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.
My cousin Kim stood, graveside, holding 2 flowers over the 7 month baby bump under her black dress. Two roses. One was red and the other was pink. One was for her, and the other for baby Mackenzie. It was time to lay to rest her husband, and the father Mackenzie will only know through the stories and photos a strong community will share with her forever.
Exactly a week earlier we gathered together in joyful celebration to shower Kim and Nando with love for Baby Mackenzie, due in November. Little pink clothes, laughter, anticipation and love for a baby they waited so long to have.
The next day he was gone. That fast.
He was one of five children, and part of a large family.
My family, Kim’s family is large as well. Our fathers were brothers, in a family of 9 children, and although mine passed away in 2013, the love shared by all runs deep. We are close to 30 first cousins thick. The second cousins are starting to increase in number.
I sat in the funeral home in stunned silence most of the time. But, the room was crowded, the lines were long, and the hugs and tears were all genuine.
I didn’t know Nando as well as many others. As a matter of fact, I wish I had known him better. Clearly, judging by community response and turnout, he carried the same heart as my cousin Kim in his larger than life body.
I can’t make a bit of sense out of any of it. So I have to lean on my faith, and do whatever I can to offer support. Sometimes tragedy just is…
Kim is strong, almost stoic. She is a mother already, carefully shielding my newest little cousin from the anguish in her heart. This beautiful baby will bring joy to so many.
We do not know the hour…
Tomorrow is not promised on this earth…
When we talk about #beatingcowdens, we talk about vigilance. We talk about a warning system. We already know what we are up against. So often I can’t help but wonder how many people would give anything to have had warning.
It’s all perspective. Sometimes I have to pause here and tell a story that is not about us. That is not about Cowden’s Syndrome.
There is a generosity of spirit that lives in so many. I witnessed it last week in a community outpouring of love.
My Uncle put it into words about his son-in-law.
Although I am not surprised.
I have received that generosity of spirit from Kim and Nando, and the family so many times.
Pay it forward. The idea that you do good things with no expectation of repayment. That’s how they live. This week we got to witness a little bit of the good that comes from living life for others.
More than one person my cousin works with, sat with me at the funeral parlor to ask about Meghan and I. I didn’t know them. They knew of our story through Kim.
Currently our fundraiser for the PTEN Foundation is scheduled for 10/28. I contacted my Aunt, and asked if we should cancel. I needed to know if it was too close. I would never ever want to be disrespectful.
Don’t cancel. Kim plans to be there.
I guess that’s just what family does for each other. And there is always plenty of room at our table.
Pull up a chair. We’re in it for the long haul- together.
Tomorrow marks exactly one year since my Pop moved on to Heaven. I say that with confidence, because while my Pop was larger than life here, he was forever a humble, faithful servant of God and His people.
They say the first year is the hardest. I’ll say I’m not so sure. The first year is, by it’s nature full of “firsts” and figuring out how to do things for the “first” time. It’s about their first birthday in heaven, the first holiday, or family tradition they are not there to participate in. And, while this year was tougher than I imagined it would be, I’m not so sure it will be the hardest.
I should be embarrassed at 43 years old to be lamenting the loss of my 96 year old grandfather. I should simply be full of gratitude for the years we had, and for the time we shared. But, that’s not exactly how it works. You see for 42 years I knew NOTHING other than having him there. All the time.
All loss is tragic, to different people, in different ways, and at different times.
We lived in the first floor of their house for 15 years. I kissed them goodnight. They fed me breakfast. They came to our school shows and plays. He drove us to practice. Watching him love my Grandma showed me so much about how a relationship needs to be nurtured.
We vacationed together for about the same span. Ocean City, New Jersey. Still to this date some of the best summers of my life.
We moved when Mom married, but that changed little. We didn’t move far. At first it was walking distance, then driving. Pop taught me how to check the fluids in my first car, and how to measure the pressure in my tires. He told me never to let anyone think I didn’t know what I was doing. He meant under the hood of the car, and everywhere else too.
He and Grandma drove to college to visit. We talked on the phone regularly.
And when I was back home, there were trips to their living room. I usually chose a spot on the floor where I could get a clear view of Pop in his chair. Come to think of it, I almost always sat on the floor. I think it was because even when I became an adult, he was larger than life in my mind. The view seemed more fitting.
