🎶 “Standing on the promises of Christ my King, through eternal ages let his praises ring; glory in the highest I will shout and sing, standing on the promises of God!”🎶
Affliction has a way of changing the way we sing. Once, I sang this hymn standing tall, lungs full, voice rising like a joyful Baptist at a Saturday night revival—sure, strong, unquestioning. Now, I sing it slower from the quiet of my hospital bed, tasting each word, weighing every promise against the heaviness pressing on my chest. The melody hasn’t changed, but I have.
18 days. Eighteen days of one hard thing after another maddeningly marching through the doors of my life—uninvited, unrelenting. Health unraveling into painful new territories, relationships trembling under pressure that threatens what once seemed unshakeable, the future scattering into pieces I can no longer hold together. It feels like too much.
In a weary whisper only God could hear, I said, You are asking too much of me. This feels impossible. I don’t think I can do this.And yet—You must think I can.
So where, Lord, is the help You promised?
Promise. That word flickered through my tired mind and opened a remembered door: “This is my comfort in my affliction, that Your promise gives me life” (Psalm 119:50). There it was—quiet as a breath, clear as a bell: Hannah, this is your help. My promises. Stand on them.
So the words came tumbling—like a river breaking through a dam—every scripture, every promise I could catch hold of, spoken aloud over the noise of despair crowding my soul:
If I stand firm to the end, You will save me. You give strength to the weary. I will see the goodness of the Lord in the land of the living. Your name is a strong tower—I run to You. With Your grace, all things are possible. So help me do what feels impossible. Help me make it through this.
And this morning, something was different. The circumstances hadn’t shifted—the questions still hovered—but my heart? It stood. Courage where fear had sat. Steadiness where trembling had lived. God had kept His word. He renewed me. He breathed life where hope was thinning. His promises held me upright, where I thought I would fall.
My family woke to the sound of me—quiet, raspy voice —singing again like that happy Baptist at a Saturday night revival: Standing on the promises of God.
And this time, I am not just singing it. I am living it.
Most of you that see me see a small snapshot of me as a whole – usually on the best days- when I’m able to get out to church or to my kiddos’ performances. Because I’ve always been a kind of a private person, and I also fear being a burden to others, there are very few that have seen me at my most vulnerable as this awful disease has ravaged my body.
Maybe because the hard days are starting to outnumber the easier, or maybe because I am desperate for others to understand the depth of my need for help and prayers, or maybe because it’s so extremely isolating to live in this place of putting my best face forward, I am going to give you a glimpse of what it looks like and feels like to wake up and do battle against a body that is trying to kill me.
***I gave my husband permission to take some pictures of some of the hard moments***
A morning snapshot:
5:40 am. My alarm goes off. This gives me time to swallow a few pills to try to ease some of the pain searing through my body before I have to get out of bed. Snooze button a few times while the meds start to work, and then it is time to wake my littlest to start his morning routine.
Fatigue starts early, filling my arms and legs with wet cement as I go about fixing him breakfast and snuggling in on the couch to read our devotion together and watch part of a show.
7:00 am. My little is getting ready for the bus and I have to excuse myself as I’m dry heaving- my body rejecting the fact that I put pills and a sip of water into a digestive tract that has little function left.
7:29am. Last kisses and hugs before my little man heads outside to catch the bus. Worry creases his forehead. “Are you sure Mom? I can stay home from school and take care of you. All I’m going to do is worry about you all day.” I force a smile and convince him I am fine, that I’m just going to rest today. Reluctantly he walks out to the bus, stopping at least four times to look back and blow kisses and throw I love you signs. My heart could melt.
7:32am. I limp for my hospital bed that is set up in our den where I can be closer to the family. This is where I spend the majority of my time.
When you see me out and about at church or one of my children’s games or concerts it is because I have saved every bit of my energy that day and probably the day before in order to attend that event. It takes everything out of me, and I usually make it home and collapse for the remainder of the day, every bit of me used up on the best things.
8:00am. Through the shower and ready for work, Mark comes in to check on me and gives me any medicine I need, makes sure I am on enough breathing support, and starts a tube feeding if I’m not too nauseous. Then he goes around the corner to where his desk sits conveniently close to where he can hear me if I need help.
