I have hesitated and avoided writing anything on this blog for over seven months now. I read through my last blog post from back in April and am finding it hard to even remember who that person was. Isn’t it incredible how life can change you in the matter of a few choices you make, or even more so, when decisions are made for you, and you only have the option of reacting and adjusting? Only one, very short year ago, Jason and I were running around Universal Studios with our boys riding every single amusement they had to offer, marveling at the lack of lines.
We were gifted those tickets by a complete stranger, and employee of Universal, that saw an impulsive post I had written about where to find the best prices on admission. Incredible opportunity dropped in our laps!
In my last blog, I wrote: “Our journey so far has proven that we have no idea the possibilities that are yet to come. And what we think we have planned for, may not be where our road takes us.”
If I only knew how foretelling that statement was! Truthfully, I wasn’t going to write another blog because I didn’t want to share the update that I had. My family was in the belly of the beast that is my mom’s kidney failure. Our hope and efforts were in getting her a kidney transplant, by any means. Decision day, May 10th, came and went.
I drove my parents to Oregon Health & Sciences University medical center where the panel of doctors and experts were going to interview Mom about her transplant potential. But none of that really happened. We arrived early to the appointment, was put into a small room where we were first met by a lovely gentleman that said he would oversee her medications and treatment after transplant. The way he spoke with Mom, sounded very promising, and maybe we were actually there as a sort of pre-operative appointment. You know, dotting the I’s and crossing our T’s before finding the donor match and setting surgery. Then a less loveable nurse came in. She talked to us for about eight minutes, and it was clear by her questions, tone, and irritable nature, that we were wasting her time. There would be no “board of doctors”, no “panel discussion”. We left that small room with a resounding no, Mom isn’t eligible. The nurse informed us that it wasn’t exactly up to her to make that decision, but she’s going to take her opinion to the doctor, and the doctor makes the decision based on her opinion. We would get the final decision in the mail. I walked out of that medical center FURIOUS and crushed. After informing my three sisters, we all agreed that we would fly Mom to Canada, or Mexico, or wherever we could to get the answers we wanted. That OHSU nurse had no idea who my mom was before kidney failure and dialysis. She didn’t know my mom was vibrant, able-bodied, and a force to be reckoned with. That nurse only saw my mom after dialysis had stolen her light, her energy, and her physical aptitude. That nurse was wrong, and as a family, we knew better.
The decision letter came in the mail a couple weeks later, but Mom hid it from us girls. She didn’t want to disappoint her daughters, and frankly, she was reeling from the disappointment as well. Writing about it now, my eyes are blurry with tears. Our family had really pushed Mom into getting a transplant. Encouraged her that she was worth it, that she was a good candidate, and that the people in her world knew she was meant for more and deserved a shot at normalcy again with a new kidney. We set her up to get knocked down. It was a hard blow for all of us, but mostly for Mom. Not only was Mom not currently eligible for a transplant, but she never would be. She has too many dueling medical conditions, and the doctors aren’t confident that the surgery would be a success.
With the finality of taking a transplant off the table, Jason and I knew we couldn’t leave our families, and would continue to stay close while we figured out what we can do next for my Mom and what our future was shaping to be. Buying and cruising the Caribbean on a sailing catamaran was still in the vision, but not as soon as originally planned. The month of June brought around a lot of wild events. We celebrated my mom’s birthday with a family dinner at home. Jason also planned an awesome 80’s-themed 40th birthday for me later in the month.
Then, things got really crazy – Jason and I, with my sister Kristi and her husband Jason, bought a house. I suppose categorizing that place as a “house” is a massive stretch of the imagination, but let’s call it a house out of convenience. Buying that house was our dip of the toe into the waters of Sheriff Auctions. We knew we’d be in town for a couple months at least, and I really needed something to do besides wring my anxious hands over my mom. We saw the auction notice as an opportunity to do a nice house flip, earn some money, use our hands, and fill our time. Looking back, that water we dipped into was pure molten lava, and we should have kept our dear toes far away from it. That house is a hot mess.
