Tag: Terminal Illness

Uncategorized

Echoes

Hannah

Attempting to take my mind off of how much work it was to breathe, I started reminiscing about things I used to be able to do when Mark first met me. I imagined when he looked at me-the strong, physically fit young girl he met on the skating rink- he probably did not imagine that in only my 30’s he would watch me become weak to the point of barely walking, and needing help with many daily activities. During our early dates to sporting events, camping trips, and hikes, he probably did not fathom that in less than two decades he would be helping me to walk up a step or two, and many of our “dates” would become spent at doctor’s appointments or yet another night in because I can’t leave my bed.

For a moment my heart fell, and I began to let sadness and regret seep in. In that same instant I had a picturesque vision of all of our lives in a snapshot, and I realized that none of us are quite doing the things we used to be. I remembered we all eventually will lose the ability to hike a mountain or run a 5k. We will all start to skate less laps around the rink, until eventually we have to give it up for things gentler on our aging bodies. This convinced me there is something for all of us to learn in our “quitting.”

When we quit lacing up our skates and trade them in for a walk around the block what will we take from that time we spent reveling in the scrape of our blades across the ice, the giggling when we fell and embarrassed ourselves, and the tight arm-in-arm grasping as we clung to each other to stable our stance? I decided I will take from it the gift of having experienced new things. The smile of knowing my husband learned I am adventurous and a jokester. The peace of knowing that we had some important talks on those camping trips and hikes, and we learned to trust each other and respect each other’s opinions.

Each of these moments may not repeat themselves for us; either because of aging or illness or just the world changing with time. What a joy it is to know that rather than grieving these things we can cherish each of the important things we saw and felt and learned. Those are the things worth clinging to.

Eventually for each one of us all that will be left is the echoes of the things we used to do. I want my echoes to shout of my smile, my compassion, the joy that I am able to find because I have surrendered my life to the God who made it. What will your echo be?

Uncategorized

Slipping

Hannah

Last night I was in bed not sleeping for various reasons and in my idle fidgeting I slapped a photo of my face-meltingly adorable son and puppy sleeping next to me up on social media. They truly are the cutest in all the land.

It did not take long before my phone made a little blip saying I had a message from one of my dear friends on the West Coast, undoubtedly seeing my post while going about normal evening activities because it is three hours earlier there. The time difference has often proven a welcome chasm between us during those long hours of insomnia.

For the better part of an hour my friend and I messaged back and forth, her asking about what’s new in my life and me divulging all the things. After a lull in our conversation she said that she was going to sign off and get some sleep. It came crushing down on me like a stack of cement bricks. I had not even asked her one thing about herself. How she was doing. What she was up to. If she was even ok. I was mortified and devastated. I felt so out of character, so disgustingly selfish, and then while I stammered my apologies I remembered why I had not asked. I had not asked because I forgot.

I did not forget because I was so anxious to blab about my hardly new life updates or because I was distracted multitasking. I forgot because my mind did not remember to remember. It is slipping.

Friends, when I do not call your children by their names that I’ve known for so long, it is because I am afraid I am going to say the wrong name. I was not so busy or distracted that I did not have the time to wish you a happy birthday or ask you how your cold was feeling or if you had gotten the call you were waiting for. You did not hear from me because I forgot. That laughter did sound forced as we reminisced over a funny memory; it really was nervous laughter because I was dashing through places in my mind trying to find that memory and I could not. And it’s terrifying.

Please know that my heart is still first and foremost for my God, my family, and my people. When I come across as rude or insensitive or dismissive, it is not for lack of not cherishing you as I always have— I simply cannot seem to string together all the pieces to remind myself of everything I am proud to be. Please remind me.

Tell me stories again and again for as long as it does not drive you insane, because when you take the time to remind me it allows me to relive that moment of joy with you once again for a short moment. The joy of learning your name. The joy of realizing all we have in common. The joy of knowing how deeply valued and seen and absolutely loved you are to me. Even if I cannot remember to say it, it is still there. Somewhere.

