Category Archives: HLHS

Comfort (Part Two)

All I could do was cry.  Cry for Charlie.  Cry for the Baers.  Cry for every person on this planet who has lost someone.  It was quite a sight – some red-headed chick bawling her eyes out in front of a Buffalo Wild Wings.  “Why, Lord?  Why does there have to be so much hurt?  Why did Charlie leave so soon?  You could have healed him.”  Quickly the sorrow turned to anger.  It was surreal in some ways, like experiencing the full span of the grieving process in a few minutes.  How I ached for my friends.

Within minutes of Josh’s call, I was on the phone with my mom and in the hugging arms of my dear friend, Cathy (she’s practically my big sister…love her to pieces!)  Both these godly women gave me such comfort, reminding me of what I already knew but emotions blocked at the moment.  God is good.  He is always good.  He loves the Baers and my family so much.  He loves little Charlie just as he loves every child He creates.  And because of what we went through with our son, we could now come alongside this family as they begin the grieving journey.  “Comfort others with the comfort you yourself have received.” Once again, amidst the tears and sorrow, I experienced the promised comfort of the Holy Spirit, that “peace that surpasses all understanding.” (Phil.4.7)

As the days have passed, I’ve pondered over and again the homecoming of these two sweet boys and heartache in general.  At its core, it is simply part of the human experience as we are mortal beings living in a fallen world.  Loss is part of life.  While it comes in various forms at varying seasons, loss is loss.  It hurts.  It changes you, whether for the better or for worse.

During our drive back from Myrtle Beach for church on Sunday, my mind was racing with these thoughts, asking God to make further sense of it all for me.  We pulled up to Journey right on time.  The service was AMAZING!  Pastor Jimmy concluded his series on spiritual warfare, Supernatural.  Wow!  The message was so equipping, so saturated in Scripture.  And the worship, well, there are no words.  Through the morning, Jimmy kept referencing passages from 2 Corinthians.  I’d been trying to figure out what to study next in the Word and felt that 2 Corinthians was calling me.  Monday morning came and as I opened my Bible to begin studying that day, I could not help but smile.  Just three verses in, God spoke right to my heart:

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.” (2 Cor.1.3-4)

God’s love is so beautiful, His timing always perfect.  In that moment, He seemed to make it all so much clearer for me and put to words what He had already been stirring in my heart.  Suffering is a thing of life – a horrible, tragic thing.  But within suffering are hidden treasures to be found.  By God’s grace and power, He has opened my eyes to see the beautiful things that have come from our journey and loss of Isaac.  Had we not walked that road, we would not understand God’s love and peace as we do now.  We would not appreciate Eliana as profoundly as we do each day.  Without Him by our side, we could never imagine such deep and complete healing to be possible.  Yes, we still miss our son terribly.  But our hearts have healed and in remembering that bittersweet season, the sweetness outshines the bitter.  To God be the glory for it!  Had we not spent those 130+ days in the hospital, we would not be able to empathize with other families in that same situation.  I would not even have the opportunity to be part of a Parent Advisory Board at a hospital, let alone make a difference on it.  And had we not been parents of a HLHS baby, the Baers would have gone through the past few months without personally knowing another family who knew exactly what they were going through.  I’ll never forget Josh’s words, “I know we didn’t call much, but just knowing you all were there meant the world to us.”

Suffering is so much more than loss.  It is a beautiful opportunity.  It holds treasures to be found and in Christ, we can discover them.  We serve the Father of compassion, the God of ALL comfort.  He comforted me in all my troubles and because of Him, I now can comfort others in any trouble with the same comfort that I received.  In truth, He has given me a gift.  He has turned my mourning into dancing, taken the ashes of my loss and made them something beautiful.  Does He desire we suffer?  Absolutely not!  But as a wise woman once said, “God is faithful to redeem what He allows.”  What could have been my undoing has become a gift that I can give to others.  It does not take the pain away nor negate the weight of our loss, but it redeems it.  To God be all the glory for the redeeming work He has done.

Please join me in continuing to pray for the Baer family.  The road ahead is long and marked with grief.  It will be hard.  It will sneak up on them at times, as it still does for my family.  But what joy to know that God holds their every moment, captures each of their tears (Psalm 56.8).  And one day, He will wipe away every tear from our eyes.  He is the God of all comfort, the Father of mercies, Lord over all.  That, my friends, is comfort.

