Category: family

family

For the Love of Palliative Care

Hannah

For the better part of a year or more my weeks have had to revolve around appointments. With 14 separate specialists each handling a different aspect of my health, you can imagine how the calendar filled up.  Most of these doctors have done me well, and helped me cope with the different challenges of  having a degenerative neuromuscular disease, but the past several months have left me exhausted each time I’ve had to leave my home, and resenting the several times a week that I had to spend my daily energy on seeing a doctor.  Helpful, yes, but the truth is there is no cure, and they’re all just doing their best to help me be more comfortable and handle the unpleasant side effects of my condition.

My husband and I had a very honest conversation about all this, and agreed it was time to get hospice involved.  Instead of running all the time from doctor to doctor, I wanted to spend more time at home with my loves spending what energy I do have on them.  I needed all the doctors consolidated into one master plan. It was the /best/ decision. 

The palliative care people? They’re a different breed.  I remembered this from my days working on the ambulance, but it was reaffirmed to me the first time I met my new team.  They aren’t out to find me a cure; their goal is to keep me as comfortable as I can be with what I’ve got, and that is exactly what I needed.  I was met with such kindness.  They weren’t rushed and bothered like so many; they took the time to see and understand me. They acknowledged and affirmed everything I was going through and feeling, and they committed to only do what I needed most.

Our days have slowed down.  I have found myself with more energy because there is less running around.  I’m so deeply grateful to shift our goals and focus on loving each other even more. My doctor is so kind, and readily available when I need something.  When I landed in the hospital with septic pneumonia recently, my palliative care team was there, and they were the ones who stayed extra in my room and laid comforting hands on me while we spoke, asked me how I was feeling, and truly sympathized with the pain I was experiencing and wanted to help.  I am learning a whole new level of compassion from these people, and I can’t help but wonder if I show the same love when someone needs me.  I sure aim to, and I’m thankful to have such incredible examples showing me the way.

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death, faith, family, grief, gun laws, guns, hope, school shooting, sisters, suffering

Staring Down the Barrel

Hannah

“Hope holds a broken heart together.”

~Ann Voskamp

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I am sitting in the thick blanket of nighttime, listening to the steady rain beating the drum roll of its sixth hour on the hollow-sounding roof.  The intense piercings of a familiar pain keep me from my slumber, and I am delicate in my constant re-positioning and pill-swallowing to avoid waking the mounds of purring sleep close to me.  My bedroom started out far less crowded tonight, but as the starlit veil fell, came the padding of feet and the tiny, emotion-filled voices describing fear of the dark, tumultuous dreams, and loneliness that needed the quiet comfort of my presence near by.  So here we all are, their chests finally rising and falling with the rhythm of their dreams, and me wondering when things will go back to normal.

This was a headline week for guns.  A few state lines over, lives were shattered as another troubled youngster unleashed explosive fury on rooms full of unsuspecting  teens and adults, cutting short the futures of many who had planned on having more time.  All the articles and bar-room-conversations and social media statuses are blasting loud the positions and rules and amendments and movements that each are convinced will bring an end to this terror. All of this buzz about bullets and laws and security and the NRA, and all I can think is how will these kids face tomorrow?  Closer to home, how will my daughters face tomorrow?

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Just a few days after the most recent school shooting in Florida, my girls experienced their own kind of horror at the barrel of a gun.  My two, along with a roomful of other innocent, energetic young girls had come together to kick off the Spring season of cheer leading.  The room was full of ponytails, giggles, and camaraderie.  As they finished tying sneakers and warming up tight muscles, a new and horrifying ambiance sliced through the room.  My oldest daughter had slipped out for one last dash to the restroom before practice, and when she rounded the corner to go back into the gym, she ran right into him.  No one knew, so the coach opened up the door and let them both inside.  The next 90 seconds were so brief, but stretched eternally in the burning scars of terror that now streak the memory of everyone watching.  A few odd but indubious remarks were made to strike up a conversation with their coach as he positioned himself closer to the cash box where each parent had given the weekly dues.  Then, beneath his slouching hood, he grew expressionless and in the longest instant, the dark, round metal of a gun contradicted the innocence of the hairbows and glitter, and the giggles turned to a fear that would not be forgotten.  My girl, still the closest to him, tried to make a subtle move for a cell phone, but his instincts were fast and he tucked the metal box and dashed for the door.  Then the knee-jerk reactions of the coach slamming her shoulder into the door corner as she lunged after him, the instant tears of the little sister who felt the hysteria of watching her sister so close to a ruthless bullet, and the mayhem of the entire crowd as adrenaline was unleashed.

