Tag: family

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Buckets

Hannah

As I’ve considered the things I’d really like to do before my illness progresses enough to eliminate possibilities, I’ve kept kind of a bucket list of sorts in my mind of things I hope to get to do. At the top of the list was going to the beach with my family again. As time has slipped away though that has seemed out of reach, so when I discovered we essentially have a beach and sand dunes just a few hours from us by Lake Michigan, I jumped all over making it happen.

For months I saved up the earnings from my Etsy store so I could pay for us to rent a campsite and a comfortable RV that could power all the medical equipment that has to trail along behind me. I managed to snatch one of the last groups of days left for the popular camp spots at Indiana Dunes State Park, and started harping on my family to black out the days and make sure their bosses knew they wouldn’t be working. When one of my kids got pushback from their boss about taking the days off I even composed a carefully written letter about how important this was to our family, and praise Jesus he consented to approving the vacation days.

We planned for months… meal planning, gathering up our boogie boards, kites, and buckets for the beach, and rounding up sleds we could use to fly down the nearby sand dunes. Lists of medicine and machines I needed to have with me. I found an amazing RV nearby for us to rent, and got everything settled. I was so excited and looking forward to this time for all of us to escape our busyness and make memories together.

I don’t know if it’s sad humor or irony or what, but a few days before our trip I landed in the hospital as the result of a mistake made by the healthcare professionals. It was serious, and my hopes for a quick prescription and release were dashed as I was admitted and prepped for surgery the same night. Buckets of tears later I had begged and pleaded with each doctor, explaining the significance of the trip, urging them to let me go. It was not to be.

Father’s Day morning (and also my son’s birthday) was the day we were set to leave. The rest of my clan packed up the RV and came to the hospital to have a makeshift celebration with me before they hit the road for our vacation. There were to be no refunds for what we had paid, and by then there were no other days available to rent camp spots, so it made the most sense for them to go ahead without me.

The disappointment mixed with excitement in my hospital room that morning was palpable, and I felt genuinely joyful they were still getting to go, while at the same time deeply disappointed I would have to stay behind. There was a flurry of hugs and kisses as I sent them on their way, demanding many photos.

In the stillness of a familiar hospital room my frustration burned hot rivers down my cheeks. All the things I have lost to this disease, Lord, why did this trip have to be one of them too? The whole point was for it to possibly be one of my “lasts.”

In the painful silence of a room that overlooked a brick wall, I remembered the story of Nehemiah. A man who had worked so hard for something, and then had seen it come crumbling down. He says he sat down on the ground and cried. He mourned for several days and refused to eat. Then he got up and dusted himself off. He thanked God for keeping His promises, and he prayed for restoration. This is the heart posture I desire to have.

Charles Stanley said, “Taking time to lament what we have lost can be an act of worship. Nehemiah allowed his distress to lead him into deeper communion with God. Offer your tears as devotion to Him.”

I pray that through the many disappointments and missing outs of this disease that I will learn more and more to press into Jesus through my frustration and discouragement. I know He sees far beyond what I am able to, and I trust that He knows how to write more good into my story.

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Making Lemonade

Hannah

Ever the entrepreneur, my boy is an experienced lemonade slinger. His delicious recipe and adorable smile keep people stopping , and most days he turns an impressive profit for a 11 year old.

As he started gearing up for the first sales of the season he said, “hey mom, you know how I was going to save up my lemonade money and buy a motor bike? Is it possible for me to save up all my money and use it for a cure for your sickness? Utterly humbled by his compassion and thoughtfulness, I did my best to explain that there is no cure; it’s just doing things to try to make my body as comfortable as it can be.

Flash forward to today- he was setting up his lemonade stand, and he paused to come talk to me. “You know how you said there is no cure for your sickness? Is it ok if I use my lemonade money to pay for the next few medicines you need?

There are few things in life that prepare your heart to be absolutely melted and shattered and hugged and twisted all at once like that. I’m so thankful for the empathy and gentleness that my boy is learning, even in the midst of such heartache.

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Mother’s Day Rewritten

Hannah

There is not much I feel like saying about Mother’s Day this year, and that makes me feel like it’s more important than ever to say it.

Mothering, as well as having relationships with our mothers can be really hard. Yes, there are blissful moments, like when that baby is first placed in your arms, when they say their first “I wuv you,” and when they run inside from school desperate to find you for that unforgettable hug.

There are memories of mom being the smiling face in the crowd at all of your performances, the one you could come home and spill all of your emotions to while she quietly listened, the late night back rubs, early morning hair braids, and the countless times she came to your rescue when you forgot your homework, said something you regretted to your best friend, or really weren’t sick but she knew you just needed a day home from school.

