It has been that kind of a weekmonth YEAR. Life continues to happen at a pace that has me barely keeping my head above water. I often feel like it’s a dance around the land mines. All day. Every day. Mostly I make it.
Tuesday I went to a high end NYC orthopedic hospital to continue the journey to diagnose the foot injury from hell. I taught my 27 fully remote 4th graders until 11:30 and took the afternoon off. I traveled in for my diagnostic nerve block. If this nerve block eliminated my foot pain for 6 hours, we would be closer to eliminating it forever. At least in theory. (Spoiler alert- NOPE, that wasn’t it.)
I arrived home from the procedure at 3:20 with instructions to log my pain hourly until 8:30. I was also to walk several miles during that window.
Except, April, our sweet as anything oldest girl hadn’t been feeling too good in the morning. Food had been tough for a few days, but normally I could cajole it into her. Not so much that morning. So, I wasn’t messing around and I opened a can of chicken salad from Costco. The smell would have had her jumping in place. Except I had to bring it to her. She took a bite or two and turned away.
I called the vet, pleased that our favorite was on call. The description of “distended abdomen” prompted “bring her in now.” He knew April well as he had set us up for her surgery just this past March. I paced the parking lot in between his calls.
“I’m worried. Her belly is hard. I am afraid it’s a tumor, but I want to be sure.”
“Yes, you can take x-rays.”
More steps on a foot that was anything BUT numb.
“It’s not good news. I see a large mass, possibly connected to her spleen that seems to have burst. Her abdomen is full of fluid. There is not much we can do except keep her comfortable.”
My head. My heart. My April.
Two hours later she passed peacefully in my arms.
I collected her leash and collar, and whatever resolve I could muster.
That was fast. They all hurt. This one had hurt coupled right alongside shock.
April, my girl. She was by my side during my foot injury and in my 4th grade “classroom” every day this year. April, who saved Lucky who unraveled after the sudden loss of her companion Allie a few years back. April who took to Jax immediately. April who joined us through a bizarre adoption on a January Tuesday in 2015, had quickly left on a May Tuesday in 2021.
I was home barely long enough to put her leash down before I had my sneakers on to torture myself through the approved number of steps to complete the failing foot experiment. No time to pause. Game face.
I asked why it feels like we are living life on the Indy 500. No one had a straight answer. Clearly we are traveling above all posted speed limits with poor safety restraints.
Cowden’s has been largely minding it’s business for now, and after some sloppy surveillance, with covid seeming to be in retreat, we are getting caught up with regular screening.
And, with every appointment comes the question of how they will monitor Meghan while she is in college. We are trying to make real plans to stay on top of things, because Cowdens doesn’t take vacations. I believe it takes naps. But, not extended vacations. And college. Yep. Sneaking right up on us.
The psoriasis in my ears isn’t linked to Cowden’s. I don’t think. But it does add some more doctors to a very full plan. Plus, it’s itchy. And gross. BLAH!
Senior year? Nah. Not really.
Meghan will be confirmed in the ELCA Church in Plainview where my brother-in-law is the minister this coming Sunday. That is a happy day, a long time coming.
They promise me graduation will be some time late June. I’ll take it as it comes.
For now, the usually low maintenance medical one in our house is looking at oral surgery for a raging infection in his mouth. This following 5 days inpatient with Covid in March and he’s becoming a contender for appointments of his own.
“I’ve tried to take things one day at a time, but lately several days have attacked me at once!” was a sign that hung in my parents house for many meaningful years.
This year has been unlike any other with its own set of unique challenges. Yet, I don’t remember the last time it was “calm.” You probably don’t either.
Today I finished school on time. I am set up for Monday. I haven’t had many weekends this year. Usually during a school year this feeling of being settled in comes around Halloween. We’ve got 5 weeks left.
Today I went to the cemetery to clean up my Dad’s grave. It needed a little TLC. I swung by my grandparents at another cemetery and thought about how much I miss them all. Time keeps moving.
