6 months ago my hospice doctor signed a paper that said if my disease continued at the current progression my life expectancy was 6 months or less. Welp, surprise! Here I am! Seriously though… I know that no man can put a number on my days and only God knows when that time will be. And it will be the perfect number of days, because He planned it that way.
Does it weigh heavily sometimes having that kind of thing spoken over you? Yes absolutely, but I have to choose to continually give my fears and anxieties over to my Heavenly Father, because I’m not meant to carry that kind of weight.
With the help of some insanely wonderful friends and even people I have not gotten to meet yet I have been able to try some more natural treatments for my body, and while I do not know for sure how they will work I know they are a gift from God and they do my body good. I know that I’m still here.
I am so thankful for more time. There are days when things seem scary and overwhelming, but we keep taking each next day and making it the best it can be, because it is truly a gift. The gift of time. The gift of more snuggles with my littles. The gift of more smiles, more memories, more treasured conversations with my people. It is not lost on me what an incredible blessing this is.
I remain in hospice care at home, and my team members are the most compassionate people you have ever met. I’m so blessed.
Some of my favorite people have moved mountains to span miles and spend time with me and check in on me and love me in all the ways. My home is a revolving door of my local tribe encouraging me, entertaining me, bringing me sweet love. After a long and hard period of extreme isolation and many prayers for community we have been surrounded in the most amazing ways.
Sometimes I look into my eyes and I see that it’s changing me and I get afraid. I wonder what’s going on in there and what my future days will look like. Then I remember I have not been given a spirit of fear, but a spirit of love and of power and a sound mind. That’s all I need.
People warn you that the newborn stage and the toddler stage are hard and exhausting, but no one tells you that the actual process of them growing into older kids and young adults will simultaneously make your heart explode with pride and rip it out with grief for the things of the younger years. What a crazy wild journey it is! This week three, THREE of my children will be teenagers. How did this happen?!
Though my heart sometimes aches with longing for the days of binkies and Eskimo kisses, there are also so many amazing things I am experiencing as I watch my older babes blossom into who they are going to be. I’ve decided to share a few of these important and often amusing things you can expect to experience, so you will be less surprised than I was.
ONE. They clean their sneakers incessantly with baby wipes. They often choose all-white shoes despite my urging that a different color would be better, and then they panic over dirt and scuffs and are found with little piles of dirt covered baby wipes as they fervently scrub and buff their shoes back to an acceptable appearance. So, shoes are meant to be worn, but never look lived in. Who knew?
TWO. They will start calling you “bruh.” At first I was wildly offended by this and tried frantically to disallow it, but I soon learned that it is actually rather insightful into the emotions they are feeling but refuse to ever talk about. If you get a “bruh” they are likely to be displeased or annoyed at something or someone and it is best to let them vent it out. You are welcome.
THREE. They sleep. A LOT. Like all day if you let them. I remember being a teen and feeling exhausted all the time but I was not allowed to sleep in and I never understood it. I decided then that I would remember what that felt like and I would let my teenagers sleep when they wanted to sleep. And I do. Within reason.
FOUR. They will still sleep with their favorite childhood stuffed animal and then hide it when their friends come over which is just the cutest most heart-melting thing you could see from these strange people who most of the time seem tough and hard and perfectly disinterested in anything sentimental. I have more than one teen still sleeping with their childhood stuffie, and it twists my heart every time I see it. I got permission from one of them to post this picture.
FIVE. Seventh grade is literally the worst. Whoever invented it should be punished. At the end of sixth grade they should all be granted a hibernation that lasts until about the second quarter of eighth grade, and then they can reemerge. For the sake of them. And us. And world peace.
SIX. They eat an astonishing amount of food and your grocery bill will become the first priority on your budget as you strive to provide a constant flow of generous meals, hearty snacks, and midnight munching. Teach them to like eggs and Ramen because those things will become staples when you are scraping for pennies for the ninth trip to the grocery each month. Don’t be fooled into thinking this is just the teenage boys. Oh no, the girls are equally capable of becoming human garbage disposals, and you’ll just stare at them and wonder where on their bony little bodies they are hiding it.
