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.
child loss, faith, Jill Buteyn, Just Show Up, Kara Tippetts, Mundane Faithfulness

Showing Up

In the haze of my aging and windblown mind, there has always been a particular message I heard in a church years ago that has come crisply back to the forefront of my thoughts.  It was a guest preacher, and he spoke about endurance.  He told of his wife in the ending years of her father’s life, how each time she got “the call” she would pack up and drive through the day or night to be there, to sit at the bedside and bring presence and comfort to her sick father in what were surely his final hours.  The thing was, this happened again… and again, and each time, instead of hesitating, or complaining, or doubting that he was really so ill, she would pack up and drive.  She was in for the long haul, unselfishly dedicated to endure for the love of her father, to be there when he needed her most.

For years this has challenged me, boldly questioned me— Am I selfless enough, brave enough to be the one to Just Show Up?

As I read through Jill’s challenge to write my own “Just Show Up” story, there was no delay in the sweet faces that came to my mind as I pondered who it is that has run with endurance to come along side me in the painful, most desperate moments of my story.

I first met Lily and Colleen when Isabella was about 3 years old.  Although she was growing strong and healthy after a precarious start to her life, we had noticed she seemed to fall often, and wanted to make sure we weren’t missing something. Her pediatrician agreed she needed to be evaluated, and as happens often in the military healthcare system, we were given a referral to be seen off base by a pediatric physical therapist.  We were immediately impressed with Lily’s skill and wisdom.  She watched Bella moving around for 5 minutes and knew right away what was going on and what needed to be done.  She also recognized a sensory processing disorder and was able to get Bella into occupational therapy with one of her therapy partners, Colleen.  The small, house-like building where the smiles of these two women greeted us weekly began to feel like home, and at the same time Bella grew stronger and we saw her start overcoming some of the challenges brought about by her 30 week delivery.


Water therapy with Lily

During this same time, we learned we were expecting our fourth child, and our Tuesday therapy visits came accompanied with a growing belly to count the weeks. One of the first questions in the door was always how me and the baby were doing, and then a pleased smile as my pregnancy progressed smoothly week by week.  Then, one cold day in March, I missed our appointment.  That morning Mark showed up with Bella instead, and as Lily came to the waiting room to get her, she teased with Mark, “Where is Hannah, that baby didn’t try to come early did she?”  I’m told Lily was taken aback, feeling badly when he admitted that yes, in spite of everything having gone well so far, I had emergently delivered our youngest daughter at only 29 weeks gestation.  At the time though, we were feeling confident; she was well taken care of in the familiar ambiance of the NICU, and we expected a similar, long, but positive outcome through another journey with a premature baby.

As hours faded to days, and Ellianna’s stay in the NICU became punctuated with hard news and complications, Lily and Colleen became more than our therapists, and their familiar faces and kind spirits grew friendship beyond the purpose for which they had first come into our lives.  We looked forward to seeing each other, kept in touch by text throughout the weeks, and sneaked in coffee dates when we could.  When we learned that Ellianna would have cerebral palsy, Lily knew what we didn’t, and pushed to have her enrolled to start physical therapy as soon as she was discharged from the hospital.  This teeny, tiny, 4 pound little girl, showing up to flex her muscles on the big red inflatable ball.  Who knew? Lily and Colleen also jumped in to help with her feeding difficulties, and Colleen was even willing to drive out to our home to get her started in occupational therapy so she didn’t have to be submitted to the noise and chaos outside the house so many times a week.

These two women were so steadfastly in our corner, fighting for the best for our little girl, and encouraging us through the frightening unknowns ahead.  I remember Lily saying perhaps Bella wasn’t even the reason for our meeting, but  that we would already have this in place when our littlest miracle came along needing it so badly.


