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 tried to have a guest post because this is difficult for me to explain, but I will do my best.
When I had brain surgery in March I suffered an injury that has left my memory severely impaired. We met with neuro specialists last week after extensive testing, and the results were grim. My short-term memory barely lets me see a word and then write it down.
This situation has caused the confident, sure-footed version of myself to curl up and withdraw from situations where I may need to draw on my memory. Friends, hobbies, activities that kept me going have only served as a reminder of how out of touch I am. Important things like birthdays and promotion dates and even that a friend has a hard thing coming up are all things that I grasp aimlessly for now; unable to remember long enough to follow up and follow through. It’s embarrassing and it’s crushing; taking the very essence of my talents and gifts. The only way I have known how to cope with this new limp is to pull back and retreat. I have hidden away, afraid that my “forgetfulness” will be perceived as uncaring and dismissive. Being the people person that I am, I just can’t bear the thought.
Supplements and mind exercises stretch from days into weeks as I try to find anything that will help support my memory coming back to me.
I hope that my people remember the me that could remember, and know that my heart is still there, longing to be that girl again.
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.
My sweet little love. How is it possible that today is already your 10th birthday? A whole decade! It seems just yesterday I was feeling the warm weight of you on my chest, your delicate fingers wrapped around mine.
We talk about you often around here. Reminiscing over sweet memories with you, and wondering over so many things. What your laugh would sound like. If your eyes would have stayed that piercing blue. If you would have my sense of humor or your daddy’s quiet strength.
It still hurts, missing you. There will always be an Ellianna-shaped hole in our lives. That hole has brought about so many amazing things though. I am thankful for that. We have formed deep and lasting relationships built around the scars of losing you. We have reached out and filed gaps and met needs and made magic happen all in the name of honoring you and the impact your mighty life had on us.
On this momentous birthday of yours I am eternally thankful that I was chosen to be your mama. I’m thankful for the scars that have pushed me closer to Christ and helped me stand in the shoes of the hurting. I’m thankful for the people we have gotten to love on because we’ve been there and we get to pay it forward. I’m thankful for all the ways that your life and death has opened our hands to trusting in God’s plan, and has opened so many doors for us to spread love and support in your honor.
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.
I am fighting for good days. I dislike the desperation in that sentence, but it is the most accurate. The pain that used to be a whispering reminder is now a roaring force that seems to sneer at my attempts to quiet it. It mocks me as I try to plan time with my beloved friends, and it smirks when I have to scrub my calendar to prop myself among my pillows instead. I did not expect for pain to be the thing that makes me feel so desperate.
I wish I was kind and gentle even in my hurting, but sadly it makes me irritable with the ones I love, and makes me say things I know aren’t true to my character. There are medications to help, and some of them work quite well, but change my personality and bring out a mean streak in me. In my mind it will never be worth easing the throbbing at the expense of my family’s feelings.
The medication that works the best to take the edge off of my pain makes me staggeringly sleepy. I’m so thankful to have something that works, but I find myself having to choose between being comfortable and asleep, or being awake and in agony. Sometimes I choose one, some days I choose the other. Neither one of them feel fair.
I am trying to find a balance; staying present enough to love on my people, and allowing myself respite from the agony that threatens to break me. Will you pray for me? That my moments with my tribe will be multiplied, and I will have the strength to ride out the hardest parts with grace and patience for the better days that are coming.
We recently had family pictures taken, and they turned out beautifully. I’m so thankful for the extra time taken to capture moments of me with each one of my little loves, as well as the man of my dreams. As beautiful as they are, when I look at them I swallow a hard knot wondering what the future holds. As I’m fighting for another Christmas I’m overwhelmed with thanks with each moment of time I’m given; we’re all given.
As I poured over our photos and soaked in the soft background light and the beaming smiles, something struck me. It looks like such a warm Fall day; our faces lit with sunshine, and I look so strong standing beside my people.
Well let me take you behind the scenes. It was FREEZING. I mean nose-running, eyeball-gelling, goosebump-shivering cold. This kind of cold is especially hard on my muscles, escalating my normal spasms into arms and legs that lock up and refuse to move.
This is how that day really looked: I was in my electric wheelchair bundled in a coat and covered in a thick blanket. We would roll to each new backdrop and I would be helped to pull off my blanket, yank stiff arms out of my coat, take my oxygen tubing off my face, shuffle to where I needed to stand, and then prop me up for the next shot. Then back to the chair, coat on, oxygen on, blanket on, roll to the next place. It felt so messy and chaotic, yet you’d never know that looking at our pictures.
That’s what struck me. It was such an important reminder about how appearances are deceiving, especially on social media. We can all be really good at hiding what is really going on. Unfortunately that’s usually our default; pretend everything is ok. Remember that many people are fighting hard battles even though you might not see them, so offer grace, extend kindness, and never assume you know the whole story.
Leave me a comment; it lets me know you’re listening!