SEVEN. It is a wonderful thing when your children start driving on their own and can A) go do things for you, and B) take themselves to their events. From picking up dinner to taking another sibling to their practice to picking up a gallon of milk for the fourth time that week, you will savor the ability to simply stay in your slippers and actually read a book or something because you don’t have to live behind the wheel of your minivan anymore. Life-changing.
EIGHT. Teenagers are the most interesting species on the planet. Their physical bodies transform frequently, they start having their own soapboxes and quests, they sometimes give you a fake hug and other times want to snuggle like a four year old, and they walk around making strange noises and generally being confusing. However, they will become like a really cool friend and they will still say “I love you” every time before they hang up the phone with you, and you will be proud of seeing them do all the adult things only maybe on a smaller scale because let’s not get too ahead of ourselves. Baby steps. They were just newborns like, yesterday!
**My teens previewed this post and ok’d it (and giggled reading it) before I posted**
If you are usually on our Christmas list and thought we forgot you this year, there’s a very good explanation, and no, we didn’t cross you off our friend list. We decided as a family this year that instead of giving gifts to each other we wanted to find a way to give to someone who wouldn’t otherwise get anything. We are abundantly blessed all year long, and wanted to find a way to bless someone else. We planned to adopt a family, providing their gifts and groceries for Christmas, but there was continued lack of communication and I began to worry it was not going to happen. We racked our minds for other ideas; taking stars off of a giving tree, handing out comfort packages to those experiencing homelessness… and we prayed that God would use us right where we were needed most. As I began to worry we weren’t going to find a place to serve, an email showed up in my inbox. It was a foster care agency I had been in touch with, and they had an urgent situation. They had already completed their gift drive for children in foster care; they had collected wishlists and sponsoring families had shopped for each child. Well now just a few days before Christmas an emergency placement was happening, and there would be 12 and 14 year old sisters brand new to the foster care system without Christmas gifts. She asked if we would be willing to sponsor them. I couldn’t think of a more perfect “yes!”
In a rare occurrence, we made sure everyone was off work and off school and we squished all 6 of us into the car and set off to go shopping. Mark’s parents also donated to the cause, and since we had a 12 year old and 15 year old girl of our own, we were well equipped to choose just what these sweet girls wanted and needed. We were given a short wishlist by the foster care agency, so we made sure to make a few of those wishes come true.
It brought so much joy to see my children excited about helping someone else, and instead of being sad there aren’t gifts under our tree, the absence has been a positive reminder that we got to do something wonderful for someone else. So if you didn’t get a Christmas gift from us this year, please smile in knowing you were a part of something so much bigger.
My heart feels crushed every time I remember that a hard goodbye is just around the corner. I am grieving having to say goodbye to an incredible woman. An Angel among us. I have been so blessed in life to have been given friends who leave such important footprints on my heart.
I met Sue in a roundabout kind of way; we were both following the same blog, and the blog author had asked for prayers for Susan’s granddaughter, Delainey, who was having complications from Trisomy 18. In the end, we lost our daughter Ellianna, and she lost her granddaughter Delainy just a few months apart. Thus began an unexpected friendship; raw, real, beautiful, and based on the bare bones truth of treating people gently when they need to be loved.
Sue and I carried the heaviness of grieving our little ones side by side even though we were states apart. She was always accepting of whatever stage I was in, and gave me space to feel and express all that I needed to. Do y’all know how rare that is? It is an indescribable gift to have a person like that! Even in her own grieving, Sue found ways to speak to my hurts and mend my broken pieces with her gentle words and kind heart.
