Child Loss Grief

The Weight of the Wait

It has been more than a decade since I watched a crowded room of doctors and nurses perform CPR on my baby girl.

180 months since I held her close as her soul danced across the veil of eternity.

5479 days since I set her down for the last time and my heart cracked wide open.

It’s somewhat curious to me then, that every year as this date ticks near, my heart seems to know it whether I’ve consciously realized it or not. Like an unseen blanket, laden with weight has been wrapped around my shoulders, pressing in a deep sadness that can take me some time to recognize.

Every year as this day returns, I feel that blanket settle again—heavy, quiet, and utterly familiar. In the moment grief arrives, I don’t always have the words to explain it. I just know the ache. I know how it moves through me like weather that won’t ask permission. Some mornings it wakes me before the sun. Some nights it lingers like a candle burning down to its last wick.

And yet, even here—especially here—I have found that God is not afraid of my tears.

I used to think faith meant I would somehow get stronger on schedule, like a muscle building itself because I “should.” But love doesn’t work like that, and neither does sorrow. Faith didn’t keep me from breaking; it brought me to my knees. And in that place, I learned something I can’t unlearn: the Lord does not only meet us in the moments we feel composed. He meets us in the moments we can’t breathe properly. He meets us when our chest is too full and our hands don’t know what to do with the tenderness that’s left behind.

There are days I want to question everything. Why did it happen? Why her? Why not later, or sooner, or not at all? But even my questions feel like prayers. They are honest. They are the kind of conversation you only have when you truly believe someone is listening.

So I bring my whole self to Him—the anger I try to hide, the longing that won’t be quiet, the memories that sometimes comfort me and sometimes wound me again. I bring the moments I replay and the things I wish I could undo. I bring the silence too. And when I can’t find the right sentence, I bring my heart anyway.

Because the truth is, my faith doesn’t deny the weight. It carries it.

God has not promised that this side of heaven will always feel gentle. He doesn’t pretend that loss is small. Scripture never insults grief by calling it “not that bad.” It names sorrow, it teaches lament, it acknowledges that the heart mourns. And still, it speaks—steadfastly—of hope that doesn’t collapse when the world shakes.

I have learned that hope is not the absence of pain. Hope is what remains when pain has already done its work.

Somewhere in the deep places where my prayers echo back to me, I hear His invitation: “Come as you are.” Not as someone who has healed enough. Not as someone whose story ends neatly. Come as you are—with the ache, with the questions, with the pieces you can’t glue back together. Come, and let Me be God in your weakness.

I wish I could tell you that my heart fully understands eternity. I wish I could say I never wrestle. But I have come to believe that love is not wasted, even when it hurts. There is a kind of devotion that survives tragedy—not because it forgets, but because it refuses to stop trusting.

When I think of little Ellie, I don’t only remember the ending. I remember the beginning too: the way she made joy tangible. The way her life made room for wonder. I remember her presence like a sweet fragrance that still clings to memory. And I believe the God who called her name can also hold her now—safe, unseen, and adored beyond anything my earthly mind can reach.

So yes, this day still presses its blanket over my shoulders.

But it also reminds me that I am not walking through it alone.

Every year, as the sadness returns, so does His faithfulness. Sometimes I feel it in a quiet scripture that arrives at the exact right time. Sometimes I feel it in the strength of a friend who shows up without asking for explanations. Sometimes I feel it in the smallest mercies—breath in my lungs, warmth on my skin, a sunrise that doesn’t ask me to be ready.

And sometimes I feel it in the strange, holy truth that even when grief is heavy, God is heavier in the best way—stronger than the grave, steadier than my fear, nearer than my deepest questions.

So I lift my eyes, even when they’re wet. I whisper a prayer I have prayed before: Lord, hold her. Hold me. Keep my heart soft toward You. And then I wait—because waiting, I’ve learned, is also worship.

One day, I believe, this veil will be torn open not by my strength, but by His. One day, the tears will find their purpose. One day, the years between “then” and “now” will be healed with a joy that can’t be measured.

Until that day, I will come to the Father with my whole heart.

I will not pretend. I will not perform. I will simply love, grieve, and trust—again and again—under the weight of a love that refuses to let go.

Because the God who carried me through the darkest seconds is still carrying me through the long, tender years.

And my baby girl—my precious, forever-loved Ellianna Grace—is not lost.

She is held.

brain bleeds, care packages, cerebral palsy, child loss, Child Loss Grief, endurance, family, hope, losing a child, picu, VP shunt

PICU Pick-Me-Up

As anniversaries and birthdays tick by,  I will never stop believing that those beautiful, inspiring, powerful 4 and a half months were meant for so much more; that such a short life was meant to be a catalyst for something exceptional.

So here I stand in the heat of another heavy July searching for ways I can use my little girl’s story to encourage kindness and inspire hope.  Well guess what, this one is not just on me… I’m laying this all out there because each one of you reading this has the power to make a terrible day a little bit better, to bring a flicker of hope to a hurting heart, and to keep on shouting that kindness matters.

