Author: Hannah

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

PICU Pick-Me-Up

Hannah

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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faith, grief, suffering, trials

Look Up

Hannah

It was 4:00 in the morning when I left the hospital, and as I hit the first traffic light, the dam that had been holding back all of my fear, anger, and desperation crumbled into a million broken pieces. Tears coming from a depth beyond understanding carved slick rivers down my neck and pooled in my shirt.  I was aware my car was drifting between the painted lanes of the empty interstate, and I glanced for blue lights that would assume I was drunk.  My voice scraped raw as I screamed my questions to a moonlit sky, daring His promises to be kept.

Knowing my other little ones were tucked sleeping in a quiet house, and needing to do something tangible that felt productive, I pulled off into the only store open at this desperate time of morning.  Despite trying to slow my heaving sobs in the parking lot, hot drips still occasionally seeped from my stinging eyes as I wandered the empty aisles.  I chose a few items mindlessly, that I thought at the time would bring comfort, and I trudged my way to the lone check out stand with a flickering light.  A slight embarrassment prickled over me as I became aware of the frightening sight I must be with my blotchy face and swollen eyes.

The checker grabbed my things and began swiping them across the counter without looking up.   “How are you today?” he beamed. “I’m ok.” “That’s good,” he replied.  He continued to ring up my things and take my payment without ever making eye contact. As I grabbed my bag and turned to leave, he swung the hammer one last time.  “Have a great rest of your day!” 

If you have spent much time around me, you may have noticed that often when someone asks me how I’m doing, I don’t ask the same question back.  It may come across rude.  It is not because I don’t care though, it is the exact opposite.  I don’t ask because I either know that that person was just asking to be polite, and they don’t really want the true answer from me, or because I know that I am not at a time or place I can truly give thought and caring to their answer.  I ask how someone is doing because I sincerely want to hear their heart, and not just the glossed over “I’m fine, how are you” that we all are guilty of giving sometimes.  I’ve learned to pick out the people who honestly want to hear how the real me is doing, and the people who would be completely uncomfortable if you let them see beyond the surface.

When I am standing in line at the grocery, I know that there may not be the time for me to be a listening ear to someone’s bad day, but on the other hand I do not want to ignore the person in need of some encouragement. If I notice a rude or grumpy employee, I will leave them with an “I hope your day gets better.”  They didn’t have to share what is weighing on their mind that day, but they will know they are seen and given validation.  I will not ask you how you are doing or how your day has been unless I authentically have the heart to hear the good with the bad.  I’m ok with you taking the time to tell me what you are struggling with, and will not make you feel ashamed for not finding the good in a new day of life.  The truth is that life is hard, and we should stop conditioning each other to put on a brave face and pretend everything is fine. 

I challenge you to stop your robotic motion and your scripted lines, and look up.  There is a world out there of hurting people.  People who in the sticky messes of their daily lives may not need you to spend an hour listening to their problems, but need to know that they are not invisible, that their pain is not ignored, and that we are all in this together.



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When Mama Can’t

Hannah

There is this moment when you first look upon the fresh, new face of your newborn and you instantly know that you would do absolutely anything to protect them, to keep them well and happy. Honestly, in that moment it is hard to believe anything bad could happen to them.

When Jacob was a toddler, he was very sick.  We were young first time parents sitting in the children’s hospital in a city far from home, watching the sunken eyes of parents shuffling in and out with fragile, bald children, and we were terrified.  As we checked off each appointment and treatment though, we grew confident in what could be done for our son.  We knew that the hours spent watching him be poked dozens of times, and the flow of medicine that left him cranky and sick was serving a bigger purpose.  We knew that the pain he was going through was helping him, and so we pushed through it to get to healing.

I never imagined there coming a day when we wouldn’t know what to do for him, or that there might not be an option to help him get better.  Parenting is a scary venture, but I think to some extent we always believe that with God’s grace there will never be anything we can’t find hope in.  We believe there will always be some kind of answer, something we can do to protect our children and help them heal. Until there isn’t.