There were stories, about the war, about the firehouse, about church and the bank. There were stories, and memories and laughs. There was, “Oh, boy!,” and “Come on!”
There was “Susie,” from a man who spent most of his life in a house with too many women. We even had numbers… “Susie 1, Susie 2…” And to the rest of the women, young and old, “Susie” was a term of endearment.
There were stories I heard dozens of times, and ones I only heard once. Yet, they all blur together now. How I wish I had recorded them. Or written them down.
What I would give to hear, “Who threw the overalls in Mrs. Murphy’s chowder?” just once more…
He was always there. Always. No matter what was needed, the answer was always yes. Always.
For a while I thought Pop was the tough one. I later learned that my larger than life Grandfather was not tough at all next to my little Grandma. Although, I was an adult the first time I saw Pop cry. And it didn’t happen often. Once was when Mom was diagnosed with breast cancer. The second was during a Memorial Service at church on September 12, 2001. There were a handful… but, those two I can picture as if they were yesterday.
When we bought the house in 2000 I wanted wood trim. He was 81. Every day for months I would come home from work elated as a new piece of trim was placed, around a door, window, or floor. There is no room in my home he hasn’t touched. And for that I am so grateful.
He took my husband in as his own. Immediately. He took my husband under his wing and let him extract years of knowledge from his brain. He taught Felix carpentry and wood working tricks, and helped him find confidence in his own abilities.
My daughter loved Pop. I loved the way his great-grandchildren rejuvenated him. It’s hard for me to imagine that just 5 years ago Pop and Grandma were getting Meghan from half days at school.
There are no words for Pop. Even as I try and images flood my mind – there are no words to do justice for the influence he had in shaping me into the woman I am today.
I always knew there would come a day when his body would no longer be with us. I always knew. Yet, I could never really have been prepared.
I wish I had listened a little more closely. I wish I had hugged a little tighter. I wish I had taken just a few minutes to record his stories. But, I watched. And I observed. And I felt the love. And I witnessed the compassion. And I watched a true Christian man support his family to the best of his ability, at all times, and in all places.
I will never forget the lessons he taught. His influence is etched in my heart.
Maybe that’s why I’m not sure the first year is going to be the hardest. I’m certain that not a day will go by without thoughts, words of wisdom, advice, or a smile from him.
I will treasure every single moment, even as the years will surely blur them together.
It’s a blessing to be 42 when you lose your grandparent, but it’s a blessing riddled with irony. If you’ve been lucky enough to be in my position – you know exactly what I mean.
Oh, and Pop, I could use some extra angel power tomorrow at noon. I could never do your memory justice without my voice, so lets keep that surgeon’s hand firm?
A wise person once told me this. I think Meghan was young, and in that two-year span where most of her time was spent screaming. I admit to wanting those days to end when I was in the middle of them. And, while I miss some of the cuddling, truth be told, I’m not sorry I wished THOSE days away.
It’s the rest of them.
From the time she stopped screaming, she’s been pretty cool to be around. And now I look at her eye to eye. While she’ll always be my baby, the years seem to be flying by.
This week I had to explain to her middle school that she would NOT be taking 9th grade math in 8th grade. For some people this makes a lot of sense. For us, not so much. I’m all about the foundation of math, and building without the 8th floor seems silly to me. Plus, really, there is nothing wrong with taking 8th grade math in 8th grade. What’s all the rush?
When Meghan was born she had seven great-grandparents. Two of them she never met in Puerto Rico, but still seven great-grandparents. Insane.
She also had 5 grandparents. That’s a lot of love.
But, I also remember clearly a colleague at work commenting, “That’s a lot of loss she’ll have to endure.”
I was indignant. Annoyed when she said it, because even though my conscious mind knew it to be true, I was not one to sit around and think about it.
We had Cowden’s Syndrome to digest. We had major league health and emotional issues to manage, and I couldn’t allow fear to envelop us.
I surrounded her with the grandparents and great-grandparents as often as I could. And every year that ticked by was a blessing, because she built her own memories and relationships with each one.