One of the most trying things you can go through as a parent is having a critically ill or injured child.  Your world stops, and all your focus goes into every detail of the fight for more time with your little one.  I remember it uncomfortably clearly, but because of that, I can see a need that’s easy to meet.

On the 5th anniversary of standing in a crowded PICU room, watching my whole future change, I took a solid breath, and pressed the familiar button in a quiet elevator to be whisked to the 3rd floor.  Stepping off was a shock to every part of me as the colors and smells and sights all came screaming back.  I was on a mission though, for my brave daughter who fought on the other side of those doors, I could help bring a breath of grace to another parent shouldering the weight of the world.

My kids had helped me gather things throughout the weeks that we set aside for this very occasion.  It was easy to remember being a parent pacing across scuffed tiles between a stiff vinyl chair and a bed that contained a piece of your very being.  A parent who when asked, couldn’t actually remember the last time they had eaten an actual meal, a parent that spoke toward the ground so as not to exhale too deeply the breath of stale coffee that had sustained the 72 hours of numb awakeness  preceeding the current sunrise.  I could clearly remember being the parent that in each hurried bathroom break had wadded up wet, scratchy brown paper towels drizzled with disinfectant smelling hand soap and had desperately scrubbed at salt stained cheeks and sweat soaked shirt seams in hopes of concealing the fact that they dare not leave their child’s room long enough to run home for a shower.  I shook my head at remembering the emotionless nurse that had told me they weren’t allowed to spare me a Tylenol for my pounding head, but that I was welcome to check myself into the ER downstairs and have some prescribed by a doctor.  I acutely recalled the desperation coupled with simply surviving without having time to think about your own needs.  Well here is where WE can make a difference.

The kids and I put together care packages meant for the parents of each of the children in the PICU.  Took time to think through all the things I remember needing or wishing for during our long hours there, and tried to put together a smattering of things that would actually be used and appreciated.  I’ll share with you some of the things I came up with, and I hope some of you will run with it from there.  You can do as much or as little as you want.  It could even be just one good care package; I know that you will be making a difference in someone’s life during one of their hardest days.

If you decide to go spread some “Ellie Love” on your local PICU, I would so love to hear about it! You can reach me in the comment section, or by my email displayed in the sidebar.  Remember that whole “ripples in the pond” analogy?  This is one of those opportunities!  Get out there and spread some kindness and encouragement, make those small but meaningful moments spread joy in a way that’s contagious; that shouts the victory of the short but mighty lives like Ellianna Grace.

 

I grabbed an “adult” coloring book for some mindless distraction.  Something to keep you occupied that doesn’t require much thought.  Crayons break, colored pencils need sharpening, so I tried to play it safe with markers.  BONUS was coming across little LED clip on book lights. No more straining your eyes trying to use the dull glow of your phone because you don’t want to wake your sleeping kiddo.

 

Tissue that is not made from recycled sandpaper.  Or whatever it is that the hospitals use.  I realize they probably get a discount, but after the 37th time of scrubbing at your teary eyes and runny nose with those things, people start asking you how you got rug burn.  And seriously, look at th sweet message on this package of Kleenex.  They get it.

 

It’s safe to say a good majority of the meals a PICU parent has consumed were rattled from a vending machine with various pocket change, chased by some carbonated mess of sludge which is going to give them the mother of all sugar crashes later.  Its hard to be portable AND nutritious when doing this, but do your best to think outside the box of cookies, pop tarts, and potato chips.  Peanut butter and a spoon perhaps?  We love these fig bars because you get a decent serving of fruit, and they tend to fill you up for a good stretch of time.  Also think what you can do other than soda… something they can’t get from the hallway vending nook.  Again, not going to be the healthiest choices out there, but it is a good change to have something refreshing to snack on. The Werther’s?  Well those are just all out comforting, and perfect for keeping your mouth moist and your jaw doing something besides clenching.

 

GOOD gum.  Many of these items I was able to get at my dollar store, but a few things I specifically hit up the grocery instead, because quality mattered.  Imagine your breath already reeks from days blending into nights blending into days of eating whatever you can wherever you can, and usually washing it down with a steady flow of whatever coffee is most readily available.  Well then you’re talking to doctors and techs and asking questions of the nurses, and let’s just not have to worry about whether or not they can smell that you haven’t brushed in 3 days.  Splurge for a gum with a powerful flavor that’s going to l a s t.  I love the 5 brand flavors.  Especially their mints are super strong and not only wake you up and freshen your breath, but you’re more likely to spit it out because you’re tired of chewing rather than the flavor having worn out.  Again with the eating and the coffee comes along these handy little disposable mini toothbrushes, pre-loaded with toothpaste.  Come on.  Those have to have been invented with the hospital parent in mind.  CHAPSTICK!  Basically my security blanket, I think most women and some men would agree it’s always good to have some within arms length.  Excedrin tension headache is what I picked, but any similar product that’s going to fight a headache or an ache or pain could be a daysaver for one of these parents.  As I mentioned before, the hospital is too legally bound to slip you a few Tylenol, and most parents are probably just going to suck it up and fight through the rest of the day trying not to think about their throbbing head or aching muscles from standing vigil for 11 hours.