Joy. Sadness. Laughter. Pain. Chaos. WIns and Losses.
And that my friends, is a little tiny, carefully edited piece of how the title came to be what it was.
One of those multiple meaning words that seems to get tossed around a lot this time of year.
Reflections for me are necessary as a part of who I am.
As the new year approaches, I find that I hear the same sentiment over and over. “2015 Will be a (great, better, good, fabulous…) year.” Often I hear people say, they are “due,” and it’s their “time,” or their “turn.”
And that’s not to say I don’t know countless people who have suffered gross misfortune. And it’s certainly not to say I don’t wish them all a break. It’s just I’m not sure what difference a minute makes, really.
I am reminded of the conversation I have with my youngest students several times a week. December to January is a matter of a minute. One to the next, and the calendar changes.
I guess it’s none of my business this notion that the new year will make things better or different. But, I just don’t really buy it.
I like the idea that the year starts over again. I have always liked that about teaching – the ability to start fresh every September. But to me that is a more authentic change than New Year’s Day. At least in school it IS a new year, new schedule, new students…
Maybe it’s the fact that the last few years feel all drawn together in my mind. And they haven’t been all bad. Just quick. Fast-paced. And maybe a little tiring.
Truth be told, though, there is no real indication that 2015 will be any different from 2014, or 2013, or one of the rockiest of them -2012. The change of month and year will not alter many of the things currently set in place. There is Cowden’s Syndrome to fight. There are relatives and friends struggling with health issues. There are things that just are.
But, what will remain the case in 2015, is currently the case right this moment. I will wake each morning, put my feet on the floor and find something good to focus on. I will shake off the pain. I will be a role model for my girl. I will eat the most nutritious food I can find, and share my passion with whomever will listen.
I will question doctors. I will question everything and get the best care I can for my girl. I will adore my husband, and love him the way he loves me. I will follow the lead of my daughter and strive actively to help as many people as we can. I will work on staying calm, and not sweating the small stuff. Because that is how I get through every day. All year. And some days when we are very tired, we will just be. And that’s ok too.
Although, I’m not beyond reflecting on the last 12 months, in the year we often dubbed “The year that everything broke…”
I spent January sorting through my father’s apartment after his death in December 2013. It was a whirlwind that ended December 4, 2013, when he passed from a battle with pancreatic cancer, and the carry over was evident in my dining room for the early part of 2014. I made phone calls, wrote letters, and did what I could to address inquiries and settle affairs. And still a year later there are pictures to be sorted and water marked… soon.
In February Meghan’s thyroid finally gave out. And was taken out. In the middle of a huge snowstorm that led us into the Ronald McDonald House in Manhattan the night before. And we spent a few weeks with the largest part of the recovery, which included a medication reaction and another overnight hospital stay. Almost a year later her Synthroid dose fluctuates every 6 weeks and doesn’t seem close to being regulated.
There was the identity theft that targeted me in March and got right into my bank account. There were headaches, and police reports to follow, but they had nothing on the fraudulent tax return we learned had been filed in April. Hours and hours, and months of waiting. We have it all fixed. Almost.
The spring was a constant juggle of pain. An indicator that the thyroid removal had altered the balance in the body as far as I am concerned. That theory was further confirmed when Meghan spent a week in the hospital in May with severe gastritis. It was the culmination of a spring where things just seemed to be getting worse. We met a gem of a gastroenterologist who was able to settle a few things, but after an endoscopy we left with news of severe esophageal damage. Her medication was blamed. The same one that had been helping us manage her constant pain, and had been diffusing the activity of the AVM in the knee. We also left with a diet exponentially more restrictive than the one she was already on. Ironic maybe that the fryer we had, had broken the night before we went to the hospital. We certainly didn’t need THAT anymore.
And then we said goodbye to the Saturn. The 1996 Saturn that was the “extra” car that was so handy to have, was towed away in the spring after a few failed attempts to fix what surely was the start of a failing transmission. We are a one car family for now.
