There’s a Tree Somewhere

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This is a picture of my son’s tree in our backyard. Why do I call it Jaron’s tree? Because half of his ashes were planted underneath that quaking aspen on the day we celebrated his life and grieved his death here in Montana at his memorial service. The remnants of his sick, beautiful little body literally nourish this tree every single day. And, on a fairly regular basis, our tears also water it.

I’ve always been a big fan of trees–the way you can hear the wind in the leaves before you even feel it on your face, the way they signify the changing of the seasons, the symbolism they hold in literature and Scripture. But once the life and death of one of your children is permanently tied to a specific piece of foliage, it becomes somewhat of an obsession.

Several months ago, a precious friend of mine was sharing about her frustrations with her oldest child and his current circumstances at school. She alluded to the fact that she had shed many tears over the situation. I remember that part specifically because I had shed my fair share of tears that day, as well. Not over anything new or pressing. “Just” over missing my boy. I believe that it was less than a week later when that same friend was praising the Lord that He had answered her prayers and helped bring some clarity and resolution to the school dilemma with her son. I shared in her excitement with a sincere heart. But later that night, as I drove into town to run some errands after my oldest was asleep, I found myself unsettled…frustrated…even a bit angry. As I struggled to figure out my emotions, I realized what was bothering me. I should have known what was going on sooner. This was in no way the first time I had come up against these feelings. The root? Why does it seem like some people’s tears matter more to the Lord than others’? For some, they have an issue, they pray over it, they maybe even shed some tears over it, and then God shows up and they see some sort of resolution or answer to their petition.

I had another dear friend share about a close call they had during the birth of their youngest child. They prayed. They cried. God showed up. Their child was saved. I found myself struggling to respond to her incredible story of God’s deliverance. Why? I LOVE my friend. She may very well be my longest lasting friendship, actually. I was genuinely thankful that both she and her son were saved during such a frightening and unexpectedly complicated birth. So what was my problem? Bottom line: I kept thinking, “Well, of course God answered her prayers. Her prayers count. Her tears make a difference to God. Obviously, mine do not.” Or so it all too often seems…

Pretty messed up theology, right? But come on…Have you never found yourself in that same position? How about when you attend yet another wedding and find that when they call for “all the single girls” to come onto the dance floor for the bouquet toss, and you look around and realize that it’s just you and a bunch of kids? Just me? Right. Or what about when you are scrolling through the seemingly countless pregnancy and birth announcements on Facebook or Instagram as you stare at your own negative pregnancy test for the twentieth month in a row? No? Ok. And I’m sure you NEVER roll your eyes when a friend is blessed with another promotion or home or car or whatever, as you drive your clunker to your thankless, minimum wage job and then come home to your shoe box-sized house. Fine. I’m the only one with a bad attitude, who lets jealousy storm the gates of my mind and take control every once in awhile.

But then the Lord blessed me with a picture. That has only happened a few times in my life thus far. It’s not like I hear a loud voice or a glorious beam of light shines down from the heavens. I just get a picture in my head…a picture heavy with meaning. Guess what this picture featured? You guessed it…trees.

What I saw was my friend–the one who saw God answer her prayers about her son’s school issues–sitting under a sapling. While she sat in the little shade that the growing tree provided, I was wandering…searching…but to no avail. Then, in the next portion of this picture, I looked up, and what I saw made my breath catch in my throat. I saw my boy, my Jaron, about six years old, sitting under a massive oak tree, resting in the ample shade that this mighty tree cast. And even as I watched, I could see the tree growing.

You see, the tears that my friend shed watered the ground where that little sapling stood. She was granted the blessing that it is to cry out to the Lord and see almost immediate results. Maybe that sapling will require more tears in the future. Maybe more prayers will be necessary, and that little sapling will grow. Or maybe, that little tree has done its job, and will stand at its current height as a sign of remembrance that the Lord heard and answered her cries on this side of eternity.

But my countless tears and petitions that surround the brief life and subsequent death of my Jaron are working to nourish a giant that I will not see until after my death. It might seem that my anguish has gone unanswered or even ignored. However, despite how it may feel right now, that anguish has a purpose. Those tears still count! And one day, when my boy greets me in the presence of the Lord, he will show me what my supplications have accomplished. And we will sit, hand-in-hand, under the shade of that mighty oak and talk for an eternity. And I will KNOW that every single tear I shed in the time I lived without my son was counted, collected, and responded to, just as He promised in Scripture.

But until that glorious day, I will continue to fight…fight to remind myself that there IS a tree…somewhere. A tree that symbolizes the Lord’s compassionate response to the cries of His beloved daughter. It may not be along the path of my earthly life, but it is there. Somewhere.

And so is your tree. Whether it is growing in response to a current request that God may choose to answer earth-side, or one that grows steadily in a heavenly forest…it is there. And it is nourished and fed by your petitions. Your tears matter. Your shattered heart is accomplishing something.

To my fellow grieving mamas…

Our sobs can seem so fruitless, can’t they? I often find myself thinking, “What good will this do? All the tears in the world won’t bring back my little lost love.” But that train of thought is straight from the pit of hell. God’s Word promises us in Psalm 56:8 that He collects our tears as in a bottle. Every. Single. One. The ones we let slip in public and the ones that we ugly cry when we are alone with their absence. I encourage you, especially on those days when the weight of your grief is crushing, think of your tree. And picture your son or your daughter, at whatever age you’d like to imagine, sitting or playing or resting or visiting with Jesus under that tree. Just waiting until you get there, and they can not only show you the tree your tears have grown, but the massive forest where they play with their friends who have their own trees to take shelter under. Because, my friends, there is a mighty forest in heaven that only exists because of the tears of those of us who had our prayers go unanswered, but who refuse to stop praying and weeping and hoping until our final day on this earth.

There is a tree somewhere. And one day, you WILL sit under it.

 

 

“You have kept record
of my days of wandering.
You have stored my tears
in your bottle
and counted each of them.”