If I have no appointments, this is where the bulk of my day is spent. Resting and saving every drop of energy to be present for my family when they are all home in the evening. I have had to choose between the things I enjoy and feel like I should be doing- like keeping house and meal planning and grocery shopping- and instead spend time napping, writing letters for the futures of my loves, reading and sketching in my Bible, writing some works I hope to see published some day. This conserving of my limited strength allows me to be awake and upright to ask about the stories of my childrens’ days, and share a meal around the table, or attend their concerts or sporting events.
………………………………………
Tucked in the binder that holds all my important medical papers, behind the copy of my DNR is a sheet that documents most of the complications that I am affected by as a result of my disease. It is a spiderweb of symptoms, doctors, and treatments that all fall under the same central header; Multiple System Atrophy. Some of these ailments are very visible, like having to use a wheelchair, or needing support for my lungs to breathe, but many of them are tucked beneath the privacy of my roof; wrestled with far from the view of my family and friends.
Pain and spasticity are big ones near the top. They are managed by a team of two of my kindest doctors who do their best to relieve my discomfort and keep me moving. It is a never-ending battle, trying to calm the muscle spasms and ease the pain that they create. One of the big guns I have for this battle is an implanted medication pump that sits in my lower abdomen and delivers antispastic medication directly into the fluid of my spinal canal.
Some of the worst spasms I experience are from my esophagus. These come on as crushing chest pain, making it nearly impossible to talk or swallow. The only relief is small tablets that dissolve under my tongue, and then I wait for the spasm to cease.
Gastroparesis is a fancy word that means the contractions of my digestive muscles are too weak to adequately push food through in the way it should go. This has resulted in a lot of weight loss and malnutrition, and frequent nausea and vomiting.
I have two feeding tubes currently. One that goes to my stomach that I can “vent” when I’m feeling sick, and one that goes directly into my lower intestinal tract where my feedings have the best chance of being absorbed. This means often not having an appetite, or if I do eat it sometimes comes right back up.
Another consequence of my digestive malabsorption is that the nutrient deficiencies cause anemia. This has resulted in the need for blood transfusions and iron infusions.
Not being able to eat enough to maintain my nutrition also means being chronically dehydrated, so I have a port implanted in my chest for receiving fluids throughout the week. This has to be accessed once a week by a sterile process of introducing a special needle that stays in the port for the week before changing it again. Fortunately this was one of the easier things I had to learn, and my previous medical career was a big help.
Impaired balance, weakness, and muscle wasting is a result of my nerves not communicating with their assigned muscles. Weakness and balance issues causes a lot of falls, and some embarrassing situations like squatting down in the grocery store and then not having the strength to stand back up. Some of these things I’ve learned to compensate for, and some of them just mean adapting to a new normal which involves a lot more frustration than used to be.
POTS is another result of having MSA. It stands for Postural Orthostatic Tachycardia Syndrome, and it means that when I go from lying or sitting to standing, my heart gets significantly less blood return than it needs, which causes extreme lightheadedness and fainting. My heart speeds up to try to compensate, but without the blood return it turns to a losing situation. I’ve gotten to where I can usually tell when I’m going to faint (so can Mark), and sometimes I’m able to sit safely before falling, but other times it results in goose eggs, an assortment of cuts and bruises, and an occasional broken bone.
Since this illness first took hold I have had to go under for 10 different surgeries. Feeding tubes, medication pump, port implants, repairing damaged joints, and some involving my brain. My body is a roadmap of scars, boasting of the battles I’ve won.
When I had a series of seizures after my second brain surgery I sustained damage to the part of my brain that allows for short term memory. When my memory was tested following this event, it was described as severe and profound memory loss. Daily it’s a frustrating struggle as I repeat myself and ask the same questions over and over.
The disruptions in my ability to think and concentrate makes it difficult to control my emotions, leading to bouts of depression and anxiety.
Neurogenic bowel and bladder means I can’t just hop up and use the restroom; I’m confined to making sure I have urinary catheters with me at all times in case I need to empty my bladder.
Fatigue. There are probably a hundred different reasons why I feel utterly drained most of the time. Pain is tiring. Sleep apnea is not restful. Using so much energy to breathe and fight spasticity every minute of the day is simply exhausting. The combination of all of these things leaves me feeling like I could crawl into bed and hibernate for months.
