Showing posts from May, 2014

One week without Simon

It has been one week since we said goodbye to our sweet Simon.  He’s been gone almost as long as he was breathing on earth.  However, Adam and I met Simon in October.  His life was much longer than a week.  We actually got to spend exactly 250 days with Simon (8 months and 8 days).   Adam’s parents own a cabin in the Ozark area and we are thankful that we have this location to escape to and reflect on life, Simon’s life and how life will be as we continue to take it one step at a time.  While at the cabin, we have been compiling photos and videos of Simon for his memorial.  It’s wonderful to look at image after image of our little boy.  I have uttered the phrase, “he’s so cute!” about a million times.  I said that a lot when he was in my arms too.  Modern technology is a real blessing – what did we do before the iPhone?!  We have thousands of photos of Simon and many videos as well that will forever help us keep his memory fresh in our minds.  Although, I will never forget his cry,

On inspiration

We have read the loving words of so many people who have expressed that they grieve and lament the loss of our son with us.  We are so grateful for your words.  While sweet words do provide comfort, they also keep the grief fresh.  But the grief may never leave, anyway, so that’s OK.  We will lament the loss of Simon for the rest of our lives on earth.  In Nicholas Wolterstorff’s book, “Lament For A Son,” he says about his son Eric who died, “If he was worth loving, he is worth grieving over.  Grief is existential testimony to the worth of the one loved.  That worth abides.” One word that comes up quite often in peoples’ messages to us is “inspiration.”  The general theme is that we, or our story, has been inspirational.  There is a lot of power in that word.  But the power of inspiration is only manifested if you are inspired to do something.  You can’t be “inspired” to stay the same.  You can’t be inspired to go back to yawning, stretching, plopping down on your couch and flipping

Simon's Eyes

7 days and 22 minutes.  That’s not enough time!  But wasn’t it?  How much did Simon accomplish in just 7 days and 22 minutes?  How many lives were touched?  How much joy did he bring to faces?  How much hope swelled in hearts of those who were feeling hopeless?  How many tears were shed in both joy and in grief? We make so many excuses for ourselves with the lack of time we have.  More than I care to admit, I shirk certain responsibilities as a husband, a father and an employee because, “I’m too busy,” or, “I ran out of time.”  If days were able to be stretched to 27 hours long instead of 24, I’m certain I’d have the same excuses as to why I didn’t get things done... despite the fact that I was just given exactly what I complained about not having enough of: more time! We speak of time like it is a God.  Time dictates when we get up in the morning, how long we have to exercise, when we make dinner reservations, if we read that book that is collecting dust on the night stand, and

Hold and take Simon home, dear Savior

Today will be a sad day, and many more difficult days will follow.  Last night, at 10:17 PM, Amy and I embraced one another, and Simon, as he left this world and was welcomed into Jesus' arms.  The experience of ushering Simon into Paradise was holy and beautiful.  An amazing song shuffled into our playlist as we watched Simon depart from us: " Tribute/ Agnus Dei ."  I now hear a collective groan as we all morn the loss of an amazing, gorgeous and powerful life here on earth.  And the Holy Spirit groans on our behalf. "...The Spirit helps us in our weakness.  For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words." (Romans 8:26)  As I write this, rain falls here in Kansas City, appropriately, as so many tears will fall from our faces today. Simon's story is one of victory.  He beat the odds of his diagnosis and held on for exactly 7 days.  He gave us joy and he filled our home with his

Happy one week birthday, Simon Adam!

It's time to celebrate - officially at 9:55pm it will be one week since Simon has blessed this Earth.  He is one sweet little fighter.  God has shown us a glimpse of Heaven and I so badly can't wait to see it in it's full glory some day.  Laying eyes on Jesus is going to be unbelievable, isn't it?!   God please cover us in your love and light our path.  Thank you for each minute, each hour, and each day with Simon.  He is beyond loved and we are thankful for your grace. ~Amen Hi!!!  I'm a fighter!  And yes, I do open my eyes! Happy Birthday Sweet Simon ~ One Week Old! We never dreamed we would post this!  You are so Great God!  Thank you!