I am standing in this hard place, wondering what it is that God wants me to understand through what seems an endless season of uphill battles.  I’m looking at myself and wondering if I will still see Him as good if we don’t get the answers we are asking for. It’s a painful thing as a parent to offer empty hands, to stand knowing that there is nothing you can do to fix this, that this pain they are enduring might be a path to healing, but this time, it might not be.  We might endure this agony and still not get  the outcome we pray for.

I can keep praying for the situation to change, and I may be crushed by the answer. Or I can pray for God’s nearness, whatever the answer may be.

Please add your prayers to ours; we will never stop praying for healing, but most importantly let’s pray that pain would not be wasted, that the story of grace would triumph in our hard, and we would be gentle and gracious as we are changed.

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The Bottom

Hannah

“When you think you’ve hit the bottom, then the bottom gives way… when you fall into a darkness no words can explain… you don’t know how you’ll make it out alive… Jesus will meet you there.”

The words to this song by Steven Curtis Chapman are the groanings of my heart right now.  I fight, claw my way to the light to grasp hope, and still sometimes in the struggle I let my ear be bent that it is hopeless, that the shuddering gape of pain is stronger than the will I have to fight for more.  It is rare that I don’t have words to illustrate my soul, but somehow, that’s where I’m finding myself right now;  speechless, burning, afloat in a sea that renders me flailing, gasping, waiting for rescue.

We are facing things I never dared to imagine.  We get like that, don’t we?  Confident in ourselves that certain things will never touch us.  Thanks for the dose of reality…

How would our hearts even know what to pray?  Mine doesn’t, and people don’t want to hear that.  I am in one day at a time mode; focusing on the next thing, and then the next thing.  There are promises I am clinging to; I know I won’t be left here in this valley alone. I know He will meet me there, but the waiting is tough.   

Please, dear community, pray us through this.  We know in our hearts that beauty comes from ashes, but we have a hard fire to battle first. 

                 Steven Curtis Chapman~ “Jesus Will Meet You There”

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Sitting in the Middle

Hannah

This morning we sat in the plastic folding chairs of our Life Group, which felt suddenly hard and uncomfortable in the ear-splitting silence that had come over the packed room of people.  I tucked my chin to disguise my tears, and the entire frame of my eyesight grew crowded with the feet of the people surrounding our two chairs. In that moment, my emotions were confusing.  Frustration, embarrassment, and because no other word could describe it, resentment.  Not at the people around me, but I felt so discouraged at being the chair in the middle.  Once again, hands were laid upon us as we stood in the middle of tragedy; broken, weary, with the arms of our community holding us up.  I am tired of being the one that needs holding up.  It feels like season after season after season of hard has kept us on the defensive, treading deep waters and relying on the people around us to carry us.  I am ready to be the one who gets to give instead of always being on the receiving end.  It feels selfish, uncomfortable, and humbling.

Humbling…maybe that’s the buzzword.  It’s not comfortable to be vulnerable, no one likes to be needy.  On the flip-side, isn’t that what we are created for?  Community?  Yes, I’m sure of it; we weren’t intended to carry our burdens with our own strength.

Perhaps in this long season, God is waiting for me to learn to surrender to being vulnerable, to gracefully accept the help that He provides.  One would think that sitting back and letting others tend to your needs would be the easy part, but we groom ourselves to be independent, self-sufficient, mighty in what we can handle.  It takes grace and humility to learn to receive with open hands.  This is something I first learned from Kara… she implored us all to work at letting people help, at tending to their hearts by letting them do something for us.  Still, it’s easier said than done.

We are immeasurably blessed to be surrounded by all the feet in that room.  Right from barely knowing us, this body of believers has jumped in with both feet to love us, pray for us, and fill the gaps that we have needed filled.  They are the gospel in human form, who am I to let my stubbornness stand in the way of letting community be exactly what it is created to be?

