We listen to a good deal of Contemporary Christian music. There are other tastes among us, but often, especially in the car – we listen to this. It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith. This music helps keep us focused when things can otherwise seem blurry.
This particular song surfaced a few weeks ago. Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.
When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.
We left the hospital with our list of directions. We went to the surgical follow-up. We scheduled PT. We even held an extra week before restarting swim. There were crutches for a very long time – used responsibly. So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.
No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively. But, there never really is a solid explanation. I’d like to say we’re used to it. But, I don’t like to lie.
There were more crutches, and more PT with the BEST PT in the whole wide world. (We LOVE Dr. Jill – because she works on the WHOLE kid. She gets that they are more than the body part giving them trouble. I know of NONE quite like her.) There was increase in strength and range of motion. There was a return to (half) swim practices.
There has been diligent icing after swim. There has been stretching and strengthening because, quite frankly, she WANTS to feel better.
We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month. We longingly imagine the same scenario every year. What if summer could be time to relax? What if we could take day trips? What if we could come and go, and rejuvenate?
I just counted 20 medical appointments between us over the last 31 days. There are 2 more tomorrow.
Chronic illness is a real drag at any age. When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.
When you are in an almost constant state of recovery, you can find yourself tired. Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.
Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.
It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day. There are days you quite simply run out of “spoons.”
But, in life there are more times than not that we have choices. I try to model for my daughter, but so often she models for me. You can choose to sit alone. You can choose to let pain, fear, anxiety and frustration take hold. You can choose to be sad. You can choose to be mad. Or you can realize that life is hard. Everyone’s life is hard. Life is also full of blessings.
When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…
I admire many things about my daughter. She is not perfect – neither am I. But in her soul, there is a “Never Give Up” attitude that permeates all things. There is a constant quest for equity and justice, not just for her, but for all she interfaces with. There is a compassionate need to help others. There is a desire to be successful in spite of her circumstances – not because of them.
She always says she loves to swim because regardless – she has to meet the same time standards as everyone else. Somehow it makes each comeback a little sweeter.
No one else would likely know, or realize, or remember. But, we know.
First year on the high school team. The season starts right after school. She’ll be ready.
That’s why we will always remain
“…There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away…” Danny Gokey
This video is worth your time…
Danny Gokey – The Comeback
After a season of nightfalls and pushbacks
After the heartache of wrong turns and sidetracks
Just when they think they’ve got you game, set, match
Here comes the comeback
Just cause you laid low, got up slow, unsteady
Don’t mean you blacked out or bought out you’re ready
Just when they think there’s nothing left running on empty
Here comes the comeback
This is your time, your moment
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
You feel the lightning, the thunder, your soul shakes
Under the roar of the heaven, the tide breaks
And from the ashes you will take your place
Here comes the comeback
This is your time, your moment
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away
Just when they think they’ve got you game, set, match
Last week my daughter pulled on a shirt before we headed out to the doctor for the umpteenth time this summer. I didn’t think much of it at first. I was grateful she was dressed and pulled together, and ready without event. As a matter of fact, I was in full on grown up mode, rushing her almost 5’8″ frame and her crutches along to get us prepared for the obligatory ridiculous traffic as we traveled what seems to be the longest 30 miles ever.
I don’t think I even read the shirt until we were in the waiting room a few hours later.
I had read the Harry Potter series as each book came out – beginning as a 5th grade teacher more than 20 years ago. My daughter enjoyed the series in its entirety in a brief period during her year in second grade. I enjoyed the books, each one, but it took a reread or two to analyze things on a deeper level for me. Dumbledore, the wise guide had an infinite amount of wisdom to offer.
Whether she realized it or not, my girl was sending a message that morning – to both of us. There is an ongoing battle, here, and I suspect in many lives, to live the days as they come. We try to “get out of our own way” and “our own head” as the case may be. And it is not easy. When we look further ahead than the day, sometimes even the hour, or moment, it is easy to get swallowed up. The darkness comes hard and fast. Too many appointments, too much worry, too many “what ifs,” too much time wasted, too many plans unfulfilled. No one likes the dark.
So don’t stay there. Turn on the light.
