Tag: Life

Of Yogurt, Milk, And Needles

This picture pretty much sums it all up: yogurt, butter, milk… And a light-sensitive, temperature-dependent medication to be injected with needles – on which we have yet to be trained.

This is something I’ve been wondering about: how do parents put needles into their children’s tender skin? Will it be easier or worse than the precision of a central line? I don’t know if I have the strength for this, and I’ve done an awful lot.

The story contained in the picture of the fridge is so normal. …and yet it’s so NOT normal.

But, this is Chase’s story.

The growth hormone is here.

The nurse comes early next week to train us.

Jesus is our hope.

Moment by moment.

This Is The Week

This is the week.

This is the week I’m going to write more.

This is the week I’m going to have brilliant insights.

This is the week I’m going to take better care of myself and those around me.

…the week I’m going to be more intentional about the words of Jesus.

…more intentional about parenting.

…about a child with special needs.

…about my neighbors.

…my friends.

…my spouse.

This is the week.

This is the week that nobody is going to get sick.

This is the week that all the meals will be beautifully home-cooked – even the last minute ones.

This is the week that I’m not going to raise my voice.

…that nobody is going to cry.

…that life isn’t going to seem like such a struggle.

…that the joy will outweigh the hurt.

…the pain.

…the terminal.

…the endlessness of it all.

This is the week.

This is the week I’m going to solve things.

This is the week I’m going to be ahead of the ball.

This is the week I’m going to spin all the plates.

…I’m going to make it look easy.

…find my groove.

…get it right.

This is the week.

This is the real week.

In this real week, I can’t find words that I haven’t already said.

In this real week, I don’t want to write about all the silly frustrations that hamper and shame.

In this real week, I’ve already given up on self-care before I started because there’s just too much to do.

…I already plugged a fiction book into my headphones; reaching directly over my untouched bible to push “play” on my phone.

…And then I yelled at my kids to be quiet.

…especially the kid who can’t hardly control his volume.

…while I closed the blinds to the neighborhood.

…and let resentment fester that work was keeping my husband out of the house and away from the family again.

This is the real week.

The reservoirs of joy, thankfulness, and intentional living are on empty…or beyond empty (if there is such a concept).

This week is dead on arrival and it isn’t even here yet.

Call the code. Throw in the towel. But wait…

There may still be a week.

There may still be a week because it isn’t about me anyway.

There may still be a week because my story is not really my own.

There may still be a week because any good thought I have is a God gift.

There may still be a week because I can ask for wisdom and it is promised to me.

…because I have a merciful high priest in Jesus.

…because the mercy is new every morning.

…because my life is atypical for a glory reason I don’t yet see.

…because I plan things and then Jesus directs it all.

…because while I have breath, I can still surrender.

…my family, my neighbors, my friends, my spouse.

…the pain, the terminal, the endlessness of it all.

This is the week.

This is the week formed by Perfect Love – just like the last week and the one that comes next too.

This is the week with glory purposes that have yet to unfold.

This is the week that dawns moment by moment in grace.

This is the week…

…the day.

…the moment.

…the breath.

…that the Lord has made.

Rejoice.

The story is bigger than the week.

~MbM~

Past, Present, and Future

Dearest Dr. Lulla,

Thank you.

Thank you for giving us hope where there was none.

Thank you for reacting to our shattering news as if it was your own – even though you do it over and over again with each family.

Thank you for being a clinical advocate – taking on each and every problem with a precision and logic that cut through the fear.

[credit: Jan Terry]

Thank you for knowing when to scrap the clinical and look us in the eyes as suffering human beings, not just the nearest and dearest to a medical chart waiting to be updated.

Thank you for backing us up and encouraging us to trust our gut instincts.

Thank you for letting us cry.

Thank you for giving us permission to laugh.

Thank you for being an encourager – always pushing us to see the very best and beautiful in the hospital staff around us.

Thank you for learning our names, our lives, and remembering them.

Thank you for learning every nickname we ever gave Chase and what he was like as a person – all on the outside chance that he might not scream at you when you came into the room.

Thank you for learning the names of Chase’s siblings and pieces of their stories – a heart-wrenching acknowledgement that Chase was not in a void and there was a different life outside the cancer.

Thank you for fighting for our future.

Thank you for investing in our present.

Thank you for seeing Chase as a life to be lived.

Thank you for being our advocate.

Thank you for all the things you did that we’ll never fully know or understand.

You somehow make the unthinkable more bearable, and for that, you will always and forever be considered a trusted friend and a precious member of our family.

Love always,

The Ewoldt Family

Today, Wednesday, January 25, 2017 marked the end of an era. Chase has been off chemotherapy and the scans have overall been stable for so very long that it is time: Chase’s file is being transferred from the regular neuro-oncology clinic to a place called the STAR clinic. The “S” in “STAR” stands for “survivor”. Chase is now officially considered a survivor of his cancer. I can hardly breathe for writing those words! And while he will still see many of the same teams of doctors (and there will be many teams – as Chase still fights a great many things), there will be one very significant change: today was Chase’s last official appointment with Dr. Rishi Lulla, the attending neuro-oncologist who has overseen his case from the first moments of July 31, 2012. We consider it the highest honor to have had Dr. Lulla oversee Chase’s treatment and care and we hope to see him in the halls of the hospital some day soon! 

[credit: Dr. William Hartsell]

Keep Running…

He contemplates a word he will never understand
He contemplates a word he will never understand

Sunday, 31 July, 2016

Just before the sun rose on this day four long and quick years ago, the last unknown action of a growing brain tumor was finally known as my boy seized in the wooden crib of his baby years under the waning moon.