The most disruptive and serious of the symptoms of MSA for me is chronic respiratory failure. This started with me having low oxygen saturation and needing extra oxygen through a nasal cannula, and wearing CPAP and eventually BIPAP at night.
It has progressed as my breathing muscles have gotten weaker and weaker, and now I have to use a ventilator with a mask throughout the night and most of the day. My doctors have had to continue turning up the pressure of how hard my vent has to blow, which is not only uncomfortable, but it makes it difficult to hear and speak. At this point even with the higher support I’m still struggling to get a good breath, and the side effects of using my vent are becoming more bothersome. My doctors are working on the next steps I need to be able to breathe better and conserve my energy.
As the muscles in my legs have grown tighter and weaker it has gotten harder and harder to walk any distance. That coupled with the extreme shortness of breath that even a short walking distance involves have left me no choice but to use my wheelchair for getting around. As much as I would prefer to walk hand in hand with my people, I am nothing short of grateful that insurance worked so kindly with us to provide a chair that gets me around and provides comfort for my tender places.
These are the hills and valleys I battle on the daily. Some days it is easier for me than others, but on all of the days I have found myself constantly held and loved and comforted by my Heavenly Father, even in the pain and uncertainty. He has given me the privilege of being able to give him all the glory, and he sustains me and provides for me whether anyone else shows up or not. He is a good, good Father.
This week I had to be moved to inpatient hospice again as the struggle to breathe spiraled me into unconsciousness. Thankfully I am now back home with my people, breathing a little easier, but I just keep replaying in my mind the moments where my good friend sat on the side of my bed in the shadows of the afternoon the day I arrived there.
I did not have many words, partly due to my being on my ventilator, and partly because it felt like there was nothing left to say. I was discouraged and hurting. My “fight songs” playlist of music was playing through my phone, and my friend came and sat tenderly on the bed next to me, taking my hand in hers and lifting her other hand to Heaven as she swayed to the words of the praise music that was playing. I’m sure she asked me a few questions that afternoon, but the only thing I clearly remember her saying, as tears slid down her cheek, was “this just sucks.”
When someone is going through something painful we often do not know what to say, and the result is we say too much. We have the best intentions to lend encouragement, but in these situations being the “fixer” is not what’s needed. It takes some restraint to not say things like, “you’re going to be ok, you’ve got this, I believe you are going to be healed, etc,” but being present in the pain is a far greater gift.
My dear friend sat there and allowed herself to feel what I felt. She did not try to give me the easy answers or platitudes that would have taken less sacrifice than sitting in my grief. And no doubt it is costly to enter into someone else’s suffering.
The reality is those pat answers are just empty words at a time like that. Suffering is hard, and setbacks can take the wind right out of you and leave you wondering how you are going to move on from where you find yourself. I urge you to learn from my friend and be willing to love your people well in their need to acknowledge that it just sucks.
This grieving what is and what’s been taken is part of the healing that is coming, and it can’t be skipped or ignored regardless of how badly we want to have the answer to the fixing.
The next time you have the privilege of being allowed into someone’s hard, hold back the urge to find the most encouraging thing to say and listen and feel and acknowledge the obvious. This sucks. I’m so sorry you are going through this. This isn’t fair. This is hard.
Providence. A young wife stripped of her physical capacity, struggling to do basic things for herself as life moments pass by, leaving her behind.
Providence. A child living his entire young life consumed with the fear his mom is going to be taken from him. Calling her from school 4-5 days a week to make sure she is ok.
Providence. Two young girls swirling and giggling as they try on their mama’s wedding dress while she watches on, swallowing hard as she wonders if she will get to see them married.
Providence. A young boy looked over as having less worth because he is different, broken. Trying to scream his presence and purpose and his charisma for life from a body that won’t let him speak, or stand, or dance.
Providence. A thin sheet of water turns to glass as the tires screech across it, slamming the car into a semi, snatching away the life of a roommate, known, cared for, and needed.
Providence is a word I’d heard but not understood very much about until a recent sermon I heard from my pastor. I learned that Providence means God is in complete control of all things; there is no chance or fate.
This week I have rolled the word over and over in my mind, trying out its relevance, wondering if I have the guts to cling hard to the truth my mind knows even when my heart feels shredded.
What I am learning to believe about providence is that it is responsible for making an important story out of the hard path I am called to walk. When I view life through this lens it lends the hope I need to keep clinging even in these darkest valleys, though not easily.
Providence and I have come head to head this week. I have challenged why God’s complete control feels so out of control at times. I have pondered why if he is able to do immeasurably more than we can ask or imagine… why don’t we always get the answers we long for? It seems that sometimes when pursuing God, he cannot be located. What then?
I discovered reading the story of Esther this week that even in such turmoil God’s name was never mentioned, yet His fingerprints were all over that story! I knew God was trying to help me better make sense of the process and better accept particularly the things that we do not prefer or do not understand taking place in our lives. These things, hard as they may be are all part of God’s plan to develop us and take us from where we are to where he wants us to be. We may not see him, but that doesn’t mean he is not behind the scenes arranging every detail for His purpose.
Even the excruciating details. Even the ones that bring you to your knees, and the ones you don’t know how you’ll ever recover from. Every single detail with His loving heart imploring me to never give up hope that the hard parts I walk through are the beginning of something important and even beautiful that he is orchestrating.
Here I am, arms wide open, bleeding heart held out to You. Trusting you will take and use it for Your Kingdom, because I know You never waste our pain, and Your plans are so much greater than my own.
As this year’s backyard vegetable gardens have started bursting with tomatoes and herbs and every size and color of squash the past few weeks I have found a gut punch creep in when seeing the ripe harvests sprawled across social media. Gardening makes my heart sing. The fresh air in my lungs and the weight of the musky earth beneath my fingers just does something so good for my soul. Only this year it didn’t.
This year as the frosty months neared their end and it was time to drop seeds into plastic cups of soil I was neck deep in my blankets desperate for endurance and relief from debilitating pain. As I considered the planning, planting, tending, weeding, and picking that would go into my garden again this year I had to swallow the hard pill that my body was not going to have strength to do it this time. The planting weeks came and went, and I was still in bed fighting for more.
Every time I glanced out my window and saw the barren garden beds sitting empty of their Springtime sprouts it hurt my heart. I decided it made me too sad to stare out at boxes full of empty dirt all summer, so I had my wingman take me to the store and I chose packets of flower seeds in beautiful colors and patterns. I summoned the energy to rake through my garden beds and pluck the stray weeds from the tilled soil. The packets were torn open and sprinkled across the soft soil and covered in compost. Finally I gave the ground a thorough soaking with the hose, and collapsed back into my bed anticipating what would grow.
It didn’t take long for small green stems and leaves to start pushing their way into the daylight. I was thankful something was growing, but as I scrutinized the growing plants I could not tell the difference between something I had planted and just another weed, and I started to doubt if anything worthwhile would be coming from my garden this year. That was about the time I saw the first post of a friend showing all of the produce she had pulled from her garden, and I felt sad and resentful and just really missed working the earth every day.
I finally had the strength one day to go out and have a look around. Picking my way around the lumpy landscape to get to my garden beds, I could suddenly see past the tall tangles of green that had taken them over. Dotted among the foliage were colors; orange, pink, yellow, purple. As I took it all in I felt the Holy Spirit whisper to my tired heart, “this beauty is for you.” A hug that gathered all my disappointment and not feeling good enough and wrapped it up in grace that extended beyond what I could have imagined.
Those simple flowers in their elegant gowns were the reminder I needed that this life will not always be what I want it to be. There will be places I fall short and mountains I cannot climb, but in place of those if I look in the right direction there is so much beauty to be found. Beauty that says I am still worth it and I am deeply loved. I may not be bringing in baskets full of cucumbers and zucchini to prepare for my family this year, but every time I look out my window at the messy tangle of green that has taken over my garden I see those beautiful colors standing tall in all their glory and I know that I am seen and known and loved. So are you, my friend. In your deepest disappointments things may not look like you wanted them to, but look around and you will find that there is still beauty to behold.
PS- for those of you wondering what on earth FOMO means… fear of missing out 😊
This last week I wrestled through some of the highest highs and lowest lows of being a mom. I pleaded for my children’s safety and their salvation. I pushed myself physically and still fell short of the standard I held myself to as the nurturer of my family. I wrestled the bone-shaking chills and pain of pneumonia and of infection contracted during my recent hospital stay. I saw the toll of caring for me in the deep, tired lines around my husband’s eyes, and I spent hours praying without fully having words; begging for mercy, for redemption, for a soft heart, for a miracle. I laid curled in a ball, trying to will the wrenching pain of muscle spasms away, and pushed down panic at the weight around the sharp daggers that tore at my lungs with every inhale. And I wanted to quit.
I begged for God to take me. I considered the process available to hasten one’s demise once they are labeled with a terminal diagnosis. I even imagined what I might still have the strength to do in order to put an end to it myself: the bone-crushing agony of it all. The very core of my being downright cracked to pieces and threw the white flag like a penalty on the gridiron. Despite the guilt it was coupled with, for a brief time all I could think about was having a way out; an end to the pain, the frustration, the burden that I know my loved ones carry because of me.
As I wrestled and fought through these overwhelming thoughts that I didn’t know what to do with, I cried out for help. What came to my mind was the story of the man who couldn’t walk being lowered through the roof by his friends to get him in front of Jesus. At first I did not really understand how this related to me and the oppressive suicidal thoughts I was battling. I was not asking for a healing miracle, I was just tired of fighting and feeling like a burden to everyone around me. The more I thought about the story though, I realized for the first time that maybe this story is less about the man and more about his friends.
Maybe the man who couldn’t walk was tired of fighting too. Maybe he was tired of having to ask people to carry him just to get where he wanted to go. Maybe he was weary of asking for a miracle to which the answer was no. Regardless of where he was emotionally, he allowed his friends to walk right into his brokenness. He called out for help, and let them use their gifts to meet his needs. They literally cut apart someone’s house to get their friend the best kind of healing they possibly could. That is absolute passion on his friends’ part, and a great big dose of vulnerability on his own part.
This story I have heard over and over since childhood suddenly took on new meaning to me. I felt challenged to resist the urge to rush through my suffering, and to instead allow my hard path to crack me wide open and let vulnerability be the fertile ground for new beauty. By trying to control the timing of my own death, I would only rob those that love me the opportunity of meeting me in these hard moments and extending the love that has carried me again and again through these deep valleys. Pondering this new concept, I realized how much this already has happened, which further encouraged me for the days ahead.
Being vulnerable opened the door to kind friends showing up to pull the weight of my daughter’s grad party that I didn’t have the strength to make happen.
Being vulnerable allowed for the most sacred moments of love and prayer at my bedside in the ICU, even before I was aware.
Vulnerability has provided opportunities for precious times when my dear friend sits with me- no matter how haggard I look, or how many days since I’ve been able to wash my hair- and we are ushered into holy presence as she reads my favorite scriptures and prays over me.
These moments matter. Our lives, our stories, and our suffering all matter. When we step out from hiding behind our privacy or our embarrassment or our shame over feeling the big feelings we feel, we open our hearts and our lives to experience the richest, most meaningful moments this life has to offer.
When we are asked to walk a road that feels impossible to walk, it does not feel natural to open your heart up and share that pain with the people around you, but I’m telling you it might be one of the most healing things you can do for yourself. It also gives validation and purpose to the people waiting in the wings to use their gifts to help you. It can be a beautiful, painful story that changes hearts and forges friendships and gives so much glory to the author of our stories.
Jesus is well acquainted with suffering. He walked the hardest road so that we can find hope along our own hard journeys. Be brave enough to open your hands and hold your story out to those who are ready to walk alongside you. You will find strength you need to keep going, help you need to make it to the next step, and you will find kinship in the broken hearts who thought no one else could understand the road they are walking.
Hastening our suffering or skipping ahead to our final breath was never what God intended. But along each step of our good, hard journey, God will meet us with his beautiful grace. It is not a mistake; his power is strongest when we are weak. (2 Corinthians 12:10). Hold on friends. Choose hope.
How do I write a letter to a 21 year old who used to fit in the crook of my arm with ease; the one I rocked and bounced and drove back and forth with for hours and hours when he would not stop screaming in the first weeks of life? How do I acknowledge adulthood to the little boy I taught to sing his ABC’s, and make himself a peanut butter and jelly sandwich? (Wellll, we are still working on that one😉) How do I give permission to soar to the little sweetling that used to look back just to make sure I was still safely behind him?
As I rise to look my blue-eyed-boy in the eye, I see the reflection of each of these moments, big and small. The insignificance of how many months old you were when you walked. The monumental moment of greatest joy when you shared that you’d given your life to Christ. The skinned knees, the baseball trophies, the nightly kisses on the cheek that continue to this day. The victories and achievements, as well as the falling short and the battles. All of these tiny moments making the whole amazing you, and the joy and enthusiasm and determination that you bring to this world.
I am proud of you for letting each moment, whether easy or excruciating carve you into who you are today. I know it does not stop at adulthood; you have many years and many more small moments that will shape and change who you are. Promise me above all you will cling to your faith in God, you will be an advocate for what is right; standing up for those in need as you always have. Those truths I whispered to you in bedtime’s drowsiness, those songs I sang; keep them tucked away to always lead you back to where you came from. As you stand at the brink of this new ridge in your life, so much behind you, and yet such a beautifully immense expanse widening your eyes in front of you, I pray you remain anchored to that which is love and truth and family, and that you F L Y.
I love you, Jacob Andrew; the boy who made me a mama.
Today a nurse and doctor from hospice came out to my house and assessed my condition and the things that have declined for me over the past few months and weeks. We talked in depth about my goals and my family’s needs, and the reality of the days ahead of me. They interjected hard conversations with compassion and kindness and humor, and in the end as they admitted me under home hospice care, I felt as though I had been given a great gift rather than something to grieve.
How perfectly that word describes the jumble of days that has been this week… “the period between daylight and darkness.”
Thank you for hanging in there with me this week. I realize now that I dropped off the planet in the middle of conversations, appointments, and even in the middle of uploading a photo to Facebook! I know many of my friends and family members were wondering what on earth was going on and why I wasn’t answering.
Rendition of a photo I posted this week without knowing it. No one knows what it is… to me it looks like twilight.
This weekend my respiratory drive decided to take a vacation, and my family found me unresponsive. For my medical peeps, I had a GCS of 3 when paramedics arrived. I spent the first part of the week intubated in the ICU.
In the haze between sedation and full consciousness I was so blessed to know that some of my dearest people were there with me praying over me, reading scripture over me, and just holding space for me on some very scary and unsteady ground. Unable to talk, all it took was me scratchily scrawling out a name or two on a piece of paper, and my people came running to be by my side. I am so incredibly thankful.
My medical team worked hard with me, but it was obvious my body was tired. Each time they turned off the ventilator to try to get me off of it, my chest remained silent, and they had to turn it back on. What changed this was overhearing my husband ask what the next step would be, and seeing my doctor motion to his neck that I would get a tracheostomy. I scraped up what fight I had left in me and scribbled out “try breathing again.”
For the next hour I breathed, but it was like trying to come up for air when the pool cover has already been put back on. I fought and fought, but eventually I heard the doctor order the medications be drawn up for rapid sequence intubation; they were getting ready to intubate me again. Somehow in that moment of defeat I sucked in a thin stream of air, and then another. Little by little I was able to take each next breath on my own until I was finally resting back against my pillow, only a bipap mask supporting me.
I made it very clear to my doctors that my daughter was graduating high school on Thursday, and I would be leaving the hospital by then with or without their blessing! Thankfully my team was very supportive and worked hard to get me out of there in time. That seemed an impossible feat at the beginning of the week, so my heart was overjoyed to be able to celebrate with my girl.
Sola Gratia!
I was there to listen to her beautiful singing voice peal across the arena in perfect harmony, and my heart sang. I was there to hear her name announced as she walked forward for her diploma, and my pride thumped swollen in my chest. I was there to giggle at the cute, triumphant face she made as she walked by the cameras with her prize in hand, and my spirit soared. The joy of the Lord is my strength, and he truly has shepherded me through some of the deepest valleys and the highest mountaintops this week.
I also delighted in the fact that my little sister and a few of her littles drove out for the graduation and I was able to spend time loving on them.
Seester LoveThankful for my girls helping me get fancied up! 💕
This will be the way forward for now, and we are grateful for the help to better manage things that have gotten frightening and difficult, like my weakness and breathing. I am grateful for this roll in seasons that brings these beautiful blue skies and warm breezes; ready to soak them all up with my people! And I am thankful for each of you who have faithfully walked us along this journey in so many ways. ♥️
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.
Choosing Hope 