Psalm 56:8 (CEV)

 

 

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I Feel Like a Jew on Christmas Eve: Why Christmas is for the Grieving

Jews Crying

Before you label me anti-Semitic, let me explain myself.  My cousin Matt and his oldest son were debating what the best Christmas song is.  If you know me very well at all, you know that I have never been a big fan of Christmas.  Much like some people feel about Valentine’s Day, I feel like the holiday pukes all over us for over a month before the actual day comes.  Part of me dreads going to church in December because I know we will be singing nothing but Christmas carols.  But my cousin’s Facebook post about the topic got me to thinking.

The only Christmas song I have ever really loved is “O Come O Come, Emmanuel.”  Why?  Well, because I believe that it most accurately captures the grief and despair of the Jews of the time. I’ve always felt that way.  But now…oh now.

Now I think that I can truly understand where the Jews were coming from. They hadn’t heard from the Lord in hundreds of years.  They were being oppressed.  They felt abandoned by the God who had called them “HIS people.”  Where was He?!  The most commonly used name for girls in the time leading up to the birth of Christ was Mary.  Do you know what Mary means?  It means “bitter.”  With each Jewish baby girl that was named Mary, the Jews figuratively (and probably literally) cried out to the Lord in their bitterness.  Why hadn’t He sent the Messiah yet?  Why had He allowed so much suffering?  And even after the Lord DID send the Messiah, He was not at all what they were expecting.  He was not what they had been hoping and praying for for generations.  This was not what they had been promised!

This year has been horrific for our little family.  Before Jaron was born, Ben and I prayed constantly and fasted weekly for our boy.  People from every continent besides Antarctica were praying for the health of our son.  When my husband and I read Scripture, we saw the multiple promises of  God.  We both believed that God would honor our obedience by granting our son a long life.  I had never believed more strongly in a physical healing in my entire life.  But then…he died.  This sweet baby boy who had been bathed in prayer since before he was conceived.  Both Ben and I have cried out to the Lord since the birth and subsequent death of our son, and heard nothing but silence.  We have begged Him for a word–any word–for us to hold on to.  We have screamed in bitterness and anger.

This is not what we prayed for.  This is not what we expected.  Why hadn’t God shown up?  Why hadn’t He intervened on our behalf?  We are His children!  This isn’t what we thought He had promised!  That’s what I mean about feeling like a Jew before Christ.  Many are still waiting for Him to come.  Heck, I feel like I’m still waiting for Him to come in some respects.

But I don’t want to miss it.  I don’t want to miss the Christmas morning of my soul.  Eventually, the Lord DID speak again to His people.  He showed up for them in a very literal way.  He had heard each and every one of His people’s cries.  Their bitterness and tears had not escaped His notice.  In fact, not only did He answer them, He answered them with His own Son.  Trust me, there is nothing more precious that can be given.

However, my soul is still stuck on Christmas Eve.  I am still waiting for a word from my Lord.  I am still racked with bitterness for the apparent failure of the God I have followed so obediently despite this dark night of my life.  My favorite verse of “O Come O Come, Emmanuel” is:

“Oh come, thou day-spring, come and cheer
Our spirits by thine advent here.
Disperse the gloomy clouds of night
And death’s dark shadows put to flight.”

Trust me, other than my son in my arms, the one thing I so desperately desire is for death’s dark shadow to be put to flight.  Because right now, my entire life is held within that shadow.  The gloomy clouds of night are all we have known these past eight months.  We have lost one of our sons. We are constantly plagued by sickness.  I struggle with symptoms of Post Traumatic Stress Disorder.  My sleep is plagued by nightmares of my son crying out for me as he lays in the funeral home, but no one hears him and he is cremated.  My body has been traumatized to the point that the doctors are unsure that I will ever be able to get pregnant again.  Ben and I are broken, shattered, disillusioned people.

But it can’t end there.  It just can’t.  After all, my beloved song has a chorus.  “Rejoice! Rejoice!  Emmanuel shall come to thee, O Israel.”  SHALL come…not has come.  The chorus is a call to rejoice BEFORE seeing the answer that is our Redeemer.  Honestly, my rejoicing right now comes in the form of tears.  Tears of loss.  Tears of pain.  Tears of hopelessness.  But also tears that one day, this will no longer be my reality.  Some day, only God knows when, my faith will be restored.  The gloomy clouds of night will part and allow the sun to come through again…even if it’s only a sliver of light.  Every single tear that I have cried will be remembered, counted, collected, and responded to.  Just as it was for the Jews before Christ.  There is a verse in Psalms that reads, “You keep track of all my sorrows.  You have collected all my tears in your bottle.  You have recorded each one in your book.”

I cannot deny, however, that many devout Jews lived and died before ever seeing the promises of God revealed.  They lived every day of their lives hoping that THAT day would be the day that their deliverer would come.  And He didn’t.  Not in their lifetimes.  But it didn’t mean Christ wasn’t coming.  And so I must believe that even if I never see the promises of God revealed on this side of heaven, it does not mean that they went to waste.  He IS coming.  He must be.  I could not get out of bed each morning if I didn’t believe that today might be the day that death’s dark shadows take flight.  That today might be the day my Savior chooses to break His silence and speak.  That today might be the day that He starts putting the shattered pieces of my heart and my faith back into their right place.  That today’s tears may be the last that He collects before intervening on our behalf and making Himself known to us again.

So I say to those of us who are finding it impossible to celebrate the coming of a newborn King this season…He is coming.  His promises are true, whether we see them fulfilled or not.  Death WILL be defeated.  This dark night of our souls will not last forever.  Our tears matter.  Christmas Eve will turn to Christmas morning.

 

“O come, O come, Emmanuel,
And ransom captive Israel,
That mourns in lonely exile here
Until the Son of God appear.

Rejoice! Rejoice!
Emmanuel shall come to thee, O Israel.

O come, Thou Wisdom from on high,
Who orderest all things mightily;
To us the path of knowledge show,
And teach us in her ways to go.

O come, Thou Rod of Jesse, free
Thine own from Satan’s tyranny;
From depths of hell Thy people save,
And give them victory over the grave.