Thank you J.K. Rowling, for giving us Albus Dumbledore.
That appointment Tuesday, it wasn’t great. There are still no real answers. There is swelling on the knee. There is pain. There was confusion from the surgeon. He decided we had rested the knee. Now, it was time to add two medications to treat the knee, a neoprene sleeve for swim, and PT back in the equation. For 2 weeks we will move it and see if that helps. Nothing more than educated guesswork.
I hate it when we have to guess. But, I am grateful for a surgeon willing to logically troubleshoot. We visit him again in 2 weeks. He is confused, but he is smart. And he will not quit.
So with a surgeon who made the choice to keep working on it – my girl did the same. Every day we have choices to make… all day… every day. Those choices shape and mold us.
My daughter was to be part of a beloved theater group these first two weeks of July. Some of the most compassionate, talented and caring young people are in that group, guided by adults that are not afraid to give everything they have for the betterment of the children in their charge. Last year, she had arguably one of the best experiences of her life, and when the word came that she could not participate, that the knee was not prepared for that amount of standing – she was crushed. But, being who they are, the staff, and the students alike not only allowed her, but welcomed her to be with them during rehearsals. As we watched two amazing performances of “Aladdin Jr.” on Friday night, I know she wished to be on the stage, but the pure joy of excitement for the success of these children – her peers- was evident.
She could have sat home and sulked. They could have said she could not come. Instead, the best possible outcome came from unfortunate circumstances. Another major life lesson. Executed flawlessly.
My daughter has dreams. Big dreams. She aspires to be a better human, and to assist those who struggle. She wants to learn her voice, and sing to the best of her ability. She desires to perform, on stage, often. She seeks venues for community outreach and has goals to raise awareness and funds to cure PTEN Mutations like our Cowden’s Syndrome, and other rare diseases. She strives to be an athlete. The same thrill of competition that creates great anxiety, lights a fire deep in her soul. She also has hopes, standards, and expectations for herself. She actually, most days, can do a lot of the parenting work without me. But, sometimes when those dreams and goals are forced to pause, and rest for whatever issue is going after the body at that time, its nice to remember the words of Dumbledore, “It does not do to dwell on dreams and forget to live. Remember that.”
Exact, precise language. That is how my girl likes it. We sometimes kid that she will be an attorney. At the very least, an advocate for herself, and maybe others. There is little gray area with Meghan. She likes people who are kind. She does not like people who are not. End of story.
Or is it? In this age of adolescence there are times when lines are clear, and times when they are blurry. Emotions run high. There are times when things are said, and done that are deliberate, and mean and awful, and other times where things FEEL deliberate and mean and awful where that was not the intention.
That changes things for the speaker, but rarely for the recipient. With intent being often left to the interpretation of the recipient, words can cut more sharply than a sword, and pierce the soul and the spirit. Words hold great power.
The absence of words, those kind sentiments, thought, but never spoken, can injure as well.
My girl is far from perfect. I myself am far from perfect. We have many conversations between ourselves about the power of words. Sometimes we hurt each other’s feelings. Usually we talk it through. Our relationship invariably gets stronger.
That’s because we speak. And we hear. So many times when words have hurt, a conversation could clarify so much. An honest reflection that not a single one of us is perfect in our speech or actions is invaluable for growth. Friendships grow, not over text messages through an iPhone screen, or photo exchanges… friendships grow when we take the time to talk, and laugh, and listen and hear and care.
And, perhaps many times, when you are lonely or simply alone, those are the times words, or their absence, can hold the greatest power.
Nature vs. Nurture.
An especially complex conversation in light of genetic discoveries happening every day.
In this house my daughter, although she first learned of it as she turned 8, was born with Cowden’s Syndrome- a PTEN Mutation leading to a high incidence of benign and malignant tumor growth. She was born with this condition, because I was born with this condition. That statistics and numbers are real. They are hard core. They are disturbing.
However, because we are BORN with this Syndrome, it does not mean we will develop every possible manifestation. We have AVMs and thyroid issues, and lipomas, but of yet, no colon issues at all. I had breast cancer, early stage. So did my mom who is not a PTEN patient. We have large head size, but not autism. You get the idea.