Susan is a relentless encourager. If I look at my “friendship” on Facebook I will be scrolling through page after page of scripture, encouraging quotes, and meaningful articles she would send on to me. And that woman must have liked and commented on every one of my pictures for like five years. She was always looking for ways to build me up.
I only got to be with Sue in person one time, and that makes me a little sad. She was traveling near my town and made it a point to stop and meet up with us so we could finally meet in the flesh and have a good meal together. It is a treasured memory, an experience that really made me realize how gentle and kind of a person she is. She is calm and sure of herself, content in the moment, unlike how I sometimes come roaring in in a hot frazzled mess.
How blessed I am to have shared in such an uplifting and encouraging friendship at a time we both so deeply needed it. My heart aches that this world will not have Sue anymore, but my soul rejoices wildly at the thought of her scooping up her Delainey once again, and snuggling her close for all of eternity. How happy she will be. Once again she will be paving the way for me through a new unknown.
I seem to frequently get told that I’m strong or brave or amazing, or any one of those pat-you-on-the-back kind of words. As flattering as that is, let me change your camera angle for a moment and show you what’s really going down. Behind, beside, blazing ahead of, or basically whatever direction I need to find him in is the most wonderful man that I get to call mine and do life with every single day.
It is true, I do a lot of fighting against my waves in life, but if you look a little closer you’ll see my Mark doing whatever legwork is necessary to keep us right-side-up. He is one of the most giving guys out there, frequently overlooking his own needs or wants in order to keep me comfortable and moving forward.
I can see it in my head; a boxing match. There is arm waving and whistle blowing and the boxer wearily plops themselves down in the chair in the corner, and that’s where you see him. He flies in fast as an eagle, but stealthy as a shadow and he surveys the damage and starts making it better before the rest of us have really even taken it all in. He’s icing swollen eyes, dabbing up bleeding lips, and all together just letting the sweat and the blood and the brutal grossness of it all drip all over him without a second thought because he is so focused on the goal of getting his fighter back out there to take in all the glory. Yep, that’s who my man is. Every single day.
He doesn’t complain. He doesn’t ask to share the winning Golden belt, he simply does whatever he can to make the circumstances better so his fighter can get back to doing what she loves, and be good at doing it. I’m not sure the official name that person is called, but for me, I call him Buddy. Whenever he hears me call that name he comes rushing to my side to help me battle through whatever next fight needs to be fought. He likes to stay in the shadows, and insists that anyone would do what he does, but I know better, I have the best of the best.
Will you say a prayer for Mark today please? He is such a hard worker. He gets up as daylight is about to begin cracking the sky. He gets ready to start his work day, but never before first checking on me; helping me get my morning medicine, and showering me with kisses. He always makes sure I am cared for and comfortable before he starts his own work. He puts in a solid day of work, but it is not just that. He is working through his doctorate, and he’s making himself available for all the 10 gazillion times myself or one of the kids will come knocking on his door to ask for his help that day.
He does work-work all day long, but he often splits into the time of his day to take me or one of the kids to appointments. He makes sure the little ones get lunch, and feeds all of us again at the supper hour. He helps with homework, does housework, and whatever else needs to be done, like picking up groceries, or taking our pets to the vet. He does it ALL, and he still meets each one of us with love and grace. And usually a silly dance; lets not kid ourselves.
My husband needs more strength right now more than ever before. He needs strength to keep up with work and school, and all the other things that still need to happen around our home because I am laid up in bed. I’m so thankful he has scuba diving as a hobby, because it allows him to find peace, refreshment. (and quiet) to keep fueling himself for keeping our family running. Please help me support and love on him right now as he carries such tremendous weight on his shoulders.