For now, my seat is in the middle. I am weak and struggling and needing the strength and prayers of my people to carry me through. I am confident that one day I will get to stand in that outer circle.  I will get to be part of the army that reaches out to link arms with a wounded soul and helps to carry them out of the valley.  While I’m waiting, I’m learning to sit, to breathe deep in the compassion that is poured over us, to accept with a humble and thankful heart the many blessings that have been extended, undeserving, to see us to the other side of this dark storm.

How does it make you feel to be the one needing help?  Who are the people that are there for you when you’re going through something hard?  What stands in the way of you opening your hands to the help of those who offer?

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faith, family, New Year's, suffering

Hoping for More

Hannah

A year of dreams and magic and smooth sailing, less struggle and more blessings; that’s what we’re all hoping for, right?  I imagine we all felt the same at the beginning of this year too; high hopes for 12 months without conflict or illness, but then not too far in, we started facing disappointments and hurts, and before we knew it we were scraping by the months, just trying to survive, determined to make it to the fresh start of a new year. Suddenly we are at the end of a string of long, hard places, clinging desperately to the fray and looking up for a stronger, longer rope, just to realize that our safe passage isn’t guaranteed.  That those hopes to slip through unscathed are just that, hopes, and the days ahead of us have just as much potential to leave us burned as the barren months behind us did.

 To be honest, I held my breath for it too.  For the clean slate, the fresh start; the promise of a year filled with goals and newness and such determination for good, that surely this would be the year to whisper about, the one that brought great good.  Well I shudder to admit, but as we rounded the corner of the end of December, 2016 kicked us in the gut before we even crossed the threshold.  Or maybe it was 2015 getting one last punch in. Either way, we already know this year isn’t starting with the expectations we placed on it.  In fact, I flat out didn’t even want to celebrate it; dreaded this night and the tears and the pain and the reality that once again we stand in a place where we have no control over our lives.

But you know what… hanging onto to our own ability to control our lives is what sets us up for heartbreak.  I have held too long. Even when I know I can do nothing to help myself, I have been hell-bent on self preservation.  That’s not what our Father asks of us.  He asks simply, gently for us to open our hands… to surrender our lack of faith and trust that even when the weight of the world threatens to crush us, He will never let go.

There are no guarantees for this year to come; our dreams may crumble, our relationships disappoint, our health fail, our people leave us, but we don’t have to be sure of the future to be sure of our security through it.  So lean with me, press into whatever is coming, walk into this new year with a brave heart and a determined faith, because we don’t need to know what’s ahead, only Who is behind us.

I knew tonight I would be standing at the edge of this new valley, looking out over the unknown, watching from the outside as everyone else was sharing the joyful moments of ringing in their new year, while I stand holding broken pieces.  I know I have a choice to let fear and sadness overwhelm, or to trust that I can free-fall into the unknown with the confidence that I will never hit the bottom.  Never.

I can be thankful for all that has happened, because in the end, that’s what my faith is made from.  I know that whatever is hard in 2016, He will work for good.

So happy New Year, my friends.  Let Him make your broken so, so beautiful.

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The Smile That Broke Me

Hannah

Yesterday I fought the urge to pick up the phone and cancel, and the afternoon sun found me shuffling across the cement, a small toddler hand tucked into mine to face the day.  The sky burned a brilliant blue, but my legs were heavy, my heart clouded.  We passed an older gentleman and his wife leaving the building, and his eyes immediately met mine as a broad smile flashed across his face. In that instant, a small pool of tears suddenly spilled across my cheeks.  Maybe it was exhaustion, maybe hormones or pain, or maybe it was that this world has felt mighty heavy lately.  Maybe it was anticipating that today we would say our final goodbyes to a man of strong character; a father, a husband, a son… a friend, a brother whose life was senselessly cut short by the suffocating theme of violence and hate that peppers our daily headlines.

Whatever it was, it was a moment of humanity; a reminder that we are all just trying to make it, that we all leave our homes with a swallow of uncertainty in our hearts, and we long for safety, for compassion, for love. 

