Tag: faith

Uncategorized

The Feeling of Fading

Hannah

When I was given a terminal diagnosis I chose to fight for life. For time, for moments, for memories. Some days it is easy to do, and sometimes I am clawing and grasping at something that seems so pointless and out of reach.

Yesterday put me in a dark place. I had a doctor appointment about an issue that is fixable. Any healthy person would have walked in that office and been given hope for healing and a better quality of life. My third time in this office to plead for relief was met with the same disconcerted answers as before, even with the new information I brought. A doctor I have seen 3 times now, and he has not even laid a finger on me to understand what I’m going through because it is obvious he has already made up his mind that it is not worth it. I am not worth it. My condition is too advanced, there is not enough life to live to make it worth his time to help me. That tore me apart in ways I cannot describe.

I am weary. Every single day is so much fight, and sometimes it is hard to remember what I am fighting for. The memory loss from my brain surgery continues to torment me. It frustrates my family to the point of anger, and then leaves me feeling like I have done something wrong when really my mind is just tricking me into believing something different than everyone else. More and more I hold my tongue to avoid the embarrassment and the conflict of not remembering things. I nod my head and pretend to remember when I really have no idea, but it is the more peaceful path. That is not me. I do not hide.

My body is tired of the battle. My mind is tired of the battle. Some weeks that propels me to fight harder. This week it finds me burrowed under my blankets, hot tears burning scars down my cheeks. I do not know what the rest of my days look like. The only thing I know for certain is I have Jesus, and he is the one who has given me these days, so through my tears I pray he helps me to use them well. Feeling myself fading is frightening, and I don’t feel like I am courageous enough for the path ahead of me. I do know I am held though. Held on the easy days, and held on the days that seem impossible. Held in my determination and my hope, and held in my fear and my disappointment. He promises to carry me through the deep waters, so I pray he will carry me further than I can even imagine.

Uncategorized

In the Waiting

Hannah

I spent the morning with my little on our knees in the dirt, carefully setting tulip bulbs in the ground as the bite of the brisk air nipped at our coats. He excitedly flung dirt with a small trowel, and counted out the bulbs, mixing the colors and nestling them tips-up into each hole. As we carefully patted the dirt down, covering the evidence of what lays below, I was struck with the symbolism of it all.

These bulbs, cold and papery, don’t look like much right now. They are carefully keeping a beautiful secret which won’t be seen until Spring, after the Winter storms and bitter cold have faded. How true this is of our lives. You may be in the middle of a hard season, worn by the beating of the storms and weary from the gray that stretches on for days. In these hard moments though there is planting; the lessons you are learning, the faith you are growing, the hope you are clinging to… these beautiful treasures seemingly lost in the bitter winter of what you’re going through will bring eye-catching wonder on the other side. Don’t despair; keep sowing in the cold ground, even though you can’t see it now, something beautiful will come of what you’re going through. Let’s wait expectantly together for Spring!

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

Uncategorized

Summer Lovin’

Hannah

Every summer for the past few years we have started off the break making a “summer bucket list” of things we want to do during summer vacation. Some things are big, some are small, but the main idea is to be intentional about using our time. I am a homebody through and through, so I would be perfectly happy snuggled in my nesting place with my tribe. I have wanderers and adventurers though, so we try to plan some exciting things to venture out and try while we are free from school routines.

This summer we crammed in more than we usually do, trying to check off some unique things that I either haven’t done or likely won’t able to in the future. It has been a blast. I have dug deep for energy and stamina to hang with my people, and while the nights find me collapsed in an exhausted heap, it has been exhilarating to taste so many joys this summer. We stretch me out, hydrate, medicate, and wake up again to take on the next adventure.

From staying in pajamas all day and doing sidewalk chalk, to concert hopping and driving to new destinations, we are creating a beautiful bucket full of the exciting and the mundane of sweet summertime. What is on your bucket list this summer?

If you are friends with me on Facebook, you may have already seen some of these, but enjoy the pictures of some of our adventures!

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

Uncategorized

Incurable Hope

Hannah

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, which is responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have here.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

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

Uncategorized

July 14th

Hannah

Today we remember those last moments we got to know our Ellianna. We were thankful this week of her anniversary to get to be in Colorado to celebrate her mighty life.

Our months with Ellie brought us so much love, we aim to always pass that on and continue to let her life make an impact on others. It’s not always we get to be in her hometown, so we took advantage of being able to continue her legacy here. Since we don’t get to shop for our little peanut we went shopping for another little girl who needed love and encouragement:

Looking for things to bless a baby girl, we were overwhelmed with the small reminders of our little one. Purple with rainbow stripes couldn’t have more embodied all that we remember.

When I looked for a card, we immediately saw one not only with the little Piglet that she was known for, but the quote on the front was the same as is written on her headstone. I melted at the tender reminders that God knows exactly what our hearts need.

We packed up our bag of love and headed up to Ellie’s NICU. Tears brimmed as we embraced one of the nurses who has become a lifelong friend. We asked her to choose a family for us, and she knew just who needed the encouragement. Standing in that familiar hallway, we got to meet the mother of another baby girl there fighting for life beyond the hospital doors. It was evident that God had placed her nurse on just the right day that a weary mama needed the love and hope we had to share. There we were, getting to exchange hugs and a gift of love because of the short and mighty life of our little girl. I will never stop being thankful.

After the hospital, we headed to the cemetery to remember. I know many people don’t see the point in visiting the cold hard stones, but for us it’s a tangible place where we can open our hearts and express our sorrow and joy as we remember the moments where we stood between earth and eternity and gave our girl back to the arms of the One who holds her. It’s especially helpful for our other children as they bring tokens of their love and remembrance for her. Little Colby had chosen a special shell on the beach of Florida for his big sister that he brought with him all the way to Colorado. We enjoyed a beautiful stormy sunset as we each wrote notes to our girl and then lit them, sending them floating into the sky.

We are truly blessed to have gotten to be Ellie’s family. She has changed us in ways we all needed, and we will forever be grateful for every day she was with us. We will continue to find ways to share the hope we have, and spread the love she gave us, until we meet again.

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

Uncategorized

A Rock and a Hard Place

Hannah

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!

Uncategorized

Leaning In

Hannah

This past week we wrestled as we processed some new information. The brokenness can seem so overwhelming at times when we forget to give over control. We had a hard conversation with our little people, and we leaned in hard over the weekend to find the good in our story.

Saturday we supervised as our new high school freshman invited over several friends to celebrate saying goodbye to middle school. It was a mess of s’mores, slip n slides, rain, and lots of smiles and laughs.

Sunday was the first time I’ve made it physically to church in months. It was wonderful to sit among community, and to get to visit with a few of the kind women that have been reaching out to help meet our needs at home.

Monday morning we loaded up to watch a small parade in one of our neighboring towns, and then visited the dairy farm nearby to feed the animals and enjoy the most delicious freshly made ice cream.

Every time I push past the exhaustion and hurting to get to see joy and connection on my babies’ faces, it eases the discomfort in my bones and brings me the richest joy I can imagine. I’m so thankful I can still get up and embrace the best of our days. If you’re sitting on the sidelines, would you get up too? I promise it’s worth it. We’ve been given so much beauty to enjoy, let’s not miss it!

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