Then, in June 4 years ago, in 2012, we lost GGPa, Grandpa Al – Ken’s Dad. He was so much a part of our lives and our family. Ken embraced us as his own when he married Mom, and his family was no different. And Meghan and GGPa… well, she was his “Sapphire,” and they could certainly light up each other’s eyes.
In the fall of 2013, Grandpa Tom got sick. He was never ever sick. But, this time it looked very wrong. And it was. In about 3 months time, he was gone. Snatched away at 65. He had made such an effort to be around Meghan. He was so deliberately making up for lost time and I loved him for it. They had their own set of memories…
A few months later, in October of 2014 Great Grandma Gen headed up to meet the angels she missed for so many years…
And then in March of this year our beloved “Pop” was gone. Pop was larger than life. And even at 96, seemed almost invincible. Until he wasn’t. The ache is deep, and raw.
Five years ago I bought so many Father’s Day cards, people would laugh at me. Five years ago I remember telling Meghan how thankful I was to need to buy that many cards. Five years ago, I couldn’t have predicted…
So much has gone on in our lives on a medical front. If I count loosely I would say it’s been about 10 surgeries between us since that Cowden’s diagnosis in 2011. So often we feel like we are bouncing from one hospital or appointment to another. So often we are scheduling appointments instead of relaxation, surgeries instead of vacations.
But, we make a point to stop. To try. To focus. Yesterday was a tough day. The pain was a bit overwhelming at times. But, the gratitude runs deep, for the family we have. For Felix, the best husband and father we could have ever asked for.
Tonight there was wonder in Meghan’s eyes. She saw the first fireflies of summer after swim practice. They went out to get a closer look.
And I peeked out onto the back deck to catch a glimpse of my 5’8″ daughter on her father’s shoulders – to get a better picture of the sunset.
I smiled, in spite of myself. Tonight it’s not about the weeks ahead. Tonight it’s not about the next surgeries and appointments. Tonight, it’s about tonight. It’s about going to bed a little later so as not to miss the little things.
Tonight is about making memories. The little ones. The ones that matter. The ones you carry in your heart forever.
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…
I vaguely remember a shirt my older sister used to wear when she was swimming. The message was something like this.
It was motivational, meant I am sure to remind the young swimmers that their fatigue from grueling practice would translate into race times that would forever keep them proud of their accomplishments.
And in that case, I hope the pain, the pain of lap after lap, translated into successful meet times that led to a gratifying feeling of pride.
But what about when it’s not that neat? What about when you can’t sort it out in a package, or tie a bow on it?
There is emotional pain. The empty pain of loss.
As I type, I have two lit candles on my desk, celebrating the 60th birthday of my uncle in heaven. The pain of his wife, his children, his mother, my dad, (his brother,) can not be explained. The loss is raw. The pain is an open wound.
I think of my college roommate, and her nephews and sister-in-law preparing for Christmas without their 36 year-old father.
I think of the loss of my Dad, just over a year ago, and the flood of memories and seasonal connections complicating my every thought.
I think of the loss of our beloved Allie Girl last week.
I think… and I think. And I know how badly it hurts. And I know we are so far from alone. I am grateful not to be able to imagine the depth of the pain some feel.
Pain is temporary…
There is the pain of anxiety. Very real. Depression. Equally crippling. I’d be lying if I said I haven’t battled with both my whole life, amped up by this Cowden’s Syndrome torment under which my girl and I will live forever.
Try as I might, the worry is stifling. The sense of urgency all the time is exhausting. There is little room for error. Screenings, medications, lab work, surgery. All scheduled with precision to conserve sick days and minimize missed school. Except when I can’t. Like when it’s an emergency. Then we just roll with it.
The anxiety weighs on my girl as well. 11 years old, trying so hard to be normal, and to fit in. But, the reality is there is no “normal.” So she fakes it as best she can, blessed to be surrounded by some spectacular kids.
But, she gets mad. Mad at the doctor, mad at her knee, mad that she takes two steps forward and three steps back, in this poorly choreographed dance she is forced to participate in. Mad that she can’t be “the best,” because her own best is unacceptable to her. And some days when she is extra mad, I wonder about the thyroid. Cause its absence affects all things. And this week came the phone call that the numbers have increased 400% over the last 3 months again. So we continue to raise the dose of a medication that I don’t think does a damned thing for her. We play the game while I search, frantically for someone to “get it.”