I believe we are born with certain things. I believe that Meghan and I were born with Cowden’s Syndrome, and I even have theories about its origin.
I also believe that EVERYONE has something. We are either born with it, or it develops. Whether it is a physical ailment, or an unfortunate circumstance, there are forces affecting each of us.
Life is not smooth. But within life there are choices. Every day there are choices.
Choose to find your “Never Give UP.”
Choose to trust.
Choose to take risks.
Choose to care.
Choose to push yourself.
Choose to believe you can.
Knowing, that sometimes those choices will hurt. Sometimes they will leave you angry or even furious.
Know in your heart that those are the only choices.
As you “grow to be…” it is those choices that will help you navigate the path to be the very best version of yourself.
Some people go their whole lives and never meet their hero. I gave birth to mine, and her stamina and drive continue to inspire me daily.
I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3. I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation. But, aside from the inconvenience of not speaking, I have felt pretty well.
That left me with a little time to get a few things done.
I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.
I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years. I vowed to get to work on that.
I also discovered that I have an account on the family’s “Netflix” and I learned how to sit still long enough to binge watch some “Law and Order.”
There was time over these three weeks for some honest self-reflection as well.
Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it. I already wrote about isolation, and I had some time to think more deeply about what role my own actions play in that. I was able to reconcile that some of it is unavoidable, and some can be mended by me. Balance. I’m on it.
I also took a hard look at my own emotions and how they affect my house.
It is so easy to get “stuck” in the role of caregiver. It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life. We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin. Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt. When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming. And it did.
I sat in my office one day, looked around and realized I was unhappy. That was a tough realization.
I am not unhappy with my husband, or my daughter, or the countless blessings in our life. I just became so consumed with getting things done that I forgot myself. Literally.
Sometimes its good to reflect. It’s the only way to get things done.
Last week my sister sent me a box of essential oils. I was skeptical. I bought a diffuser. I feel like peppermint in the air while I work is good for my soul. So is trying something new.
Tuesday I went to Kohl’s. A quiet activity easily done alone. I felt the tension start to release. I picked up a few things for me and for the house. I went out because I WANTED to.
Something amazing happened Tuesday. My husband and my daughter both remarked that I looked happy. I had a story to relay at dinner that was about me. The mood in the house was lighter.
Wednesday I took a nap in the middle of the day. Because I could. Again, I found myself with a little less pressure in my shoulders.
That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.
I’m a work in progress.
I chose to do a deep cleanse on Thursday and Friday. I was working on my mind, but I had to bring my body along. It had been too long. I had gotten a little lazy in my habits and in my routines. I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.
I woke up this morning having released 5.1 pounds of junk. I started the day with a protein shake full of strawberries. I shopped with my girl this morning. Then, I got to listen to her singing lesson. Now, they watch a movie while I get to write. Then, my little family is off to dinner together.
This week the spring plants that sprouted on 3/3 started to really grow.
The caterpillars that came in on 3/2 have all become butterflies today.
Maybe we all used the same period to try to transform a little. Nothing like a few new butterflies to remind you about new beginnings.
I am focused on this journey now. I may falter along the way, but I will hold true. This feels right. This feels good. And when I feel right and good, it is much easier to remain
If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.
This story Inspirational Staten Islander to host Fund Raiser ran on February 4th. On February 8th I was contacted by the Richmond County Savings Foundation. The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.
We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application. The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away. And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!
We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check. We got to meet Mr. Cesar Claro, who noticed Meghan’s story. We got to meet Ms. DeSapio who helped us so much via phone and Email.
Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway. It was just right for her to be there.
We gathered in a conference room with about 10 incredibly inspirational people. I loved how professional, yet casual the whole experience was. Amounts of grants were not discussed. Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.
Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder. She did great, as usual.
We got to hear from a teacher, and his school’s work with Habitat for Humanity. We heard from “Metropolitan Fire” and how the grant would help their organization.
We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.
We heard about the Moravian Church garden and their donations of food.
We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained. In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience. It was an intense 45 minutes!
Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy. If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy It is a genetic disorder affecting about 1 in 3,500 boys. The body lack dystrophin, and without it muscle cells become damaged and weaken. It is progressive. Michael is 11. They have 2 other healthy children. They are a family like ours. Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.
In the 30 minutes we sat across a table I felt inspired, and connected. I respect so much the positive outlook, and the awareness that even in strife, others have it worse. I respected the acknowledgement that every day is a gift, and life can change your perspective quickly. These are things we identify with in this house. Those are principles we live by.
Meghan and I often feel a little more “at home” in the presence of others with rare disease. While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap. And what also overlaps are your decisions in how to handle them.
I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.” And, “I feel like I was put here to DO something.” Watch this clip and reminisce with me.
Today we were full of gratitude. Today we were inspired by others. Today we were reminded of our own mission. Today was a continuation of an ongoing goal, and a reminder that it matters. It all matters.
We were worried. Attendance was at an all-time low. We had picked a bad weekend, but it was too late to change it.
We took the event off “eventbrite” this year, looking to take the fees they collect and get them to the PTEN Foundation.
It took a whole lot of record keeping, but it was worth it.
We had an “Early Bird Special” and free T-shirts. We opted for a new venue, a deluxe buffet brunch, and beer, wine and sangria for the grown ups.
After months of planning, of soliciting donations, of advertising, Emailing, and distributing flyers, we had exhausted every avenue we knew.
We received so many generous donations that were accompanied by, “I wish I could, but..”
We received so many well-wishes and positive thoughts from genuine people.
But, in the end we were looking at attendance numbers far lower than last year.
We had excellent baskets – Some were gathered by friends and family. Others were given as donations, and many were put together by my loving husband.
Meghan and I wrote out and carefully planned what we wanted to say.
She opted this year to stray from her pattern of creating videos, and she created a Power Point of the year in review instead.
But, as late as that morning the text and phone calls kept coming from people who could not make it.
We walked into the room anxious. Not sure of how the day would go.
We should not have worried.
What this crowd may have lacked in volume they more than made up for in LOVE, SUPPORT, GENEROSITY, and COMPASSION.
They were from all areas of our lives. There were family. There were lots of cousins. There were friends. There were colleagues. There was Meghan’s Physical Therapist, her math teacher, and her former paraprofessional. There were friends of friends. There was Charlie Balloons, and a DJ whose services had been paid by some dear friends as a donation.
There were 42 raffle baskets, and a 50/50. The money generated just from those two things was mind-blowing.
There were 2 schools, PS1 with cousin Kim, and Holy Rosary with our friend Christal, that each raised over $400 at their schools for the cause.
We laughed. We drank. We ate. We talked. Kids danced with balloon creations. There were musical chairs and fun. There was pure love in the room.
When Meghan and I spoke there was silence. Attention. Focus.
Cowden’s Syndrome is understood by this crowd, because of us.
And there stood my daughter, telling this crowd of 100+ that she was tired of “Living with Cowden’s Syndrome.” She “put Cowden’s Syndrome on notice.” She told it, it was time to “keep up with her.” She’s got things to do. Places to go. People to see. She’s growing up right before my eyes.
Not long ago she was a scared and confused 8 year old. Now she is a wise, and mature beyond her years, 13-year-old young woman. She wants the PTEN Foundation to flourish. She wants research, a patient database, and even a cure. She’s 13. There is time to get it right for her, and all the young ones being diagnosed after her. She has drive and ambition.
She chose a song to end her speech. She chose “Let it Go” from Frozen. She toyed around with a few songs, but this is the one that spoke to her, at this moment. This one got to her heart. And you could tell, as she belted it out acapella.
In the end, as people with full bellies, and big smiles, hugged us goodbye, they spoke of “next year.” They said this one was “the best yet.” We felt loved and full of gratitude.
And as we sorted through the finances, we were struck with something amazing. Jeans for Rare Genes 3 would be making a cumulative donation of just over $12,000 to the PTEN Foundation. This love, this event, these people, the generosity of so many, had generated an amazing amount.
Our hearts are full of gratitude.
A donation of over $12,000 to the PTEN Foundation. Because of you.