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea.  I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband.  And I heard a loud voice from the throne saying, “Now the dwelling of God is with men, and He will live with them. They will be His people, and God Himself will be with them and be their God.  He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”  He who was seated on the throne said, “I am making everything new!” Then He said, “Write this down, for these words are trustworthy and true.” He said to me: “It is done. I am the Alpha and the Omega, the Beginning and the End. To him who is thirsty I will give to drink without cost from the spring of the water of life.  He who overcomes will inherit all this, and I will be his God and he will be my son.”  (Revelation 21.1-7)

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Filed under Blogging, Friends, HLHS, Journey Church, Struggles, Thoughts

Comfort (Part One)

Lately, I find myself at a loss for words.  Even now in typing this, my thoughts seem to collect for a moment and flit away the next.  They’ve been churning in my mind for a week now.  Hopefully they will all come out clearly…that or you’ll at least be amused at my scatterbrainedness. (is that a word?)  Buckle up.  Its a longer one.  Here’s the first part of “Comfort”.

It all goes back to one week ago when I was preparing to speak on a parent panel at UNC.  They were hosting at two-day conference by the Institute for Family-Centered Care (IFCC).  As part of this panel, I was privileged to speak to medical staff and case workers at UNC about my experiences as the parent of a critically ill child, reflect on what was positive in our experiences on the PICU, and what could have been improved upon.  I’ve shared our journey many times before and at much greater length in different situations, but for some reason this time struck me differently.  Perhaps it was sharing it with actual PICU staff.  Perhaps it was speaking those words within the same hospital that cared for our son.  Perhaps it was hormones.  Whatever the reason, there was something about that morning that brought so much more detail back to memory of our time with Isaac at UNC.  It left the memory fresh in my mind and strong on my heart.  (Thank You, Lord, for that precious little boy!)

Then Thursday came.  Around 10 o’clock that night, I was out to dinner with some great girlfriends in Myrtle Beach, SC.  We were laughing, sharing stories, and applauding Ailene who had preached a strong word on Joshua earlier in the evening at Barefoot Church’s Ladies Night Out. (seriously…if you haven’t gotten a copy of her study yet – get to it!)  Just as we ordered our late-night dinner, my phone rang.  It was my friend, Josh Baer.  “Hey Josh!  How’s it going?”
His words caught me by surprise and knocked the air from my lungs with the force of a semi.

“Um…Charlie didn’t make it.”

Everything stopped.  In an instant, grief washed over me for my friend as all the emotions of Isaac’s homecoming flooded back.  They were so fresh from speaking on the panel just the day before.  No!  NO!  Charlie was supposed to make it!  He was supposed to have the better outcome with HLHS.  The cocktail of emotions was choking.  Grief, sorrow, confusion, anger.  Even though I knew this was a chance for Charlie simply because of his diagnosis, I had hoped and prayed dearly that it would not be his fate.  Certainly not so soon.

In moments, another emotion swept in to join the mix: guilt.  Why did we get so much more time with our son than our friends?  Why were we able to take our baby home but they weren’t?  In a moment, I was reminded of the frailty of life and how fortunate we were for every day Isaac was with us.  I still don’t understand the why, but rest in knowing:

“For You created my inmost being; You knit me together in my mother’s womb.  I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.  My frame was not hidden from You when I was made in the secret place.  When I was woven together in the depths of the earth, Your eyes saw my unformed body.  All the days ordained for me were written in Your book before one of them came to be.” (Psalm 139.13-16)

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Filed under Blogging, Chapel Hill, Friends, HLHS, Struggles, Thoughts

In Remembrance

Sweet Charlie Baer died tonight.  This brave little boy fought hard all 25 days that he was here on earth.  Thankfully, he was surrounded by his family during the final moments of this life.  Please please keep Josh, Marina, Noah and their families in your prayers as they begin this new chapter.  Words cannot express how my heart aches for them.  Good night, sweet Charlie Baer.  You will never be forgotten.

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Filed under Friends, HLHS

Charlie Baer

Several months back, I received an email from an old friend from high school, Josh Baer.  He & his wife, Marina, were expecting twins – Noah and Charlie.  Everything with the pregnancy was going smoothly until they got some shocking news: Charlie had HLHS (the same congenital heart defect that Isaac was born with).  Its news that rocks you to the core and shakes your whole perspective of the future for your little one.

On April 26, Charles Matthew and Noah Raymond arrived safe and sound.  They are adorable little boys!

Thankfully, no other congenital problems have been discovered with Charlie.  He underwent his first open-heart surgery at 3 days old and is currently on ECMO to aid in his recovery.  Please join me in praying for Charlie and his family.  Their journey hits close to home for us.  We know from experience the profound importance of prayer and encouragement in this.  Please join us in passing along that same support to the Baers.  Not only are Josh & Marina diligently caring for Charlie, but caring for sweet Noah as well at home.  They truly are a wonderful family.  You can follow their story at The Baer Bunch blog.

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Filed under Friends, HLHS