We should not have had even six months, and yet somehow, we’ve had four years.

They have been long and full of shadows and anger, but also precious with more joys than we deserve.

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And as the shadows lengthen into longer life than we’d ever have dreamed, and we persist in this atypical life and it’s challenges, the words of Matt Papa have been close to my heart.

Lord I’m tired…

So tired from traveling

This straight and narrow is so much harder than I thought.

And on this path I’ve met both doubt and pain and I’ve heard their voices say ‘Yeah, you’ve given all you got.’

But there’s a cloud of witnesses – the ones who’ve run this race – and even louder than my fears, they’re crying: ‘Warrior, lift your face!

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And keep running, keep running, don’t lose heart, and don’t you give up now.

Don’t turn around.

You’ve got to find a way somehow to keep reaching; keep fighting.

The pain cannot compare to the reward that will be yours; that waits in store for those who just keep running.’

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Don’t turn aside…

No compromise…

Just lift your eyes to the glory that’s coming.

If you’re like me, you feel like you can’t go on, you’ll never see the dawn and you’re just about to break.

But don’t stop now.

Know that every sacrifice will all be worth the price when you finally see His face…

Just keep running…

Moment by moment.

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Dear Hospital Parent

My dearest Fellow Parent and Partner in the Awful Fight,

First of all, you are so brave. Even when you feel like a huddled, sobbing child yourself – never forget, you are fulfilling your role as the lover and caretaker of your child and you are just so, so brave.

There are so many places I could start, and in truth, this could probably be a volume rather than a letter, but I’ll try and keep it short as I know you’re probably already on overload.

First off, they almost never tell you that sitting hunched and weary next to a hospital bed is going to feel not only normal, but appropriate and right, and leaving the room (let alone the floor or the building) might fill you with all sorts of things, not the least of which is dread. Nobody tells you that it might feel strange to breathe and function in the normal world when your baby is attached to IVs and monitors for their life. But do it anyway. Give yourself a place to breathe as if your own life depends on it – even if it’s forcing yourself out onto the city street with shaking knees and eyes filled with tears for just a minute or two.

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Chase in post-op; sleeping off the anesthesia

I know it feels like life is ending, but it isn’t, so try not to let it close in on you.  Your perspective has been drastically, irrevocably altered, but it is not gone altogether. Fight against your irrational fears (because trust me, there are plenty of rational ones in our scenarios), and keep pushing into it all to find your “normal” – a sliding-scale word that will likely henceforth only be referred to with quotation marks in your life. Some days, going to the cafeteria for a coffee is going to feel like the pre-cancer equivalent of cleaning your whole house and running all the errands. Victory is sweet.

Also, If you find yourself able to go see one doctor for yourself – make it a dentist. Do I sound crazy? I probably am. It’s hard to think about teeth at all when your baby’s hair is falling out or their nourishment comes through a tube in their veins. Sometimes you spend the day in the hospital and are home for only a few hours before going back and sitting in the ER until 2AM. On these days, self care of any kind feels counterintuitive, but trust me, you don’t want to deal with all the cavities when you resurface from treatment in two or three years, so if you master the whole “leaving the hospital thing”, go see your dentist. I’m saying these crazy things because I care, really.

Next, or probably in truth, even before you go to your dentist, find your “circle”. When it goes public that your child has cancer, a lot of people will want a piece of you and your story. People you haven’t heard from in decades will come out of the woodwork just to let you know they love you and are praying for you and want to do something for your family. It’s amazing and a little embarrassing that something so awful brings so much “special”. However, not all these people are in your fight for the long haul or will speak into your life (as opposed to taking a piece of it), so find your long haulers. One, two, six…the few, the trusted, the prayer warriors, the 24/7 texting-phone-always-on-friends who say they love you no matter what, will help you no matter the time or demand, and only give advice when you ask. These are your people for the marathon. They will be, as my dear friend Judi says: your “stretcher bearers”. Because you will need the holding up – desperately.

Chase with some of his "circle"... #SquadGoals
Chase with some of his “circle”… #SquadGoals

Speaking of needs… it’s okay to be a hot mess. We live in the generation of perfect parents with all things filtered and pinned and the truth is that it’s all too easy to forget that life is messy. No one parent can do all that is thrown at them in a day, let alone all that is expected, and then you add a cancer diagnosis to this guilt-riddled scenario? Well, say goodbye to sanity! Okay, so perhaps that’s a slightly dramatic comment, but I really mean the heart of it. We are broken human beings trying to care for other broken human beings and our bodies are fearfully and wonderfully designed, but year after year of extreme stress, emotional turmoil, sleep deprivation and facing terminal situations all take their tole. I guess what I’m getting at is this: there are many ways to go through this journey, so don’t look to the parent next to you – look to yourself, and don’t be afraid to get help if you need it. Anxiety, depression, and stress are real and devastating on an emotional and physical level. We were never created for this and anyone who Facebook memes you to just be strong…well, it’s nice, but the truth is we’re weak…and that’s not all bad. If you learn anything from cancer, let it be this: life is too short and too precious to be anything other than raw and authentic. Don’t pretend. You’ll be amazed how often your struggles are shared and your words identified with – because we’re all broken.

There are so many other little things I’d love to tell you…from the secret to finding washing machines in the hospital to making time for spiritual renewal, but for now, I’ll close – simply reminding you again that you are so brave and you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.

Signed with love from the trenches,

Ellie

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