As Ellianna’s brain bleed turned to hydrocephalus and surgery and shunts, I wanted to keep her home in the protection of my arms, comforting her pain and keeping her from more.  Lily knew better though, and she urged us forward, pushing Ellie to her limits to help her grow strength and gain weight, and even though my heart broke watching the tears of the struggle, I knew Lily pushed because she loved, and she wanted so much more for my little girl.

Our last hospital admission, when things were the darkest, bleakest bad… it seems silly, but I suppose I needed things to distract my mind, and I remember calling Lily’s office to tell her Ellianna was in the hospital and we wouldn’t be able to make it to therapy.  In hindsight, I’m sure we could have no-showed and no one would have blamed us, but there I was, trying to keep a calm voice as the receptionist told me Lily was with a client and couldn’t come to the phone.  When she asked to take a message, I must have been out of my mind, because I think I said something like, “Just tell her we won’t be at therapy because Ellie is in the hospital and the doctors don’t know if she is going to make it.”  I guess that seemed normal in the numbed hysteria of my mind, but I was told to please hold, and 10 seconds later Lily’s voice was on the other end of the line.  My explanation was jumbled, and probably less than a sentence long, but that’s all it took and Lily was saying “I’m coming up there,” and the line went dead.

This woman, assigned to us for her livelihood, to straighten crooked ankles and weak hips, dropped everything, walked out on whoever she was with and showed up in a way that may have saved my life.  I’m not sure how she got there so quickly (knowing what I know of Lily now, I probably don’t want to know), and I don’t know who she walked out on, though I hope they understood.  She burst into our tiny room in the Pediatric ICU and she stood there in the middle of a situation most people would not want to imagine, let alone wade right into.  She was there when someone came in and told us the CT scan showed 50-60% of our daughter’s brain was already destroyed.  Instead of fear or “I’m sorry’s,” she turned to us and said, “Don’t let that discourage you, there are plenty of people who live with half a brain and live well.  Don’t let them make you afraid.”  So I tried not to.  I knew if anyone knew this, it would be Lily, and she was the one from the beginning who knew what our little girl would need to fight and overcome, and had given her the means to do that.  Lily left that day with a hug that spoke more than words could, and the promise of continued prayers.  I don’t know that either of us believed yet that we would be saying goodbye.

As reality gave voice to my internal fears, and we watched Ellianna slip from this life to claim her true royalty, I sent a simple text to Lily, telling her Ellie was gone.  I don’t remember if I got a response, but what I do remember is that just as quickly as she had come before, she was there again. Walking into the palpable pain of a room split by this life and the next, Lily and Colleen were standing on that sacred ground with us, tear-stained cheeks and weary eyes.  I didn’t know what to do or say, maybe nobody did, but presence was enough.  I stood up, my lifeless daughter wrapped in a blanket in my arms, and I held her out to Colleen.  I cringed at remembering this, because really, she hardly knew me at the time, and here I just thrust a most uncomfortable situation right at her… but she leaned right in.  She took my daughter in her arms, this stinging, beautiful, scarred, and perfect reminder of the common thread of our lives, and she looked on her with every love a mother wishes for her child.  She didn’t complain or turn away from the discomfort of it, but she opened her arms wide, and in that moment these two women made a choice to embrace my hard story, to become characters in a heart breaking plot from which many others ran. I do not remember any of the words spoken there that day, maybe there weren’t any, but it doesn’t matter because what I do remember is that they were there, and that was all my soul could and needed to hear that day.

In the days to follow, as I avoided people and places and questions and awkwardness, our hour-long, twice a week therapy appointments dropped to half an hour once a week, and it was still a safe place to land. There were days, and still are, that I have to push myself because walking in to see the tiny room we used to nurse in, and the big red ball Ellie used to perch on is just so fresh and raw and I feel as if my million pieces will fall apart again, never to be gathered.  But these women, they see that in me; they read the gray or the green of my eyes and they know my heart without pressing me for words.