This world isn’t going to change.  In fact, it is going to get worse, but when you put on your shoes and your big brave face to confront the moments ahead of you, remember the impact a simple kindness can bring.  Remember that we are all travelers here, facing the fears that lie on the horizon, and longing for our forever home.  I will still drop my kids at school whispering prayers in my thoughts, telling them if I don’t see them later I will meet them in Heaven, because frankly these days are dark and uncertain, but I know in the middle of the things going down that something as simple as a well directed smile can bring a warmth to a cloudy soul, a promise of hope and of enduring love. 

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faith, grief, miscarriage

Sixlet

Hannah

When Mark and I were young in marriage, we had no trouble agreeing that we both would be happy with two children.  We had a strong, adventurous son for our first, experienced a miscarriage when we started planning for our second, and then were elated to bring a gorgeous, healthy baby girl into the world.  The perfect pair, a matched boy/girl set; we had what we wanted.  Then, somewhere down the line, up to our ankles in parenthood, we started itching for another, and joyfully welcomed our second daughter.  Our next baby, we agreed, would be adopted, and we started that journey, which took a sharp right turn and brought us through fostering, and unexpectedly, but joyfully welcoming another biological baby of our own.  We agreed that she would be our last.  That’s the thing though, our best laid plans are ever moldable by a God whose plans are better.  Giving our youngest daughter back to Jesus was the most heartbreaking and life-changing moment in our lives so far.  It caused a shift in our paradigm, an about-face in our priorities.  We realized that in the ranking of importance in our lives, our children are one of the most precious pieces of our story, and our hearts are drawn to gather them around us in a big, loud, challenging, loving, fulfilling clan of family togetherness. From that point, we were no longer daunted by the thought of a big family (well, let’s be real, MARK was no longer daunted; I grew up in a family of 9, he is an only child, it was more of an adjustment for him). We decided by way of biological children, and adoption, we definitely want to grow.

It’s funny how everyone else knows what’s best for us, right?  At the mere mentioning of having more children, we’ve had friends and family who immediately tried to discourage us.  We should be grateful we’ve made it with the healthy kids we have, we shouldn’t risk putting my body through any danger, we should not put our children through anymore big changes, or take on the financial responsibility in such an expensive world.  I hear ya, and I try to see where you’re coming from because surely this is you just trying to protect us. I love that someone said it’s ok that people don’t understand your journey, it’s not their journey to understand. I don’t have the answers, and I know it seems scary, or even crazy, but I’m trusting God to do it. I truly believe He is the one that has placed this desire in our hearts, and if He called us, He will equip us.  I’m resting in that.  I don’t have to know how or when, I just have to believe He has our best at heart.

After some of the responses we have been met with when we have shared our enthusiasm to grow our family, we decided to simply sit back, keep our plan in the hands of the One who knows it best, and let Him quietly take it from there.

With the physical challenges I have faced over the past few years, we had come to a place of accepting that our future children will come from adoption, and not from me.  That was a hard place to reach, not because we don’t want adoption, because we absolutely, wholeheartedly want that to be part of the story, but it’s a big chapter to finish, and I was still filled with desire to carry another baby of our own.  I spent months wrestling, in fact praying that God would take this desire from me, because it was so painful to hope for something that would never be.  I did not understand why He would let me have such strong desire, but not allow it to be fulfilled.  It was a dark and powerful struggle to come to a place where I could completely submit that, hand over my desire, and trust the outcome would be gentle to my aching heart.  It brought freedom though, and excitement for how He is going to work.

This summer wound down with our minds refocused on the legwork of adoption. We started drawing up plans and timelines and praying for the fatherless that we hope will someday be part of our quiver-full.  Imagine our surprise then, when against all the odds that had been given us, we were staring at the very realness of another little one… of our own

Coming in 2016

As we drove to Kansas to throw a baby shower for my little sister, who was expecting in a few months, I squealed with delight at the thought of finally getting to share a pregnant picture with someone so close to me, something I had dreamed of.  We would get to raise our babies being the same age for most of every year; we were so tickled.  Even Mark, who is usually slower to give to giddiness, was openly excited and marveling at this miraculous blessing that had been given to us. 