Even in the “happiest place on earth” Meghan’s stomach “broke” again. Scaring the heart out of us, causing a visit from a Disney doctor for which I am still trying to coordinate payment from the trip insurance company. Fortunately it didn’t derail our trip. But, it reminded us that everywhere we need to have our guard up. Everywhere.
And our Allie Girl in July had 5 teeth pulled in quite the procedure of a surgery. It didn’t take her long to start eating again, but my nerves, and my visa were permanently affected.
There was the pool that kept having a “little” leak. Until it was consistent enough that we left a hose in the pool. Until I finally bit the bullet and called for a leak assessment. And just like that the pool was being emptied for its liner to be replaced. At least it will be ready for us in the summer.
And the bay window. The one that developed some dry rot after a call to the window company 2 years ago led to a ton of red tape. By the time they came to see if the damage was covered it was too late. And just like that we were replacing the bay window we had put in 14 years ago. And once you cut a hole into the wall… It was like a bad version of the book “If You Give a Moose a Muffin…” Almost the whole house got painted as Meghan moved her room upstairs, and we cleaned and sorted and purged…
The very end of August my Grandma, Dad’s mom, had a stroke. And we hoped and hoped that it would get better. We visited, and chatted, and spent as much time with her as we could. And she went from the hospital to rehab, to the nursing home, and declined every step of the way. She remained pleasant and agreeable until she passed away October 22nd – less than a year after we lost my Dad.
Early in September Meghan fell and there was a stress fracture in her foot just in time to start 6th grade and a brand new school.
And in the fall the washing machine gave up, and a new one found its way into the basement.
In November Uncle Jerry, my Dad Ken’s brother passed away. Just shy of 60, he was taken way too soon by cruel cancer. GGPa, his Dad, was taken from us in June of 2012. Too close. Too much. Too sad. Just wrong.
And as I traveled home from the funeral in Vermont I went to pick Meghan up at swim practice. And as she walked out of the locker room she collapsed. The pain in her knee was too much. Emergency surgery the next day at Lenox Hill revealed a pea size hole in the artery of her right leg at the AVM. And what we saw coming 6 months prior when she stopped the medication because of the gastritis had happened. The AVM was back in a foul mood. 50ccs of blood drained from her knee joint. After 5 procedures in there, at only 11 the knee will never be what it should be.
We spent Thanksgiving at home, just the 5 of us. Felix, Meghan and I, and Allie and Lucky. We decorated for Christmas, while Felix made a fantastic dinner. And it was ok to be housebound. Together.
There had been too many funerals this year. Too much loss. In my immediate and extended families, and the families of friends. We needed some time to enjoy our innermost circle of 5.
By that time memories of my Dad’s passing a year earlier were taunting me. Maybe I looked the other way at the earliest signs that Allie didn’t feel right. Maybe it wouldn’t have mattered. But, we got home from celebrating cousin Kim’s wedding, and it was evident that my Mom was even worried about Allie. A walk the next morning with Felix where she gave up mid way prompted a vet visit that Sunday. After x-rays of her belly that were inconclusive, and some medication for pancreatitis that we were pretty sure she didn’t have, we took her home. We diligently gave her medication and prepared chicken and rice as directed, but by Tuesday she wasn’t eating. And THAT was NOT like her. So I took her back on Wednesday hoping for a new medicine and grossly unprepared for the vet to tell me it was time for her to be put down. So in between tears I gathered my family and waited. I held Allie for hours while I waited for them to arrive so we could all say goodbye together. December 10th we lost a good friend, and a key player in our family of “5.”
I ended the year breaking the vacuum the day before Christmas Eve.
And as I sat to reflect I remembered that still in the chaos that sometimes ensued, never were we to be defined by Cowden’s Syndrome. We are to be defined by other things. The ability to; persevere, love, lose, cry, laugh, sing, smile, appreciate, endure.
