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Home, the Place Where I Belong…

My tribe and I are elated to be spending some time in our old stomping grounds, Colorado Springs. Mark had to travel out here for work, so we made him drag us along! There is so much good to be found in the bright sunny skies and horizon full of majestic, towering peaks. This is our place.

We have seen so many friends this visit. So many. There are still more we couldn’t even squeeze into our days, but we have dearly enjoyed each heart we’ve been able to reconnect with during our time out here. Old friends are the bestest friends.

My little people have enjoyed days full of swimming, playing with friends, visiting their favorite spots, and then snuggling in for crafts, movies, and massage trains. It has been a wonderful break for our hearts and minds, and we have found joy in our minutes.

Our visit is too short to fit in all the goodness we left behind here, but our love tanks are full as we wrap up a wonderful week packed with sweet memories. Thankful for the Giver of such gifts.

Please leave me a comment, it lets me know you’re listening!

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An Open Letter to my Grieving Friends

Dear Mark and Stephanie,

You have just joined a club no one ever wanted to be a member of. How I wish no one has to wear the label of grieving parent. It’s one thing I wish we didn’t have in common, but because we are both here together, I’ll be here.

When you walk slowly out of the hospital into the sunshine with empty arms, wondering where to go from here, I’ll be here.

When guilt creeps in and tries to make you question your decisions, I’ll be here.

When you walk by her bedroom door and break down at the sight of all that was hers, I’ll be here.

When you struggle through all the “what-ifs,” I’ll be here.

When you numbly stumble through the surreality of laying her to rest, I’ll be here.

When you have to put your own grieving on hold to help her siblings in their grief, I’ll be here.

When school starts back up and her backpack still hangs on the hook, I’ll be here.

When people ask you how many kids you have and you struggle with what to say, I’ll be here.

When her birthday rolls around and you’re ripped apart by her not growing a year older, I’ll be here.

When the days and months and years tick by and your grief ebbs and flows like the ocean waves, I’ll still be here.

I will walk with you when you find new memories that make you smile, and I will sit with you when the sadness is too crushing to function. I’ll support you as you forge through the future, finding a new kind of normal. I will help you remember the good times, and I will never stop saying her name. I will be here as the landscape of your life takes on a new shape; one that you never hoped for or imagined, but one that is now reality. I will be here as you bravely pick yourself up and keep going, with all these precious pieces tucked away in your hearts. When you wake up each morning still a member of this new club, I will be here.

All my love,

Hannah

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A Rock and a Hard Place

Sweet Hailie Marie. This girl has shown me more about perseverance than most adults I know. This world is going to feel more empty without her.

Hailie’s father, Mark, and I first became friends in middle school. Thankfully technology has allowed us to maintain our friendship through many moves and life changes. There is a quote from Harry Potter, however, that I feel explains the foundation of our friendship even better.

“There are some things you can’t share without ending up liking each other, and knocking out a 12-foot mountain troll is one of them.” -JK Rowling

Our 12-foot mountain troll came in the summer of 2011. Mark tragically lost his wife while giving birth to their son. I tried to be a supportive friend without really having any idea how to walk with someone through that. Several weeks later, I unexpectedly lost my baby girl, and entered a whole new world of understanding the hurting. Going through those great losses helped give my friend Mark and I an understanding of each other, and forged a friendship of encouraging each other through a pain we both now knew very well.

I’ll never forget the phone call which seemed only a short time later. Mark’s daughter Hailie had brain cancer. It was an extremely hard thing for me understand, but I watched the family take this new challenge with strength and calm.

This is when I became privileged to know a little girl with fight and determination that is awe-inspiring. Three times over the next few years she fought this beast. She bravely faced the treatments that stole much of her childhood, and she pressed on. She’s fierce, and she’s gentle, and that girl always has a smile. It’s been tough watching her family walk through this suffering, but seeing how they handle it with such calm perseverance and deep trust has been inspiring to me.

