With summer break upon us I’ve been feeling terrible for all the things I cannot do with my kids. I want to go hiking with them. Instead they get stuck at home all the time watching too many screens. I want to take them to the pool almost every day, and explore the national parks around us. Instead I’m puffing walking up the stairs to tell one of them goodnight. I want to have all their friends over for late night fires and s’mores on the deck. Instead I’m exhausted by dinner time and asleep hours before the rest of my crew. I want to plan an exciting vacation getaway and surprise them. Instead I’m having major surgery that will take all summer to recover from.
I want to scream. And a little teeny part of me wants to quit; wants to give my family the freedom to live unchained. This mess is not living up to my well planned out expectations, and I’d like a redo please.
My friends, I know so many of you live joyful and exuberant lives in spite of much pain. You live the story that you did not sign up for, and yet you receive that cup so graciously, with kindness and contentment that I long for. Please share your wisdom… what is it you do when you want to throw in the towel on your own race and trade for a different one?
Jesus, please help me live for /your/ expectations. Help me to be thankful for what I have instead of mourning what I do not. Help me to make the most out of my time awake, and not have guilt for the times I need rest. Help me to have meaningful time with my children, regardless of what we are doing. And Jesus? Help them understand. Let their hearts become soft instead of resentful. Let their disappointment develop deep character. Help all of us to trust you with our story and to use it to bring you glory.
Gifted an incredible gift to slip away just the two of us, my man and I took every opportunity to soak in the great joy held abundantly in the salty waters. Each afternoon he would tenderly inflate the vest to keep me afloat, and don his long fins to do the kicking for the both of us. As he gently pulled me along I marveled and squeaked with delight at the stunning colors and entrancing shapes of the sea creatures below.
One hot afternoon the winds had been stronger all day, and the choppier waves had churned up a hazy silt from the ocean floor. Just as we had done before, he held tight to my hand and pulled me along the surface of the water, snorkels upright amid the salty spray. This time I felt different. Even though my hand was in his, the murky water clouded everything from view, and when I looked straight ahead the sides of my mask obscured the rest of my view of my helpmate alongside me. As soon as this happened my heartbeat thumped frantically faster and I felt lost and panicked in the disorienting haze of the sandy water. Then I turned my face to the right, and clear as day I could see him right next to me guiding me along, and in an instant the throb in my chest slowed and a peace settled over me, knowing I was not lost or alone. Slowly though I would turn my gaze forward again only to be paralyzed repeatedly as his comforting presence disappeared from my view, and then look up again to see the comfort of his company right next to me.
This week I took calculated breaths as I tried to distract myself from the pain of a necessary procedure. With each new bolt of agony my mind would race through the what ifs, panicking myself into wondering if this would last forever. Then I would look up, and there squished in the corner where he could reach to hold my hand was my heartthrob, eyes locked, waiting to meet mine. Again that wash of peace and okayness would melt over me and quiet the pounding of my thoughts. As long as I held his gaze with mine I could do this.
There was where I realized… what a pertinent reminder; that when my focus is on other things I get lost, scared, and unsure of my direction. But when I lift my eyes back to the face that has never turned away from me, I find peace, safety, and belonging. I draw from that strength and it gives me the courage to keep moving forward, however foggy the future may be. Even though my Heavenly Father is right there holding my hand, it is I that has to raise my panicked stare and remember that with Him as my focus I have the courage to face whatever hard comes my way.
What about you; do you forget to look up when you’re in the panic of the moment? Do you find yourself looking for someone to steady in you? He’s always there waiting, just turn your eyes up.
Smoke mingled with the clean scent of antiseptic as the ambulance doors were thrown open. A woman’s voice crackled through the radio following the long beeps of the station tones. “We have a call!” My partner’s eyes were wide with anticipation as she repeated what I was already hearing. We had been working on a training exercise at the fire station, practicing rescue of a downed firefighter in the midst of a woodsy blaze. The large rubber manikin that was our pretend victim lay heavily on the stretcher that was now needed for an actual patient; the victim of a horrific vehicle collision. Wasting no time, I jerked the straps off of our lifeless dummy and heaved him over my shoulder, all 165 pounds of him. Nudging wider the ambulance door, the whole battalion had eyes on me as the scene played out that would be retold for years to come. I, the tiniest on the department standing at 5 feet 2 inches and a hundred and five pounds marched with that dummy over my shoulder and chucked him into the empty garage bay of the station. Spinning back around I crunched through the gravel and hopped up in the passenger seat of our rig and we barreled down the road to my first trauma call.
That was the day I earned my nickname; Mighty Mouse. The story would be grinned about for years to come; the department’s smallest firefighter who manhandled the Rescue Randy dummy because she got her first real patient. A mix of adrenaline, excitement, and the hard work I had put in to keep up with everybody else had enabled me to perform that amusing feat that day.
Fast forward to a cold April day in 2022. My arms shake and spasm as I lift a stack of dinner plates toward the open kitchen cabinet. Overpowering my waning muscle strength, the stack of plates comes crashing to the counter, shattering the bottom plate. I bite my lip to hold back the moisture that pools in my eyes, and gingerly start gathering the shards while feeling like I am picking up broken pieces of my hope.
It is endlessly humbling and frustrating not to be able to accomplish menial tasks when I once let nothing stand in my way. My pride stings when I have to ask for help instead of being the strongest. It hurts.
I can only surmise that this is one of the greatest lessons I need to learn; that alone I am powerless, and need the unending strength that God in his loving kindness offers to me. So many times as I call out for someone to help me lift or move something I am reminded of my desperate need to call on my Heavenly Father for help. Do I always remember? Definitely not. But he is gentle in reminding me that I do not need to rely on my own strength, that he’s got me and all I need to do is rest in the power of his might.