Because you see Cowden’s Syndrome is with us every day. Of every year. For the rest of our lives. But it can not BE our lives.
However, it has taught us some good lessons. Life changes quickly. If you aren’t paying attention you might miss it. Don’t be complacent. Ever. And be as prepared as you can while never making firm plans. Cause life is not designed for “firm” plans, but better suited for goals.
And don’t wait to make those goals. Or to carry them out. You don’t need a new calendar, or a special occasion. Just do it.
Treat each day as a gift. Be the best YOU that YOU can be, all the time.
Be honest. Don’t be afraid to love deeply. The pain of loss is horrendous, but without that ability to love deeply there would be a good deal of much needed compassion missing from a world that is already struggling.
The best thing about reflections, is they encourage you to continue onward…
Although there is some debate on that, I stand with Billy Graham.
We lost our Allie Girl today. And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.
Allie found us. Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart. It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky. Meghan and I walked through the aisles enjoying some of the puppies around for adoption. Ready to leave, I asked, “Where’s Daddy?” And there he was, knee to knee – eye to eye- with Allie. “This is the dog I was meant to have,” he told me very matter-of factly.
I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)
“What if they don’t get along?” (Solved in 2 seconds flat when they met outside Petsmart. They were fast friends.)
“We are having company for Meghan’s birthday next week.” (They offered to delay the adoption 2 weeks.)
“Our yard may not be big enough.” (We passed the home visit with flying colors.)
“We don’t have the money right now _” (I was grasping. The fee was so reasonable. And they offered to postdate the check a month.)
But I won.
Allie joined us on August 12, 2007. The guesstimate for her age was three. I suspect that was conservative. She stepped into our home with none of the puppy nonsense new dogs cause. She was trained, didn’t bite the furniture, or pee on the rug. She needed a little tiny training to settle down with her food. Easily done. And she really was the perfect dog.
She was Felix’s dog from the get go. No matter where he went she followed. She slept on his feet at the TV at night. She waited for him on the weekends if he slept in. She sat at his feet when he whistled. She greeted him at the door. She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.
Her “tough” side – much like Felix’s, was put into check with the right love.
I took a bit longer to catch on. It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her. I had to understand her, her abandonment, and her need to trust again. Once I “got it,” we did just fine.
Mostly I fell in love with Allie because she loved my Meghan. I can remember nights, and there were so many sleep deprived nights, that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her. She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.
And how could I not love the dog that loved my two favorites?
Meghan, being without siblings, took to the dogs as her “furry sisters.” She always used the number 5 to represent her family.
And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.
Being sick is the pits. Having Cowden’s Syndrome is horrendous. Having a dog or two to love you through it – definitely a bright spot.
There were so many nights. More than can be named. So many nights of tears and frustration and sadness and anger. Soothed by the love of a dog.
We love Lucky. Very much. But we always said Allie made Lucky a dog. Allie turned her in the right direction. Made her less neurotic and more normal. They were sisters. A good pair.
Cowden’s Syndrome just got a little harder to swallow.
Life just got lonelier.
Allie got sick fast. Maybe a few weeks of not being quite right. And a few days of really being laid up.
We took her to the vet Sunday. It looked bad. I took her back today. It was over. Her belly was full of fluid. Even without eating – 2 pounds heavier than Sunday. They didn’t offer to do blood. Or treat.
“This is it,” the vet said.
And Meghan and Felix came, and we sat as a family. And we said goodbye together. We hugged, and held, and loved and cried. Then we left.
Our world, and our lives forever changed. Richer for our experiences, more painful for our losses. For only those who love deeply, can hurt.
Thank you Allie.
Hopefully Grandpa Tom finds you. You two always got along. Cause I firmly believe I’ll see you both again.
Before the school year closed my principal told my daughter to do whatever she had the urge to this summer. Knowing she was a good kid, she understood his meaning. He told her to play hard, and not worry about getting hurt, or hurting.