Thank you for valuing a cause that matters so much to my family. Thank you for loving us. Thank you for supporting us from near and far. Thank you for your never-ending generosity. Thank you for your prayers and good wishes.
The day after Christmas in our house is reserved for a blissful amount of peaceful rest. A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection fill the hours. It is a wonderful, necessary day to pause and recharge.
I am awestruck by how fast days blend into weeks, and months, and even years. My girl is now a young lady. A young lady of 13 years old with the fall devoted to High School Applications, academic honors, hours of swimming, and some drama (class) thrown in for good measure. It was a crazy season, but a remarkable, beautiful time of transformation.
I don’t get time to write as much as I used to. But, truthfully, you don’t need to hear from me all that often to follow along. The writing remains my way to sort out life. I feel fortunate that so many of you come along for the ride.
So much of our journey #beatingcowdens is couched in perspective. We talk so much about the realities of everyone’s life. We talk about the things people endure that we can not fathom, and we talk about how hard it is to have some of the conversations necessary in the life of my 13-year-old. We talk. Often. And perhaps that is the first of many blessing I have.
My girl has become a young woman through a path that is different from most her age. Notice, I deliberately chose the word “different” as we are careful not to measure things in “better” or “worse.” The medical drama unfolded at a fast, furious pace, most concentrated in the years from 8 to 12. And we held fast through each one, but then, slowly, the dramas began to slow down.
At first we didn’t want to say anything. There is the fear of “jinxing” the situation. When medical drama is your “normal” you don’t really know how to live any other way. It sounds bizarre. You want so desperately to be rid of it, but the relief of losing it would be so intense, that to relax and then have it hit you again could be crushing. So you stay on your guard. All the time. But sometimes when you do that you can get a little… I don’t know, isolated, alone, rough?
There is a security connected to living in a state of medical drama. At least you know what to expect.
But, it’s not a place to hang out when you don’t need to.
Meghan’s last biopsy was in July. The follow-up is this week. My last surgery was in August. And, in a turn of events here, I have spent the last few months in vocal therapy sorting out ways to work around the tumor that desires to strip me of my ability to communicate. We’ve had some success, and last week even amidst a terrible head cold, my voice made it with me all the way to Friday.
And it was on that very Friday morning, as I drove Meghan to a 5:30 AM swim practice, with my head-splitting and my nose running, that I told her how lucky I felt. She may have checked me for fever, to see if I had totally lost it. But I explained – a year ago facing Christmas break without her having been knocked down at least once by something major was an impossible dream. This year, she had done more than ever before, and seems to be getting stronger. That morning I was grateful that I was able to get my butt out of bed, to take her to the place she loves, so she could work on the sport she loves.
This fall we have successfully removed 2 stomach medications that were previously necessary for survival. And, we are well on our way to eliminating a third. There is nutrition, exercise, and natural alternatives in their place. And it is working.
She came home a few weeks ago with a perfect attendance certificate for the month of October. I save everything. I think that may have been her first. These are the things that keep us in perspective.
We have a “doctor cycle” among us now. The knee needs to be checked again, MRI, and two knee doctors. There are clinical exams, GI follow-up and endocrinology. The afternoons these next 6 weeks will be swallowed up with trips to NYC. I’ll add in some appointments of my own, as I prepare for vocal cord surgery, tentatively set, but not yet confirmed. We’ll keep swimming, literally and figuratively. We’ll hold each other up, and we will do something a little different. We will, instead of fitting out lives into the doctors, we will fit the doctors into us.
Raising kids, one, two, three, four, or more- regardless of gender, or age combination each holds unique rewards and challenges. We have our moments, my girl and I, when we challenge each other to the best we can be. Sometimes its deep conversation. Sometimes it’s a little less pretty. But, we do it. We learn and we grow together.
I find myself often, missing relatives who are not here with us anymore. I miss conversations, deep and thoughtful. I miss shared laughs, and the pride they felt and showed. I understand, and comprehend their lives are changed, their eternal lives are more beautiful than I can imagine. But, I still miss them.
I sometimes shuffle around a bit in circles in my mind, feeling a little lonely, a little unsteady, and a little unsure of how to break the cycle.