Simon's Birth Story

It was around 6pm on Wednesday, May 14, 2014, that I finally decided to admit I was actually in labor. The contractions were  ramping up in speed and strength .  We packed bags. Adam picked up cheeseburgers at Winstead's (which I couldn't stomach, sadly). And I labored away throughout the house as we prepped to meet Simon.   By 7:30pm or so, Adam and I started to roughly time the contractions - they were coming very quickly.  Teddy was already sleeping over at Adam's parent's house, as we were supposed to have a date night. Adam sent his last text to his parents around 8:53pm, which is around the time we pulled out of our driveway to head to the hospital.  We checked into St. Luke's on the Plaza a little after 9pm.  I was already 8cm.  At that time, Adam sent a text to our good friends, who so sweetly and selflessly offered months ago to be our birth photographer and videographer.  Both of these ladies are sisters in Christ, mothers, and nurses. Shae Paradise,

What I'm thankful for today

I'm thankful for Simon's hair, which is an exact replica of his Dad's. I believe this is yet another glimpse we gain into God the Father's love for us as His Word tells us we are all image bearers of Him. There is a magneticism that draws fathers to their children when they can see themselves in them. It creates an intense desire to protect and provide for this tiny image bearer.  I'm thankful God loves us more intensely than that. I'm thankful Amy doesn't pretend that this isn't hard. The hardest part is knowing we have to give him back. What makes you hold on to every rise-and-fall of Simon's little chest is not knowing when it will stop. I'm thankful for how loving she is, and that her love for me doesn't diminish or become overshadowed in the midst of a trial. I'm thankful for our parents, Simon and Teddy's grandparents, whose spirits have gotten sweeter - like a grape ripening on the vine - right before our eyes. They are footh

Big brother Teddy with Simon

Before eating his breakfast this morning, Teddy asked if he could have a "seat seat" on the floor and held is arms out toward his little brother asking to hold him. Proud moment for both Adam and me. Teddy calls Simon either "bebe" or "be."  As you can see, Teddy was very gentle with his "be" lightly patting him as he held him.  Day 5 was beautiful, quiet, relaxing and a new normal day for our family of four (can't believe we can say that!!!).  Thank you, God, for the most wonderful day.

Simon's voice ringing through our home

Adam and my mom are downstairs with Simon. I'm crawling in bed a little early to get a jump start on sleep so I can hold Simon for most of the night - which might be my favorite time with him.  I'm starting to fall asleep when I hear Simon letting them know he's hungry. Sweet Simon cries ring loud through our home. Thankful doesn't begin to describe my overwhelming feeling at the moment.  I wish you all could hear him too!  We will post a video soon!  Good night!

Another day, another gift

Simon, our little piece of Heaven, given by God to grace Earth for a short period of time.  We are so glad you are here, Simon.  Thank you for teaching us about love, faith, the Kingdom and our great Savior.  You are loved, Simon Adam Balentine. There are have been so many moments the last few days that we never thought we'd experience with Simon.  Here are some photos of our baby boy and those moments.  He is simply wonderful. Not happy with us before a hungry, mommy! Never, ever, ever did I think we'd go through a pack of diapers!  Thanks Andersons for buying us another pack of diapers! Breakfast this morning. Our wonderful hospice nurse Vicki Great Grandma seeing Simon for the first time! Big brother Teddy on his bike! My best friends flew in for a quick visit from Chicago!  What a blessing. Every note, every visit, every letter, every Facebook message, every text mean so much to us.  

Celebrating another day

May 17th and all is well. Here are a few photos from yesterday,  last night and this morning. Click on the images to see the full size photos.

Good morning from Simon!