When I shot him a look, he laughed and ignored me. Speaking right to Meghan, (referring to an event at school last June where she climbed a rock wall and ultimately needed hand surgery) he asked her if she would climb the rock wall again. She said, “Definitely!”
He smiled at her, knowing he had left his mark in the just over a year she spent at our school. Her confidence was up, and she knew the satisfaction of completing a task, and sometimes even winning – far outweighed the physical consequences that simply seem an inevitable consequence of being her.
Turns out that very conversation was replaying in her mind as she was first to cross the finish line in the “Fun Run” this morning, held annually in memory of my cousin Meghan, her namesake. The pleasure in her eyes outweighed all other things as she held it together long enough to get in the front door before she asked for ice.
Reminding me today as educators we shape lives in ways deeper than the classroom. I am grateful…
Meghan needed this morning. As a matter of fact we needed it – so badly that I think even the rain knew. And maybe my Dad, my cousin’s “Uncle Tom,” was able to push those clouds out-of-the-way for a while. His angel wings are 7 months strong today. I think we got a special favor.
It’s hard to believe we’ve only been out of school for a week. My head is spinning.
Monday was the rheumatologist, full of confusion, still perplexed by pain without swelling that plagues so much of her body. We spent hours, and arrived home minus a copay and with little to show for the trip.
Tuesday morning as we prepped for the GI, fortunately a local appointment, I got a call from the vet. “I know Allie is scheduled to have her teeth cleaned tomorrow, but we have a cancellation. Can you bring her today?” All about getting things done, I got the dog in the car and dropped her off for a dental cleaning.
Of course, I left in tears because as tough as I want to say I am about the dogs… I am who I am.
So when they called me a bit later to tell me she would need 5 extractions, my heart almost stopped. But, there was little choice so I consented.
We headed to the GI and had a pleasant visit there. It’s always easy when things are going well, and generally the stomach is so much better since that stint in the hospital in May that we are clearly headed in the right direction. We left with an appointment in 6 weeks, and told we could slowly, and carefully start reintroducing some of the foods stripped from her already restricted diet after the diagnosis of severe gastritis.
I picked the dog up a bit later that night. And her pain medication, and her antibiotics, and as I was leaving even full of relief to see her, it was hard to tell what was whimpering louder, Allie, or my Visa.
Wednesday another local visit, this time to the orthodontist. And instead of getting the news that the braces are ready to come off, she left with more rubberbands. The initial projection of having them removed in February seemingly a distant memory, and more conversation about her teeth and how “unpredictable” they are. Why not? So to make sure that they don’t move too far in the wrong direction – we get to go back in 2 weeks, then in 4. We’ve got time I guess.
Thursday, after feeling confident that the dog was on the mend, we left for the endocrinologist in NYC. A somewhat productive conversation at least led to a mutual agreement that the synthetic medicine may not be working for her. Her fatigue, I was told, “may not” be associated with her insanely elevated blood levels. We’ll get the labs on Monday. Two more 6 weeks cycles for the levels to regulate. Then we try something new. 12 weeks is a long time to look at continuing to feel less than your best, but at least we left with a more open-minded doctor than when we started.
“This is getting old.”
I’ve heard that phrase a few times from my normally happy, easy-going kid. At 10 years and 11 months she knows chronic pain, needles, surgery and waiting better than anyone should. When she asks about my childhood, and I tell her that I also went to quite a few doctors, (although not as many as she does,) she tells me I am “lucky I didn’t know I had Cowden’s Syndrome.”
And as I am left to ponder what it must be like knowing more about genetics and your broken PTEN gene than you might ever want to, I think about how hard it must be. The thoughts that go through her head, the level of her vocabulary, her insight. So much to absorb, so much maintenance. She gets that she’s lucky in some ways, but overtaxed in others… it is so easy to forget that she’s not even 11.