Now I’m a diehard fan for a jaw-dropping “Before-and-After” story. But turns out, sometimes you can’t clean, weed, or dumpster-fill your way to a pageant-winning after shot. Sometimes, it just needs a bulldozer. Funny side story to this house… As Jason and I were pulling into the Sheriff’s parking lot for the auction sale, I mentioned to Jason that I was reading how some states have “redemption” rights where there’s a 90-day period after purchase at the auction where the heirs, or any entitled party to the property, can swoop in and buy the property for the auction price. The hilarious portion of the story is when we go into the back room after we “win” the auction, and the staff informs us of the ONE HUNDRED EIGHTY-day redemption clause! Joke’s on us. So, we have that property through December anyway. That was an expensive mistake on our part. On the bright side, between the four of us involved in that humdinger of a decision, we have come up with some stellar options to do with the creek-side, one-acre property.
The first week of July was one of the most memorable weeks of my life when Mom took a giant leap backwards in her health.
Mom’s local dialysis team told us we were to take her to the emergency room to get admitted, or we wouldn’t have her for much longer. Mom was so weak, confused, and enraged by all the fuss. We had already spent several hours in that E.R. waiting room the day before, and when we asked about Mom being seen, we were met by a nurse that clearly should not be in her chosen career field. She told us we didn’t “pick a good night to come to the E.R.” and, ultimately, Mom probably wouldn’t even get a bed. I could have punched that girl, but we opted to take Mom home to her own bed instead. But now Mom’s medical team is saying she is to go back to that wretched waiting room and stay there until she’s admitted. I arrived that morning to pick up Mom and Dad ready for a fight. I knew how desperately Mom just wanted to be in her home. She’s tired of the doctors, the probing, the let-downs, and the bad news that kept flooding over her. Surprisingly, Mom was ready to go. We waited over EIGHT HOURS in that waiting room before they took Mom back. I was so elated to see that Nurse Dreadful wasn’t on shift and in her place was a nurse that fought for Mom to be seen. He repeatedly checked in with us, keeping us updated on where Mom was at on the triage list. If not for the bone-headed boyfriend that was shot in the arm by his psychotic ex-girlfriend, Mom would have been seen a lot sooner. Still, the wait was excruciating for Mom. She had to remain in the wheelchair. Too weak to stand, but unable to lay down and relieve her aching body.
It was almost 11pm before Mom was in her hospital room, and Dad and I were told to come back in the morning. Finally, we would get some answers for Mom. The next four days, Mom underwent every, single test the hospital had to give. You name it, they did it. The poor girl couldn’t catch her breath before they were coming in and getting her again. Mom just wanted to go home. Her family wanted her better. No answers came with most of the testing. For how Mom presented in her frailty, I was amazed that every test came back normal. How was that possible? At least until they came back with the brain scans. Mom has White Matter (or Lesion) Disease, they said. Among her other issues with her kidney, blood pressure, and diabetes, she's also diagnosed with dementia. This is what is causing the memory lapses, out-of-character anger, and hallucinations. It can also be the root to her drastic weight and muscle loss. It’s also terminal. The rug was yanked out from Dad and I as the doctor proceeded to explain to us what that means going forward, and how we needed to start thinking about how much further care we wanted to provide Mom. Suddenly, Mom was treated like she was knocking on death’s door. ‘Comfort Care’ and ‘End of Life’ terms were thrown around by the doctors like candy at parades. What on earth just happened? So that was it? No more tests, no more meds, no more dialysis? Just… let her die? Dad and I sat around Mom and cried. We did all the paperwork, signed the DNR forms, walked Mom through all the tough decisions. I was sitting next to Mom, my hand on her hers, re-phrasing each question the doctor asked so she could hear and understand them. I recall repeating to her, “If your disease gets bad enough that you can’t feed yourself, do you want a feeding tube instead?” She turned and told me, “No. You have to let me go.” And that was it. That was the final blow. Mom didn’t want to fight. She wanted to be home and back in her own chair. She didn’t want to see the inside of a hospital again, and she never wanted to be in a hospital bed in her own home either. “If it gets to the point where I can not get up or do things on my own, then I don’t want to be here.”