Blow up my phone. Grab me if you see me out and say hi. Remind me who you are and why I’m the luckiest to know you and then please keep being part of my tribe! Remind me of who I am and what I love and be relentless, because the forgotten space is a really lonely place to be.

Uncategorized

After Surgery

Hannah

I know many of you that aren’t on my social media have been waiting on updates, and I’m sorry it’s been awhile. I need to teach my hubs how to post for me!

My first surgery went relatively smoothly. They were able to remove my gallbladder, and after some initial trouble getting me breathing on my own again I came back around and was able to breathe on my own with my normal oxygen and vent support.

Unfortunately during surgery they found my gallbladder had been backed up enough that stones were forced out a duct into my liver. The hospital I was at was not equipped to deal with that, so they packed me up in a mobile MICU ambulance and sent me to the bigger hospital in town, where I was taken back to surgery to clear out the tract and put a stent in my liver. This was a risky procedure, but was also a lot shorter, and they were again able to get me off the ventilator and breathing on my own once again. I’m so grateful for each of you that were praying for that for me; I truly believe God listened and showed me his favor through your faith.

The following days brought some pancreatitis as a result of the procedure. I wouldn’t wish that pain on anyone! I was blessed with frequent visits from good friends, which kept my spirits up, but made me long for home. With the days to Christmas growing shorter I was pressing my doctors to let me free. There always comes a point I get so desperate for home that I’d rather be miserable at home than miserable in a hospital room by myself.

I made it home on Christmas Eve, a wonderful blessing to be with my people in the comfort of home. I have mostly been in bed working on pain control and breathing, and my wing man has diligently been making sure to keep my tube feedings running, as my appetite seems to have left me somewhere along the way.

At times I get discouraged that I can’t jump up and mop my floors or pack up the Christmas decorations, and my mind starts running ahead of me too fast and wondering if my days like that are behind me. My kind Savior draws me back to His words though and promises to sustain me and my family in whatever capacity I find myself.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
‭‭2 Corinthians‬ ‭12‬:‭9‬ ‭ESV‬‬

Uncategorized

Urgent Update

Hannah

Several weeks ago it became apparent that my gallbladder is the next thing that has fallen victim to my MSA. With it no longer communicating with my brain about what to do I started experiencing some really painful complications. I was sent to see a surgeon about taking my gallbladder out, unfortunately my pulmonologist was not on board with clearing me for surgery. His concern over the weak state of my lungs is that if I am put to sleep and given a breathing tube, it will be likely that they won’t be able to wean me off of the tube, and I’ll end up with a tracheostomy.

A trach has already been on the table for some now as we watch and wait, so a part of me has already come to terms with that, but I also feel like it’s not time yet, and I know God is bigger than any complication.

A few weeks down the road and I am now admitted to the hospital because the pain and other symptoms from my gallbladder became too much to bear. I have a large team of doctors talking and working together, and the general consensus is to move forward with surgery, likely today now that it is an urgent situation.

I am completely at peace with what the Lord has for my future, but would you pray with me that my lungs will stand strong and I will be able to tolerate surgery and wake without a breathing tube or trach? I believe God wants the best for me, and I know He delights in showing His power when we ask. Regardless of the outcome, I know my God is good and there is no shortage of his goodness and grace in my life. For as many days as He gives me, I will live my moments for Him.

Thank you for walking along side me and helping sustain me and my family through these twists and turns. Your love and support are priceless in our lives. ♥️

Uncategorized

Instead

Hannah

I am so sad.

With summer break upon us I’ve been feeling terrible for all the things I cannot do with my kids. I want to go hiking with them. Instead they get stuck at home all the time watching too many screens. I want to take them to the pool almost every day, and explore the national parks around us. Instead I’m puffing walking up the stairs to tell one of them goodnight. I want to have all their friends over for late night fires and s’mores on the deck. Instead I’m exhausted by dinner time and asleep hours before the rest of my crew. I want to plan an exciting vacation getaway and surprise them. Instead I’m having major surgery that will take all summer to recover from.

