Nope, not us. No way. No how. Terrifying. Not going to happen.
Until last week.
Something clicked inside her head, and she decided that she had come to conquer.
There was a pit in my stomach when she first declared she was going to go on Space Mountain. Roller Coasters have never been my thing either.
But, she even decided who was going to sit in front of her and behind her. No getting out of it for me.
She told me that she had been through a lot in her life. And that she shouldn’t be scared of a ride. True. There was that quote by Eleanor Roosevelt we had read, and referred to so many times.
No not the other quote, “The only thing we have to fear is fear itself.” – FDR
This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt
The first time we were both a little scared. Then there was the second time. And by the third time she owned it.
“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago. Twice. I went too. And I really didn’t mind.
“Life begins at the edge of your comfort zone…” Words I am learning to be truer each day.
And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together. I did Star Tours too, but virtual reality isn’t really agreeing with me anymore. Maybe too much reality?
So she went on Mission Space with her Dad – twice. Once on the beginner level, then on the advanced. And they rode Splash Mountain too – just because.
It makes me happy to see her conquering fears. There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.
And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…
“Never settle for the path of least resistance… I hope you dance…”
“I Hope You Dance” – Lee Ann Womack
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.
So it came as a little surprise when she was asked by the Borough President if she’d like to throw out the first pitch at a Staten Island Yankee Game to help draw attention to her platform and continue to raise awareness of Cowden’s Syndrome.
Meghan’s friend has been a great support in so many ways.
She didn’t hesitate with the “yes,” although she admitted not being too sure of what she had gotten herself into.
Thankfully my very good friend has 4 boys. And among them they were able to locate some gloves and some baseballs for a few impromptu pitching lessons. And I have to say they did a good job.
Leaving for the game she had quite a nervous stomach. Once we arrived she was focused on a “practice pitch.” Once that was accomplished we had a few moments to take in the magic around us.
60 of our friends and family had taken time out of their lives on a busy Wednesday night to support Meghan, and our need to raise awareness of Rare Diseases. In addition, it was team night for Meghan’s Swim Team, so there were many of them cheering as well.
When we had first set the date, I wasn’t sure how public to make the event. I didn’t want to put people out. So I posted it on my Facebook wall a few times. I was floored. And intrigued. My cousin Kim asked me to order 23 tickets for her. I didn’t ask too many questions. My family is big enough that cousins have to trust each other.
We were greeted by Kim, and there were T- Shirts. It took me a second or two to process. Then I read it. Looked around. Choked back a tear and threw it over my head.
Absolutely touching!
The pitch went off without a hitch, and the announcer crammed so much information into a minute it was amazing. It’s hard to hear, but trust me!
PRESS THE ARROW…
The night was just fun. Exactly how summer nights should be. The weather was perfect. The company was outstanding.
And, even as the crowd began to dwindle, we sat to watch the game, with the Yankees down 4-1.
And in the bottom of the 8th as it neared 10 PM, Felix and Meghan made a deal. If the Yankees scored in this half, we could stay till the end.
Four runs later, they pulled off a beautiful “come from behind” win.
And as we walked to the car we stopped at the “Postcards 9/11 Memorial” and we remembered how very lucky we are, even in the midst of chaos.
That first pitch, symbolic of overcoming challenges. Of conquering fears, and of new beginnings.
That win the Yankees had just pulled seemingly out of thin air, was the result of a refusal to quit.
They worked like a team. They made it happen together.
A perfect ending to a perfect night.
Here are pictures of SOME of our team. There are just so many more that support us each and every day.
We LOVE you all. Thank you for helping us tell the world. We are …
BEATING COWDENS together.
There are not enough photographs, for those at the game, and for those who are ALWAYS with us in out hearts. There are not enough words to express our gratitude for the love showered on us so regularly.
It is only with your support that we continue to push on.
But then there are days that it smacks me right across the face. And it stings, no, actually it’s more like a scalding burn.