O come, Thou Day-spring, come and cheer
Our spirits by Thine advent here;
Disperse the gloomy clouds of night,
And death’s dark shadows put to flight.

O come, Thou Key of David, come,
And open wide our heavenly home;
Make safe the way that leads on high,
And close the path to misery.

O come, O come, great Lord of might,
Who to Thy tribes on Sinai’s height
In ancient times once gave the law
In cloud and majesty and awe.

O come, Thou Root of Jesse’s tree,
An ensign of Thy people be;
Before Thee rulers silent fall;
All peoples on Thy mercy call.

O come, Desire of nations, bind
In one the hearts of all mankind;
Bid Thou our sad divisions cease,
And be Thyself our King of Peace.”

Oh, To See Him Smile At Me

This past Saturday, June 6th, was Jaron’s memorial.  We kept it simple and did a tree planting in our backyard.  We were surrounded by friends and family who love us and who love our Baby J.  It was my hope that the memorial would help bring some closure to my husband’s family, as they did not get the chance to meet or say goodbye to Jaron like my family did.  Throughout the planning process, I felt very alone.  You see, my husband has a hard time looking at pictures or videos of Jaron, not because he doesn’t want to be reminded of his son, but because his love–and thus his pain–is so deep that he says sometimes it feels like he’s being split in half.  I know exactly what he means.  I feel like I’ve been broken in two.  However, I wanted my son’s memorial to help my in-laws feel more connected to the part of the story that happened in California while they were all here in Montana.  So I made a video of pictures and Bible verses, printed pictures for people to take home, arranged all of Jaron’s various items on our dining room table, made a CD to play during the tree planting, created a book for Caleb all about his baby brother, and ordered Jaron’s memory chest.  I can’t even believe that I am saying this, but being so focused on getting everything done and doing it well has somewhat desensitized me to my loss.  I can now look at Jaron’s pictures without tearing up.  Songs about hurt and loss don’t get to me the way that they did a few weeks ago.  And I’m even feeling much more hopeful about being able to bond with my sister-in-law’s son (due July 3rd).  All of this scares me.  In no way do I want to believe that I am “getting over” the loss of my precious baby boy.  Am I dishonoring him by my lack of tears?  Is this only a phase?  Will I once again feel the acute sense of despair that was my constant companion only a few weeks ago?  I’m not even sure what to hope for…

That being said, I want to share with you (if anyone even reads this blog anymore) my goal as Jaron’s mama.  As I have written/said several times before, his life HAS to have purpose.  I have to believe that the two short days he spent here on this earth were meaningful and life-altering, not just for me, but for others, as well.  Both Ben and I have made some poor decisions in how we have dealt with the grief of Jaron’s passing.  We have acted out in pain and had to crawl back to the throne of grace and beg for forgiveness.  It has been in those humbling moments that I have so clearly heard the indistinguishable cry of my heart…I HAVE TO MAKE MY BOY PROUD!  I don’t want to stand before my son some day ashamed of the life that I led once he was gone.  It is truly one of my deepest desires to be able to stand in front of Jaron one day in heaven and hold my head high.  I want to be able to be proud of the life I led and the impact he had on me and our little family.  I want to see him grin from ear to ear and say, “Wow, mom.  You were so brave.”  His little life HAS to make us better…better as people, better as parents, better as a family, better as believers…better in every way.

So what does this mean?  How will this play out in my life as I move forward without my sweet son?  While I cannot answer that fully, I do have some ideas.

I don’t want to let fear or hurt dictate how I live my life.  I don’t want to run away from situations that may arise simply because they will cause me additional pain.  Yes, the hurt will be deeper when I choose to walk boldly into those parts of my life that remind me of my son and the heartache that I now live with every day.  And I hope that I will allow myself to feel that pain and not try to tuck it away, afraid of what others may think or worried that I will be a disappointment.  I want to courageously walk into those areas of life, albeit with a tear-streaked face.  For example, my sister-in-law is due with a little boy in just one month.  We used to talk about how fun it would be to have our boys so close in age, getting to watch them grow up together and become best buds.  But that was never to be.  God had a different plan all along.  It has been a difficult and complicated road to walk with my sister-in-law.  She has been so incredibly gracious and loving throughout the last few months.  I could not ask for a more understanding sister.  But what about when her son is born?  She has told me that she doesn’t expect Ben and I to come to the hospital to meet Collin.  She has also said that she would understand if I didn’t want to be around him for awhile.  While I so appreciate her kind heart, I can’t let that be Jaron’s legacy.  I can’t let the love that I lost when my son died keep me from lavishing love on others, especially his little cousin.  So I am determined to walk bravely into that hospital and let myself sob while I cuddle my sweet new nephew.  I am praying that he will be an incredible source of healing for both my husband and I.  And while I am sure that his life will make me even more acutely aware of Jaron’s absence, Collin will be living life for the both of them.  I will not punish my nephew by withholding my love simply because it hurts.  I chose to embrace the hurt and love anyways.

I want to be able to encourage others who are walking a lonely, dark road in their lives right now.  Because of what I have been through in the last two and a half months–well, the last year really–I have a deep love and compassion for those who are struggling simply to breathe each day.  It is my prayer that the Lord would use my own hurt, grief, and struggles with bitterness and anger to encourage others as they face their own burdens.  I know that this will take time.  A new friend of mine, who has also experienced the loss of a son, reminded me that I don’t need to rush my own healing in order to help others or ensure that Jaron’s life has purpose.  I have a lifetime to make my boy proud, and I don’t want to stretch my heart and my mind beyond what they are capable of at any given time.  I can’t ignore my own healing, but I can still be aware of others around me that are also in the process of putting their shattered hearts back together.  And I can say to the Lord simply, “Use me.  Use my heartache.  Use my son.”