With all the tests done, and bad news delivered, we brought Mom home the next day.
I spent two of the four nights with Mom, sleeping next to her in the hospital, and I cherish those nights. Our conversations and stories about her childhood and mine, how her and Dad grew together in their marriage, and how our life decisions have led us to where we are. Despite the horrible that came with that hospital stay, I look back at that time with my mom as treasured memories I can recall with a calm heart. I LOVED that one-on-one time with her.
After bringing Mom home mid-July, the summer and Fall months brought about a new normal. We all circled up our wagons and drew close to Mom and Dad. We figured out Power of Attorney, finances, medications, groceries, etc. I spend every Tuesday at my parents’ house.
I get to spend the day hanging out with my mom – which usually turns into doing a project that Mom wants done that requires a little more muscle and a stable equilibrium; and Dad gets to spend the day outside of the house catching his breath and doing things he enjoys away from the stressors of being a care provider for Mom. Although it has taken months for us to get here, I feel like as soon as Mom was given permission to leave that hospital, there was a switch that flipped in her. Mom has raised the proverbial middle finger to the medical community and her diagnoses. Mom is THRIVING right now, and I am here for it. She is making her own food, she is moving without a cane or walker, she is gaining weight and muscle, her mind is clear, and best of all, she has her light back. She’s making plans, she talks about her health goals, and trips to take, she’s exercising her legs, she pays attention to the meds and all her test levels that dialysis messes with. I gush with pride for her. Years ago, I wrote a Facebook post about how my mom is a hero. I toted about how selfless she was as a mom and daycare provider, and she would do anything for her family – she would give, even when she didn’t have anything to give.
Now I see her as a hero for putting herself first. She has a contagious motivation about her that drives me to be better. I hope she knows how many peoples’ lives she has impacted throughout her life. I know she has saved mine.
Since we knew we were staying in the area for a while, Jason and I gave our three boys the option of going back into the school system. Barrett (5th grade) and Cord (3rd grade) said they wanted to go back. Jason and I agreed that being back in school with friends and community would be great for both of them. Ryan (10th grade) decided he rather enjoyed getting his schooling done within a couple hours, instead of the six hours at the high school, and opted to continue with home schooling. Though our rush to home base back in March was for my mom, we have found a lot of adventure and memories made by being home for the last eight months:
We spent a week at the Oregon Coast with Jason’s family;
We celebrated Bear’s, mine, Cord’s, and Ryan’s birthdays with those we love most;
Ryan passed his driver's permit test;
We went to music festivals and concerts;
We took the boys to an OSU Beavers football game;
We surprised the boys with a “Yes! Day” and spoiled them into exhaustion by saying yes to anything they could think of;
We took in the local carnival and rodeo week;
We celebrated Halloween in our old neighborhood;
And mostly, we were present for our families and friends. Coffee dates, church activities, lunches, parties, sleepovers, school functions – we’ve done it all.
Now that I’m mostly caught up, let’s recap on our latest endeavor….
Due to the first house purchase being a bit of a bust and sitting in limbo, Jason and I were on the search for another house we could get our idle hands on, and we bought house #2 mid-September!
House #2 is just down the road from our home we sold 16 months ago to sail away on the blue horizon. It’s another bizarre turn of life choices that we find ourselves in a seriously outdated, pet-stained, cigarette smoke-soaked, sagging floor in the laundry room home just two miles from, what we thought was, our dream forever home.
However, our attitude remains the same. We may not be racing around Universal Studios this year, but I can’t help but see the beauty that’s just beyond a few minutes, days, or months of love and hard work put in. Beyond the terminal illnesses, beyond the broken, beyond the setbacks and forks in the road, lay a wonderfully sculpted future that we look forward to seeing. Even with our motorhome being parked with a for sale sign in the window, we still plan for travel, adventure, and what waits for us just beyond our open-ended, unfinished pages.
So here’s to Mom’s hard-headed resilience, to the comforts of old stomping grounds, and to the unknown ahead that keeps our eyes open and heads shaking.
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