I post mostly about Meghan. She’s my hero. She’s my inspiration. She motivates me to be a better person, every day. But, if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed.
I feel good. I really do. Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.
But there are the scars. They hide behind my clothes like a little secret. Cause people forget. And that’s what I want, because most of the time I forget too.
But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time. And my shirt doesn’t sit quite right. And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction. I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal. It just wasn’t worth it to disrupt our lives longer.
I saw the plastic surgeon last week. My two-year follow-up. Hard to imagine. She gently reminded me again that she could even things out whenever I was ready. No cost thanks to the positive pathology for breast cancer, and the genetic mutation. No monetary cost. I’m not ready. Yet.
I saw the breast surgeon last week too. I see her every 6 months, so she can make sure nothing sinister is growing behind those implants. The reality and the reminder that as fortunate as I was – I still had breast cancer. And once you know for sure that those malignant cells had life in your body, you never look at things quite the same. “No lumps or bumps,” she happily reported. “See you in 6 months.”
I can’t wait.
And there are the lymph nodes in my neck. They were checked last week too. Sonogram. As long as they stay stable, we can leave them alone. “But, if they grow…” she reminds me every time. Six months for her too.
And my legs. Fitting into the smallest size they have ever in my life the veins are protruding again. The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23. But, it doesn’t really matter I guess. The legs start with a familiar heaviness. Then there is the throbbing. The last thing I feel before bed, and the first thing I feel after the alarm gets shut down. And the pulsing – like I can feel the blood moving the wrong way through the broken veins. And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2. I switch to “Bermuda” length and some sundresses. I wait for the word that GHI has approved another vascular procedure.
Not to mention I saw the GYN Oncologist too. Everything ramped up a notch with the “Cowden’s Syndrome” label. There are no “regular” visits anymore. Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital. Two years since the hysterectomy too. Time marches on. You can barely see the scars from the laproscopy. But I know they are there too. A few inches under the implant scars. Reminders of the year that changed my life. Our lives.
The week finished with genetics. Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man. He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis. Then he drew my blood. More genetic testing. This time not because of the Cowden’s Syndrome. This time, it is to fulfill the wishes of my father. Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about. We both said a silent prayer that the test yielded a whole lot of nothing. We hugged again. It’ll be about 6 weeks.
So this morning my shirt didn’t fit quite right. The indentation on the right side was causing the shirt to fit lopsided. And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take. I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.
This is the reality she knows we share. Yet, I want so badly to help her maintain some of her youth. Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young. There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.
It only took a minute. Although it seemed longer. A hug from my husband. My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss. And it was time to shake it off.
But not without first acknowledging that maybe that was quite a few appointments for a week’s time..
When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.
There are no coincidences.
And as we sang along, I looked in the rear-view mirror.
“Fix My Eyes”
“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently
I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”
Click the image to hear the song…
We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.” We met a lovely woman who was surprised we weren’t raising money for us specifically. We explained that we were grateful. I feel well enough to work. We have good medical coverage. There are so many not as fortunate.
When it gets to be too much, I know to fix my eyes on things far beyond the mirror. I have a greater purpose right in my own house. And WE have a greater purpose.
I know that teachers have the power to change lives, but as my girl gets to the middle school years, I am really starting to think the power is with the coaches.
I have always wanted my daughter to be an athlete, and truth be told, THAT didn’t take much convincing. She is a natural competitor. She loves the thrill of racing. competing, and performing. She has done some time in soccer, with some fantastic coaches, who worked to nurture her. She loved her time dancing. But, her body, much to her chagrin, was not made for pounding. The knees, and hips, and major joints couldn’t handle the impact.
So we headed to the pool. Her first experience with any competitive swimming came at the age of 9, on a CYO team we were connected to through a friend. Soon after that season she tried out, and was accepted to join a 12 month team. She began with them in July of 2013. And, while the desire to compete was always strong in her, it seemed there was constantly something standing in her way.
