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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 able 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, and basal ganglia, which are 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 suffering 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 earthside.

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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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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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!

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Leaning In

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!

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For the Love of Palliative Care

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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Red Footie Pajamas

I distinctly remember my first time visiting the childrens’ unit at Cedar Springs Hospital. I was new to the city as an EMT, and while I had run my fair share of adult psychiatric calls, this was my first child.  Actually, in my naivety, I didn’t even know there was such thing as a psych unit for kids up to that point.

There I was, walking into the building for a boy under the age of 6 with an arm injury… thinking he must have been the son of someone who happened to be visiting.  I’m certain there was an audible squeak of my boots stopping abruptly against the hard floor as I turned the corner to find the entire wing of the building occupied by children of various ages. A staff member began rattling off the details of how he fallen out of bed, and my mind was searching for the inexplicable reason that he had been sleeping in a tasteless wooden bed in a duplicated room with hard sterile floors instead of tucked into the shelter of his parents’ hugs and kisses in his own familiar bedroom.  I was silently trying to piece together this mystery when another staff member ushered my patient into the hallway; a dark-haired little guy, hardly taller than my hips, padding silently in red footie pajamas.

That night I learned one of those hard life-truths that you don’t learn little by little; one of those truths that smack you in the face like the concrete-sting of a belly flop into icy water.  Though I lost that bit of innocence on that call I still had many questions bouncing around between my mind and the soul that stared out at me from those young brown eyes.

It wasn’t long before running psych calls for youngsters wasn’t unusual for me.  I ran the frantic 9 year old who pleaded with his grandma to give him one more chance after tearing apart the whole house.  I ran the 15 year old cutter who had run away from home, and the 13 year old boy who successfully took his own life.  I saw a new world of confusion and pain and I struggled to understand it.  There were those who were vocal about their opinions; it was easy to assume that a lack of parenting or responsibility had created this brokenness, or that these were just bratty children needing firmer discipline.  While I was never one to say it out loud, I suppose in some ways I thought the same thing.  I wondered if the guardians were just tired of dealing with the hard work of parenting, and wanted to pass the adversity off to someone else.  I wondered if these kids felt so invisible that their gashes and outlandish displays of defiance were the only means left to spark some flames of attention from the people they craved it from.  While I refrained from joining in the open toxic banter of judgement, I still pondered these questions because some things you just can’t understand until you’ve tasted them more personally.

Fast forward several years to my own boy standing at the dawning of teen-hood.  Two parents who loved him unconditionally, a stable home in which all his needs were met, a routine of discipline and appropriate freedom, and yet his soul was changing, darkness clouding his once crystal blue eyes. Despite all the good things in his life my young boy had experienced tragedy that he was never meant to have to bear.  His normal had been ripped and shaken by such affliction over a short amount of time his soul halted in shock from the uprooting of all he knew to be true and safe.  So began this terrible and frightening battle of his entire being trying to reconcile things that his young soul was not created to understand.  He learned to build impenetrable walls to guard his bleeding wounds from further pain.  He forced himself to not feel so that he would never again know the devastation of a hurting heart.

Somewhere between watching his destruction from an utterly helpless distance, and screaming helpless tears into starlight night after night I came to understand the full story of that boy in the red footie pajamas.

It’s not for anyone to judge why these kids are the way they are, because the truth in all of them is that at some point they experienced a hurt that was more than they knew what to do with.  There are insecurities and scars and genetic dispositions, and I guarantee you not one of these kids suddenly woke up one day with a desire to be angry or dangerous or out of control or truthfully, an outcast. There is a world of hurting young people who need not our judgement and our assumptions, but our understanding and our unbiased desire to reach out to them and help fill those gaps and holes that created their unbalance to begin with.  What would the world look like if all the adults stepped up to give the attention and meet the needs that these kids so desperately need met?

It is with greatest sincerity that I say thank you to the adults that have stepped in, or even been forced in, to stand in the gap for my son.  I get it, I do.  I know that your 25th patient contact of the day is exhausting.  I know that you came in not feeling well to begin with, or with your own trouble going on, and yet you still showed up to give of yourself to help my boy, and so many others, with his healing.  I know that in the big scheme of things, the little issues these kids are making monstrous seems so outrageously ridiculous that’s it’s tempting to give a shoulder-shake of reality.  I know that after a long day, 2am was not the time you felt most compassionate when you had to get up and deal with a new admission, or a meltdown,  or a half-hearted suicide attempt for attention, or an all-out brawl.  I know that there are a lot of days you wonder why you chose this, or you think about moving on.  I know that it may seem thankless and pointless some days, and that you may question whether you are even making a difference.  The truth is you are some of the bravest, most selfless, most compassionate people to walk this earth.  This world does need you, and you are making differences, even if they are tiny baby ant steps.  In our universe, those ant steps are huge.

So thank you for what you do day in and day out; for the sacrifices you make and the things you endure so that every story has a chance at a happy ending, and that every hurting young heart that crosses your threshold knows that someone fought for them, even the boy in the red footie pajamas.

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