And even at those loneliest points I take solace at the people in my life who are there. Their own lives keep us from day-to-day interface, but they are there, forming that net that will catch me, or us, if we were to fall. They weave a web through our lives that give us such confidence and gratitude, that I can only hope they feel the same way about us.
As we begin to get heavy into the preparations for Jeans for Rare Genes 3, it is a time to get focused. I am not a huge fan of New Year’s Resolutions. A wise friend recently reminded me a calendar is not necessary to begin change.
Choose positive. That is my simple focus. I will not be perfect at it. But, I will work tirelessly. I will be positive, hopefully not to the point of irritating, but when given the opportunity to face a new situation, I will work to find the positive.
Cowden’s Syndrome will toss us curve balls for the rest of our days. I’ve never been much of a baseball player, but I plan to practice my swing. And just in case- I’ll keep a helmet on as well.
May the culmination of 2016 lead us to gratitude for all the positives it brought, and gratitude for the negatives as well. May it leave us with the reminders of the blessings in our lives. Only in appreciation of al of it can we ever move forward. And really, forward is the only direction I choose to travel.
I think I blinked, and the calendar changed from October to December. Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming. But, I “lost” the fall in a beautiful way. I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about. Four years ago I could not have imagined she could keep this schedule. She battles for it every day and I admire every ounce of her determination. I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us. Meghan’s appointments begin late this month. Mine will overlap, likely culminating in vocal cord surgery. But, for now, for this moment, I am grateful for this chaos. The hint of “normalcy” is not to be left unappreciated.
Today though, I blocked out some time. Today I needed some time to sit in my office and look around. There are beautiful images on the walls of my office from New York City to Washington state – and places in between. Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours. There are thousands of such images on my laptop and several backup drives. You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum. Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.
“A Few Good Men,” has been far more than a movie title in my life. I was blessed to have 3 grandfathers that shaped who I am. I am equally blessed to say I have had two fathers mold me into the woman I have become. My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between. There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.
My father, well… let’s just say the early years were rocky.
What I know now, but I didn’t know then, clarifies a bunch. Dad, a Vietnam veteran came home lost. The earliest years are peppered with memories that don’t leave “the warm fuzzies.” The years after that hold memories of fun visits. Dad would come by sometimes. There were movies, and visits to the park and the zoo. There were restaurants, and exciting novelties. But, there was not consistency. There were chunks of empty time. There was a lot of wondering.
Contact got more steady in the teenage years, especially after my brother was born. There were more visits, and more phone calls. But, history sometimes repeats itself, and there were years that faded away again.
Later, after high school, and probably after college too, there was more. Maybe I was ready. Maybe he was. I’m not sure. But, slowly and carefully, over years, a relationship began to form. By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.
After my daughter was born, he started showing up more. And I liked it.
Hard times came for Dad, and the restaurant industry finally failed him. And that low for him, was the point our relationship became solid. Nothing happens overnight, but he was here. Close. Interested. Available. He helped pick up Meghan. He came to birthday parties, and dance recitals, and swim meets. He came by for Father’s Day and even celebrated a birthday with us.
It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.
“I have PTSD. Do you know what that is?”
“Yep. I know. (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”
He was stunned. He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder) He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life. 13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior. I was able to pick up from a text-book the reasons why he had shied away from our relationship. I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.” But, in that moment, hat moment when he said it THAT is where I got him back.
I can’t say I remember the day. And I may be wrong on the year too. But, it was sometime around 2009. Finally, he was working on his own healing.
And he worked hard.
We spoke more regularly. Once a week usually. Sometimes it was his turn. Most of the time it was mine. As I struggled through raising a chronically ill child, he became my sounding board. He was my confidant of all things. He was where I went to bounce the tough decisions. Because, life had left him a great listener. Raising a child with a rare disease, means often having to make really tough choices alone. When your disease affects only 1 in 200,000 people, experience with it is limited. When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.