I am still incredibly grateful that this tasteless man had a thirst for money rather than for blood, and my girls got to come home safely that night.  What was no longer safe though, was their security and peace of mind.  Tears upon tears from the two of them and the best friend as they clung exhausted in an embrace of profound emotion in my kitchen that night.  Panic, flashbacks, sweating whenever they found themselves in a room too far from the safety of knowing a trusted adult was arms-length away.  An incessant need for the security of a cell phone pressed closed whenever they have to leave the house. Nightmares and sleep-screaming through the deepest hours of the night, peace divided by having to learn that sometimes these things happen for no good reason.

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Tomorrow my girls will face walking back into that gym.  My oldest will relive the details of his coat and his birthmark as she walks through the same hallway where he first cut into her memories.  My youngest will remember the powerful emotions of watching helpless, wondering if she was going to see her sister’s future rewritten.  They will have to come to terms with these memories and these fears, and I will support in them whatever ways that they need, but I can’t help but wonder… what about the kids who watched friends and classmates and teachers gunned down in front of their eyes this week?  How will they find the courage to walk back down those halls?  I truly cannot grasp it.

Everyone has an opinion about what needs to happen.  More guns, less guns.  More restrictions, more screenings, more freedom, less.  So many different points of view.  I have an opinion too, but I’m not going to share it right now.  Right now all I can think about is the downright brokenness of it all. The terror, the pain, the distrust and the loneliness that has gone down in irreversible ways.  The truth is, regardless of what decisions are made about whether or not guns are legal and what the process will be to get one, there is an issue at the foundation that is something we all hold the answer to.   This world needs people who care more for the hearts of their neighbors than about how their status will suffer if they are seen breaking bread together.  It needs hearts that can anticipate the needs of others, and read from the eye motions and the face lines when someone needs an extra dose of kindness.  This world needs people who are wholly committed to seeing each other for what they are; other humans who are hurting and struggling and trying to make it, and in desperate need of being loved, accepted, and understood.

We don’t need gun laws, whether for or against, in order for this to happen.  We simply need to look up, and look around, and reach out with everything we’ve got in order to say, “I see you, and I know you’re hurting, and I’m going to walk you through it.”

We all just want to be seen.  Have you ever stopped to think that maybe you are part of the answer?  What is it that’s holding you back?

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daily graces, endurance, family, hope, joy, suffering, trials

Bits and Pieces

Hannah

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I have this blank canvas to scribble my thoughts, but lately I have let them recycle, tumbling unsorted in the confines of my mind, timid of what people will think if I speak out loud.  Someone told me not long ago that I should try writing about something else.  I took it to mean people do not want to hear the confessions and wonderings of my soul; they are probably rolling their eyes and turning off their screens.

After talking with a close friend about what else to write about, I came to the conclusion that I don’t want to write about something “else,” and I don’t know how to.  The reason I write about what I do is that it flows quite easily when I need to release and process difficult things.  It’s therapeutic for me to free up some space in my thoughts by unleashing the tangle of words and emotion that sometimes becomes difficult to find space for.  Part of me also supposed, in the beginning of this place, that someone else would find hope and strength in the raw processing of the journey of my life.

I have been learning more lately that it is okay to let every experience, good or bad, shape who I am and how I view things.  Let’s be real; life is never going to be all rainbows and bubblegum, so if we are going to become something other than tainted and bitter, we are going to have to figure out how to filter through our ups and downs and pick out the important growth-inducing bits, and let the rest hit the shredder.  That’s what I’m trying to do here; sift through the daily barrage of twists and turns and cling to the slivers of truth that will deepen my character and make me a softer, wiser human for the other people on this expedition with me.