We started the year with the goal of making 2-3 practices a week. But, in the fall things took some wild turns, and there were migraines, and neurologist visits, viruses, and fatigue, and strep, and one obstacle after another. There were weeks one practice seemed like a feat. Meghan had a hard time finding her place, because she wasn’t there much. And the cycle continued. During the fall my father became ill and passed away quite suddenly in December. That set her into a bit of a tailspin. Then in the end of December a routine thyroid appointment told us there was much to be concerned about, and that she’d need her thyroid removed.
Ironically this is about the time she started to enjoy going to practice. The coaches were intelligent, and compassionate. The kids were all finding their way.
Meghan responded so well to the two young women who coached her most often. They understood her medical trials, but treated her no differently. They pushed her just enough, but never too hard. They listened when things hurt, and gave her ways to work through it.
She mustered the courage, and stayed healthy enough to make it to her first big meet in January. She was awed by the whole experience, and truth be told, I don’t even remember what she swam. Like so many firsts, it was about getting it done.
Thyroid surgery in February sidelined her for a few weeks. And, long after her body had healed physically, her thyroid hormone levels never seemed to take to the synthetic replacements. An emergency room trip in February – 10 days post op, led to an overnight stay and the elimination of the synthetic calcium from her diet completely.
But, by the beginning of March she headed back to practice. Her coaches welcomed her, encouraged her, and built her up. She started making regular practices, and swimming CYO at the same time.
Then, in May her body quit again. Severe gastritis landed her in the local hospital for 6 days. She missed her last CYO meet. She underwent extensive testing, and the blame for the erosions in the esophagus, and the inflamed, bleeding ulcerations in her stomach lay with the Celebrex – the very medication that was allowing her to function through the chronic pain that plagues her.
Crossroads.
The elimination of Celebrex, and the discoveries of the damage it had caused in her GI tract, led to changes. Her already Gluten, Dairy, Soy free diet, became also free of beef, spices, chocolate, and the other tastes that had carried her through. Then there was the pain. The constant awareness of pain in all her major joints was playing mind games with her. The pain – very real – could be fed nothing to control it. Oral pain meds were, and still are off limits.
Weak from her stay in the hospital, it took another week home before she could even consider a return to practice. And when she did, she was angry. She was angry at her body for the pain, and angry that she couldn’t keep her old pace. She was just angry.
But the coaches, they were supportive. They let her take the lead. They let her take her time. She rested when she needed to. She left early when she had to. And finally, just about 3 weeks ago she started making full practices again.
The pain is a daily battle. One she is fighting with mental power to overcome, and the best nutrition we can offer to her.
Last week she made 4 days of swim camp with the varsity swimming head coach at the local college. 6 hours a day. She slept well. She was sore. But she was determined.
So, when we set off for the meet upstate yesterday, my expectations were low. I was hoping she would finish without disqualifying. 100m of butterfly is not for the faint of heart, especially in a 50 meter pool. But she did it. And closed in with a time .67 seconds away from qualifying her for Junior Olympics. Junior Olympics, the best of the best swimmers in her age group. An honor just to make it in the door.
We went back today to give it one more try, but it wasn’t meant to be. This year.
Close doesn’t cut it. This I know. Except when you consider that she got THIS close, despite all odds, it’s something to consider. Meghan’s synthetic thyroid replacement is not working. It’s just not. At our last appointment we found out her TSH level – the Thyroid Stimulating hormone has increased by over 300% in 6 weeks. Post operatively it remained about a 10, it took a brief dip to 6, and then over a 6 week span increased to 20.5. ABNORMALLY HIGH is what it says on the lab report. That, combined with her low levels of T4 means that the work of the thyroid, that can not be done by the gland that was removed, is not being done by the medication, which has just short of doubled since February. The endocrinologist is baffled. I’m concerned, but not shocked. He agreed to research alternative medication, but he has, “never had to prescribe one before.” For those of you not thyroid patients, you are considered hypothyroid, once the TSH goes above 5. Most people feel human between 1 and 3. I function best when mine is .5. At 20.5 you would likely not find me out of my bed. You would certainly not find me at swim practice.