It is hard to hear over and over again that a child is ill. Especially, when it is your child, or your grandchild, or one you love so much. I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart. Dad was the one who could hear it all out. He heard me without speaking. He listened attentively. He offered advice only when I asked, and offered encouragement always. These were not situations where I just needed my ego stroked. These were tough conversations to have, and he never ever shied away from one.
He simply would bring me back to reality. He’d ground me by telling me to use Meghan as my guide. Check on her health, physically and emotionally. Focus. Trust my instincts. Be able to correct wrong decisions whether they are mine or theirs. Still now, three years later I find myself aching for those conversations. She is stronger. She is tougher. She is amazing. But, there are still so many battles to face and so many difficult decisions to make. That’s when I retreat to my office. I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think. I talk the conversation through as if he were here. Because I know he is. I just have to listen really carefully.
Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him. When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time. While I could never profess to connect this to the horrors of war, he did. And I think it allowed him to open up with some of his own stories.
Through those years I heard tales from his mouth I had never known. I heard of battles, and losses and names of people, and places. I listened so attentively. Quietly. As he had done for me. Sometimes I even took pen and paper to write down his story. Because I wanted to hang on every word. Because you just never know.
I found out Dad was sick when I made that Friday night phone call in October 2013. His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn. When I asked him if anyone knew he said he wasn’t too sure. But, he said, “now you do.” And he laughed, as only he would at that moment.
I got to the hospital the next morning and we went through the details. At that point no one knew anything. Confused doctors was a topic we had spoken about at length.
The 10 weeks that followed were just a long blur. There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments. Sometime after that he admitted he couldn’t drive himself. That was a tough day. I had already called in my sister, and it was time to reach out to my brother in Texas. Family meeting. The “team” assembled.
And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.
Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him. No more suffering. No more PTSD. Pancreatic cancer at age 65.
I dialed his number for months after. I still know it in my heart.
I spent the months after he died cleaning out his apartment. Dad was not a man of many “things.” His iPhone held no Email, and only one photo. “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.
As I cleaned I took every single scrap of paper he had ever written on and clipped them together. I laminated them. It was to be the only way we would ever “talk” again. It is Dad’s quotes scattered through this piece.
He loved light. And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.
Dad was, to our family, and friends, a photographer. “Tom” would have a camera around his neck at all times. He took joy out of capturing happiness. He took pleasure at photographing family events, and sharing his photos with everyone. As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images. We sorted out the family shots from the scenery ones. We put up a sharing site for all those family images in case anyone had never seen them. And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.
At some point we will organize an art show in his memory. We will print, and sell his treasures. We will find a place to donate any profits that will honor his memory. We will let the world see what he saw. Dad used that camera lens to showcase the light. To view the beauty in the world. Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.
Dad did not leave us rich with money, or objects. He left us rich with visions and memories. The former keeps you satiated for a little while. The latter can keep you fueled forever.
The last gift Dad left for me, was one I did not see coming. In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart. I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.
Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior. I reached out to every Marine in that list, and if they were still alive, they reached back. Over 20 of them. 45 years later. I grew up knowing Dad had 7 brothers and a sister. I had no idea of the Marine brothers scattered around the country.
I have had the pleasure of meeting many of them. And this past summer I brought Meghan to meet a few too.
Alan was the first to answer my letter. From West Virginia he called to tell me he remembered crossing time with Dad. He researched the story I told him about the incident. He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy. Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.
My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.
I do not know the book this came from, but I found this among his clippings…
My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.
He left thousands of photos. Snipits of his own words, and memories of times that we got it right.
I sometimes always wish that he would answer when I called him on the phone. But, I know. I know that he is flying free. And I know, that while he needn’t be saddled with the cares of this world, that he checks in. That he is nearby when I need him the most.
So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky. When she sees the beauty of the world around her. When she looks for the good. When she keeps her friends list short and neat, I see my Dad. I feel him. I know he’s right there for that moment.
Only when you love deeply do you feel great loss. They all hurt. The oldest to the newest. I can not change the way I love. When I love it is with my whole self. Otherwise, why?
This one hurts differently because it took so long to get it right. But, I rest with the gratitude that we did get it right. And once you get it right, if it’s truly right, nothing before that matters anymore.
You may never know the strength you gave to help us remain