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Incurable Hope

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!

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The Barnabas Award

I would like to thank Kim Nolywaika who nominated me for a Barnabas award, which is for bloggers who have been encouraging and inspiring. Thank you for your own frequent encouragement, and for seeing that in me also, Kim! The following is part of the Barnabas Award process.

**You have been chosen for this recognition because of the encouragement and inspiration you bring to your readers.

The way this works: Thank the person who nominated you, and share their blog. Think of five bloggers that encourage and inspire you and nominate them. List five things about yourself. Lastly, ask your nominees five questions.

Five things about me (Hannah)

1. My wingman and I have been married for 17 years and have 4 growing children.

2. I love anything and everything slathered in buffalo sauce.

3. I have a gift for creative lettering, and enjoy doing it to relax, de-stress, or just have “me” time.

4. I enjoy almost every genre of music, but especially country because I love how real and honest it is.

5. I have dreamed of writing a book, but the process is overwhelming to me.

Kim’s 5 questions for me:

1. What attribute of God gives you the most joy?

–His grace. I am so in need of it, and in awe that I am worthy of it.

2. Name one small and quiet way has He blessed you with His peace and comfort.

–In the watching of my garden plants bloom and grow. It reminds me of His delight in me, and that He cares about the little things.

3. If you could stand anywhere on the earth and sing all by yourself, where would it be?

–On a stage with a microphone.

4. If you could relieve one person’s suffering today, to whom would you minister?

–My 4 year old cousin who was just diagnosed with cancer.

5. What is the name of the last flower you smelled?

–Hydrangeas from my yard!

My nominees:

http://pitterpatterart.com/

https://www.mundanefaithfulness.com/

http://howilivewithals.com

http://hisgreatestofthese.blogspot.com

Questions for my nominees:

1. Name three songs you would put on an uplifting/encouraging playlist.

2. What is your #1 comfort food?

3. If you have free time to read, what do you read?

4. If you could fix one thing in the world, what would it be?

5. What does Hope mean to you?

I look forward to hearing everyone’s answers, and learning a bit more about you each. Thank you again to Kim for nominating me for the Barnabas Award. Barnabas means “encourager.” I hope that I can continue to use this space to share my story and hopefully bring some encouragement to people along the way. We are all in it together!

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

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Summer Lovin’

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!

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Gone

My heart hurts tonight. This afternoon I went through my paramedic jump bag to get it ready to pass on to my partner. That hurt. 13 years worth of remnants of a life that thrilled and fulfilled me. Perhaps I’m a little bit angry this time to have to leave it all the behind. I’m so deeply thankful for this time I have now, but I do miss working as a medic terribly, and I haven’t quite learned to reconcile that yet.

My signature green scissors… my brightest helmet light… the fun bandaids I always made sure I had so no one would have to get a boring one. Unused gloves and sheets of paper waiting… for the next call that won’t be coming.

Look at this I found. It’s so ridiculous, but you must know.

I was running on a very intoxicated transient man one night, and as we neared the hospital I reached across him to grab the phone we used to call report ahead. It had one of those old school curly cords. Well as I stretched the cord to reach my ear the receiver snapped out of my hand and smacked my poor patient right in the middle of his forehead. It hit him hard enough to split the skin, and blood trickled down toward his eyebrows. I was mortified. I stammered apologies as I tried to get him cleaned up. He assured me there was nothing to worry about; that I was doing a great job and he was just fine and not to worry. I was impressed he was taking it so well, and rummaging for a bandaid. It just happened that pink Hello Kitty bandaids were all I had left. Oh my goodness this was getting worse! At this point he was still encouraging me and swearing he had no cares in the world. I marched into the emergency department that night in a hot blush, wheeling my drunk, homeless victim with a pink girlie bandaid right in the middle of his forehead. By this time he was telling everyone what good care I had taken of him, and asking me to marry him. I was so embarrassed to tell the hospital staff what happened, but he was just the most gracious man, beaming up at me with that goofy bandaid. I definitely needed his grace that night. I have always wondered though what he thought the next morning when he woke up with that pink Hello Kitty bandaid on his head.

I miss getting to connect with people like that. I miss the rawness and the realness and everyone just trying to do their best for one another. I’m honored to pass my bag on, even though it’s hard. I know it will be in good hands, and it will see to caring for many more people who need compassion and a helping hand. I’m glad to see it have life once again, though maybe for a nostalgic moment it made me miss who I was.

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

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July 14th

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!

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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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Memories in the Making

We’ve had some difficult conversations as a family about what our future may look like. Mostly to be forthcoming with the kids, because even though we never can truly know the days ahead, it’s fair for them to be prepared based on what we do know. These conversations have opened up a lot of dialogue about the here and now. I know we all wish to be kind and loving and live our best lives every day, but sadly it often seems to become most poignant once you have a scary unknown on the horizon. I wish we could all start sooner, but I know firsthand how easily we get caught up in ourselves.

As a family, we continue to talk about the importance of letting the little things go, and making memories that are rich in kindness and large in love. We talk about making choices that will leave us with important experiences rather than things. We talk about what will be left behind when each of us are gone.

This train of thought is what spurred us to get away for some fun and relaxing family time together. We needed to just be us and focus on enjoying each other and spending time together in some of our favorite ways. Our everyday consists of a lot of time with me in bed, or laced with doctors and medicines, so we went for the opposite and ran for the sun and sand of the beach in Boca Raton Florida. It was glorious!

We had two extra daughters along with us, and all the kids were troopers for the two day car ride squished into our Pilot. They passed the hours with pipe cleaner creations, jewelry-making, mad libs, and tons of snacks. Add a little fighting and a lot of giggling, and it was a road trip for the books. We were rewarded with a week of sun-kissed skin, sandy toes, scuba diving, snorkeling, go kart races, bumper boats, and late night swims. It did my heart so good to see the kids able to just be kids; playing and laughing and enjoying all the things a young one should be enjoying.

It was a little bit intimidating at first to think about leaving my comfort zone of home. I had to push back fears of getting stuck in a hospital far from home. We don’t always travel, but when we do we make sure to check out at least one local hospital… this time for a terrible allergic reaction I had to some antibiotics on our drive to Florida. I received the best possible care though, and it hardly put a wrinkle in our trip. The rest of the week I felt rested and relaxed and enjoyed days of less pain and more energy after drenching myself in the salty waters. My family was helpful and patient with my pace, and never complained when the time came for a recovery nap.

We returned home with tan lines and a sandy car and hearts full with memories of a wonderful week just being us. No worries. No doctors. No scary talks. Just fun and sun and ice cream and enjoying each other’s company. It was worth it. Every bit.

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