“Mind over matter,” we say.
“Everyone has something,” we say.
“Show the world you are better than Cowden’s Syndrome,” we say.
And she does. All the time.
On the way home we talked a lot. We talked about obstacles, and overcoming. She started to set goals.
And then, there was this text from her coaches.
“”Hi Mrs. Ortega. (We) just wanted to send you guys a text and let you know how proud we are of Meghan. She is such a pleasure to coach and is always looking for ways to improve and be her best. Swimming isn’t only about the times, it’s about the people and having the opportunity to create and share memories, good and bad. Meghan has so much drive, and goes through more than we can even imagine. She is truly amazing to go through everything she does and still push her body in the water. Today was just the first time. We know there will be plenty more opportunities for her to make cut times, and we know she will. She has limitless potential and we want her to know that. She is truly an amazing person, and we are lucky to be able to coach her.”
And in that moment, everything was OK. Coaches have this incredible power. They can motivate and heal and push in the same breath. They are gifted with selflessness like no other. My heart is grateful for these women who will continue to shape my daughter’s future. May they always know the impact they are having on a life full of bumps, twists, and turns.
It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011. Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!” That play on words stuck with her, and the ribbon gave her a good deal of connection at a time when we weren’t sure if we’d ever connect with another soul with “Cowden’s Syndrome.” The connection with the RARE Community at large carried us through those earliest days.
The end of 2011 and well, 2012, and… well, you get the idea… held some tumultuous times for our family.
Adjusting to the diagnosis was not easy. Finding balance within the labels, and the risks, and the screenings, and the surgeries, and the appointments was (and sometimes still is) a struggle. In the months when the diagnosis was at its newest, Meghan’s thyroid was called into question several times. We discovered nodules we never knew were there and learned the early risks of thyroid cancer were real, and ever-present.
She soon underwent the most horrendous of what would be 4 thyroid biopsies over the next 2 years. Scarred physically and emotionally, we began to wonder about this beast we were up against.
In February of 2012 Meghan had her 4th knee surgery for an AVM (arteriovenous malformation) in her right knee. Now convinced it’s stubborness could be credited to Cowden’s Syndrome, the fight to control it’s growth took on a whole new meaning, and we were referred for consultation to Boston Children’s Hospital.
While we balanced the screenings for Meghan, I was sent to my own set of initial screenings. Being 38 and newly diagnosed, I was in the battle full on, and I had had no idea. All the imminent cancer risks associated with Cowden’s Syndrome – except for the thyroid which often comes earlier – seem to peak right around 40. No stranger to doctors, I was trying to figure out how the diagnosis helped explain the roadmap that was my own medical history.
In March of 2012, I underwent what was to be a “prophylactic bilateral mastectomy,” to battle the 85% breast cancer risk I had with the PTEN mutation that caused Cowden’s Syndrome, and my own medical history which had already seen 7 increasingly suspicious breast biopsies. Seven days later, while having my drains removed, my husband and daughter sat in the room as the doctor announce it was a “good thing we moved when we did.” My left breast, the one that had never seen a scalpel, had 1 centimeter of DCIS, close to the nipple and clear of the chest wall. I had breast cancer. They found it by accident. My aggressive, intelligent surgeon, who I met because of my diagnosis, and really BECAUSE of my daughter had saved my life. I needed no treatment.
I left the room that day holding the two people I love more than anything. Unaware of the plans clearly in place for us, I was so filled with gratitude, and so in awe of the reality that if I had never had Meghan, I would have likely never known. And the surgeon’s words, “If we had waited till July like you had wanted, you would have been in a fight for your life,” still ring in my ears. Sometimes you have to stop the “what ifs?” and just say “thank you.”
Ten weeks later I was back in the hospital for a complete hysterectomy. A suspicious uterine polyp, enlarged ovaries, and Cowden’s Syndrome combined again for too great of a risk, and the recommendation was for surgery and quickly.