Now we know that the time to fight has come to an end. That beautiful, courageous girl is not going to be with us much longer. It’s excruciating. It’s confusing. I know I have argued with God many time over allowing so much heartache in this family’s life. Answers to questions we’ll never know, but I do know that Hailie, as well as her family have given us all a lesson in perseverance, the importance of family, and the hope that can never be squelched by the darkness.

Will you keep them in your thoughts and prayers with me? These days ahead promise to be heart-crushing, and sometimes I lose the words to pray within the searing of watching my friend walk this path of suffering.

Please leave me a comment, it lets me know you’re listening!

daily graces

Being Present

I am hurting in too many places to name; exhausted beyond staying awake for a few hours, and sapped of all my energy. What a gift to be so. I spent it all this weekend, and it was worth it.

I play a constant juggling game of shifting what things I can do, and how long I will need to recover. Any activity at all takes a pretty great amount of effort. This past weekend I did less calculating and more doing. Missing the days of doing projects around my house, I worked hard to make my front porch a welcome landing pad. Tending to plants, arranging welcomes, and repainting a forlorn mailbox left me tired, hurting, and so fulfilled. It was an accomplishment for myself, and it was a gesture of love I could provide my people.

At the end of the day, covered in soil and spray paint, I pushed myself even further to clean up and go out with my loves for dinner. I didn’t think I could do it, but the delicious food and sweet company spurred me through a wonderful evening. The following night, I pushed hard again to spend time with kind friends who invited us over. It would have been easier to retreat to the cool quiet of my bedroom refuge, but I fought to stay up and enjoy the company of loving friends. It was a beautiful evening together.

By Sunday my body was done being pushed, and I had to give in to the haven of my bed for some extra sleep, fluids, and help with my breathing. My bones and muscles complained at all I had done, but my heart was light. I’m so thankful for the opportunities to fight for more, and the strength Jesus has given me to keep taking them. Remind me when I need a push! These times are surely a gift I don’t ever want to take for granted.

Please leave me a comment, it lets me know you’re listening!

family

For the Love of Hospice

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.

Please leave me a comment, it lets me know you’re listening!

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The Long Goodbye

Today I am remembering my pastor’s wife, and sweet friend Kara, on the day she left this world for the Heaven she so joyfully believed in. She is missed, and the legacy she left behind is one of great encouragement and grace. I know I was honored to learn from her about life, family, and faith.

Today her documentary came out. I encourage you to watch it and learn what made this woman such an inspiring friend. I am still challenged by many of our conversations, and always striving to love big like she did.

Click here for a link to the trailer.

Please leave me a comment, it lets me know you’re listening!

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Twists

Yesterday started out with a heartbreaking phone call, and ended with me back in the operating room having one of the procedures from Friday needing to be redone. For a Monday, it was a doozy. I kept finding myself wanting a break long enough to have a hard cry, but the day was just non-stop happening, and there was no time for that. For a hot minute I was angry. I was complaining, and I didn’t think it was fair. Maybe it wasn’t, but grace still showed up. It showed up in my mother-in-law being able to handle the details of the hard morning news for me so I could get to the doctor, and my angel of a neighbor not only driving me back and forth to the hospital, but also showing up to make sure my little people were doing ok, and receiving a homemade meal for them, cooked by someone I’ve never met. Even when I painfully eased into bed last night, my pillow didn’t need to catch a single tear, because while my husband is away on work this week every little body in the house has taken up residence in my bedroom to be close to me. It’s just the cutest thing. I don’t deserve such gifts, yet they flow so freely.

Today I’m a little shell-shocked. My heart is sad. My everything is hurting. My mind and body are exhausted. But there is an unusual amount of sun today, tiny sprouts pushing up in my windowsill, and my kindhearted nurse will come by to care for me and make me laugh as he always does. I hope that on every hard day I continue to be reminded to look for the gifts, and I hope that as my children grow they will learn to do the same, because it sure makes the worst of Mondays more bearable.

Please leave me a comment, it lets me know you’re listening!