Both Ben and I want to be intentional about healing in a way that honors the Lord.  So we are hoping to begin counseling soon with one of the pastors at our church.  Most likely, we will go both as a couple and individually, to ensure that we aren’t letting our grief cloud our witness to others or letting our hurt shape our marriage in a harmful way.  We also plan to pursue some sort of parents’ grief group where we can meet other couples who are on this same journey of child loss.  I have no doubt that intentionally pursuing healing will bring up painful emotions and open ourselves up for attack from the Enemy.  But our desire to make our boy proud far outweighs the fears we have about opening up to others and letting them see the “yuck” we are fighting against.

And what about you?  How can you be better because of my Jaron’s short life?  Maybe you could have an extra measure of patience when your baby is screaming or your kids are fighting, being grateful that they are even able to cry or yell in the first place.  Maybe you can endure a marriage that feels lifeless, because you have been reminded of how short this life really is compared to eternity.  I don’t know where you may find yourself at this particular moment.  But wherever you are, I challenge you to live a life that will make my son, and–more importantly–our Savior, proud.  Live courageously.  Embrace the pain, and lavish love on others.  Desire, above all else, to be able to stand in front of Jesus and know that He will smile when He looks at your heart and the decisions you made while you lived on this earth.  And that, my friends, will be Jaron’s legacy.

Let Me Tell You About My Boy

I have spent hours trying to think of some clever and catchy title for my first blog post after losing our sweet Jaron Isaiah.  “The Life and Death of a Warrior.”  “”Mission Accomplished.”  “Beautifully Broken.”  But nothing I thought of seemed to fit.  Until I stopped trying to  be a clever writer and just let myself be Jaron’s mommy.  And from the depths of the grief and sadness came a smile.  I’m just like any other mom who recently gave birth.  I want to tell people about my baby.  So there it is.  Let me tell you about my boy.

As many of you were aware, I was scheduled for a C section on April 3rd.  Ironically, that was Good Friday.  Ben and his parents had just purchased their plane tickets for April 1st, and I was making a list of things I needed to pick up from Target so that I could have my bag packed and ready to go.  But then my boy surprised me, as he always seemed to love to do.  A little after 6am on Friday, March 27th (both of my boys were born exactly one week before they were supposed to…stinkers), I rolled over in bed and was met by a gushing of water that created quite the mess.  I muttered a word I am not proud of, shoved a towel between my legs, and waddled to my parents’ bedroom.  “My water broke!”  Like mother, like daughter…she said exactly what I had said when it first happened 🙂  From that point on, it was a flurry of activity.  Thankfully, Caleb was still asleep and completely oblivious to the life-altering event that had just taken place.  I called Ben and told him what was happening.  I’m sure my voice was barely audible as I realized that I would have to do this without my husband.  I then tried frantically to pack what I had ready (which wasn’t much, seeing as how I was supposed to run to Target and finish packing that day), and my mom and I drove to the hospital while my dad stayed behind to watch Caleb and help Ben find a plane ticket.

By the time I was all hooked up and waiting on the doctor, my belly had shrunk significantly.  I had joked several times that it wasn’t fair that I had such a tiny baby, but a gigantic pregnant belly.  Now that I was able to look down and see how small my womb actually was without all of the extra fluid, I was reminded of just how tiny and fragile my son really was.  I broke down a few times in the hospital room as I was waiting to be taken back to surgery.  By that time, I knew that Ben wouldn’t be able to get there until around 9 that night.  And while I had an amazing network of family and friends who were all already scrambling to do whatever they could and be wherever they needed to be, I just wanted my husband.  My rock.  Jaron’s daddy.  I silently prayed over and over again that Jaron would hold on at least until his daddy could meet him.  I begged God, even in these last few moments before Jaron’s birth, to completely heal my son.  Even though I knew it wasn’t likely, I pictured the doctor handing me my healthy albeit small baby and saying, “Wow.  He sure fooled us!  He’s perfectly fine!”

Finally, they wheeled me down to surgery.  I was shaking horribly and having some pretty harsh contractions.  Just as the anesthesiologist was about to administer the meds, he was called away to the surgery room next door where a woman’s baby was in more distress than mine.  I sat on the edge of that hospital bed, backside exposed to the world, shaking uncontrollably, for what seemed like an hour.  I have no idea how long I actually waited.  In classic “me” fashion, I joked with the nurses in the room until it was finally my turn.

Ok…I have given birth vaginally and now via C section, and I HATED having a C section!  I had no idea how physically rough and forceful the doctors have to be with your body in order to get the baby out!  Yuck!  All I knew was that all of a sudden, the doctors weren’t beating me up any more.  I assumed this meant that my Jaron was out.  But there was no crying.  None.  Just the sounds of doctors conversing, monitors beeping, and the medical staff scurrying about to take care of both me and my son.  Amazingly enough, I was able to catch a glimpse of my new baby between the myriad of bodies in that little room.  And I knew.

I immediately looked over at my mom and said, “I was right.  It’s Cornelia deLange.”  You see, a few months prior to Jaron’s birth, I had googled my son’s symptoms.  After all, none of the doctors could give me an answer, so I thought I’d give it a whirl.  I typed “IUGR, CDH, excessive hair” (even on the ultrasounds, you could see that he was hairy).  Cornelia deLange Syndrome was the first thing that popped up.  It was literally the only genetic syndrome I had allowed myself to research.  One of the most obvious characteristics of CdLS is an upturned nose accompanied by “connected eyebrows.”  So, yes…I used my son’s unibrow to help confirm my suspicions.  When my OB wheeled his chair over to talk to me, he was lovingly direct.  They would have to run some more tests, but it looked like Jaron had CdLS.  I was devastated.  There is such a wide range of what CdLS can look like, so I only knew that he would definitely have mental disabilities and obviously abnormal physical characteristics.  So I went back to the recovery room assuming that I had a lifetime of caring for a severely disabled child looming in my future.

I called Ben and told him the news.  I cannot tell you how it ripped me apart to hear him stifling sobs as he sat in the airport.  I had to call him several more times before he arrived to fill him in as more information became available.  And with each call, the news became more and more dire.

“Hey, babe.  Where are you?  I’m out of surgery.  I’m ok.  Jaron is alive and in the NICU with my mom.  He is intubated because he wasn’t breathing at all when he was born.  They are still waiting on the geneticist, but everyone pretty much agrees that it’s Cornelia deLange Syndrome.”