The shock on my body, the trauma to my family at this point was intense.
I had begun to scour the internet looking for places to go. I found http://www.PTENworld.com and its dynamic young moderator, a Cowden’s patient for many years. I found Facebook, and a beautiful support network there. I found a yahoo group, and a mom there who has consistently gone above and beyond for me, simply out of goodness. Finally, there were real people I could talk to.
One day that Spring I received a Pandora necklace with a pink ribbons on it. After years of advocating for my mother, a bilateral breast cancer survivor, holding the pink ribbons that belonged to me felt strange. Yet, so did the new boobs, smaller, but perkier than the old ones, and all the clothes I was learning no longer would fit quite right. So, I took comfort in that necklace and I wore it a lot.
And one day my very obsevant girl, who was 8 at the time, a few months shy of 9, asked me “What stands for me? The gold ribbon is for childhood cancer, the pink ribbon is for breast cancer, the puzzle piece is for autism. What about me? What about people like me who are dealing with this (Rare disease) every day? I NEED something mom. Not to have a thing, but for my identity.”
Stunned, as usual. I realized I had begun to heal myself, to seek comfort for myself, but I was leaving her behind.
So I happened to be retelling the story at lunch. And my teacher friend, whose husband is a jeweler, and who has a son with autism, really “got it” on so many levels. She told me she’d talk to her husband and see what was around. So I gave her a denim ribbon sticker from the Global Genes Project, and they were on a hunt. Which turned up nothing. There seemed to be no piece of jewelry worldwide to symbolize those with Rare Genetic Disorders. And, with there being over 7,000 RARE dieseases, accounting for almost 10% of the population, to us this was silly.
So my friend’s husband offered to make one. For Meghan. Because if she wanted a piece for her “identity” she should have one. So he did. It took months. And it was perfect. Absolutely perfect. And he was so generous in the donation of his time, all to light up my girl’s world.
August 2012
Typical Meghan, no less that 5 minutes after she put it on, she started with, “Wouldn’t it be great Mom, if these were available all over the world, and then we could see them when we went places, and we would know the people who have, or love people with RARE diseases?’ And the conversation continued to include asking me to reach out to The Global Genes Project to try and make it a reality.
Well two years have gone by. Felix and I each wear one too. Only 3 ever made. Until recently.
There have been lots of EMails exchanged. Lots of conversations. Lots of people. Ultimately they did decide to have the necklace made, and while the decision thrilled me, I would be lying if I said that I wasn’t disappointed that they couldn’t use our friend, the jeweler. But, business decisions are what they are, and this one was not in my control. And, despite that disappointment, Meghan’s dream, her vision, is becoming reality. We received 2 samples this week, and a “THANK YOU” from the team at Global Genes! The necklaces will be on sale through http://www.globalgenes.org in the fall!
Two years have gone by.
I have developed deeper, closer “long distance” relationships with some “kindred spirits” in the Cowden’s Community – globally!
My girl has some of her own friends with Cowden’s now, spread across the world. She will be 11 soon, and is quite the young lady. She understands life on levels deeper than she should. Most impressively she understands that despite our struggles, there are many in the world who struggle in heart, mind, body, and soul. She knows that “Everyone has SOMETHING!”
This past year she organized an assembly at our school. She worked with Student Council to arrange an evening fund raiser. She partnered with a friend in her own class who has a RARE Disease. We sold T-Shirts. We received intense support from faculty, and parents and students. Every child got a denim ribbon to wear for RARE Disease Day. We sent thousands of dollars to The Global Genes Project.
She has already begun to plan for next year, and wants a much bigger fund raiser. “At a place Mom.” We can really get the word out and raise money. For The Global Genes Project http://globalgenes.org/, and for the newly founded PTEN Hamartoma Tumor Syndrome Foundation http://www.ptenfoundation.org/, another organization close to our hearts.