Colby, on the same big ball Ellie used at therapy

I wish I could say that was the only big trial, and the last few years have been a smooth sail of strengthening friendship, but what I can tell you is that again and again…and again, Lily and Colleen have shown up, both in the happiest celebrations and the devastating losses of life.  They have always given me the freedom to grieve, question, cuss, or withdraw without so much as a judgmental word.  They have never pressed me with advice or timelines or ultimatums, but have supported me wherever I’m at.  They cheer me on even when my dreams seem crazy, and pray me through the days I don’t believe I will make it through one more blow.  Lily and Colleen have chosen to see deeper into my story, to see that it is not just a story of loss, but one of healing, of beauty, and sustaining grace that can only come from the One who wrote my story.  They choose to remain in the cast of people throughout the chapters of my life, without expectation, without apprehension, but simply to Just Show Up.

Colleen and Colby

Lily working with Colby

OT with Colleen

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child loss, grief, Mothers Day

Seen and Unseen

I am struggling with what to say for Mother’s Day because it’s not just about my motherhood, but about my mom and the loss of her son, and it’s about the children of my friend Kara, recently slipping away to Heaven, and leaving them wondering what to do as their classmates create Mother’s Day crafts to bring home to a warm embrace. It’s about driving Kara’s van and thinking of the time she spent in that seat, speaking love and kindness into the hearts of her children, and the echo now in the silence of her absence.These losses forever change the innocence of a day that is supposed to be about flowers picked by tiny hands, and home-made coupon books for chores, and backrubs, and breakfast in bed.

There are mothers that long to be acknowledged, validated, understood by our tired eyes and ponytails and minivans, and insanely proud-happy smiles when we look in the faces of our little sweetlings.  There are also mothers unseen, with a sadness behind their eyes and perfectly vacuumed cars because the little ones that made them mothers have slipped from this life, leaving aching holes that aren’t filled, and often aren’t acknowledged.

Have a compassionate heart this Mother’s Day and climb into the shoes of a grieving mother or a motherless child, and just sit with them right in the middle of their tears; just be.   There is salt poured into an open wound on this day, and souls just wanting, needing to be recognized, loved, met where they are.

For all the mothers, seen and unseen, this day is for you.  Even separated by life and death, you are still a mother, you are.

For all the children  with hearts aching for the love of a mother, or grieving the loss of a mother, you are her baby, you will always be her baby, from now until forever.

Please leave me a comment, it lets me know you’re listening!
child loss, faith, hope, VP shunt

July 14

“How lucky I am to have something that makes saying goodbye so hard.” ~Winnie the Pooh

My precious, beautiful Ellianna Grace,

This day has been written in the scars on our hearts.  The fourteenth of July will always remind me that it was the last day I got to smooch your scrumptious cheeks.  I can’t help but remember the deafening fear that rose when I saw you slipping away.  That last kiss, last breath, last holding you in my arms.  I still remember the feelings of helplessness, and whispering screaming prayers that you would get to stay.  This day, this beautiful summer day will forever inflame the lasting scars that were torn in my tender heart.  But tucked within what’s left, the fourteenth of July is also an Ebeneezer, reminding me of the graciousness of our God in welcoming you into His arms; His healing of your every pain and struggle.  I can celebrate in knowing that you are whole, and well, and safe, and that after all my waiting is done I will get to see you again.  My story is not a story of loss, of heartache, or pain.  It is one of absolute Grace.  Pure blessings.  Answered prayers.
I love you indefinitely, my little girl.  Sometimes I touch the things you used to touch, looking for echoes of your fingers (Iain Thomas).  I long to breathe the essence of you, trace your delicate features, and tie ribbons in your hair.  Someday, my sweet Ells.
I will revel in every joyful memory I have of your precious life, and will live with the purpose you inspired me towards.  Someday I will hold my treasure again, and I am so excited to hear your giggle as I pepper your face with kisses.  The veil is thin, my sweet.
You are adored, cherished, held dear.  Your little, magnificent life has left a beautiful impression on so many hearts.
Until Forever, 
Mommy xoxo

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