“Hi.  Babe, it’s way worse than we thought.  Not only does he have a congenital diaphragmatic hernia like we originally thought, he also has a hole in his heart and his liver has moved up into his chest cavity.”

“Babe, he has minimal higher level brain function.”

“[sobs] The head NICU doctor just used the term ‘incompatible with life.’  [sobs]  You need to tell your parents to hurry.”

By the time Ben actually got to the hospital, I had already spoken with both the geneticist and the head neonatologist.  I was emotionally distraught, but the reality of it all didn’t really hit me until the moment Ben walked in the room.  The second we looked at each other, we both started to weep.  Our boy, our sweet and feisty Jaron Isaiah, was going to die.  God had not answered our prayers for healing.  In fact, our son was much sicker than any of us had even imagined.  Although Ben and I had talked at length about the possibility of Jaron not making it, neither of us had actually believed that we would be going home without our son.

We had prepared ourselves for the long haul.  We were ready to fight for as long as it took for our boy to be healthy enough to come home.  I had never believed in a healing as much as I had during this pregnancy.  I was wrong.  And it wasn’t just me.  So many others had expressed their belief that, despite what the ultrasounds were showing, Jaron would be ok.  How could we have all been so wrong?  Why hadn’t our months of praying and fasting made a difference in our son’s diagnosis?  Why had God allowed our son to survive 38 weeks in the womb, only to take him back so quickly?

All of these emotions and questions were flooding us as we were finally allowed to go see our baby.  The walk from St. Joseph’s to CHOC seemed so much longer and more desolate than when we had taken a tour just a week prior.  Ben and I were silent.  The hospital volunteer pushing my wheelchair congratulated us.  Rather than explain just how hurtful that well-intentioned comment was, we just smiled and thanked her with tears welling up in both of our eyes.

And then we met him.  All 4lbs 7oz and 16 inches of him.  We didn’t even bother trying to hold back the tears.  He was so beautiful, and yet so obviously broken.  His hands and feet were abnormally small.  His waist was so thin compared to his chest (after all, most of his gut was pushed up into his chest).  He didn’t open his eyes.  He never opened his eyes.  We realized fairly quickly that he was also completely deaf.  Other than kicking one leg out of the swaddle pillow and scrunching his face up with discomfort, he didn’t move.  He was, however, able to grasp our fingers as we lovingly held his tiny hands. Holding him turned out to be quite the ordeal, given all of the tubes and monitors that had to move with him.  As I held my sweet boy and caressed his face, he barely moved.  It killed me to realize that my attempts at soothing him by whispering to him were completely useless.  He couldn’t hear me shushing him.  And then it hit me that he had never heard my voice.  Every time I had talked to him in the womb, every time his brother yelled to my belly as he kissed “baby brother,” every time Ben whispered to him that we were praying for him…he hadn’t heard any of it.

It haunts me, actually.  If my son was completely deaf and never opened his eyes, did he even know who I was?  Did he have any concept that he belonged to Ben and I?  Could there even be a special bond there if there could be no recognition of our faces or voices?  Knowing that there is a possibility that my son didn’t even know I was his mommy rips me to pieces.

His lack of tenacity took us completely by surprise.  He had been such a fighter the entire time he was in my womb.  From as early on as seven weeks gestation, the doctors had prepared us that he would most likely not make it to full term.  And yet, he had fought all of the way to 38 weeks.  Not only had he survived to full term, he was INSANE in my womb!  If you were one of the precious people who came with me to an ultrasound, you no doubt heard the doctor or technician comment on how Jaron wouldn’t stop moving long enough for them to get measurements or pictures.  The kid loved beating me up.  Just a few nights before he was born, my mom had actually been able to see my belly moving while we were in a dark movie theater!  If I had a dollar for every time I muttered, “Oof!” as my son’s strong kicks took me by surprise, we wouldn’t have to worry about hospital bills.

And yet, here he was.  Seemingly content to stop fighting.  It baffled me.  Let me tell you what this warrior baby fought through just to be born:

-a hole in his heart (undetected until birth)

-his intestines and liver cramping his chest cavity so that his right lung was impaired (misdiagnosed as a lung tumor after a fetal MRI)

-swelling in his forehead

-severe intrauterine growth restriction (he was only in the third percentile when he was born)

-a rupture in my amniotic sac due to the amniocentesis at 20 weeks

-excessive fluid that made it even more difficult for his lungs to develop and should have caused preterm labor

-a pleural effusion (fluid around his lungs)

Can you imagine the level of ferocity with which this sweet baby boy had to fight just to survive his time in my womb?!  But why?  Why would he fight so hard just to give up in the end?

To quote my husband, “Just to meet us.”  Any time I am questioning why Jaron fought so hard for so long instead of just letting himself surrender to his health issues while still warm and cozy in my belly, my husband says those four small, but oh-so-powerful, words.  Just to meet us.  And for us to meet him.  It truly did seem like he knew his fight was over and his mission had been accomplished.  It wasn’t until after Ben and I held him that first night that his condition seemed to worsen.  Even though he wasn’t requiring as much oxygen, his movements were even more muted and his reactions to outside stimuli were becoming more and more subtle.  The baby my mom had sat beside in the NICU in those hours leading up to Ben and I’s visit was not the same baby we saw the next morning.  He was content just to have met us.  He seemed to know that he was done with this earth and ready for heaven.

And so just a few days after he was born, with our families surrounding us, we watched as the nurse removed Jaron’s breathing tube.  I held my breath as I waited to hear him cry for the first time (something that the nurse had told me always happens right after a baby is extubated).  Silence.  He barely reacted at all.  All I heard was the beeping of the monitors and the quiet sobs of family members as they watched the scene unfold.  The doctors had told us that they weren’t sure how long Jaron would last after life support was removed.  It could be minutes, hours, or days.  We prayed it wasn’t days.

