I am so sad.
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.
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 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.
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!