She has a mind that never stops. She has the heart and voice of an advocate. And this year, she was nominated for the TEEN Advocacy Award at The Global Genes Project. (If you scroll down, the teens are close to the bottom.)
It was a few months ago. I can’t quite recall the date. It wasn’t my finest hour. (or day, or days…)
I was grumpy. Worried. Angry about the struggles my girl was being forced to endure. Twisted about a future of doctors appointments and surgeries.
I had noticed she seemed extra down, and I took it as my cue to worry harder.
At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.
But the answer wasn’t even close to what I expected.
“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”
Um, ouch. Wow. And she sure told me.
She wasn’t being disrespectful in the least. We have worked on honest speech and clear language, for survival – and to help us prep for the teen years. She was doing exactly what I asked of her. She was telling me what she was thinking. And she was right.
Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state. The “other shoe” has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl. I am her advocate. I am her voice. We have between us undergone at least 17 surgeries in the last 11 years. That doesn’t include countless hospital stays, tests and procedures. There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make. Life is very busy.
There was a time I used to walk for fun. Hours on end with my music in my ears. I would walk for miles. I would walk everywhere. There was a time I would read for fun. Not medical books. Just leisurely reading. I used to watch “Law and Order.”
Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.
To be quite honest with you, there isn’t much I would change. Do I sometimes miss those long carefree walks? Definitely. But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl? Not a chance.
We watched “Hook” a few months back. It was a rare occasion when I sat to watch a movie. It is one of my favorites. And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer. He forgot his magical youth, and the story takes him back to Neverland to find it again.
I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.
I thought and I thought, long after she had said the words. I was tempted to compare myself to other adults, and justify my grumpiness. But I resisted the urge. These words weren’t spoken to another adult. They were spoken to me. And what a gift she had given me.
Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.
I love to write. And so I have been trying to give more attention to my blog. Therapy on a keyboard.
I have taken my feet instead of the car wherever I can, and wherever time allows. I can’t walk for hours, but I can appreciate the short walks and relish them more.
I am realizing that a happy Mom is some of the best help I can give. I won’t know all the answers. I can only give her the same honesty I ask of her, and I can only do my best.
And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.
So we are all a work in progress.
And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.
I am constantly telling Meghan that Cowden’s Syndrome does not define us. But, in fairness, actions speak louder than words.
It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day. While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.
Meghan and Felix – they will always be my happiest thoughts.
But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…
I strongly encourage you to find your “Happy Thought.” It’s tough to start looking when a 10-year-old calls you out.
Loving my heart – outside my body- my biggest happy thought.
We have a short window of time from the point we meet someone to make an impression on them.
Think about it. It happens all the time. You pass by countless people, on line, in the grocery store, the receptionist at the doctor’s office… And often, within moments you either remember a rude interaction, or you forget that they even existed. The brain has to protect itself to some extent. We can’t remember everyone.
But then there are some people you can’t forget.
I met her in the jewelry store a few months back. I was buying a bracelet for my girl on a particularly tough day. We struck up an easy conversation. She was young, bright, and articulate. She was friendly. She asked about my daughter and I shared. I explained Cowden’s Syndrome and some of our most recent endeavors. Then she nonchalantly told me she was a cancer survivor. Melanoma she told me. She was 22. She told me she planned to be a teacher. I imagine she will be a great one when it’s time. At some point I brought up our trip to Disney, and how it might be time to take a break, and save some money. She told me – wise beyond her years – that the bills will always be there. Go. Enjoy.
Wednesday night I went into the jewelry store again. I struck up an easy conversation with another employee. I wanted to get a necklace repaired for Meghan. It had a “hope” ribbon and a spoon. She asked about it and I explained again about Cowden’s Syndrome, and the Spoon Theory. When she brought me the necklace she wouldn’t take any money. Instead, she offered me a “pay it forward” opportunity. She showed me a “gofundme” page on her iphone. She explained that this young girl, now 24, was battling stage 4 malignant melanoma, and if I felt so inclined, I could contribute there.