Our sweet boy held on for about five hours…long enough for everyone there to hold him and whisper words of love to him.  Eventually, only our parents were still in the room with us.  I asked to hold Jaron again shortly after both my parents and Ben’s decided to go for a walk.  Ben quietly took our son off of his chest and placed him in my arms.  I pulled the front of my shirt down a bit so that Jaron’s cheek was directly on my skin.  A few minutes later, I noticed that he hadn’t taken a breath in several seconds.  I motioned to Ben, and we silently stared at our son’s chest to confirm whether or not he had, indeed, stopped breathing.  And, just like that, our son was gone.  I cannot explain to you how surreal that moment of realization is.

My son had just died in my arms.  I held my newborn baby as he took his last breath and went into the arms of Jesus.  Ben and I quietly cried and cradled our boy for several minutes before calling the nurse in.  She listened for his heartbeat, and then left to get the doctor.  The doctor came in, listened for a heartbeat, and then said four words that still haunt my dreams…”Yes, he is gone.”  Even though we knew that would be the outcome, those words took the breath right out of my lungs.

The NICU nurse who had been with us since that morning asked if we would like to bathe Jaron and put him in the outfit that we had brought with us.  Wanting to spend every last second with our son, we said yes.  Bathing a lifeless preemie’s body is just as horrific as you would imagine it to be.  Ben gently held our son in the tub as I washed the dried blood off of his lips and tried to tame that curly black hair of his.  I thought back to Caleb’s first bath and how he screamed bloody murder as we wrestled his flailing body the entire time he was in the water.  This was so different…so wrong.  I yearned for those screams, but was met with silence.  We dressed Jaron in a preemie version of the outfit I had used to tell Ben that we were expecting a boy.  I hate the pictures of our baby in that outfit.  He isn’t there.  You can see that his hands are white due to the lack of blood circulating to his limbs.  His body is stiff.  His coloring is ashen.

When it finally came time to leave, I broke down.  I couldn’t leave my boy alone and be wheeled away.  I couldn’t stand to see him lifeless, laying in that NICU bed.  And so my husband offered to hold him until a volunteer had wheeled me out of the room.  The last glimpse I got of my son on this earth was his little body being gently cradled by the man I love.

The days and weeks since Jaron’s death have been a nightmare…both literally and figuratively.  I have horrific dreams of my son crying out for me as he lays in the morgue, but I can’t get there in time to save him.  My arms literally ache with his absence.  I am not exaggerating.  Each day is a roller coaster of emotions.  Grief often consumes me.  Wishing my Jaron was here with us is my first thought in the morning and my last thought at night.  Most nights still end with Ben and I holding each other, sobbing.

It took me three weeks to write anything because I was waiting to experience some level of peace about the death of my son.  I wanted to be able to write about how my faith has been strengthened…how I know God is good no matter what…how I understand, at least in part, why the Lord chose not to heal my baby.

I finally stopped waiting and just went for it.  I have always said that what I write here on this blog would probably get pretty ugly.  But I also promised that it would be authentic.  So I’m not going to hide from you all while I wait for some sort of spiritual/mental/emotional healing to happen.  After all, I’m convinced that the process of healing will take the rest of my life.  And I want to be real with you.  I want you to not just see the end product of my faith despite the grief.  I want you to be able to see the depths to which my soul has fallen.  I want you to see the process.

So here is where I am tonight.  I am angry.  I don’t understand why God chose to take my son.  Sometimes, I get so angry that I start shaking until I finally let it all out and just scream at the sky.  We prayed so hard.  We truly believed that God would save our boy.  But all we got was bad news.  Even the good news we got was all just misdiagnoses.  Why would God give us hope (making it to full term, being told that it was a tumor instead of a hernia, etc.), just to crush it in the end?  Plus, besides a complete healing of my son, my number one prayer was that others would come to know Jesus because my son lived.  This seems like a completely backwards testimony.  If I was on the outside looking in, I think I would run from Jesus, not towards him.  It feels like every single one of our prayers for our son was ignored.

But I know…deep down I know…that the God I knew before Jaron is the same.  He is still good.  He is still loving.  He is still just.  Don’t ask me how. Right now, all I see is pain and hurt and anger.  Because it was a genetic condition that happened at conception, there was nothing anyone could have done that would have saved our son.  If love alone could have saved him, I would be snuggling my newborn right now instead of writing this.  But God could have.  At any point, God could have stepped in and healed our boy.  For some reason, He chose not to.  There will always be a part of me that wants to scream, “WHY NOT?!” at the top of my lungs.  I haven’t been able to pray since Jaron’s death.  After all, what’s the point?  But I know that this ugly place I find myself in is not where I will stay.

My brother described it best.  The night before Ben and I headed back to Montana with Caleb, my family all sat in the living room pouring our hearts out to each other.  My younger brother told us about a professor he loved who explained how he was glad to see that many modern worship songs were beginning to truly embrace the sadness and despair that we often find ourselves in.  He said that it is ok to yell and scream and metaphorically beat on God’s chest in anger.  As long as we take it to Him, it is still an act of worship.  And eventually, when we are spent, when we have no tears left to cry and no words left to say, we will fall face down on the goodness of God.  Right now, I still have plenty of tears to cry and words left to say.  I still feel like I’m falling into a bottomless abyss of grief and anger.  But I know…I KNOW…that I will eventually land.  And when I do, it will be into the goodness of my God.

And that brings me back to my warrior baby, Jaron Isaiah, whose name means “I cry out, God delivers.”  We don’t see Him yet, but we know that God’s deliverance is coming.