There are also a whole lot of hurts wrapped up in being a mom, having a mom, or wanting a mom. There are empty wombs and empty cribs. There are sleepless nights and bone-tired days you don’t know how to push through. There are arguments because you just wish she could see things the way you do, and there are painful gaps where you needed a mom and didn’t have one there. There is pain and fear over children who have walked away and you don’t know if they are coming back.

This Mother’s Day, close to my heart are thoughts of my sister trying to balance the joy of the homemade cards from her littles with the deep grief of feeling the sharp edge of her first Mother’s Day without one of her cherished sons with her earth-side. How does one fully celebrate the gift of motherhood after watching one of her children draw their final breath? Just like a house of cards needs at least 8 cards to stand, does not one child missing make a mother struggle to build herself back to who she once was?

Heavy in my thoughts are the lives of my own littles. Two at the edge, ready to fly from the nest they’ve always shared with me. Each one of my birdies fighting hard battles that this broken world has thrown in their path, and myself, sitting practically on the sidelines, crippled and nearly motionless from the ravages of a rare disease that steals many of our moments together.

So yes, this Mother’s Day I am having trouble hyping myself up, but I think that’s ok. There are seasons for jumping up and down with excitement, and seasons for quiet reflection, and I’m sure each one of us is at a different place on that continuum. Wherever you are, I’d like to meet you there; in your joyous celebration, or in your silent weeping.

Tomorrow we will wake on a day meant for mothers. I will be thankful for my own mom, and for the women that have filled spaces I’ve needed filled along the way. I will celebrate and smooch on the children I have here with me, and I will take time to think upon each of my treasures in Heaven, and how they furthered me in who I am as a mom. I will rejoice with those who rejoice, and I will grieve with those who grieve, and somehow through it all I hope the littles who made me a mama will feel my love and appreciation for them, and see the reality and okay-ness of taking each day from right where you’re standing. Of being real and kind and tender and aware of those around you, and able to ride these ever-changing waves with grace and enthusiasm.

Happy Mother’s Day!

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The Shoes She Wears

Hannah

She walked to her closet, thoughtful with each step. She had an opportunity tonight to be herself; to kick back and laugh and feel light and free and enjoy herself. She wanted to make sure she wore just the right outfit for the occasion.

She chose a brightly colored dress that made her look mature, yet young. The hem swished and danced with her steps as she walked. A softly knitted bright shawl wrapped her arms in warmth, and she tamed her frazzled hair into waves that bounced around her shoulders and framed her face.

When she leaned to study her face in the mirror a brief frown twisted across as she noticed how dark and tired her eyes were, and the dark shapes even deeper in her eyes that whispered of something heavier. She blinked it away though, and set about finding eye shadow that lifted her eyes, and selected a lip gloss that shimmered with glee and sparkled even brighter against the white of her smile.

“Almost ready!” she called to the footsteps pacing in the front hall. “I just need to grab my shoes.

Throwing open the closet door again she surveyed the shoes she took joy in gathering. They sat in matched sets, each with memories of a lighthearted dance, a day exploring at the park, or the sidewalk chalk scuffs of skipping through the backyard. Tonight was special, she wanted to look her finest. She reached for a glistening pair of high heels. Their sequins shined bright, and shiny new straps crossed daintily across the ankles. She reached for them, and in doing so knocked another shoe from its place. It tumbled across the others and lay in front of her, ready to step into. “Oh yes,” she mumbled. “How could I forget.” She put the other pairs of shoes away; the shiny conversational heels, the flirty strappy slides, and the tippy toe shoes that clicked the hard floor for attention as she walked.

She slid her feet into the muted pair that had fallen out. She didn’t even have to look down to get them on; they slipped into place with such familiarity. The soles were flat and worn from pacing. They cupped all her bony angles gently, an impression made from being worn many times. There was a scuff or two along the edge, and for a brief moment she remembered her conversation shouting at the heavens for a bargain, pleading for the life of her child. The worn material at the toes bore a few slight stains; likely the strong salt water of tears that could not be diluted.

Both feet comfortably in these familiar shoes, she sighed. There was no changing the shoes she wore now. They were forever a reflection of her. A grieving mama; a soul tormented by the agony she had walked through. But she knew how to wear these. Walk, run, sleep, pace a divet into the floor, these were the shoes that represented her day in and day out as she clamored through her painful story and prayed that it would be reconciled.

She grabbed her purse and headed for the front hallway, ready to meet whatever the world had for her today. She slipped her tiny hand in her true love’s large one, and he gave a squeeze as he took her in from head to toe. He knew whatever dreams she wanted, these would always still be the shoes she knew so well, and for now they carried her. They gave her the grace to excuse herself, the joy of a blessed memory, and they gave her the kinship of understanding another mama in recognizable shoes. So she stood tall and proud after all she’d been through, and she wore the shoes that wore her heart.

