New Year – beatingcowdens

Reflections.

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.

The first "great grandchild" — The first “great-grandchild”

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.

This is about 50ccs of water - roughly the same amount of blood that filled her knee joint. — This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.

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…

We are still now and forever Beatingcowdens…

Every year, this same week, I sit down with my calendar, and one for the following year. I carefully transfer all the important dates I need to remember. I write the birthdays, anniversaries, and other important “days to remember.” There is probably some much more high tech efficient way to do this on my iPhone, but this is a job I am not looking to simplify, or give up. I enjoy the time spent reflecting on the year that passed, and wondering what the next year will bring.

During the course of the year, around all the birthday and anniversary reminders, the basic events of life fill in the blanks. I can look back on some weeks, and months – where there doesn’t seem to be an empty box, and wonder how we got through. There are the basics, PT, swimming, dance class, music class. There are some parties, and celebrations. Around them are peppered annual exams, like the cardiologist and the eye doctor. There are some “sick” visits with the pediatrician in there too.

But last year was a “special” year. Between us there were three surgeries. Tonight as I reviewed the calendar I saw a higher than normal number of pre and post op visits. I saw consultation appointments with surgeons, and each month seemed to remind me of a surgery that was, well life changing in its own way. There were certainly a lot of firsts in 2012.

And, sadly there were some lasts too. I couldn’t bring myself not to write GGPa’s birthday on the calendar. It would have been in just a few weeks. Instead I wrote it with a heart around it. This year he will have his cake among the angels. Nor could I stop myself from remembering his and GGMa’s anniversary the same way. It didn’t feel right to leave it off. I am sure she will appreciate a call or an Email anyway.

GGPa, GGMa, Grandma, and Pop (left to right)

I remember lots of birthdays on my calendar. Some for the very young, and others for those quite senior folks I love so much. But, even as I ink those special days into 2013, I know there are no guarantees. I know that my writing their special date doesn’t ensure that we will all celebrate together. It is reality. It is sometimes tough to swallow, but we are not in control.

In Newton Connecticut many young lives were tragically altered. “Calendars” forever changed. No rhyme or reason. No notice. Gone way too soon.

I attended the wake of a colleague tonight. A 45 year old, happily married father of three. He died suddenly Christmas Day. I can not say we were “friends” outside of work, but I can tell you not a person that met this man easily forgot him. His every breath was consumed wither with song, or words of his love for his family. And tonight as I paid my respects I carried a heavy heart, and the reality again, that there are no guarantees.

Meghan was sick this morning. Sicker than I have seen her in quite some time. I was home alone, as Felix works this whole week before New Year‘s. As she lay screaming on the bathroom floor, begging me to make the pain stop, I was terrified. I called my sister to bring me Pedialyte and some essentials. We lay there for quite a long time, at points her eyes were rolling – reacting to the pain in her stomach. I held her as best I could and I prayed, hard. I needed guidance. I needed answers, and I needed that pain to be relieved. He heard me, as He always does. She vomited several times over the next hour or so, eventually ridding herself of whatever she had eaten that was bothering her. I hadn’t seen that agony since the days of the gall bladder attacks when she was three.

We had had plans today, to celebrate my grandparents 67th wedding anniversary with them. Even as the color came back into her cheeks, and the spring back into her step. we stayed home. The lunch date that was on the calendar – unattended. Our warm wishes sent with a phone call instead.

The calendar is a nice guide. A road map of sorts. It tells us where we hope to head. But, as every day reassures me – it, like life, offers no guarantees.

This week the phone will ring. Appointments will be set. A thyroid biopsy will be scheduled. A surgeon for my spleen may even get written in to the calendar as “consultation.” 2012 for us will end as it began.

Although as I tossed the calendar into the trash tonight, I couldn’t help but feel… somehow older, wiser, and even more appreciative of those who somehow come across my calendar each year.