We had an amazing time with our boy last night!  Like his parents, he prefers a steady routine.  When we get close to the three-hour mark in-between feedings, he notifies us with the most beautiful whimper that he's hungry.  God's providence is being revealed constantly. It just so happened that we had some of Amy's breast milk left over from Teddy that we are feeding to Simon through his feeding tube.  After eating, he sleeps sweetly and comfortably in our arms. We had a couple of brief scares this morning - as Simon appeared to be lacking oxygen after apnea episodes - but he bounced back quickly both times.  We have an oxygen tank that we can turn on and shoot air his direction.  Color flooded back in his face both times, although we were telling God that Simon was already His.  He can embrace Him in paradise whenever He's ready. We take no credit for Simon making it this far.  This is all a gift - the result of the steadfast love of our Savior. Each minute, e

Simon is home with us

We are overjoyed.  Our Simon has beaten the odds, or said in a different way, God has answered so many of our prayers.  Simon has amazed us with his strength and sweetness. He is the perfect creation of a perfect creator. We are exhausted, but so very content.  More updates will follow. Thanks for your continued prayers.

Simon Adam Balentine has arrived

Our sweet boy, Simon, was born on May 14,  2014 at 9:55 PM. He is 4 lbs and 15 oz. and 17 inches long. His voice is strong and his hair is red like his daddy and his big brother. God answered our prayers in so many ways. We are so in love with our little guy. Amy was amazing during delivery.  Simon came fast - we checked in the hospital at 9:00 and he was born less than an hour later. More updates to come.

On faith

“I’m so glad you guys have a strong faith.” “You can lean on your faith to get you through this.” These, and similar variations of the same phrases, have been spoken to both me and Amy since we learned of Simon.  People recognize our faith in Christ and see that we are drawing nearer to Him during this difficult time.  But what it seems like, is that many people have faith in (our) faith.  They see an abiding hope in us, and this brings them comfort. My faith in Christ is not a crutch to help my limping, wounded heart get down this path of suffering.  A crutch would suggest that I only need such support because I’m hurt.  And if the hurt was gone then, well, what would the crutch be but an unattractive accessory doing nothing but slowing me down.  C.S. Lewis describes it better in The Problem of Pain, “We regard God as an airman regards his parachute; it's there for emergencies but he hopes he'll never have to use it.”  Similarly, Jesus isn't a sedative or pain kil

On friendship and defining a full life

Last night was a pretty sleepless night for me.   Simon was moving around like a crazy babe, which brings me great comfort and actually doesn’t seem to keep me up much. Honestly, I welcome a sleepless night to spend with him in prayer knowing it’s a pretty special time I get to share with my little boy.   My mind, however, was on another family that we have been connected with who was also carrying a daughter with a trisomy diagnosis.   We have made great friends through others who have walked and are walking this path.   We have “met” many friends that we will likely never meet in person, but they are forever friends who know some of the deepest thoughts and secrets of our souls because they have walked in our shoes.   However, when I really thought about what knit us to these new friends - it wasn’t just the loss of our children - but more so the shared bond of Christ.  He is the common thread we share.   Timothy Keller, one of Adam and my favorite authors, describes Christian frie

Update during week 35

We visited our OB, Dr. Carter, today and had what will be the final sonogram during Simon's pregnancy.  Everything is checking out "normal."  He is measuring about two weeks behind, which is no big deal.  The doctor estimates that he is close to five pounds.  His heart rate is right where it should be.  The end of this week will mark 36 weeks - which means Simon is full term.  He continues to kick and groove in Amy's belly.  There really aren't any indications that he will come early, but that's certainly not something we want to control. We are so grateful for the continued prayers.  We remain joyful, but some days are tougher than others.  Thanks for listening to our laments and our thoughts as we hold tight to each beat of Simon's heart.  We're very excited to meet our boy, but also we know the next phase of this journey will take us into some dark places. ~Adam