All things must come to an end. Except suffering maybe. The verdict is still out on that one. I do not know anymore why I am so candidly sharing my heart-thoughts with a world unknown to me. When I first starting blogging, when our daughter died, I found it therapeutic. Getting my thoughts out and also believing they might help someone else who was going through trials somehow eased a bit of my grief. Then my life carried on and this horrible disease struck, and I kept putting it all out there. The good, the bad, and a lot of the ugly. What I’ve come to realize is I don’t know what the purpose for that is anymore. I am blaring my deep hurts, vicious disappointments, and strongest hopes to an audience who can neither see nor hear me, and the void of comforting souls doing life beside me remains vacant.
Perhaps one day my children will read my words and gain an understanding of the storyline that played in my head, hidden beneath the brave face I tried to put on for them, and they will learn the truth-depth that is woven in the coming and going of our every day.
Thank you each for being here to follow along and cheer me forward. For now it is time for me to step away, to let my silence be the echo of the words I have clung to for so long; Choose Hope.
I was scrolling through my photos and feeling pretty grateful. It was a day of strength. A shunt adjustment this week seems to have given me some reprieve.
I got to witness the joy of my little guy filling up a backyard pool.
I got to melt into a puddle of all the warm amazing feelings watching my boys head off together with their fishing poles.
I was able to stand long enough to make trendy sweet coffee drinks with my girl.
It has been good. /Good/
But then I swiped to the next picture and it hit me like an unsuspecting slap that stung like fire.
It was there because I had been going through some old photos a few days ago and I’d saved it to send to a friend. I had been building this incredible list of small mountains I’d climbed, and reveling in the joy and fulfillment I felt, and this memory of my past swiped my feet out from under me and sent me crashing through a wall of heartache that I was not ready for.
So much emotion tied up in that one simple picture. The immense joy that being on the fire department filled my soul with. The overlooked gift of being hold a brush to paint my nails. The ability to use my thumbs for a thumbs up. In a splinter’s worth of time, I went from great heights to a mind crushing low. I felt sad to have ruined my gratefulness, but as I talked myself through it, I came to realize that it was absolutely ok to feel what I was feeling. A hard memory doesn’t take away the joy of important moments with my people. Those two emotions can live together. I was reminded of a card I read this week…
“You can be angry and at peace. Curse God and whisper His name for help. You can be shaking and sobbing and strong. You can be grieving and grateful. Jagged and graceful. You can paint your nails and curl your hair. You can also not give a crap about any of that right now. You can hide quietly in your closet crying and dance to loud music in the kitchen while squealing in laughter. It can all hurt even when it feels good. You can feel so darn lonely in your head, and you can feel the vibration of the world holding you up in love and prayer. There is no book for dummies on this awful thing. I imagine your feelings change daily, sometimes by the minute. There is no wrong or right way to be. Just keep being.” -author unknown.
I cannot think of a more perfect way to say it. Just keep being.
Please leave me a comment, it lets me know you’re listening!
Recovering from brain surgery is no joke. It’s been a lot tougher than I expected. I’ve not much made it out of bed over the past few weeks that I’ve been home. It’s easy for things to get dark when that’s the case, and add on this pandemic and the quarantine we are under, it doesn’t take long for things to feel like they’re closing in around me.
Today I managed to get up and go outside for a few minutes. My goal was simply to refill the birdseed at my window. The birds that come sit and peck at my window are such a beautiful source of joy to me. As I made my way through the backyard though, I noticed something. All around me, little colorful buds were standing proud on the trees and poking up from the leftover scraps of last year’s leaves. It took me by surprise. I guess in my sickness and discouragement, I forgot that Spring was coming. But just like the fluff starting to grow on the bald half of my head, new sprouts could be seen almost everywhere I looked!
I know a lot of people are feeling sad and scared and overwhelmed right now, so maybe that’s what we all need a reminder of. After Winter, Spring always comes. No matter how cold or how dark, those beautiful buds find their way back to meet days filled with sunshine. We may not know how long this hard time will last, but don’t forget the new beauty that is coming. It will be here. The hard Winter always forges the toughest stems and most beautiful blooms. Don’t forget to look for them.
Please leave me a comment, it lets me know you’re listening!