Pain is temporary…
Except when it’s chronic. And it involves every single minute of every day. And the one medication that does work is off-limits. And the surgery to plug the hole in the artery that was likely provoked by the absence of THAT medicine, causes and abundance of scar tissue and this feeling of a lump the size of a cashew or two exactly where the knee should be able to bend. And you have no way of knowing if its going to get better, or happen again. Any minute.
And the pain, well if it was only in your knee it would be better. But it’s in the shoulder, and the neck, and maybe it’s caused by the feet over a 1/2 size off, or that slight curve in the lower spine, or something else no one cares to figure out.
So, you gather your spoons. And you borrow a few.
And you press on. Through sixth grade and onto the principal’s honor roll, and through student council, and drama club, and fundraising activities, and swimming your butt off. Cause what choice do you have?
Pain is temporary…
We talk about injury pain, vs healing pain. Tonight’s pain counts as the healing type cause it was generated largely by exercise. This pain is movement in the right direction. Swimming heals the soul.
You have to find what heals the soul, or you will lose your mind. There is no other way.
Pain is temporary… cause it needs to be.
You have to find what brings you peace.
Two weeks ago on December 4th, I chose this. The butterfly breaking out of the cocoon. Free forever.
I miss my Dad.
My heart is full.
But we press on. Because pain is temporary. Even for all of us in the middle of the worst pain of our lives. The sun will shine again.
Channeling that energy into raising awareness, fundraising, and helping those whose sun hasn’t come back up.
This Memorial Day, re-blogging my own sentiments from Veteran’s Day last fall. This Memorial Day I remember 2 grandfathers, and my father. All veterans who are forever with us in spirit. Their sacrifices never forgotten.
When I taught Social Studies I most enjoyed the curriculum that allowed me to teach about the United States. It made me sad on Friday to overhear conversations about this upcoming weekend, and never once feel there was an understanding of Veteran’s Day. When I was a fifth grade teacher the children wrote about their “Rights and Responsibilities” as American citizens. That was a long time ago.
I was raised to answer the question, “Where are you from?” with, “The United States.” Growing up, that aggravated more than one person who was looking to learn where my ancestors had traveled from to arrive in America.
Precise language. They learned to ask the question they wanted to know the answer to, or not to ask.
As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head. I have thought of the song from time to time over the last 20 or so years. The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991. As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song. It isn’t too often that a song “speaks” to me…
When you pass through the fire, you pass through humble You pass through a maze of self doubt When you pass through humble, the lights can blind you Some people never figure that out
You pass through arrogance, you pass through hurt You pass through an ever present past And it’s best not to wait for luck to save you Pass through the fire to the light
Pass through the fire to the light Pass through the fire to the light It’s best not to wait for luck to save you Pass through the fire to the light
I have a brother.
Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years. But I have a brother. And I am damned glad I do.
I have always loved him. Always known he was there. Always followed the tales of his life from afar. Always sent a card. But, never really got to spend any quality time with him. Knew he was well loved. Knew he was tons of fun. But never really got to KNOW him. Not by anyone’s fault. Life and circumstances have a way of getting in the way.
And then some time in November I had to make a phone call. I had to call him in the middle of the life he established Texas, and tell him Dad was sick. Quite sick.
I had known for a few weeks. I had seen him in the ICU. I knew about the jaundice. I knew in my gut things were not good. But it took weeks to get Dad to let me tell my sister the full extent of the problems looming. Then finally he let me call my brother.
And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.
A few days to digest, and then another call. “I think you need to come.”
And that was all I needed to say.
He stepped off the plane a few days later at exactly the most perfect time. He parked himself right in Dad’s apartment and stayed. He was there for those overnights that were getting a bit tricky – to say the least.
As you pass through the fire, your right hand waving There are things you have to throw out That caustic dread inside your head Will never help you out
You have to be very strong, ’cause you’ll start from zero Over and over again And as the smoke clears there’s an all consuming fire Lyin’ straight ahead
Lyin’ straight ahead Lyin’ straight ahead As the smoke clears there’s an all consuming fire Lyin’ straight ahead
Dad was getting sicker. Quickly. And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.
