Category: family

Five Months Later

It’s been five months now since I lay in the epilepsy monitoring unit at Mayo, practicing my guitar, reading, watching movies, crocheting, doing just about everything but having seizures. But, from that visit and my prior one the doctors had enough information and we agreed to surgery and the installation of my VNS. While my seizures aren’t totally gone yet, it’s been a huge help both significantly cutting the number and intensity of incidents and just giving me better energy and raising my mood.

I am thankful for that for many reasons. A big one is that today also marks the five month anniversary of another huge change in my life. It was five months ago today that Dad made his journey to the spirit world.

I’ve not lived at home for any length of time since 1990. For the six years prior to Dad’s passing I lived in a different state. I only saw him around holidays and maybe for a few days in summer, but until his dementia took over we talked every week, usually Sundays, on the phone. Over the past year with his dementia taking hold phone conversations weren’t an option any more. I saw him last Christmas. He still knew me then, but by Easter when I called, because COVID didn’t allow for a visit, he no longer understood the staff when they tried to explain to him how to use the phone. I would never hear him speak to me again, at least not in this world.

It is the strangest thing, neither sad nor happy, but simply beautiful I suppose. I have seen more of Dad in the past 5 months than I had in years. He visits almost every night in my dreams. I don’t remember what he’s said when I wake, but he’s always happy, always his smiling self, laughing and joking, and just enjoying being where is and still watching out for his baby girl. Each day it seems I have a moment where it hits me again that he’s really gone. I can’t call him. I really won’t see him. He won’t be there when I go visit family. It hits hard and knocks the wind out of me for a moment, but my dreams bring comfort. While he isn’t here, he isn’t gone.

Over time, I suspect, both the daytime hits to my heart and the nighttime dreams will fade and eventually go away. But, I really do believe that Dad will always be there. That he will always be watching out for his baby girl. I feel so lucky.

Here I am five months later in a new job that I like, living in a new place close enough to family and friends that even with COVID I’ve been able to get together with people for hiking and dog park visits. My seizures are getting a lot better. And, having just looked at the goals I wrote before moving, I can see I’m doing well is most all of the area that I want to. I am thankful.

Mixed Feelings

What strange times. I continue to find myself flying about in this bizarre whirlwind of transition where I don’t quite know what to feel or how.

I spoke with a financial counselor this afternoon. I’ve worked most of my adult life in small nonprofits and childcare, so low paying jobs without a lot benefits beyond feeling that I’ve done some good in the world. That means I’m like most Americans haven’t built up a big nest egg and have a few bills to deal with, nothing major. I decided to talk with the counselor though after becoming a beneficiary of a small sum of money. I wanted to use it the best way possible. She was really helpful and we were able to figure out a good plan to address my debt and build my savings. I left the conversation feeling really good. Yet, it feels strange to feel really good about those kinds of conversations.

Mixed feelings came with my VNS implant too. It’s an amazing thing to be there in the doctor’s office getting this little device turned on, to feel that little tickle and feel my voice change, to know that it might really be the ticket to regaining my life and stopping my seizures. Yet, when it was done I couldn’t call my Dad to tell him how it went. All I could do was rely on the belief that he already knew, that he was there in the room with me, taking care of his little girl.

He keeps taking care of his little girl, helping me with my finances, making sure I’m safe and doing all that he can to help me be healthy again. It’s making me so happy, so thankful and at the same time I just want to see him smile, to give him a hug, to tell him I love him one more time. I guess that’s how it always is and that’s how it will be. I am so thankful though and amazed at that power, that power of love that keeps taking care of his baby Amy even after his body is gone.

Seeing Doughnuts

It’s funny how those little moments surprise you.

I just stopped at the grocery store. I’ve been letting a little sugar sneak its way back into my diet in recent weeks since Mayo doctors assured me that as long as I keep my diet in balance it shouldn’t be a problem to eat. Anyway, I decided to pick up a couple of creme rolls. So, I took a quick walk down the block to Willie’s. I wandered into the bakery department and there they were– doughnuts, the conveyer of memories.

I had no interest in eating doughnuts, but they bring back memories. My dad was a Krispy Creme junkie for years. Oh those things were awful! But he always had a box at his apartment and was passing them out to whoever visited. He was so kind and generous. I just found myself in that moment seeing the doughnuts and thinking– “Dad, he’s gone.”

It’s such a strange thing, such a strange time when I can just be walking through the grocery store and just suddenly realize–“Oh my god, my dad is dead.” It still seems unreal. I still want to buy him a box of those horrible doughnuts. Life is strange. Dying is stranger.

What Can I Do?

It’s been nearly two weeks now. In typical times, I’d be back in Wisconsin probably getting ready to make my trip back to Minnesota. Family would be all together. We’d have laughed and cried and laughed again. We’d have all come together with prayers and stories. We’d have gathered together in Dacada around the spot where Mom lies and laid Dad’s ashes down beside her and maybe gone over across the street to have Uncle Nicky make us all a Old Fashioned to commemorate the day.

These aren’t typical times. Instead of coming home from Wisconsin and time with family, I just got home yesterday from Mayo clinic and surgery. The last two weeks have mostly been a blur. Coming home from epilepsy monitoring, Dad’s death, going back to Mayo for surgery, spending some time at Ann and Christopher’s house.

Today is the day that my tears start to flow again. Tears of thankfulness for the dear friends who’ve held me together and been watching out for me in these recent days. I really do feel so incredibly lucky to have been gifted with people like that in my life, those friends and family who are smart enough to see when I need them and to step right in, not waiting for me to figure it out. I tend to be rather slow in figuring out such things for myself.

