Monday, July 18, 2016


Today I was supposed to write a lighthearted post about my high school reunion weekend.  Instead, this morning I opened my email and my heart shattered instantly as I read a Facebook notification email.  It was from a page that I follow, a page that has documented the cancer battle of the son of a friend from college.  Jonah was diagnosed very early on in life, and I think I found out a few months later, almost by accident.  Her ex-husband, a Facebook friend of mine, responded to a post of hers, and for some reason that blip in my feed caught my eye.  From there I put together the pieces, as I was not a Facebook friend of hers at the time.  She was a couple years younger than me, and while I know we interacted in college as we were both involved in InterVarsity Christian Fellowship, we were never particularly close.  But obviously when you see that someone is in need of prayer, all of that goes out the window and you just pray.

Jonah has battled all along, and for a while the tumors stabilized.  From what I can tell, with this type of tumor they just needed to keep them stable until he reached adulthood, at which point they would naturally stop growing and his brain would have already learned how to work around them.  So stabilization appeared to be the achievable goal at hand.  I could be wrong on that, but that is what I gathered over the last year or so.  His biggest problem for a while seemed to be putting on weight, as he was very, very small and painfully skinny.  They ended up having to get him a g-tube, and that changed everything.  He started gaining weight and became this thriving, chubby toddler.  He had the best facial expressions--wide eyes and the sweetest smile--and you couldn't help but smile back.

But amidst all of the progress, a couple months ago, he went for a routine scan and the tumors had grown.  At that point it appeared that they had exhausted anything that could help him here--even at a very capable hospital like we have--and for a short time, hope was nearly lost.  But then there was a specialist out of Boston that knew these kinds of tumors and was running a study.  They found a medication that they thought would work.  And by all accounts, it did.  He had to have an emergency scan last week when he came down with what appeared to be stomach bug, just to make sure the nausea wasn't related to his head.  Everything came back fine and the tumors were stable enough for what they expected.

But then this weekend, another issue he'd been dealing with, diabetes insipidus, quickly started causing problems.  As of yesterday he was in the PICU and things were serious.  But I never truly expected to see the post this morning that that sweet little boy had gone up to heaven.  He was only 21 months old and spent most of that time battling, and now his fight is over.  I'm thankful he's at peace, but my heart is beyond broken for his mom.

She was by his side through it all.  She was a single mom with two older kids from her marriage to her college sweetheart, but she put her life on hold as much as she could to care for Jonah.  Her strength was amazing.  I can't even fathom the loss she is feeling today.  Her little bright light is gone, and after spending countless hours caring for him, countless hours worrying about him and planning next steps, suddenly there is a massive void.  All of that is over and the only plans left to make involve a funeral.  It is beyond tragic to lose him, let alone like this in such a sudden and unexpected manner.  It's like, if the tumors would have eventually taken his life, it would have been tragic, but we all would have known he fought an extraordinary fight.  But like this...well, he definitely fought an extraordinary fight regardless, but this just seems unfair as it was so sudden that he never had a chance to show this part of his illness what he was capable of.  It's like being in a fist fight with one person and having someone else shoot you from afar.  I know this probably isn't the best timing for an analogy like that, given what's been happening in society lately, but I think it this case it's the best example I can come up with.  There was no defending against this.  It's just so sad and unfair.

Part of me feels bad for even feeling this bad, as I had never met him and haven't even seen his mom in person in more than 15 years.  But again, when someone needs prayer and you follow their story and identify with them as a parent, your heart gets pulled in.  Since my cousin passed away in April, I've struggled with the fact that I've basically been able to move on with my life because I live 12 hours away, while my aunt and uncle and all others closer to the situation are still deep in mourning.  It's not that my heart isn't with them--it is--but "out of sight, out of mind" tends to reign when life takes over.  And likewise, while I know my heart is so sad right now--I literally feel gutted--I know that I will eventually move on with my life while her entire life is changed forever.  The guilt over that is horrible.  I am so blessed to have my boys--no matter how crazy they make me--and I will certainly hug them tighter (assuming Jacob lets me near him).  And I know that's probably what Jonah's mama would want all of us other parents to do--appreciate every moment with our kids.  So I will try.  God help me, I will try.

But the idea that Jonah is no longer among us still hurts so profoundly.  I keep finding myself wanting to turn back time so this can be "fixed", and clearly that's not possible.  But that is instinctively what keeps running through my head.  With the announcement, she posted pictures of her cuddling him, in what I am guessing were their last moments either as he passed or just after.  You can see the sorrow on her face.  That image keeps running through my head...the agony of holding your baby for the last time while there is still warmth in their body, knowing they will never again open their eyes or speak your name.  It is any parent's nightmare, no doubt.

I think part of the depth of my mourning has to do with the knowledge that from this moment forward her life will never be the same.  It will always have that profound element of sadness, and as a human being it's so hard to know someone else will forever carry a burden like that.  She will figure out how to find a new normal, though it may take a long time, but nothing will ever feel the same again.  And as a mother it makes me so terribly sad for her, as a part of her heart is forever missing.  As I've said, watching my extended family go through the grieving process (even from afar via Facebook, their grief is VERY clear), it is horrible to think of someone else having to go through that process.  I guess the only (tiny) saving grace here is that so much of Jonah's life was a struggle--I think his moments of feeling great were probably few and far between, despite his many smiles--so it must do a little piece of her heart good that he is at peace and fully healed.  But that won't stop the rest of her heartbreak, and I'm sure she would still give anything to have him back so he had a chance to live a life free of pain someday down the road.  The hope of that is probably what kept her going each day, and now that is gone so suddenly.  She has been going full-blast for nearly two years and I pray she finds rest and peace to heal without feeling extreme emptiness.  How do you fill those too-quiet moments?  I feel like that has to be nearly impossible, but we serve a God who triumphs over impossibility.  All we can do is pray.

The tears welled up all day today, every time I thought about her loss and that the sweet pictures she used to post will be no more.  His battle was so inspiring, and to lose it this way when he was finally winning another part is so tragic and senseless.  He fought so hard and overcame so many odds, and I'm so sad that he won't get a chance to emerge victorious in the way we all hoped.  But he is victorious, up in heaven healed and whole.  But he leaves a hole down here that reaches far beyond his little world.  I do hope to channel my grief into trying harder for my kids, but the sadness and fear can be so paralyzing.  You can only squeeze your kids so tight or do so much to protect them, and when you get a reminder like this, it is so hard to process.  So my heart just breaks. 

Visit the Prayers for Jonah page and see that sweet boy's smile.  Keep this family (his mom, brother, and sister, especially) in your prayers.  Hug your loved ones and support research for childhood cancer.  I don't want to have to write about any more kids who suffer from this terrible disease.  There have been too many already.  Cures are needed and childhood cancers are underfunded.  I feel so helpless, but if this post gets a few more prayers out there and a little more awareness, that's something. God bless you, sweet Jonah.  Be healed and fly high.  

No comments: