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.
Soon after my latest release from the hospital, I had a dental cleaning scheduled. I wrestled a bit over whether or not to go; it is one of those things that seems a bit irrelevant when you’ve just been placed in hospice care and told your time is limited. In the end though, since I had scheduled the appointment 6 months beforehand, it seemed easier just to sit through getting my teeth cleaned rather than trying to have the awkward conversation about why I was canceling. So I went.
The dental tech asked me all the usual questions, and asked if there had been any changes or updates to my health situation. I guess I didn’t get out of the awkward conversation after all. I told her I had been admitted to home hospice a few days prior. She paused her typing to look up at me and compassionately replied, “aww, and you still came to this today.” I wanted to say that it was important to me to have a clean, shiny smile for my funeral, but not everyone uses dark humor to cope with hard things like I do, so I just kind of shrugged and smiled. 🙃
When my teeth were cleaned and polished, and had been examined by my dentist, I was awkwardly climbing out of the deep chair and gathering my things when my dentist cleared his throat and seemed to stammer over what he wanted to say. He motioned toward his dental technician and said, “she told me about what’s going on. With the changes in your health, and, you know, hospice.” The gentle, quiet man I’d known only for a year reached for my hand and cupped it in both of his own. A small torrent of tears spilled over his lashes and made a thin trail down the aging creases of his middle eastern skin. He seemed to be grasping at what to say next, and then all at once it tumbled out with a fresh splash of tears. Still tightly grasping my hands, he gave them a little shake and said “Be brave, ok? Just be brave.”
Completely caught off guard by his emotion I found myself struggling for what to say in reply. In the deepest crevices of my feelings it hurt that he was he was hurting because of me, and some part of me ached to alleviate that. I slid my cool, smaller hand over his warm grasp, and hoping to convey a million things that did not seem the time and the place to say, I smiled and replied, “I will. I am not afraid.” Not even knowing him well enough for a hug, I proceeded to turn my attention to the bag of small dental samples being extended to me, chose a new bright pink toothbrush from the line up, and then made my way to the front desk where the eager young receptionist beamed, “would you like to go ahead and schedule your next 6 month cleaning?” My mouth twisted into a half grin, not sure if she was being sarcastic or not, but when I realized she was not I enthusiastically replied yes, yes I would like to make my 6 month appointment because one, I was not about to explain my sad situation once again, and two, I am a white-knuckled holder of hope and I have every intention of showing up to that appointment 6 months from now.
In the privacy of my back seat I exhaled the emotion of it all, and lamented over how complicated and painful and just plan sucky this whole situation is. It is sad that I am sad and my family and friends are sad, and I feel like I spend a lot of time trying to mitigate that, but when people who hardly know me roll tears over my story, it just seems downright unfair. On this day of seeing the ripple effect of pain in this world, the greatest light I could cling to was to repeat to myself over and over the words I know to be trustworthy and true, “He is making all things new.”
I hurt when my story causes others to hurt, but I believe God has chosen each and every person that has intersected with my life. Our stories are woven together with so many threads entwined. I hope that to whatever extent we have interacted it will be used to bring hearts nearer to Christ, whether that’s through a lifelong friendship or a brief hand held in a dentist office.
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. ♥️
I was using an unexpected burst of energy to shuffle things around in my garage, attempting to organize the means of the DIY adventures that call to me on my stronger days. I must have been deep in thought, because the abrupt swinging open of the thick wooden door to the house startled me. A tear-stained face appeared, begging companionship. “Can I please talk to you?” “Of course,” I replied, and took a seat on the striped padding of our wooden bench. I patted the seat beside me, and there was an eruption of sobs.
“I just really, really don’t want you to be sick. I don’t like it, and I would rather die so that you can live a happy life.”
I was caught off guard by the heaviness of the situation, and as the lament continued I silently prayed for the right words to comfort this tortured soul. How do you answer the questions for which there are no answers? I was reminded of my notebook full of gratitude; all the beautiful and miraculous that is found woven through the mundane ache of every day.
When the slew of bemoaning faded into hiccuping sobs, I spoke. “Oh sweetheart, I /am/ living a happy life. I love getting to be here and be a wife and a mom and a friend, and my sickness will never take that away for me.”
“But why doesn’t God heal you. He can! Why doesn’t he want that?”
Admittedly it is a question I have also asked from time to time, but I gave the answer that has been whispered to me on repeat as I have studied similar stories of suffering in the scriptures. What if my suffering is the way into a greater love for God and his people? I have found that the process of walking with him through these deep valleys is teaching me how to better love and care for others. Maybe if I was not sick I would not know how to do that.
Not that I have readily accepted the hardships in my life. Not by a long shot. I have had my own sob sessions, wrestling long and hard with God, desperately searching scripture and asking really hard questions. I have waded through grief deeper than I thought I could survive.
The truths I have come to know, and that I shared on that dusty bench in my garage is that whatever trial I am asked to walk through, God will give me the strength to take each step through it. And if a terminal illness is what presses me nearer to his heart and grows my own to love others in a way that I could not have imagined on my own, then that is what is good for me, as well as for those my life intersects with.
Who knows, God may still heal me, but only if healing pushes me further into him. Only if healing accomplishes eternally what terminal illness cannot. These days my prayers are less for the removal of my illness and more for a greater number of days to love God and love people. I continue to press forward and fight toward that end; especially for my husband and my little people.
In the cold quiet of our garage that night, I explained that my present suffering is only going to increase, not ending until my death. Every day I am pressed harder into the story of the gospel, which allows me to fully trust the God who has numbered my days (Job 14:5), and to embrace the future of hope he has planned for me (Jeremiah 29:11). As I thank him for each new day, I search with intention for ways to leave a legacy for my children that will urge them to press into their Father God in their pain; to trust him with their hurt, and believe in him for their future.
My youngest little turned to me a few nights ago and said, “Mom, I want to tell you something, but please promise not to be sad or upset.”
I assured him that I could handle whatever it was that he wanted to share, so he went on.
“When I was at practice today I saw a mom and her little boy on the playground. They were looking for something and then the mom climbed up and went down the slide and something in me triggered. I wanted to fall down on the ground and bang my head and cry.”
He slid his hand into mine, searching my face expectantly for my reaction. I think I did a good job of not betraying the chasm that cracked right through the beating of my heart. I smiled. I thanked him for sharing that with me. I told him I am sorry that his mom can not do a lot of the things other moms can do. We agreed it was hard and sad and unfair. And then I crooked-pinky-promised him that I was going to go down the slide.
Most kids get excited about a play date with friends, a new toy, the weight of a lemonade stand’s worth of quarters in their pocket… at the words that his mom would go down the slide with him, my boy’s face lit up like Christmas morning covered in a blanket of snow. “Actually?!” He beamed. “Absolutely. There are a lot of things I cannot do, but I can figure out how to slide with you.”
So transpired the day that we drove to the park, maneuvered the obstacle course to the top of the slide (because why just have simple stairs?), and made time stand still to the sound of my shoes squeak-clunking down the blue plastic slide that gave my son a moment of the most joyous normal that he could have imagined. He watched me slide, rode on my lap down the slide, and raced me down the double slide.
Even though there will always be things we miss out on together, I pray that every time he sees a slide instead of that painful trigger he will be filled with the memory of the day I said yes to reaching for more, challenging the limits, and grabbing hold of the joy that makes my hard story worth it.
I have not had much strength to write as of late. I do often in my mind; if only my brain came with dictation so I could get it written down. 😊
I am here still warrioring on with each of you who bravely get up each morning and embrace the good and the hard of your own stories.
One small treasure that I have been reminded of in this string of hard-fought days is that thankfulness if the key to peace. When my mind wants to run with with worry, I am practicing replacing those anxieties with thanking my Savior for the miraculous as well as the mundane, and He has been faithful to pour into me a peace too thick, too rich with the serenity of it all that it can only come from Him.
Is the roar of worry drowning out your thoughts? Try it. When anxiety creeps in, start listing the graces of your every day, and you too will find peace.
After my current palliative care provider announced that they are dropping me as a patient I embarked on a search to find another group that would manage all the things that they had been for me. After many late night hours searching for providers, several interviews with prospects, countless phone calls, an amazing patient advocate, and a whole lot of rejection, I am left without the care that has carried me through these past few years. Palliative care is changing; they only want cancer patients because the reimbursement is better. They were managing my pain, my mental health, my nausea, and my breathing, and I do not know what or who is going to fill those holes.
Next I got a letter from my physical therapy company stating that they are shutting down at the end of this month. For three years I have had the most compassionate, talented physical therapist coming to the house twice a week to help calm my spastic muscles and loosen contractures through massage, stretching, and myofascial release. It has provided so much pain relief.
Two weeks ago I called to reorder my infusion supplies and had to leave a message. Nobody called me back, so I called them again this week. The voice at the other end of the phone said, “well it looks like it’s been too long since your last order, so we discharged you; you’ll have to ask your doctor for new orders.” The same doctor who will no longer see me.
I do not understand why everything that has been essential to my health is falling apart. We uprooted ourselves from Colorado to come here for better healthcare for me. Now all at once that is crumbling, and I am not sure what the next step is. I do not know if this is God saying He has something else for me, or it is time to stop fighting.
I am weary. I am frustrated, and I am confused. I am exhausted from trying to advocate for myself for all the things. I wrote down a list of each of my doctors, most of them specialists who only manage one particular issue like respiratory or GI. There were fifteen of them. I know for certain I do not have the strength to run around to fifteen different doctors every month to get my needs met.
This feels like standing in the middle of a tightrope where neither end can be seen. Unsure of whether to go backward or inch forward, not knowing what waits at the other side. Fortunately I know where to look; up. No matter how shaky my situation seems, or how far the drop is, I can count on my Heavenly Father to reach down and steady me with His tender assurance. He is the one who sees the bigger picture.
I greatly appreciate your prayers in these days ahead as we try to figure out the next steps. I know God will provide as He sees fit, and I am trying to focus on the quality of my moments with each of the people dear to my heart, and not stress about the rest. Easier said than done.
There is a saying we have probably all heard at one time or another that goes something like this: “Be kind, for everyone you meet is fighting a battle you know nothing about.” Compassion being one of the gifts I have been graced with, this quote always struck a cord with me and helped focus my thoughts on some important perspective through my early years. No situation has brought a more resounding agreement with these words however, than the one that hit closest to home.
His friends saw him become disinterested and standoffish; he started declining play dates in favor of spending time by himself at home instead of being the outdoorsy social butterfly that everyone was accustomed to knowing. They did not know that he was battling a suffocating depression.
His teammates saw him gain a lot of weight and struggle with his endurance and speed, and they teased him. They did not know that the medication that is keeping intrusive suicidal thoughts at bay has caused him to put on the weight.
He got in trouble for picking on one of his peers, and he was labeled as a bully and a “ring leader.” They did not know that he was relentlessly being bullied day in and day out and was keeping it to himself.
His classmates noticed him disappear and started sharing rumors that he had been expelled. They did not know that he was experiencing such toxic levels of stress that something was going to give, and so we stepped in to offer him the solace of homeschool; where he is now thriving.
His teachers saw him not give his full attention and best effort, and assumed he was unfocused and not willing to work hard. They did not know that nearly every minute of the day he was being tormented by the fear that today would be the day his mom’s terminal illness would take her away for good.
He got scoffed at for being too tired to go on a bike ride or run around outside. They didn’t know that for his entire life he has been sleeping on the floor by his mom’s bed to make sure she is ok, and it doesn’t provide the most restful sleep.
They saw his gruff, sarcastic exterior and chose not to pursue friendship; they did not know that those are just the masks he wears to protect one of the most tender, intuitive, and compassionate hearts they’ve ever known.
How many times do we jump to conclusions instead of loving big and giving people the chance to show us the beauty that lies behind the hard battles that we each fight? I am guilty of it too. Let’s not miss another opportunity to know someone incredible because we are too quickly assuming we know their situation. Take a chance; offer acceptance. You might be missing something big.
**This was posted with permission from my little man— one of the strongest warriors I know.
Things have been a bit heavy lately, so what better time than to have some fun and do a favorites post?! I enjoy sharing a few of my favorite things every once in awhile; you never know when you might find YOUR next favorite!!!
String of Pearls
I first got a glimpse of one of these gorgeous plants online several years ago, and immediately tried to track it down and find out where I could get one. I had no success… until… my daughter and I recently stopped in to check out a new local houseplant store near us, and much to my delight, there she was! I am reading up on all the things about this little gem, and getting a spot set up so I can welcome one of these beauties home!
I have not had much of an appetite lately, but these Nerds gummy clusters never disappoint. They have a fruity, tangy flavor with the most delightful crunchy/chewy/gummy texture. I have only tried rainbow flavor; they have very berry as well, which sounds just as yummy!
Ok, I love a good creative activity to work on from bed, but am I the only one absolutely overwhelmed by the intensity of the detail in coloring books meant for adults? I mean, it’s supposed to be relaxing, but I get so worked up by feeling like it’s going to be two Christmases by the time I finish a page, that I get overwhelmed and abandon ship. Paint by Sticker though? That’s my jam! These designs are so cute and fun, and it’s totally feasible to accomplish an entire picture -or two- in one sitting. They end up looking so colorful and precise, and do not take much time, which is totally satisfying to having a creative streak with limited energy!
A quick glance around my house will reveal to the careful eye my love for all things Rae Dunn. I adore the simplicity of her designs, and her straight, alluring letter forms make me drool. I am increasingly pleased with the expansion of the kind of things she makes, and my mom totally nailed it when she found me the softest ever Rae Dunn blanket for Valentines Day. It is comfort and simplicity and beauty all in one, and immediately made the short list of things my little people are not allowed to disappear with from my room. 😊
This book by Karyn B. Purvis has been a game changer in my parenting. I wish I had found it 10 years sooner! As a young mom I didn’t know any better than demanding good behavior from my children— behavior that reflected well on me, but did not meet the soul needs of my littles. The idea of Trust Based Relational Intervention has turned my ideas and expectations of parenting upside down as it has taught me how to understand the heart of my kids’ behavior, not just the outward action of it. It has been empowering— for myself and for my children. Definitely one I will read and re-read.
How long Lord? Are things going to suck forever? How long will you be silent? How long will you hold back from making yourself known to me? How long must I do battle with my thoughts and be filled with heartbreak? How long does the enemy get to sneer at me?
Please tell me Lord! Remove my blindness or it will surely destroy me and the enemy will chalk up the win and rejoice in my downfall.
You have been faithful to me this far; my heart celebrates what you have done for me. I will continue to honor you, because you have been so kind to me.
Choosing Hope 