

5.  If I’m Not Actively Placing My Hope In The Lord, I Start Hoping In Something Else

I hope you haven’t been reading these posts thinking, “Wow. She has it all together.” Let me assure you. I do NOT! Any good things you see are purely evidence of God’s faithful work, not my own. And let me also just reiterate that God has begun to teach me so many wonderful things but while I am still living in this fallen world, I will never perfectly walk in what He has taught me. I am still the greatest of sinners in need of constant grace!
 
The day after the neonatologists gave Gabe the diagnosis of LQT they connected us to a pediatric cardiologist via conference call from the NICU.  The kind doctor on the other end was informative, humble, encouraging, and remarkably normal.  Over the next couple of days we compiled giant lists of questions we wanted to ask him about this condition, about what the future would like for our son, about the odds he faces, etc.  He scheduled an appointment for us to come to the children's hospital he works at after Gabe's discharge.

I thoroughly prepared for that appointment.  When we got there, we met with the kind cardiologist (Dr. N) who was as humble and down-to-earth in person as he was on the phone.  He just kept saying he wanted Gabe to live a normal, healthy life.  Dr. N also informed us that babies can have a prolonged QT interval when they are born without actually having LQT due to the way the heart continues to develop after birth.  However, because of the episode in the hospital with Gabe and the fact that I have a family history of LQT, they would treat Gabe as though he had the disease no matter what.  And if after a year or 2 his QT interval was normal, he had not shown any symptoms of the disease, and genetic testing indicated no mutations they would say, "I'm sorry we over medicated your child.  He does not have Long QT." 

 

After our first meeting that day, he walked us down the hall where we got to meet with Gabe's pediatric electrophysiologist (Dr. O).  Again, this doctor was so kind, so humble, so careful and gentle, so thorough and willing to answer the pages of questions we had come up with.  I remember him looking at our notebook and seeing a question we hadn't asked and insisting that we ask.  They met with us for over 2 hours that day and asked us to come back in 6 weeks. 

During those weeks, I remember living in the good of the things God had taught me, delighting in the peace He had given me and the way He'd transformed my heart to trust Him with my children's lives.  Ladies from church made notecards of Bible verses for me that I plastered all over my house where I would see them constantly.  I was constantly reminding myself of those truths from God's word and placing my hope in my good and faithful God. 

6 weeks came and went without a visible hiccup and ended with a 24 hour Holter monitor to record every detail of Gabe's heart.  I again prepared for Gabe's appointment, but this time it was not by writing down lists of questions.  This time I prepared by reminding myself that my hope is in God no matter what.  I spent time reading verses, singing songs, and Ben and I prayed, "God, will you please help us trust you no matter what they tell us at the next appointment."  We saw Dr. N and he gave us the good news that the monitor showed no signs for fainting or arrhythmeas and that he was responding well to the medicine.  They wanted us to add another medicine at this point (their standard procedure for treating infants with LQT), do another Holter, and come back in a month.  I came away from the appointment encouraged:  1) I knew my heart was trusting the Lord and 2) we had been given a favorable report! 

A month later we arrived at the children's hospital for another appointment following the Holter.  But something was different this time.  I was antsy, unsettled, and a bit nervous.  I couldn't wait to hear what the doctor said.  It became painstakingly obvious that I had done an ill job of preparing for this appointment.  It wasn't as though I had forgotten God's goodness that month or that I suddenly thought Him unfaithful.  Dr. N came in and the appointment went well again but he didn't use words like "perfect" as he had in the last appointment.  He was a bit unsatisfied with Gabe's resting heartrate and wanted it lower requiring an increase in the amount of medicine we were giving him.  I was so sad to hear this. 

Psalm 42:11

Why are you cast down, O my soul,

and why are you in turmoil within me?

Hope in God; for I shall again praise him,

my salvation and my God.

But God so kindly and quickly showed me the real problem in all of this.  You see, at the first and 2nd appointments I was actively, consciously making a choice to hope in God.  But by the third appointment, I had begun to think that I had arrived at hoping in God and would forevermore do so.  I expected that since God had worked in me so much that I would just walk in complete belief, perfect faith, and total dependence on Him without any effort.  Ha! 

And isn't it just so kind of God to show me that early in Gabe's life?  God is pleased when I place my hope in Him.   And if I'm not putting my hope in God, I start to hope in something else.  It's just like the hymn says, "Prone to wander, Lord, I feel it, prone to leave the God I love."

For example:
If I am not actively putting my hope in God, I begin to hope in good doctor's reports.
If I am not actively putting my hope in God, I start to believe in the medicine.  I start to think that it can keep him alive and he won't need a defibrillator.
If I'm not actively putting my hope in God, I start to hope that Gabe will just be one of those kids the doctors mentioned who doesn't really have LQT. 
If I am not actively putting my hope in God, I can place hope in my practices.  I can think that I have to do things a certain way or my children will be ruined forever.
If I'm not actively putting my hope in God, I can start to hope in my children meeting developmental milestones at the right time.
If I am not actively putting my hope in God, I begin thinking I can avoid any situations that would cause fainting or sudden death for Gabe and that I can prevent any bad things.
If I am not actively putting my hope in God, I start to hope in myself.
If I am not actively putting my hope in God, I begin to think that God has already taken my sisters from me and would never take my child.  I start to hope that I've met the quota.
If I am not actively putting my hope in God, I start to think that I'm a necessary ingredient in the salvation of my kiddos.  I hope that I will do enough good, say enough right things, and not do too many bad things.

But unless my hope is in God, it is misplaced!  He is the only one worthy of it, He is the only faithful, all sufficient, good God.  Why would I want to hope in anyone or anything else? 

Psalm 146:5
Blessed is he whose help is the God of Jacob,

whose hope is in the Lord his God,

I have to purposefully and actively place my hope in God or I wander, I drift.  But by His good grace He has used Gabe to show me that with His help I can work to keep my hope stayed on Him, because I trust in Him.  Do we hope that God heals Gabe someday from LQT?  OF COURSE!  And we believe that He could do that at any moment.  Do we pray that God would give Gabe a long life?  MOST DEFINITELY!   But our hope is not in healing, a long life, or anything else.  By His grace our hope is in God!

The first two pictures taken by Erin at The Locket.