I grew up with two sisters -one older, and one younger. We grew up understanding each other’s strengths and weaknesses, and working on love throughout. Now I was in a different trio. A different dynamic. For a different purpose. One none of us wanted to face – but we were there. And the “All consuming fire” was “lyin’ straight ahead.”
We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years. We took the best of what each of us had to offer. We laughed at old stories. We cried out of sadness and frustration, and anger and disappointment. We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.
Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state. My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”
Well – not quite THAT… but to some extent yes.
And there were times that we sat, each on our own personal hell. Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better. We sought the magic wand… and realized it was already in place.
They say no one person can do it all But you want to in your head But you can’t be Shakespeare and you can’t be Joyce So what is left instead
You’re stuck with yourself and a rage that can hurt you You have to start at the beginning again And just this moment this wonderful fire Started up again
When you pass through humble, when you pass through sickly When you pass through I’m better than you all When you pass through anger and self deprecation And have the strength to acknowledge it all
When the past makes you laugh and you can savor the magic That let you survive your own war You find that that fire is passion And there’s a door up ahead not a wall
Dad’s struggles. Dad’s worries. Dad’s heartache. His pain. They were about to end. He was going to be free from his broken body. He was going to be free of his suffering and his pain.
But what about us?
I know all about the truth, and I believe deeply in Heaven. But I am selfish. I miss him. I miss my sounding board. My ally in all endeavors. My confidant for the “blow by blow” struggles that were too tough for others to hear.
“There’s a door up ahead not a wall…”
We met at the cemetery today. We stood for a while. We cried a little. We prayed a little. We held each other a lot. We know he’s not there. He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him. But I admit to not shaking the selfishness.
We ate pizza as a family. The conversation was easy and light. Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest. She told him all about the arrival time, and the procedure. She spoke like a pro – someone easily twice her age.
So much uncertainty. So much loss. So much worry. So much… so soon.
She has taken an extra love to her Uncle Shane these last few weeks. This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.
As you pass through fire as you pass through fire Tryin’ to remember it’s name When you pass through fire lickin’ at your lips You cannot remain the same
And if the building’s burning move towards that door But don’t put the flames out There’s a bit of magic in everything And then some loss to even things out
Some loss to even things out Some loss to even things out There’s a bit of magic in everything And then some loss to even things out – Lou Reed
I have a brother. And now I have to let him go. But not far. And certainly not forever. For no one can live through what we lived through these last few weeks and remain the same. There are experiences once shared that can not be forgotten. There is respect earned that can never be lost. The lesson, the reminder that life is fragile and fleeting remains forever. I always had 2 sisters. And I always loved them so.
But now, with an ache in my heart, and tears on my face, I have a brother too.
“There’s a bit of magic in everything, and then some loss to even things out…”
My Guardian Angel is 6 in my heart. That’s the age she was the day in 1991 when she got her angel wings.
My Guardian Angel was tenacious. She was fun and feisty. She was strong, and wise beyond her years.
My Guardian Angel battled leukemia for four and a half years. She endured chemotherapy, spinal taps, bone marrow transplants, remission and relapse.
She loved watching “Lady and the Tramp” and she loved her baby sister. She loved stuffed animals, and my grandparents dog “Bo.”
My Guardian Angel was the first kid I ever got to really babysit for. We had some fun times.
My Guardian Angel is my cousin Meghan. She changed my life when she was born in 1985- and I lost a piece of me when she passed away in 1991.
My cousin Meghan went dancing with the angels the year I started college. It was snowing. It was my 18th birthday.
My love for Meghan and the deep loss permeated the next few years of my life. The pain never ever goes away- it changes you. But I decided that I would strive to be more like her. I would take her example of grace under pressure and model my life off of it.
We were already forever intertwined and then she met Jesus on my birthday. The bond- the link- is unbreakable.
My Meghan was born a decade ago. She makes her namesake proud. She shares her strength, grace and wit. She endures medical challenges beyond measure. My Meghan has an angel on her shoulder too.
And over the last few years as the reality of Cowden’s Syndrome and it’s lifelong implications set in- Angel Meghan keeps me grounded. Whenever I want to be frustrated about the cancer risks we face- I am reminded that we are afforded a warning system. I am reminded that these sometimes grueling routine screenings have already proven life-saving for us. I can only imagine how desperately my aunt and uncle would have loved the warning system- and the prevention opportunities we have.
