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The End

All things must come to an end. Except suffering maybe. The verdict is still out on that one. I do not know anymore why I am so candidly sharing my heart-thoughts with a world unknown to me. When I first starting blogging, when our daughter died, I found it therapeutic. Getting my thoughts out and also believing they might help someone else who was going through trials somehow eased a bit of my grief. Then my life carried on and this horrible disease struck, and I kept putting it all out there. The good, the bad, and a lot of the ugly. What I’ve come to realize is I don’t know what the purpose for that is anymore. I am blaring my deep hurts, vicious disappointments, and strongest hopes to an audience who can neither see nor hear me, and the void of comforting souls doing life beside me remains vacant.

Perhaps one day my children will read my words and gain an understanding of the storyline that played in my head, hidden beneath the brave face I tried to put on for them, and they will learn the truth-depth that is woven in the coming and going of our every day.

Thank you each for being here to follow along and cheer me forward. For now it is time for me to step away, to let my silence be the echo of the words I have clung to for so long; Choose Hope.

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Empty Stockings

I opened Facebook this week, and it didn’t take but a couple of swipes to see a pattern. 

The Christmas season is upon us, and with the joy and anticipation, there are many people feeling heavier emotions as the day of wonder draws near.  There are people having their first Christmas since the death of someone they love, and there are people who years later are still feeling the sting of someone’s absence.

For those who have lost a loved one, the celebration of Christmas will always have painful spaces that are difficult to fill.  There will be an empty stocking, a missing ornament, a lonely heart.  Please don’t ignore what is all around you; you can help make the holidays more bearable for grieving hearts.  Help them remember, say their names, do something to let them know their loved ones are not forgotten. 

We are all trying to find ways to include our people, even when they’re no longer here. Knowing that our family and friends remember our loss is a healing part of moving through grief. 

Take the time to think through your friend list today, see who you can reach out to with a bit of encouragement as you remind them that you see their grief, remember their loved ones, and choose to help fill those empty spaces during this time of year.

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

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Missing…

“They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad…”

I am still going to bed having filled out my gratitude journal. I’m still whispering thanks for my multitude of blessings. I know tomorrow is a new day with new promise… but tonight, tonight it just doesn’t feel fair.

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone.
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone.”

-Mercy Me “Even If”

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Let’s Talk About It

I have been trying and trying to write a post, but the words just won’t flow, so I’m just going to keep it simple. I’m sure most of you have already seen posts announcing that October is miscarriage and infant loss awareness month. Loads of people have been publicizing their take on 1 in 4, and trying to make the lives of their babies seen. It may have surprised you to see friends post about it that you didn’t know had been through this. The best thing I can pass on to you from my experience with miscarriage is this: it’s ok to talk about it.

We’ve had many people talk with us about the death of our youngest daughter because even though she was young, she was still here.  Our people met her and knew her and got to participate in her short life.  Our friends and family do not however, talk to us about the two babies we lost to miscarriage. That’s taboo, and people don’t think it’s ok.

Let me tell you something about people grieving a miscarriage. It is healing to talk about it.  One of the worst things about a miscarriage is that it feels like a baby that you pinned so many hopes and dreams on has slipped away unnoticed.  That mom and dad want their baby to be seen, known, acknowledged.  As soon as they found out they were pregnant they started imagining every event and holiday with that little one a part of it.  When that dream is dashed away, there are going to be holes. Remember that they are missing that little one when those special days come around, and don’t be afraid to acknowledge it.  A small token of your love, a text, a kind word… these things will go a major distance in helping to heal that mama and papa’s hearts.  Let them know you know they are missing their baby.  Let them know that you’re sad too that he or she isn’t here to celebrate.  Let them know that you care about their hurt.  I promise you these little things will be so much less awkward than you imagine, and will be soothing balm to a grieving heart.

 

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

 

 

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The Grumps

After a sleepless night, I’m curled under my favorite blanket watching a cloudy gray sky. I’m dealing with some nagging pain following a procedure yesterday, and it’s got me feeling down. Well, maybe just sorry for myself. There were other things I wanted to do with my day today. Thinking how to be grateful anyway… there are so many with larger struggles than I. I can lie here and save my energy for my little people who will come bounding in from the bus and find me with love to share. That’s where the gift is found; in strength that’s beyond my own, and that’s meant to be given away. Tell me, where are you loving beyond your strength today?

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

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Enough

I’m lying in bed as the last light of day seeps in the bottom of my bay windows.  The plasticky smell of oxygen whispers against my pillow with every breath, and I count how many times the back door chirps open as the kids run in and out to grab things for the box fort they are making.  They are soaking in the warmth the summer evenings still offer, even though school is back in session.  We have just wrapped up a whirlwind adventure of a summer vacation, and as I lie in the comfortable quiet I find myself wondering if it was enough.

We planned big.  There was hardly a week that we were not out traveling or exploring or trying out some new adventure.  We knew it was good and our family needed it. At the beginning of the summer we talked about shifting our focus to the memories and the legacies we were creating of our time together.  We definitely made big and wonderful memories, but I’m left troubling over the mundane. It is easy to make memories when it’s fun and exciting, but are we making good memories in the grind of every day?  I try to think back on my own childhood and remember the small moments.  I want my children to reminisce on our dinners around the table, braiding hair in the mornings before school, and snuggling in for a book before bedtime.  I want them to remember these things because these are the things that feel so inherently me. It will be easy to remember the thrill of a concert or the awe of a canoe ride, but I hope the kindness and love and adoration I have for them seeps deep into their souls so that when they think back on the days of packing school lunches and rubbing backs in my bed they will be overcome with the remembering of the safety and love that was there. We may still have a wild adventure or two, but for me, I’m going to be focusing on these little moments and making sure they count far into eternity.

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 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. 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 be his wife. 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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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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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!