Daddy’s Perspective

Hi, all. This post is from Ben, Jaron’s dad.  As most of you know by now, Jaron passed away Sunday.  There were so many things wrong with him that his little body could not survive.  However, we did get three days with him before he left this world. Jaron fought with all he had for those three days.  During that time, he felt nothing but love, comfort, and peace.  He was never in pain and only wanted to be cuddled and hugged.  He was the sweetest baby I have ever known.  Every part of me wants Jaron in my arms, but he is in a better place. For the few short days we had with him, we were both blessed without measure and torn apart with devastating grief.  I don’t regret for a second his journey, I only wish the earthly portion of it was longer.  Perhaps in the future, I will write on here again about lessons learned and the grace and mercy of God.  But for now, I just want you all to know he passed away in the loving embrace of his parents and lived a life worthy of remembrance.  God is good, and He has taken Jaron home where there is no pain, suffering, or sadness. With that, I want to conclude with a message for my son.  I pray that in some way this reaches him in heaven; but if not, I will tell him when I see him again.   Jaron, My dear, sweet son.  Words cannot express how much I love you and how much you mean to me.  I will always cherish the days we had together and your memory will forever live on.  You have blessed so many people that you will never meet and you have blessed your mother and me without comparison.  I will miss raising you, watching you walk, holding your hand, and telling you how proud I am of you. I wanted so badly to take you and your brother camping in the woods and hiking in the mountains.  I wanted to protect you and guide you, but that was not in God’s plan.  I will always love you and miss you.  I will try not to be sad, but instead happy that you are at peace and in a place so much better than this. When I get to heaven, we will be together again.  We will walk hand in hand through meadows and forests and explore eternity together.  Your journey is not over.  In fact, it has only just begun.  I love you, son.  Please just know that I will always love you.

A Hurting Person’s Guide to Hurting People

Ever wonder how to best approach/deal with/help someone who is hurting? I’m going to give you some tips from the perspective of someone who is currently trying to navigate a painful, stressful, tumultuous season of life. I am writing this both for those who are hurting, as well as for those who love them.

First off, let me make a disclaimer. Everyone is different, and these tips won’t necessarily apply to every single hurting person that you may come in contact with. That being said, I have bounced these ideas off of several people who I know have gone through very painful experiences in the past. I know that these tips don’t just apply to me. Take away from this whatever you’d like, and leave the rest. My intention is to provide a basic framework from which you can build your own approach.

Quick key:

HP = Hurting People

FFoHP = Friends and Family of Hurting People

1) Give an Extra Measure of Grace

HP: Ever totally put your foot in your mouth when talking to someone who is hurting? Ever say something and then want to smack your palm to your forehead? Ever wish life had a rewind button so you could rethink what you just heard come out of your mouth? Me, too. Don’t expect people to know exactly what to say to you. Heck, I have NO CLUE what I would say to someone going through what I’m currently facing. Give people the same grace you would want to be given if the roles were reversed. It sounds so simple, but it takes guts and practice to smile and shrug it off when someone says something hurtful, thoughtless, or just plain ridiculous. You have enough on your plate. If you trust that the person you are talking to has good intentions, let it go.

FFoHP: Please, please, please give us hurting people tons of extra grace! Our hearts and minds are reeling with what we are facing. It takes everything we’ve got some days to simply get out of bed, put clothes on, and make it to a socially-acceptable time to crawl back into bed. We are going to forget play dates. We are going to look like ragamuffins, as my mom would say. We are going to sound irritable and will probably snap at you for no reason at all. We are going to unintentionally let relationships fall to the wayside. When you are a victim of our circumstances, please do your best to give us the benefit of the doubt. Remind yourself that we are not ourselves and may not be for awhile. If it happens often enough that you are finding it hard not to get your feelings hurt, please say something. Say it kindly and lovingly, but say it. There’s a good chance we have no idea the effect our hurt has had on you.

2) Be Specific When You Offer to Help

FFoHP: First of all, thank you so much for wanting to do what you can to help us out in our times of need! That being said, make sure you don’t offer something that you can’t (or don’t want to) follow through on. If kids aren’t your thing, don’t feel obligated to offer to watch my toddler ;). If you barely have time to feed yourself, you don’t need to bring me a meal. Figure out what you are able to do and only offer that. Going to Target and have a few extra bucks? Put together a little bag of dollar items to keep my toddler occupied while he visits me in the hospital. Love to cook? Give me 3 or 4 meal options and dates to choose from, and bring us a meal. Do you have a weekly play date you take your kids to? If you’re feeling brave, offer to take my kid with you. Are you running around town killing time before you pick your child up from practice? Text me and see if you can drop off a treat to me at the hospital. Heck, it can be as simple as finding out what restaurants are near the hospital and mailing a gift card! Financially strapped like us? Write a quick note to me or have your kids color a picture for my boy and drop it in the mail. Obviously, these ideas are specific to my situation, but you get the drift.

HP: I know that for some of us, it is so hard to accept help! But when you take someone up on an offer to help, you not only take a bit of stress off of yourself (and we all know that every little bit counts), but you also enable someone to feel useful and allow them to become a part of what is going on. I hope that makes sense. For those people who love us, it is torture to watch what we are going through and feel helpless to do or change anything. Taking them up on their offers to come alongside us in any small way alleviates some of that helplessness. Can they take away the hurt or change our circumstances? Probably not. But they can find practical ways to love us through it. Try to come with a list of specific things you need, so that you are ready when someone asks what they can do.

3) Don’t Expect a Response

This one is just for you, FFoHP. Please don’t expect us to respond right away if you text or call us. Even if we aren’t busy, it is very possible that we simply cannot handle any form of human interaction at the moment. Give us time. Don’t be afraid to call or text again before you hear back. And please, please, please don’t expect a thank you card if you do something nice for us. Some people can stay on top of that in the midst of a crisis. I am not one of those people. The thank you cards for our wedding gifts are still sitting in a box in our garage, for goodness sakes! Please don’t take a lack of response as a dismissal of what you have done. Every single thing you do to support us during this time of life is incredibly appreciated!

4) Your Pain Still Counts!!