 

 

Hygeine.  Well, let’s take a poll about how many parents are stepping away from a PICU bedside to indulge in a hot shower.  That’s going to be basically… none of them.  Having a few things available that allows a parent to take a quick bathroom break and come back feeling a little fresher is  a valuable investment.  I grabbed packs of disposable body cloths (basically thick, better smelling baby wipes that you can essentially take a sponge bath with), hair ties or clips… because any woman like me is never going to be able to find one when she actually needs it, and dry shampoo.  That’s one of those inventions I would like to shake someone’s hand about.  It can go for guys or for girls, and when you’re skipping out on your shower for a few days, it’s really refreshing to be able to get your hair looking and smelling cleaner without much effort.
A deck of cards…. realizing no one may be in the frame of mind to be concentrating on a game, but they can just as easily be a stress relief used to shuffle and shift through idle hands.  ALCOHOL FREE HAND SANITIZER.  We have all noticed that around pretty much every corner in the hospitals is a handy dandy machine quick to eject a foamy mess that will kill most every germ, as well as the texture of your hands.  For a parent that has been in the hospital for several days or longer, that stuff starts getting really harsh on your skin.  If you can find an organic, non-alcohol hand sanitizer, get that in your care package pronto.  Of course I pitched in the brand I stand behind, which is Young Living’s Thieves anti-bac.  It smells amazing but not overpowering, and leaves my hands feeling smooth and refreshed in contrast to the goop so readily available around the hospital.
I packed each care package into a gift bag with a hand written note, not sharing the details of my journey, but letting them know I have stood in their shoes and hope in some small way these packages can make a few things simpler while they are fighting a bigger fight.  So get out there, find a PICU or a NICU near you and reach out.  It may seem trivial, but standing on those broken grounds, it’s the little things that fix the big picture.
In honor of my Ellie Grace, I will never stop saying your name, sharing your story, and spreading the love that you so easily coaxed out of everyone who met you.
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Amanda the Panda, Child Loss Grief, Christmas, Holidays, Sibling Loss, Thanksgiving

Holiday Fear

The weather is gearing up, the stores are busy overstocking for the season of holiday celebrations approaching.

As you plan out your feasts and decorations and guests, sit back for a moment and look around you.  There is a child grieving a mother, a sibling grieving a brother, a mother grieving a child.  While the rest of the world is a flurry of anticipation and excitement, there is a heavy ache in the hearts of the homes where a chair will sit empty this holiday.

The celebrations of family and love hold moments of heart-wrench for those who have a loved one no longer present in the gathering.  Look around you this season, I know you will find one of those hearts;  the one that sits quiet in the crowd, that listens with eyes closed to the laughter, wondering how things would have been; the one who avoids the holiday aisles altogether.  Reach out.  Be brave, extend your love, and risk touching a shattered heart in a way they desperately needed.

The first Thanksgiving and Christmas after burying Ellianna were the hardest.  Well, they all have been in different ways, but that first one… the first time I realized there would be no gift shopping, no cooking her favorites, no tiny traced hand prints on Thanksgiving turkeys… well that was the toughest; a holiday season I never dared to imagine.

Much of the facade faded away.  Suddenly the decorations and the perfect Pinterest meal weren’t what my mind lingered on; it was simply the being with the ones I loved.  It became a season of wanting deep memories; the slowing of sweet everyday moments. I could care less if we make a turkey and all the fixings, or just drag ourselves to feast at Golden Corral; the importance is our souls meeting each other wherever we’re at, reveling in each other’s company, savoring the joy of knowing you are making a memory that will long outlast the pumpkin pie.

This is the first time my family will celebrate without my little brother.  There will be heartache when his name isn’t in the secret Christmas gift drawing, there will be sadness when he isn’t standing there in a ridiculous apron with a fresh baked batch of “kitchen trash” in his hands.  What there will be is a coming together of the hearts that love him, miss him, and remember to stop and say “I love you” on this day, this moment.

There is something you can do for the grieving hearts around you.  For many, this is their first holiday season without a cherished person in their lives, and it’s not just in death, it can be a child experiencing their first holidays having to split time between mom’s house and dad’s house, a wife whose husband has chosen another place to live, and yes, the mourning heart that has stood at the grave of someone they held dear.  Send them a card, let them know you are thinking of them and how things will be different this year.  Give them a sweet ornament with their loved one’s name on it.  Invite them to your celebration so they aren’t sitting at home grieving theirs. Sign them up for a holiday cheer box (read about it here).  It means a lot.  In a season where delight and festivity spill from everything around us, there is a pain that you can help soothe.

Let me know how you’re reaching out, I’d love to hear where your hearts are reaching!

Please leave me a comment, it lets me know you’re listening!