Tears today too as I spend my day just resting and relaxing. The pause is giving me the chance to just randomly have these moments where my system seems to say “Dad is dead.” It’s coming to that point where it’s real and none of the age old ceremony that we relied on is there, only the questions of what is the right way to honor the passing of our loved ones now?

It’s different than when I was a little girl and Mom died. First, I was a little girl. Secondly, I was surrounded by family and friends and immersed in the ceremonies. It was too much for a little girl. The pain was far too real and too constant. This is different. With Dad I know it will be okay. I know he’s found his peace and that the sadness is my own. I know that I will always miss him. That’s not going to change, but I’ll laugh at the stories and seeing his grandchildren smile in the way he used too will touch my heart and give me faith. Still, this is that sneaky sadness and it just hits me with no forewarning, tells me that he’ll never give me one of his Dad kisses again, that I’ll never get to hug him one more time. All I know in that moment is that I want that one more hug, that one more Dad kiss, and it’s all gone.

I guess hugs and kisses are something that are handed down. My Dad hugged and kissed kids and grandkids like his aunt Sr. Christine used to. Maybe the only thing to do is keep handing them down. Keep the hugs and kisses going. Keep telling the stories. Honor the spirit. Guess I’m just going to have to be the old auntie with hugs and kisses. That’s what I can do.

You know it doesn’t really matter what else we do. Nothing really is bigger. Dad used to make point of giving me a hug and kiss every time I came to visit. We always made a point to tell each other that we loved each other. As a young adult, I found it kind of goofy. As I aged and Dad got old, I came to appreciate it and recognized how much it meant to him. Now, I think I’ve come to realize the gift he gave me in that little action. That little act told me that I was somebody special and now I get to always carry that with me.

Wow. If there’s someone in your life that you value, please tell them again and again. Please give them the gift that my dad gave me and let them have that treasure of feeling value and self-worth. It is an incredible gift.

A New Life

I’ve done it. Surgery was this morning. I got to the hospital at 5:45 and went into the operating room about 8am. I guess surgery started by 9 and I was done about 11am.

The anesthesia was the worst part. Thank goodness for good friends. Ann got us a hotel so I didn’t have to try to make the ride back to their house. Instead, I just had a mile ride to the Kahler Suites and an afternoon to sleep and get my stomach back under control.

I can’t turn my neck. It will be a few weeks to heal. I’m checking to see if Buddy can go to doggie camp for the rest of the week. After that I’ll need a dog walker for at least a week. After that we should be back on track.

I am really feeling proud and relieved. I did it. I am starting a whole new part of my life. Mom and Dad would be so proud. There it is. My VNS is implanted, close to my heart– right where Mom and Dad are. Just a couple weeks and we’ll turn it on. Let’s hope this thing works!

Another Mayo Holiday

The Mayo Clinic is becoming my new holiday spa. It’s where I spent New Year’s Eve and while I probably won’t really be in the hospital on the 4th of July I’ll be in Rochester between appointments.

I’m heading to the clinic today on what feels like an adventure to start a new life. I don’t know yet. Today just begins another round of tests. I’ll be doing a PET scan today. I think it’s my first one. If I understand correctly, they inject sugar into my brain for the imaging. I don’t quite remember why, but as a lifetime sugar junkie the thought of mainlining the stuff is intriguing.

I am standing on a precipice it seems. These tests could tell us that I am a candidate for surgery or maybe an implant, something to correct my seizures, maybe just to lower the frequency and intensity or maybe to render me seizure free or they could tell me there isn’t much to do at this point other than maybe try more medications and hope. I could fly or I could tumble and be left to just keep pushing my way through the brush far below.

It’s a weird time to be standing on this precipice and hoping for the best in new life. Next week, the day that I start my visit to the epilepsy monitoring unit, will be the thirty-sixth anniversary of my mom’s death. How weird to spend that day laying in a hospital bed all hooked up with wires. But, it made sense to me to take the opportunity, celebrate her life by reclaiming my own. I’m taking my crocheting with me so I might spend some of the day with her crochet hook working on a new project and remembering all those wonderful nights sitting on the couch cuddled up beside her reading or maybe working on my own little project as she worked.

Then there’s Dad. He doesn’t know that I’m going back to Mayo. As a matter of fact he doesn’t know much anymore. Dementia has taken him away. Because of COVID-19 no one has been able to visit him, though we’re starting to be able to make video calls. My sister Jean made the first call last week. His care staff say he’s doing well and is a really sweet man. They’ve got him caring for a baby doll and he’s still wanting to get to work on the farm. You know, there’s something in that, something beautiful. He started out his life working alongside his father on their farm. It was always his dream to follow in his father’s footsteps. He never had the dairy farm, but most of his life he farmed. As a little boy, he helped his dad. When he got a little older, after his father passed away, he hired out to work for local farmers. After he married he worked with his father-in-law and eventually on his own. Along the way, he helped my brother get started farming. He kept farming for years. Now, he’s still following that dream in his heart. That, to me, seems to be true love.

I’ll be getting some memory tests while I’m at Mayo. My seizures and my medications both can impact memory. It’s strange to watch my dad from afar and think about what’s happening in my own brain. I suppose maybe my best hope is that if I do travel the same path of dementia that Dad has that I’ll have a nice baby doll and I will have found my dream to pacify my days. Still, I hope never to go that route. A long time ago, I decided I wanted to live to be 106. I don’t why. It just seemed a nice age and like it would give me enough time to do all that I wanted and be ready for the next adventure. It still makes sense to me. I still want 106 with good health and then just to be done. If I can’t do that then I hope I at least have fun.

Well, it feels like time to actually get up and maybe start preparing for the adventures of today. Take good care all!