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 tried to have a guest post because this is difficult for me to explain, but I will do my best.
When I had brain surgery in March I suffered an injury that has left my memory severely impaired. We met with neuro specialists last week after extensive testing, and the results were grim. My short-term memory barely lets me see a word and then write it down.
This situation has caused the confident, sure-footed version of myself to curl up and withdraw from situations where I may need to draw on my memory. Friends, hobbies, activities that kept me going have only served as a reminder of how out of touch I am. Important things like birthdays and promotion dates and even that a friend has a hard thing coming up are all things that I grasp aimlessly for now; unable to remember long enough to follow up and follow through. It’s embarrassing and it’s crushing; taking the very essence of my talents and gifts. The only way I have known how to cope with this new limp is to pull back and retreat. I have hidden away, afraid that my “forgetfulness” will be perceived as uncaring and dismissive. Being the people person that I am, I just can’t bear the thought.
Supplements and mind exercises stretch from days into weeks as I try to find anything that will help support my memory coming back to me.
I hope that my people remember the me that could remember, and know that my heart is still there, longing to be that girl again.
Despite the assuringly positive comments I receive about my ability to tolerate high amounts of pain, I am not feeling it right now. For weeks now we have been chasing my discomfort with all the things that are supposed to help, and I still find myself awake, alone through the dead hours of the lonely nights, rocking and squirming in desperation as I seek even a short reprieve. This disease has large muscle groups locked involuntarily into forcible contractions that refuse to relax and allow me to enjoy the comfort of even a few hours free from pain. I keep telling Mark if pain alone could kill me, I would be dead. Please stand with me, plead with me, knock on the door of Heaven for a reprieve for my sake. I can tough it out through a lot of things, but I am reaching my limit.
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 😉
Recovery from this last brain surgery has been one of the most difficult obstacles yet. It was a big hurdle to get through having seizures and being on a ventilator and in the ICU right after surgery, but the challenges since I’ve been home have been a whole other beast. One that shook me a bit.
I was so excited and thankful to go home from the hospital, but I was not there long before we noticed something was really wrong. My short term memory was almost non-existent. Every day I would forget the day before, and often I would not even remember things from earlier in the same day. Entire conversations were deleted, things I had experienced earlier evaded me, and I often could not even remember what I ate for the previous meal, or IF I even ate. I remembered enough to know I was forgetting, and it was terrifying.
My husband is the very definition of steadfast. He would lovingly and calmly repeat things to me as many times as I asked, and would gently break it to me that we had already had this conversation or done that activity. Meanwhile I was curled up sobbing; broken that my husband was having to watch his young wife like this, and terrified that the rest of my days would be more of the same.
After a weekend like this my sweetheart reached out to my neurosurgeon, who unfortunately is a 2 hour drive from us. He has taken up my cause though, and would bend over backward for me, so it was no surprise that only a few minutes after leaving a message my hubs got a phone call from the doctor himself. Based on my memory problems and a handful of other symptoms I was experiencing my kind doctor explained I was probably continuing to have seizures, albeit small ones, but with enough frequency that it was throwing my mind and body into this blender of confusion. A treatment plan was initiated and they waited expectantly for results, but in my heart I was suspicious and saddened that this was truly the beginning of the end of my time here. I kept that fear to myself.
My love had a trip on the calendar way before any of this happened, so he somewhat reluctantly left me in the care of friends and family while he went on travel for the next week. That week was hell for so many reasons. It took several days to realize it had been a week since I had kept down any food. I switched to nutrition solely through my feeding tube, but quickly discovered all of the vomiting had displaced my feeding tube, so using it was not longer an option. I tried for a few more days to limp myself back to stable, but I could not even keep down jello or sips of sprite, I could only stand for seconds at a time before getting near to passing out, and my blood sugar was dangerously low. It was the last thing I wanted, especially without my wingman with me, but I had to go to the hospital for help.
It took some convincing for me to let them admit me again, but once I agreed to it they were aggressive about getting me sorted out, and I started to rebound quickly. With some IV nutrition and my feeding tube fixed, I quickly gained strength to be able to go back home. It was then that we realized that while fighting face down all week I had been too sick for us to realize that my memory was improving. Back home again I was able to remember things for longer and needed less reminders. One of my close friends had marched straight to the courts of Heaven and pleaded on my behalf, and God had honored her faith; he was healing the damage in my brain.
I will not go as far as saying that I am happy I had to go through all of that, but I will say amen and amen to my God showing his grace and great loving kindness in choosing to bring healing and restoration to me, and I do not believe he is done yet. I would not have chosen this path of suffering, but I will hold on because suffering produces perseverance; perseverance, character; and character hope. And hope has been the song of my heart through years of great challenges and life changing pain, and it will continue to be my heart song until my eyes finally gaze on the Giver of all hope.
Well surgery didn’t go as planned. Fortunately we are well versed in changing plans!
I was admitted through the ER Saturday with an infected VP shunt for IV antibiotics. They took me to surgery Monday.
Monday night after surgery I had a series of seizures. I was intubated in the ICU and don’t remember the rest of the week. They are caring for me and trying to get me back home. Thank you everyone who has brought meals or watched my kids or sent flowers. We could not carry this weight without our community. Your grace runs deep.