Tonight is opening night for my talented Junior girl’s next musical. She’s starring in the opening number, as well as solos throughout the show. I should be calculating what time to get there for the best seats, and picking out what kind of flowers to surprise her with. Instead I’m struggling to get myself upright, and fighting for breath, and today it has the better of me. Today I’m angry that I can’t just focus on my daughter. I’m frustrated that my presence at her show is threatened by my ability to get myself ready and drive there. I am mad that the feeling of suffocating is going to distract me from the beauty of her blooming there on the stage. Today I want to just be like the other moms. I want it to be easy.
Maybe easy would make me less the person I am. Maybe if I did not have to fight so hard, the victory would be lost on me. Maybe if it was not such a gift to be there it would seem mundane. So I’ll fight. I’ll show up, flowers in hand and I will soak in the miracle of getting to be there to see her. I will fight back tears of gratitude and I’ll cheer the loudest because I will know the absolute gift it is to be there. Heaven help me.
I have not slept much this week. Pain, my constant companion is especially rough right now- it’s searing edges too sharp to allow me to relax into slumber. In the lonely night hours that seem to drag on I have much time to ponder. I could count the ways I wish my life had turned out differently, or awaken to each gift of grace this pain has made me see.
This picture was after two nights of no sleep. I was ragged. Beneath the weariness though is such rich contentment. This day brought the joy of watching my little excel at his basketball game. Then I was able to pack a suitcase for my love as he prepares to leave town for work again. That allowed him the time to work on a big surprise that delighted our little people. The night was capped off by nibbling at delicious cuisine that I didn’t have to cook- my favorite! I was so thoroughly beat, but so full, and so thankful. The miracle in each of these small and sometimes mundane moments is not lost on me. I am fighting for each one, and will cherish each box I get to check, sleep or no sleep, because the joy of being present in these big and little snaps of time is truly the greatest treasure.
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.
I am facing a hard new corner of my story. If it is analyzed too much it quickly becomes scary, unmanageable, a mountain too big to climb. I am choosing to face this one differently though; with open hands. Hands open to whatever God has for me and /knowing/ He will make good come of it.
In a beautiful song, Open My Hands, Sara Groves sings the words that ring true in the depths of me right now.
“I believe in a blessing I don’t understand. I’ve seen rain fall on the wicked and the just. Rain is no measure of His Faithfulness. He withholds no good thing from us.”
I covet your prayers this week for peace and comfort over my family as we have hard talks and make tough decisions that I don’t feel ready for. Jesus will meet us there.
Sometimes it is easy to let myself get dragged down and have a pity party about the things I cannot physically do anymore. I am constantly working to change this posture of my heart by replacing the “can’ts” with gratitude for the things that I still can do. Yesterday provided the most epic opportunity to make a can out of a cannot.
I have been enjoying a few days with some girlfriends at my friend’s lakehouse. They have lovingly cared for me to make things as easy as possible; driving me, cooking for me, carrying my bags, and bringing me whatever my heart desires. I am so spoiled.
Yesterday was boat day. Because of a hitch with my medical care and insurance, I have been without portable oxygen when I leave the house for some time now. Instead of letting me be without oxygen for a few hours while we were out boating, these girls packed up my boulder of an oxygen concentrator and lugged it down hills and over docks to get it into the boat so I would not be without it.
We had an amazing day buzzing around the lake soaking in the warmth of the sun and cooling off in the refreshing waters. We laughed, we relaxed, and we stopped at the big pier for some of the best soft serve ice cream.
It was near the end of our time on the water that we happened upon the “jumping bridge.” I had seen it before as we had driven over it. An overpass covered in colorful graffiti, it beckons the bravest of swimmers to climb the steep, rocky bank beside it and plunge into the deep water below. I had commented on how much my oldest son would love to do that because he is thrilled by finding tall things he can jump off of into water. And then my mind went on a lot of little bunny trails, but I’ll skip that part and get to what you want to know. I decided, “I’m doing it.”
My friends watched anxiously from the boat as I ditched my oxygen tubing and awkwardly swam-paddled my way to the shore. It was then that I realized my chest port was still accessed; a big risk for infection. I found a place where I could stand firm between the jagged rocks, and I began pulling off the medical tape and dressing, finally able to pop the needle out of my chest. With no sharps container in sight, I tied the tubing and needle around the belt of my life jacket so I would be sure not to leave it lying around.
It took me a few minutes to pick my way barefoot up the rocky incline, but I finally made it to the top and limped my way to the middle of the bridge.
There was a young boy standing nearby, trying to gather the nerve to jump off into the water below. I asked if he wanted to go together, but he wasn’t ready yet. If I had stood there very long and thought about it, I probably would have talked myself out of it, so I took a few breaths, gave my friends the “ok this is about to happen” sign, and I stepped off the ledge into the nothingness.
To an able-bodied person it may seem small and insignificant for me to have made that jump, but the joy and power I received from that free fall into the cool, summery water put a confidence and satisfaction in my soul that will last long after swim suit season is over. I did something the world tells me I’m incapable of. I did something my body sends off all the warning signals against. I did something that says no, I refuse these limitations and I believe in more.
It was not until I looked back through the pictures that I realized that right where I had chosen to stand the word “Hope” was spray-painted on the concrete behind me. How perfectly perfect.
Sometimes we have to accept “no,” but I hope that you never stop pushing for the “yes,” because the reward is most definitely worth the pain, even if all you can do is try. That is already a win.
Click play below to see my epic jump!!
I spent the whole next day curled up in a chair and hobbling to the bathroom, but I would absolutely do it again. I made my family FaceTime me while they watched the video, not knowing what they were about to see, and it was priceless!!!!! Pretty sure I scored some cool mom points too 😉