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.
For days my kids and I chatted about what we would do on Mother’s Day. Sleep in…snuggle up to breakfast in bed… go out to a favorite lunch after church…stay in playing board games… go out to explore the beauty of a new park.
All week I had been hearing the excitement of my littlest guy as he earned his own money to create a project at school that his whole class were each making for their moms. When he came home from school Friday holding a beautiful flowered gift bag he was vibrating with excitement over getting to give it to me on Sunday.
Friday afternoon we got a call that would demolish all of our weekend plans. Ever since my shunt revision surgery nine weeks ago I have been fighting infection in one of my incisions. My neurosurgeon has kept in close contact with me as I know have done multiple rounds of antibiotics to try to clear it up, and sent regular photos of my incision to document its progress. Unfortunately on Friday it was obvious the infection has gotten much worse and was not responding to the antibiotics. It is a dangerous place for it to be located as there is a very small distance from the end of the tube to my brain. We have given ample opportunity for it to heal itself to avoid further intervention, but Friday it became obvious that my neurosurgeon was going to have to step in.
My kind and gracious neurosurgeon requested that I drive to Indianapolis to be admitted through the emergency room. They would immediately start IV antibiotics and plan to take me to surgery Monday to remove more of the shunt tubing and hopefully eradicate the infection. My heart sank at the thought of another surgery, but most of all at the thought of being far from my family again.
It felt like I had a boulder in my stomach when I sat Colby down to tell him the news. As expected, his face dropped as I told him I would no longer be home for Mother’s Day. He sat with his chin in his hands and big tears silently rolled down his cheeks. “This’ll is the worst Mother’s Day ever, Mom.” I had to agree. It was heartbreaking to see his grief over being able to plan a special day for me. We decided we would have a welcome home/Mother’s Day celebration on the day I get released from the hospital, so he was given the option to give me his gift before I left for surgery or to save it for when I came home. He said he wanted to give it to me now so that I could take it with me to the hospital.
My heart will forever have captured the picture of him walking into the room so carefully and proudly holding the flowered gift bag that he had chosen for my gift. He sat by excitedly as I unwrapped it. Tucked inside was a small wooden frame carefully decorated in butterfly and flower stickers, and holding an adorable photo of my precious eight-year-old, holding a beautiful bouquet of flowers. The tears hung in my throat as I lavished thanks on him and gave him all the hugs and kisses. It was the most thoughtful gift ever. He made sure I had room to take it with me to the hospital.
My sweet girl Baylie also gifted me: a delicate necklace with the word “Hope” on it. Boy does she ever know!
Late that night Mark took me to the store and I picked a small gift for each of my kids so that they would have something from their mama for Mother’s Day. It was so special the next morning to be on the phone with them as Mark handed them each their gift from me. Loneliness and disappointment turned into excitement and smiles as they each opened something from their mama 110 miles away, but right there with them at heart. It was not the Mother’s Day we imagined, but we found the grace to make it something special and memorable, and we still have a Mother’s Day celebration day to look forward to upon my arrival home.
My sweet boy Jacob surprised me yesterday and drove the whole two hours here to spend some time with me. I can’t even express my gratitude at how much it uplifted my spirit. These sweet babes have touched their mama’s heart in ways they’ll never comprehend.
Last night after Jacob left I had the kindest hospital tech taking care of me. He asked me about my kids and listened as I raved about them. He then sneaked off and brought me a delicious chocolate chip cookie, that I believe were supposed to be just for the staff! “Happy Mother’s Day,” he said. “I’m sorry you’re spending it here.”
It truly is each small kindness and bit of grace that keeps me going.
Today Mark will come down to Indianapolis to be with me as I’m taken to surgery. I’d greatly appreciate your payers for all to go well, and for there to be no more complications, only healing from this point forward.
Thank you for being my people and standing in my corner to hold my hands up when I’m too weak. It means so much to know I have an army of people behind me on the hardest of days.
Several weeks ago I had surgery to correct a problem with my VP shunt. A small handful of days before surgery my hospice company had been working on my recertification; that is getting everything in place for me to receive another 6 months of care. I was very anxious about surgery, but confident in knowing when I came home I would be in the good care of my hospice team. They have been so supportive and able to meet my needs no matter the hour.
Two days before surgery I got some very surprising news. My care team had collaborated, and they believed I have more like a year or two to live, rather than a number of months. On the day of my surgery, hospice would be pulling out of the picture and I would be transferring to palliative care, another aspect of comfort care.
At first we celebrated what that meant. The doctors seeing my condition stabilize and giving me a greater expectation of life was something to worship over! We had been seeking out some more natural ways of healing, and with the help of some friends also going before the Courts of Heaven to take ownership over healing for myself. This news seemed to be a nod that God in fact wasn’t done with me yet, and we had much to celebrate.
I am trusting God’s plan, but the transition has not been easy. When I came home from the hospital after surgery there was no one to come check in on me at home, and no one we could call at any hour if we needed more support. When my pain rises to unbearable levels we have to wait on a doctor appointment to address it instead of having immediate intervention from home. When I’m dry-heaving for hours on end and unable to keep my medicines down, we are on our own to fight through until relief is found. Instead of a phone call or home visit every week from one doctor who manages everything, I’m finding my schedule filling up with appointments I have to get to in order to see each doctor that handles each problem individually. That alone is exhausting.
I am dealing with infection from one of my incisions from my recent shunt surgery. Unfortunately because of where it is there is a risk of the infection traveling to my brain. It has taken many days and a slew of phone calls and my need to start IV antibiotics has still remained unresolved. These were the things that were easy when we had the hospice team at our fingertips.
While we celebrate that no more hospice means the anticipation of more days with my tribe, and perhaps even a complete healing of my body if that’s what God wihu, it has also been a bit of a challenge to adjust to. I did not magically feel better when I was given this news; instead I have continued to fight hard daily battles, only without the support I had grown comfortable with. I have had to fight harder with less support, and my capacity to do so taps out so quickly. It has meant long stretches with no relief from pain Sleepless night upon sleepless night. Indescribable fatigue having to make phone call after phone call to set things up or to get myself out in my wheelchair to see doctors in person.
I pray this will settle down; that we will eventually find a rhythm in which my needs are met and we can go longer stretches between doctor visits. I pray my focus can remain on living my days well and embracing the moments that will last. Right now I feel like there’s not enough left of me for my family at the end of the day, and I hate that feeling. I know God has a plan in this. Will you please pray that members of my palliative care team will rise up to take some of the burden from us? That I will find rest and restoration at home, and be able to extend myself further to my family?
I’m thankful for you, dear reader, and the support and encouragement you have graciously continued to extend to me. Please tell me how I can pray for and support you as well!
“War is hell.”
-General William Tecumseh Sherman
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I am tired.
Tired in the marrow of my bones and to the bottom of my weary and tattered heart.
I feel beaten by the daily battle of fighting for life and time. Battling the indescribable pain that ravages my muscles and bones. Battling against the constant nausea that the pain brings. Battling to feed a body that usually has no appetite. Battling to take breaths when even while awake my body forgets to.
I am tired of seeing the grief my children carry over watching me become so different from the mom they knew. I am tired of watching my husband grieve over the things we used to do but no longer can. I am tired of feeling like a failure because of the things I can’t accomplish anymore.
And then I flip open my journal and there, taped inside the cover is the reminder I left for myself…
And I look at their faces and feel my weary heart swell with the uncontainable love I have for them and the bottomless joy that they bring.
And I pull myself up and don my armor and push through each battle with renewed determination. Because no matter how tired I am they will always be worth the war.