FFoHP: I can’t tell you how many times someone has said to me, “I know it’s nothing compared to what you’re going through…” I have heard some variation of that comment from so many friends and family members when they are talking to me about what is going on in their lives. People, please don’t feel the need to be dismissive about your struggles or pain just because my situation may be more dire. Your pain still counts! Just because you may not be facing the possible loss of a child and a prolonged separation from someone you love doesn’t mean that what you are going through isn’t valid or that I’m not interested in hearing about it. In fact, I feel quite the opposite! I crave hearing about your life! It makes me feel like I’m not sucking the life out of our relationship with all of my own drama. It allows me to focus on something other than my current circumstances. Please know that I am NEVER inwardly comparing your struggles with my own! Are you having a heck of a time potty training your toddler? Tell me all about it! Are you bickering with your spouse over stupid stuff? I’d love to have the opportunity to share that struggle with you. Are you frustrated with your job? Feel free to vent to me. Pain is pain. Struggle is struggle. We are all in this together. Don’t hold back because this time in my life may look harsher than it does in yours.  Allow me to be there for you, too.

HP: My advice is simple…Keep asking others how they are doing, and then take the time to listen to their responses. Allow yourself to temporarily forget about your own issues, and immerse yourself in encouraging someone else. Just because you are overwhelmed with life, doesn’t mean that God isn’t still desiring to use you in the lives of others.

5) We All Do Pain Differently

One of the things that I absolutely love about our Heavenly Father is how uniquely He has created each and every one of us. But sometimes it may confuse or frustrate us when we see people react to life so differently than we would. Where someone else would cry, I may laugh. Something that wouldn’t even be a blip on someone else’s radar may cause me to lose sleep for days. In my opinion, rarely is there a right or wrong way to react to pain (as long as we try not to lash out at others). Please do your best to refrain from judging someone’s reaction to what life is throwing at them. It may seem irrational or insensitive or downright strange. But you cannot possibly know what is going on behind the scenes. Just because I may smile or even laugh when the doctor totally changes my son’s diagnosis, it does not mean that I am taking the situation lightly. Conversely, if I break down sobbing when I can’t find something I’m looking for at Target, I’m not losing my mind. Allow people to react how they need to react. Eventually, they will hopefully come back to a place of rationale and sanity. But that will still probably look differently for every single person facing a hard situation. We handle life differently because we each reflect the character of God differently. We need to try our best to embrace those differences, not harbor judgment or resentment about them.

So there you have it…a very basic, simple guide to how to interact with hurting people. I hope that this helps at least one person, hurting or not. As with everything and everyone we face in this life, the basic principle remains the same: be as much like Jesus as you can. That may not be very deep or eloquent, but it is truth.

“I Want to See You Be Brave”

It has been an extremely trying month for the Fulford family. Our perinatologist decided that it would be best for me to relocate to California by 28 weeks of pregnancy so that I would be nearby the children’s hospital should intervention be needed. While Ben and I knew this move would eventually be necessary, we had hoped that we could wait until closer to 34 weeks. But because the doctors are still baffled by Baby J’s other complications (namely, the fluid around his lungs and the swelling in his forehead), the official medical opinion became “better safe than sorry.” We had three weeks to prepare for the move. While we were so thankful for the advanced warning, our awareness of what was coming was often paralyzing. My husband, who is a fairly stoic man, cried every single night leading up to our relocation. The reality of our separation was emotionally crippling…still can be at times. But what choice do we have? This is what has to happen in order for our family to have the best shot at being whole and, eventually, healthy.

As my husband and I keep reminding each other, this is only a season. In the span of our lives, our marriage, and our parenthood, this is merely a small blip on the radar. While we never anticipated all of this when we decided to try for baby #2, God knew exactly what His perfect plan for our family would entail. Therefore, I believe that He has been, unbeknownst to us, preparing my husband, my son, and I for this separation. One of my prayers is that He would show me how He has been working behind the scenes to eventually use this for our mutual good. But let me be honest…this totally sucks. I hate being away from the man I waited 29 years to meet and fall madly in love with. I hate crawling into an empty bed at night. I hate that my son can’t be with his best friend every day. I hate all of the annoying planning that has to go into every single Skype date or trip down to visit. I hate knowing how alone my husband feels every time he walks into our home. It breaks my heart. Even as I type this, I am wiping tears off my iPad.

But I am reminded of the lyrics of a song my son and I often dance to. It has become a family motto of sorts. Sarah Barielles (sp?) has a song called “Brave” that has the line, “Show me how big your brave is.” I feel like this is exactly what God is saying to my little family right now. And because He promises to never leave us, our brave can be much bigger than we think. We can do this. We don’t have a choice. But I DO have a choice how I live each day of this separation from my husband and my home. Am I going to let myself be continually overcome by bitterness, sadness, and discontent? Or am I going to choose to be brave and find new ways to serve the Lord, my family, and others while I am here? This doesn’t mean that I won’t have to fight back tears, anger, frustration, and fear every single day. But I don’t want to miss out on the blessings that I KNOW the Lord has in store for us during this season of life.

And with this motto in mind, I want to challenge you. I think each and every one of us has some area of life where God is wanting us to show Him how big our brave is. Not because we can muster up the courage on our own, but because His word promises us that He will be there regardless of the outcome. Joshua 1:9 says, “Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.” This was the verse we chose to use at our firstborn’s dedication. Little did we know how heavily our family would have to lean on this truth. So what is it for you? How have you been letting fear win, and are you willing to be brave and step out to take that area of your life back from the Enemy? The size or seeming severity of the situation is irrelevant. Whether it be deciding to step out and take a chance on a new friendship or simply smiling at your husband when he gets home from work…it requires an extra measure of bravery. If you feel a tugging on your heart in an area of your life that you want to change, I encourage you to show me how big your brave is. And if it requires bravery, chances are it could have some consequences you don’t want to face. But if it is something God is asking you to do, I guarantee you that it is more dangerous to ignore it than to face it. Do you need to ask your husband to consider marital counseling? Do you need to reevaluate how you spend your money? Is there a relationship you need to either pursue or step away from? Do you have a passion you’ve been hesitant to pursue? Do you need to smile and shake hands during the greeting time at church instead of taking a potty break until the service starts back up again? (Can you tell that one is a bit personal? Lol.) If you’re not sure where you are lacking bravery, take some time to think about it. I guarantee you there is something.

Will you join me in being brave? Let’s follow my sweet little warrior baby’s example and fight every day to live bravely, regardless of our fear.