That is why mornings like this one have to happen. That is why she has to sometimes taste a little bit of victory, when she feels like the challenges might swallow her up. That’s why she has to run as if she has no pain. That’s when she gets to be a kid.
This was the worst of it – this week, for doctors. This was my worst scheduling job by far. On the 14th she has one and I have one. Then on the 15th I have 4. (Genius!) And after that things lighten up considerably.
This week I settled some paperwork that has been lingering. I fought over medication with the pharmacy. I began the process of organizing a few very chaotic things.
Today we got to see some family. Meghan got to hug three great grandparents, two of which are in their mid 90s! We got to chat and to eat and take a break.
Tonight we will sit with a sweatshirt and watch the sky for fireworks.
Tonight I will thank the angel who moved the clouds away this morning.
She walked away today. She broke the rules. She updated the plan. On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses. The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.
That didn’t last long… You only get a moment or two to pull it together. Then there was some really rotten cafeteria food, and WAITING.
They took her in at 3. Three and a half hours after she was scheduled. She was tired, and hungry. And more grown up than I am at 3 PM when I haven’t eaten.
What a whirlwind! Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed. Stupid Cowden’s Syndrome. Makes people quick to pull out whatever seems to be misbehaving. And (SIGH) they are usually right.
So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while. I thought there was no way it could stand in the way. The surgery was scheduled. She was ready. The throat clearing has reached epic levels.
Faith that it was going to be fine. Initially faith that the storm would pass. Faith that we would arrive on time to an early surgery Thursday morning.
Then, as happens so often I was reminded that FAITH, is not about me. It’s not about my terms, or my time, or my way. FAITH is knowing, trusting, believing. that God will provide what we need. Whether it fits my plan or not.
So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.
So much talk about HOPE this month. Rare Disease Day, and “HOPE – It’s in our genes.” Hope became necessary. The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in. (HEY, I never claimed to be perfect!)
Back and forth to the surgical team, to the social worker, the secretaries. Pleading. Help us. Hotel rooms that were available running several hundred dollars. Offers from loving people to pay the bill. But in the end money wouldn’t have stopped us. We would have paid whatever we needed. Because we had to be here. Right here. Right now.
So finally around 2 O’Clock on Weds. the call came. “We can put you up at the Ronald McDonald House for the night.” The fee – incredibly reasonable. The location- perfect. The reality – it was time to pack us up and be out of the house by 8.
Packing to take Meghan away is an adventure. It’s not the electronics, or the “stuff” but rather the food. Not even a major hospital can safely prepare Gluten, Dairy, Soy free food. So there has to be a cooler. Dad made fried chicken and plantains. I picked up a pound of a Boar’s Head staple. Cookies, granola, ginger ale, and other necessities. Showers for all. And Grandpa picked us up at 8.
We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time. I have to admit I was worried. Really worried about what I would find through the doors. But what I found was… love.
I had heard of “The Ronald McDonald House- The house that love built.” But I never gave it any thought.
I have a new charity on my favorite list.
We were welcomed – almost embraced by love and kindness. There was a nonjudgmental compassion the radiated out of every staff member. We were given keys to our rooms, and a tour with the rules of the “house.” We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room. And, after she was given a backpack – with a special monkey, and a monkey blanket.
And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket. Her grateful smile. My heart – full of love in this house.
Our room was on the 11th floor. Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic. And there was the most beautiful view.
And as we each found our way last night into our own level of sleep, there was LOVE. Everywhere in the room.
We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.
By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.
A beautiful chaplain met us this morning, and clearly spoke Meghan’s language. She compared God to a loyal dog… always there – forever understanding of our needs.
The doctors took extra time with someone else’s baby this morning. I am glad they have that level of compassion. I am glad they take their time.
Now they need to take their time with mine.
The last status update came 15 minutes ago. They only began around 3:40. Prep took a while. She is stable, but its slow going. What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules? Why make it easy.
Thankfully – she has some very special guardian angels on the case today. And the prayers of countless others.
In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”