My heart began to race. I recognized this girl. She was the one, the cancer survivor who had helped me months prior. I asked a million questions, rapid fire. The kind woman answered them. I was stunned. A melanoma survivor, she found a lump a few months ago, which led to a CT and PET scan, and the determination that the melanoma had spread. There will be treatment. She is tough. She will fight.
24 years old.
My sister is 25. My brother is 25. My cousins are right about that age. They are all at various points of setting up their lives, not fighting for them.
She could have been anyone. This girl in the jewelry store. But she was dynamic. Because apparently that is who she is. She is the person that sticks with you.
And if you are so inclined, do what you can to help.
That is a conversation Meghan and I have all the time.
Life is not easy. It is often unfair. Frequently she feels like crap, and always she seems to hurt.
Yet, I tell her all the time, you have a short window where people will make a judgement about you. It’s not fair either, but it’s true.
And when you live your life chronically ill and/or in pain, you may sometimes feel like you have to lie.
But I am helping her find the balance. Ways that she can still be honest about what she’s going through, and say what she means, with an upbeat delivery.
Meghan has been blessed with a beautiful elementary school experience that spanned 6 years and 2 schools. And although we elected to change schools at the very end of fourth grade, she can reflect and see the positive experiences gained in both places. It seems everything happened as it should.
And in third grade, one of the roughest years of her life, she was met with one of the most compassionate women I will ever know. A gifted teacher who cared so much more about the child than the curriculum. And this year, when there was loss, deep loss, and surgery, and more major struggles there were several excellent women in her path as educators, and sources of strength. And again, there was one with a sick child of her own, who just “got it” from the beginning. My gratitude knows no limits.
Today we sat for a beautiful moving up ceremony. Everything was perfect. The length and content of the ceremony carried out through the careful precision of true professionals. The children were calm and well-behaved. Everything was smooth. They all made it look easy, but I know all too well that its not.
Thirty years ago I walked across that same stage. Today a lot of things came full circle, and after 17 plus years of teaching in my school, I sat in the seat of a parent, and I could not have been more proud.
She received two medals for school service, and she was beaming. Then they called her name for the “Portrait in Courage” Award. And the tears flowed. Mine – not hers. So touched by the time it took to match my child with an award that was a perfect fit.
See I always knew she had courage. And I think most people who meet her would never deny it. But lately, struggling with the pain, there have been some dark days.
So we talk alot. And I hope and pray that my words get through.
I tell her what a gift she has, that people view her has positive, and courageous. I tell her that just because I happened to agree doesn’t mean the responsibility ends there. When people view you this way, they look to you. They feed off of your energy. You inspire them to be better people.
It doesn’t mean you have to be positive all the time, because we all have our days – but it means most of your work has to be upbeat.
Today she hurt. As she always does. And I could see it. But she never said it. Tonight I felt her knee, and that all too familiar pulsing seems to be finding its way back. She asks me not to hug her. Especially in the morning – because my touch hurts. There are dark circles under her eyes. But we went out all day today, as a family. And she was amazing.
She held that plaque in her purse. She wore her medals. She smiled. She looked people in the eye. She spoke. She lit up rooms.
Danielle, from the beginning of my story, has never met Meghan. Yet to me there are so many similarities. I told Meghan all about her. She gets it. She gets a lot of things. And as I struggle to help her find the gentle balance at 10 years old, of being positive and honest – I see role models for her in our small community.
“Portrait of Courage” indeed. As her teacher said, she has endured more in her first decade of life than most, and is a force to be reckoned with.
For Meghan, for Danielle, and for the others who we cross paths with every day – you inspire. You lead by example. You ARE changing the world.
It’s been a while since I’ve written. If I have my way I’m about to get so focused that you’ll get tired of hearing from me.
Life has become a bit overwhelming. And some days all of this, this whole chronic illness thing, is just too much to handle.
There are days the path looks like this.
There are days when it is easy to wonder, “What now?” or, “What next?”