**For my sisters, who bravely put on their shoes every day.**

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Worth It

Hannah

As my baby sis and I chatted back and forth today on what would have been my nephew Angel’s 11th earthly birthday, my sister said something so incredibly true and equivocally profound that I am left pondering over it hours later.

“You know what’s amazing?” she said. “Angel refused to believe he was a burden (and he wasn’t). But by society’s standards, he was. He couldn’t move a single muscle other than his eyes. He was 100% dependent on others for literally everything–life, health, engagement, communication…all of it. Yet he never apologized for taking up space. He had high expectations for how he was to be treated and honored and considered and included and he didn’t tolerate those who saw him as worth less than anyone else. He KNEW his worth. He knew it so deeply. And I can’t say that for myself. I at times feel overwhelmingly guilty just for existing and have since childhood. But not Angel. He. Knew. His. Worth. No matter what. And that is really, really powerful.”

This struck me to my core, because I at times get caught up in how much of a burden I must be, and how I wish I didn’t have to depend so much on other people. But Angel never felt sorry for himself like that. He knew he was a treasure; a child of royalty, and he did not accept being treated as anything less.

While a lot of that came from being just the incredible little boy that he was, there is also loads to be said about the fierce way my sister and brother-in-law fought for Angel’s worth. He knew he was valued because he was constantly treated as valuable, and he was shown that what he brought to the table mattered. He was fought for, given a voice, listened to, applauded, and all of those things only cemented his knowledge that he was worth it.

As Angel’s 11th birthday winds to a close my heart is so tender, but so grateful that for a boy who could have felt less-than, he always knew right where he belonged, and now in Heaven, he has claimed his true worth, his royalty; the crown he fought so hard for and was bestowed by his King. And I can’t imagine a bigger smile than on the boy who always knew- I am worthy.

Happy birthday, sweet Angel. You are loved.

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Christmas Every Hour

Hannah
6:30 am
7:30 am
8:30 am
8:30 am
9:30 am
10:30 am
11:30 am
11:30 am
12:30 pm
1:30 pm
2:30 pm
3:30 pm
4:00 pm
4:30 pm
5:30 pm
6:30 pm
7:30 pm
8:30 pm
9:30 pm

”For to us a child is born, to us a son is given; and the government shall be upon his shoulders, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and of peace there will be no end, on the throne of David and over his kingdom, to establish it and to uphold it with justice and with righteousness from this time forth and forevermore. The zeal of the Lord of hosts will do this.“
‭‭Isaiah‬ ‭9‬:‭6‬-‭7‬ ‭ESV‬‬

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Grieving Well at Christmas

Hannah

The first December after having watched our youngest daughter be buried in a gaping rectangle of earth I did not feel like celebrating Christmas at all. I wanted to skip it altogether, and truth be told if I hadn’t had 3 other littles expectantly waiting on our yearly traditions I would not have done a thing. But there they were, those bright little eyes and tiny hands open wide to receive the giving and the caring and the celebrating of the most joyous gift, and while I couldn’t see it then I know now that my heart needed that just as much as theirs did.

I was stuck wondering how to move forward through the dark days of Advent in a way that would point my family to hope while still suffocating beneath the ache of the sudden loss of my little girl. What I learned that December and all the ones since is that the Christmas story holds space for our stories, even the dark parts— for the tears and the scars, the mourning and our deepest grief. I learned how to weave the remembrance of our littlest sister girl into the stories and traditions of each Advent season, and have done so ever since.

When a friend visited a few days ago and saw how we still include our Ellie in the patterns of our Christmas season, she suggested I share the ways that we do that, knowing there are others holding the shards of painful losses and unimaginable grief this season, and hoping I can help you to find meaningful ways to embrace the joy of anticipating the day of our Savior’s birth while still honoring the lives that have left us with ragged and tender edges during the happiest season of all.

One of the long-standing traditions in our home is that every year each of the kids get a new ornament to hang on the tree. Wanting to include Ellie in that, yet realizing it didn’t make sense to gather a growing collection of ornaments that she would not be taking with her to leave our nest one day, we came up instead with Ellie’s Christmas Tree. Delighted to find a tree existed in purple, her favorite color, we set about adorning it with miniature ornaments that all reminded us of her and her precious days spent with us. Every year the Ellie Tree gets set up on a tabletop and decked out with all the girly symbols of her tiny self. Occasionally we find a new ornament to add that suits her perfectly, but for the most part we keep the same collection and enjoy every year this small but bold representation of our girl.

As I hung the family stockings that first Christmas without her, it felt like betrayal somehow to not include her in that tradition, yet an equally painful gut-punch was staring at a limp, empty stocking that would never hold gifts for the littlest sister. So we started the tradition of Letters to Ellie. As the calendar page turns to December each year we purchase a pack of cards specifically for Ellie’s stocking, and as we move through the days of Advent toward the coming of the Christ-Child, each family member takes the time to write a personal letter to our girl and slip it into her stocking.