I want to scream. And a little teeny part of me wants to quit; wants to give my family the freedom to live unchained. This mess is not living up to my well planned out expectations, and I’d like a redo please.

My friends, I know so many of you live joyful and exuberant lives in spite of much pain. You live the story that you did not sign up for, and yet you receive that cup so graciously, with kindness and contentment that I long for. Please share your wisdom… what is it you do when you want to throw in the towel on your own race and trade for a different one?

Jesus, please help me live for /your/ expectations. Help me to be thankful for what I have instead of mourning what I do not. Help me to make the most out of my time awake, and not have guilt for the times I need rest. Help me to have meaningful time with my children, regardless of what we are doing. And Jesus? Help them understand. Let their hearts become soft instead of resentful. Let their disappointment develop deep character. Help all of us to trust you with our story and to use it to bring you glory.

Amen.

Uncategorized

Grasping Easy

Hannah

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.

Uncategorized

Fight On

Hannah

I have not slept much this week. Pain, my constant companion is especially rough right now- it’s searing edges too sharp to allow me to relax into slumber. In the lonely night hours that seem to drag on I have much time to ponder. I could count the ways I wish my life had turned out differently, or awaken to each gift of grace this pain has made me see.

This picture was after two nights of no sleep. I was ragged. Beneath the weariness though is such rich contentment. This day brought the joy of watching my little excel at his basketball game. Then I was able to pack a suitcase for my love as he prepares to leave town for work again. That allowed him the time to work on a big surprise that delighted our little people. The night was capped off by nibbling at delicious cuisine that I didn’t have to cook- my favorite! I was so thoroughly beat, but so full, and so thankful. The miracle in each of these small and sometimes mundane moments is not lost on me. I am fighting for each one, and will cherish each box I get to check, sleep or no sleep, because the joy of being present in these big and little snaps of time is truly the greatest treasure.

Uncategorized

The Feeling of Fading

Hannah

When I was given a terminal diagnosis I chose to fight for life. For time, for moments, for memories. Some days it is easy to do, and sometimes I am clawing and grasping at something that seems so pointless and out of reach.

Yesterday put me in a dark place. I had a doctor appointment about an issue that is fixable. Any healthy person would have walked in that office and been given hope for healing and a better quality of life. My third time in this office to plead for relief was met with the same disconcerted answers as before, even with the new information I brought. A doctor I have seen 3 times now, and he has not even laid a finger on me to understand what I’m going through because it is obvious he has already made up his mind that it is not worth it. I am not worth it. My condition is too advanced, there is not enough life to live to make it worth his time to help me. That tore me apart in ways I cannot describe.

I am weary. Every single day is so much fight, and sometimes it is hard to remember what I am fighting for. The memory loss from my brain surgery continues to torment me. It frustrates my family to the point of anger, and then leaves me feeling like I have done something wrong when really my mind is just tricking me into believing something different than everyone else. More and more I hold my tongue to avoid the embarrassment and the conflict of not remembering things. I nod my head and pretend to remember when I really have no idea, but it is the more peaceful path. That is not me. I do not hide.

My body is tired of the battle. My mind is tired of the battle. Some weeks that propels me to fight harder. This week it finds me burrowed under my blankets, hot tears burning scars down my cheeks. I do not know what the rest of my days look like. The only thing I know for certain is I have Jesus, and he is the one who has given me these days, so through my tears I pray he helps me to use them well. Feeling myself fading is frightening, and I don’t feel like I am courageous enough for the path ahead of me. I do know I am held though. Held on the easy days, and held on the days that seem impossible. Held in my determination and my hope, and held in my fear and my disappointment. He promises to carry me through the deep waters, so I pray he will carry me further than I can even imagine.