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Think back to the last hard, life-changing thing you went through.  It might have been the loss of a loved one, loss of a job, a difficult diagnosis, a traumatic world-event… you know how you had that numb feeling for awhile afterwards?  Thankfully we all have this mechanism that only lets us take in what we are capable of at the time.  Our simple minds and hearts would simply explode if the full force of things hit us all at once.  So we take it in little by little, in easily digestible chunks that we can begin to process and break down.  That movement happens in the telling of the story.  Each time you share your story, your mind is able to handle a little bit more and apply a greater understanding than it could the last time, until eventually you can boldly tell your story, maybe still with some tears, but with a confident and understanding boldness that has replaced the initial shock and bewilderment.  That is my place here.  I will keep on sharing the plot twists of my life as I continue to find deeper meaning and healing in the new details I understand every time I brave it.  And if in doing that some of you are able to pull out the important truths, the pieces that make you bold and brave and inspired, then even the more reason to keep shouting it loud.  My story.  My unbelievable, true, heart-breaking, beautiful, hope-giving story.

Will you share yours too?

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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, 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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faith, family, love, marriage, sisters

Once in a Lifetime

Hannah

When I was young, I prayed for a little sister.  Brother, after brother, after brother I prayed.  I would open my window to breathe the thick freshness, and spill the desire of my heart.  I scrawled prayers out on paper and buried them deep in the earth.

June 27, 1992, I got that sister I had prayed for.  We were instant friends, she my sidekick, and I her protector.   We shared faith and opinions, secrets and dreams.  The years separated us through our parents’ divorce, but as we faded into adulthood our friendship rekindled.

 Through many joys we have traveled, as well as great trial.  She has been my trusted friend, my faithful confidant, my unending anchor.

 Tomorrow I get to walk one of the greatest joys with my sister.  I get to stand beside her as she becomes one with the man of her heart.  I will be there as the rest of her life begins.  In some ways I know this is a landmark; a day which will change the shape of our friendship, as she clings to her one,  and will share secrets that even her sisters won’t know.

The “smolder”

I’m proud of the woman my littlest playmate has become, honored to be part of her life.  Her faith runs deep, her kindness eternal. With tears in my eyes and thankfulness in my heart, I will stand  by as she moves from girl to wife.


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family, homeschooling

Changing Course

Hannah


Life was pretty predictable. Mark worked. I worked. The kids were in school and daycare. We saw each other for a few minutes in passing. Suddenly one day, this was not okay. I had very little left to give my family and felt like my babies were growing up and I was missing it. So came the rearranging. I quit the jobs that were sucking the life out of me, and adjusted my schedule to not only be home more with the kids, but also to embark on the adventure of homeschooling. It seemed Jacob was getting overwhelmed by all the activity of being in school, and needed help to refocus on moving forward in his studies. The only answer that seemed to make sense was to work with him ourselves. It has been a learning experience for ALL of us! I am learning patience daily… and finding creative ways to keep things interesting and engaging for everyone. We are settling into these new routines, and although some days find me cranky from trying to teach phonics and math after having been awake all night at work, it is evident the time we are having together is reaping rich blessings for the whole family.

adoption, faith, family, pregnancy

Starting Fresh

Hannah

So after years of finding “newsletters” a bit pretentious and overbearing, here I am essentially doing the same thing in the form of a blog. Well they say change is good, right? My goal is to filter and “pen” an account of the days and moments that are changing and molding me as I seem to have entered a new and dynamic period in my life… a peek inside the workings of a few servants that God has so clearly made plans for and laid hands on. The main characters include my loving and devoted husband of 9 years, my son and two young daughters, the little miracle on the way, and the adopted one that God has so clearly nudged us to welcome into our lives. Please walk alongside us, laugh and cry with us, pray with us, and see in us the miracles our Heavenly Father has and will perform.