I wonder sometimes- what my cousin would have grown to be. I wonder what the 28 year old would be doing with her life. And then I stop.
Mine is not to figure out the plan. Mine is not to understand the hows and whys. My role is to take the lessons learned, and the people who have taught them and make them part of who I am today. Mine is to keep the memory of a special young girl alive- in my heart, in my life, in my actions, and in my daughter.
So as I brace to celebrate my 40th, on a day when emotions promise to run high, I remember.
Sweet Guardian Angel Meghan, flying with your gold ribbon friends.
Forever remembered. May 16, 1985- November 12, 1991
I cried today. Yep. That was it. Couldn’t hold it in one second longer so I pulled the car into a lot. Thankfully I was alone. And I rolled up all the windows, locked the doors – and sobbed.
It only lasted about 10 minutes, but I caught a wicked headache, and a bit of stress release from that good old-fashioned hissy fit.
I generally make a habit of not allowing them. I am a look at the bright side of life kind of girl. I like to remind myself about others who have it worse, and try to put myself in other people’s shoes. It usually works.
Today the emotion got the better of me. And its OK.
Work was stressful.
Supporting my dear husband while he works his tail off three nights a week at school is well worth it, but stressful for all of us.
Homework. Constant. Ever changing. Tests that need to be studied for. Worry about things not yet complete. Yep, its only 4th grade. The teachers are lovely. The stress is really almost unreal.
Today we went to the Urgi center for X-rays of a foot and ankle that has been bothering Meghan since dance class Monday. She limped for 2 days before I thought – negligent mother should have a doctor take a look. Sprained. Takes time. (Besides the 2 hours out of the afternoon.)
In addition to Cowden’s Syndrome, Meghan has a few other neat things. One of her diagnoses is “Benign Hypermobile Joint Syndrome.” Great – if you can manage your flexibility. If you can’t it leads to all sorts of random injuries. We keep a really good PT around… just because.
But, if I am really really honest – I don’t think any of these things pushed me over into that screaming sobbing cry I so desperately needed. I think it was sadness. Sadness, mixed with raw fear.
Last night I sat with a friend and her 7th grade son at the wake for the little boy who died last week. I couldn’t for a minute imagine that any more sadness could fit in that one room. I had a lot of time to think while we sat. Maybe too much.
I looked first at his family. Mom and Dad poised, and carefully greeting each on the never-ending line. Big Brother and Little Sister, beautiful, supportive, composed. I told you. They could have been any of us. And I am sure they never in their worst nightmare imagined they would be standing there.
And I looked at the police officers, standing in honor. Each one with red eyes as they tried so hard to remain stoic. Undoubtedly they had kids of their own, or they knew the young man well – or both.
Children. Everywhere. Out of order for a wake. Except this time it was theirs. It was their friend. The kid they sat in class with. Young preteens – so many of them former students. Faces raw with emotion. A night they will never forget.
Tomorrow my friend and I, we will go to the funeral mass. We will represent our school. We will try to keep ourselves composed. But, her thoughts will wander to her boys, and mine to my little girl. I will think of the “close calls” we have endured, and the many the Cowden’s Syndrome has on the horizon for us. I shudder at the horror… at the potential.
And yet, if I let it consume me, what life will that be for my girl; my beautiful, generous, compassionate young lady?
If I let the tragedy overwhelm me with the reality that at any moment, any of us could be this family, I will lose track of what I have.
If I lose track, if I stop cherishing the blessings I have, I do not give any honor to the memory of this little boy.
Instead, I hug tighter. Try to strengthen the duration of my patience. Smell the flowers. Say I love you. Believe in angels. Remember what really matters.
I can not comfort this family. My words are useless. They have to find their way.
But, I am quite sure now why I cried, and why I had to cry, and why I continue to cry. I can weep and mourn, with them and for them.
I can hug my little girl, and then hug her again. I can make memories that matter.
Maybe if we all take some time to show some extra love. Maybe then we can find a way to keep his memory alive forever.
God, hold them in the palm of Your hand – tomorrow, and forevermore. Amen.