In the early days when the siblings were bitty, that often looked like adorable drawings of stick people representing the littlest girl twirl-dancing in Heaven, or memories of what they missed doing with her. As they’ve grown the letters have grown too, to include writings of their memories with her, updates on what they wished she could have been a part of this year, or wonderings of what she would look like or be involved in today. Each year as the celebration of Christmas winds down I have taken the cards and added them to a growing scrapbook of Ellie’s Letters that we all enjoy looking through and seeing how time and maturity and the aching of missing her have colored what has been documented. It has been a sweet way to include her and to reflect on the impact her life has had on our lives.

However you choose to include your missed loved ones into the celebration of our Savior’s birth, always remember that the little Lord Jesus asleep on the hay has made a way for us through the tears and the deep grief-aching of our hearts. His birth paved the way to the cross that beckons us to come and makes space for all of our grieving, and promises to bring us rescue from these dark days into an eternal life of joyous fulfillment.

Come, oh come, Emmanuel.

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Broken by a Pillow

Hannah

A few days ago I was attempting to change the sheets on my bed. My dear hubs likes to use these heavy weighted gel pillows to sleep on that feel best on his neck. He was helping me put the bed back together and I reached for one of his pillows on the floor to hand it to him. Grabbing it with both hands I yanked it up almost to waist height only to have the weight of it slip from my hands and plummet back to the floor. Again I reached for it, and again it slumped to the floor as it slid from my weak grasp. And then I lost my ever-loving mind. “This is ridiculous!” I shrieked, and before I could even think I burst into tears. I know his kind words were trying to console me, but I could not hear them over the shame and frustration and despair that rang through every cell in my body.

I made a beeline to retreat to the bathroom where I hid behind the closed door and let loose hot tears of anger and deep sadness. All I could think was, “They used to call me Mighty Mouse because I was the strongest in my fire department, and now I can’t even pick up a stupid pillow. This isn’t fair, God. This was not supposed to be my story. Why can’t I have my life back?”

Silence screamed back at me as I finished having my temper tantrum and blotted my swollen eyes. Then there was a quiet whisper to my soul, “There are countless others who have that story; yours is one that will show my glory even more so because of your weakness. Just trust me.”

Peace seeps in like the gentle rocking of a newborn to sleep. My Abba Father has got me. He knows the pain, He knows the frustration and disappointment, and He promises to make something beautiful of my broken pieces.

As I crawled into bed I did the only thing I know to do when given the choice to despair or choose hope; lift my hands and praise Him for the many gifts in my life. I list them off into the stillness of night, and like a mighty shield, that act of thanksgiving pushes back my shame, my frustration, and my despair, until all that’s left is a calm assurance that I am exactly where I am supposed to be.

In what ways are you feeling your shortcomings? Are you able to leave those at the feet of Jesus and trust that He’s got you? It’s not always easy, but it always comes with a huge helping of peace.

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Thanksgiving

Hannah

In a season of suffering and deep grief, a day set aside to give thanks can feel counterintuitive. This week as I have pressed into a list of tasks to prepare for a day of fellowship and feasting with my family I have faced endless hours of debilitating pain, a frightening drop in function on a repeat breathing test, a company that has decided not to provide my tube feedings anymore, and fatigue that binds me with so much exhaustion that a whole day slips by without me waking. Admittedly, it can be easier to find things to complain about than to be grateful for, but then in my morning quiet time I am reminded that thanksgiving is the way we enter into and experience His presence (see Psalm 100:4). To say “Thank You, God” is to perceive Him with us in our suffering.

In the dark, painful corners of a Nazi concentration camp, Corrie ten Boom wrote, “Thankfulness keeps us connected to the reality of God in our lives.” If a woman persecuted and tortured for doing nothing more than showing love and hospitality can find reasons to give thanks during the darkest days of her life, than I have no excuse not to be counting my blessings. So, I pull out my journal of daily graces and scrawl them down on the pages; the easy-to-miss but very present reasons throughout my days to give thanks to a God who is acquainted with my sorrow, and is fiercely present in my suffering.

Gratitude is not always easy to embrace. Suffering affords us endless opportunities to complain and despair and harden our hearts. For myself, some days are so acutely painful that I wonder how is there possibly anything good to be thankful for today? Yet I continually find that just that amount of belief is enough to gently turn my heart and head toward my Savior.

To those of you that are trudging through deep grief and fighting daily battles that threaten to consume you, I see you. I hear your desperation and I feel your pain. Still, I urge you to lift your head and look around. Find the daily graces, no matter how small. Your warm cup of coffee. The sunshine streaming through your window. No matter how small your capacity gratitude in that moment, you will find yourself inspired to thank Him for more and more of His gifts and His goodness.