Pregnant Together

I am terrible at keeping surprises, and t was difficult for me to wait until we thought it appropriate to share with the other kids.  They eagerly shared our enthusiasm and excitement. You can watch that hilarious conversation here:

We began to shift our thoughts to planning for the big changes we would find in 2016, with Mark retiring from the Air Force at the beginning of the year, and then welcoming the little one we affectionately began referring to as “Sixlet.”

Being pleased that I actually felt better during early pregnancy than I had in a very long time, I was a bit alarmed one day when my hot flashes came back with a vengeance, and I started cramping. I already had an appointment with my OB the next day though, and she eagerly assured me everything looked great, and shared excitement that this truly was a special gift.  I was happy for the good report, but something still didn’t sit right, and I couldn’t shake a feeling of unease.  I whispered prayers through the moments of my day, praying protection and health over our little one. 

The deep of that night woke me with excruciating pain in in my back and legs.  Terrified, I ran to the bathroom, but besides the pain, nothing seemed unusual.   I was awake most of the rest of the night, unable to lie still or get comfortable… moving from room to room trying to relax the pain away.

The next morning, Mark was away early, in a mandatory course preparing him for retirement.  It was in the early hustle of breakfast and packing backpacks that the crimson slashed through the hopes of my future.  Somehow the kids knew.  They read the shadows of my eyes and the sigh of my spirit on the drive to school, and one of the oldest asked the brave, unanswered question… did our baby die?  My heart knew, but I kissed them away and told them to pray, and reminded them that no matter what, Jesus would walk with us. 

The only communication I could have with Mark was by text that day; he couldn’t escape his class, and for the second time, I sat alone in a cold room staring at a dark ultrasound, void of the flicker of life.  While I waited to be taken back to my room, they sat me in a hallway outside the ultrasound rooms.  I sat in paralyzed agony, watching woman after woman stroll to the exam rooms, plump, ripe, life-bellies cupped beneath pregnant hands.  I bitterly scowled inside, already hurling the questions that I knew I probably wouldn’t get answers to on this side of eternity.

Hours huffed by, as it seemed everyone was avoiding being the one to tell me what I already knew.  I grew restless and frustrated, and by the time there was nothing left to do but tell me, there was no comfort, no apology, just facts, and all I wanted to do was run.  I texted Mark the words that spilled his glass half-full, and drove mindlessly into a gray afternoon to gather up my little people and begin a life without Sixlet.

I was having an impossible time sorting out my emotions, knowing that if I dwelt in anger, bitterness would take me places I didn’t want to go, but finding it very hard to accept that another loss, another shattered dream was part of a great, good plan for my life,  Knowing I had to take a stand against letting this destroy me, I sat alone in my car and loudly starting repeating, “I trust You.  I know You are good.  I know there is a reason beyond my understanding.  I trust You.” I hoped the enemy could hear me, but not see my heart, because in fact I was preaching to my own battered soul, trying to convince myself.  That’s when the song “Blessings,” by Laura Story came on the radio, and I turned the corner to see a brilliant, color blocked rainbow streaked across the gray horizon.

Watching precious life bleed away, tiny footprints slid from safety, never to grow bigger, is a soul-stopping grief, but my God has not forgotten me. He has promised not to abandon me, and to give me the future I hope for.  It’s inexplicably hard, and some days, I hear the lie that it’s only fitting that my story end with loss, but I refuse to believe that. If this is the journey I have been called to, then I am going to walk it out, and I choose to believe that what He has for me is greater than any of the pain.

It was so hard to tell our little people that the little brother or sister they had been waiting for had gone straight to Heaven.  There was much sadness and questions we couldn’t answer, but we did what we do, we celebrated.  We worked together to make cake and special balloons and thanked Jesus for holding our hearts, for holding our babies, for making us stronger than ever through our weakness.  We celebrated for the reunion to come, because friends, it is going to be amazing.

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Uncategorized

Intentionally Intentional

Hannah

In high school, I kept a journal of sorts; mostly because I enjoyed decorating the cover. I had been deeply hurt by someone close to me in my younger years when they discovered a journal in which I had scrawled my deepest thoughts and frustrations.  I was humiliated and disgraced for having written those things down, so after that I didn’t write down much of what I was thinking.  I took time to write inspiring quotes I came across, Bible verses I wanted to remember, hilarious things my friends’ said, but the one thing I regularly took time to write was a list of goals.  I would draw out columns and write my goal, how I planned to accomplish it, and then a blank column to write about my success of the goal. They related to grades, friendships, sports… nothing life-altering, but kept me on track.  I am a list girl, and there is something so satisfying to me about making check marks.  Like seriously, yes, I add extra things to my list that I’ve already done, just to cross them off.

One day, sitting in science class, another teacher happened to see me doodling in my journal, and asked if he could take a look at what I was doing.  After flipping through the pages, he said something that has stuck with me into adulthood.  He told me to always keep writing down my goals; that people who write their goals are the people who achieve them,

In a life of keeping up with kids, jobs, extracurricular activities, a home, church, writing, and a medical conditional of the energy-sucking, strength-gobbling, painful, discouraging variety, it is easy to find myself caught in a tumble-dry cycle of surviving the day to day ordinary that must be done to keep the wheel turning.  I remember in the aftershock of losing Ellie, thinking I never again wanted to rush my children to bed, turn down a request to read them a book, or make them wait to tell me something. I never wanted to miss a moment and risk having regret… but then, at that time I didn’t know life would continue to throw big, life-changing waves in my course. I didn’t know I would face days of having nothing left to give.

 In these days of new and refining challenges, I am finding it more important than ever to intentionally create moments that etch lasting, joyful memories in the hearts of my little people… in a way, a “list of goals,” to make sure I am taking the time to stop and pause these instants that are but a breath, and yet, such a lifetime.

This summer we decided to starts making a bucket list for each season.  There are always a number of things that we eagerly look forward to with the changing of the weather, and so we sit and brainstorm a mess of ideas, our hearts pounding and our mouths racing as we blurt out all the “must-do’s” that we can dream into being, and somehow plop them into an organized  guide to help us remember to slip these extraordinary moments into our ordinary days.

Summer Bucket 2015
Were there days I messed it up?  Days I was too tired or too weak or too scheduled to follow through with what we thought our day would look like? You bet.  But we didn’t quit.  We kept pecking away at that list, even to the very hems of the Autumn weather, and eventually each idea that sprayed across excited lips became a time and a place, a memory that took shape and engraved all sights and smells and emotions across the planks of our remembrance.

Let’s remember to be intentional.  Make a list, set a goal! Don’t wait until tragedy to start living like you mean it.  Make moments, make memories, make an impact.  Even something as simple as chasing down the ice cream truck is taking back space in a heart that needs it. Take back those spaces, push out the fear, and the struggle, and the pain, and replace it with a moment of delight.  Those memories? They’re forever.

And now… a little photo dump of our summer….

My biggest, picking from the garden!
Sunscreen all around!

Egg Yolk Tattoos

PJ’s all day!  Which may have been…. staying in bed all day?

Camp out!

Beach face?

Homemade pizza!

Ok, hugging a wookie wasn’t exactly on the list, but you have to admit that’s one for the books 😉

Next up….FALL!!!!! What’s on your bucket list?!

Please leave me a comment, it lets me know you’re listening!
child loss, faith, Jill Buteyn, Just Show Up, Kara Tippetts, Mundane Faithfulness

Showing Up

Hannah

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.

Isabella

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.

Ellianna

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.

Lily

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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