But that is the very mindset that can find us in a heap of trouble.
So we are trying to work on shifting our focus. Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.
We all need a bridge, a support system of sorts.
With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.
I don’t talk too much about me. Mostly because as any Mom, my needs are second to those of my girl. But, I too get overwhelmed. And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.
I am more than the paperwork and medical records. I am more than the bills and prescriptions. I am more than the scheduling and the appointments. I am more than the mastectomy scars. I am more than the synthetic thyroid hormone.
I am a mom.
I am a wife.
I am a friend.
I am a Christian.
I am a teacher.
I like music. I like reading John Grisham. I enjoy Law and Order. I like to laugh. I CAN’T get by without my Isagenix, and my Ionix. I appreciate photography, and I really, really like to sleep.
And with each piece of my identity, the pieces of my foundation get stronger.
There are things I have to do as a person with Cowden’s Syndrome. There are things I have to endure. There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime. But if I am honest – isn’t that what life really is – for everyone? While the issues may not always be medical, the reality is that despite our best efforts, we have no control. So, we do “the best we can with what we have where we are.”
And as I get my foundation in place. As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.
I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.
We will forever do outreach work. We will forever share our story. We will forever create fund-raising opportunities for research. That will be part of our lives. Cowden’s Syndrome will be part of our lives. But it will not BE our lives.
My daughter has seen more in 10 and a half years than most adults see in a life time. She has been medically poked, prodded, and cut. She has been in and out of hospitals. She has seen doctors hired and fired. She has been listened to and she has been ignored. She has had arteries ablated, and a body parts removed. She has vomited pure bile from a stomach torn apart from pain medicine. And she has pushed each day through that pain. She tries to be like the other fifth graders, but she struggles. She struggles to be understood and to fit in.
But, from my stones, my own developing identity, I can see her clearly. Perhaps more clearly than she sees herself some days.
I don’t profess to know all things. She’s a bright preteen. There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.
What I see when I look at Meghan is not Cowden’s Syndrome.
I see a beautiful smile. I see a kind heart. I see compassion. I see love. I see competitiveness. I see a swimmer. I see a singer. I see a reader. I see someone who loves to play hard, and relax just as hard. I see raw determination. I see high standards. I see someone, a young woman who makes me proud to be her mom.
This summer we are going to work on building. I want to be able to provide her stepping-stones. And then I want to help her build her bridge, with a healthy mix of guidance and independence.
I want her to see she has Cowden’s Syndrome, but it does not have her. It is an inconvenient part of our lives – but not our entire lives.
We are going to make memories. We are going to create situations that have nothing to do with doctors or hospitals. We are going to laugh and play. We are going to continue to “Live Deliberately.”
And we are going to write it down. It sounds so silly to think that we have to write down having time for fun, but we do – for now. Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.
It’s not going to happen all at once. There will be days we have to remind each other. But, we will get there.
And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.
Because as we become empowered, we will be rid of the others. Positive influences only. We deserve that.
She made swim practice tonight. No small feat.
The pain – evident, but managed.
Endocrinology consult Thursday.
Hopeful.
A balanced thyroid certainly would help a few (dozen) things…
From time to time, as I am working hard to get out of my own way, the words of Henry David Thoreau creep into my subconscious.
Live deliberately. On purpose. With a purpose. With goals. With faith. With belief that it all matters. Not just in this world, but in eternity.
There are countless things in this life that are running out of control.
Last week in church, I held the hand of a woman who is trying to establish her life here in the United States while her family originates half a world away. I know very little about her, but I cried with her as she was enduring the loss of 6 family members who had all died in a car accident. Out of her control. Immeasurable pain. No words. Just prayer that she arrive safely to be with her remaining family.
Then there is my internet friend in Australia, whose daughter has endured more brain surgeries than I can count. This week things went badly. The surgery was aborted. They had to make a new plan. Her daughter- beautiful, 20ish, and full of life.
And another story I follow closely, of an acquaintance whose mom became septic in December after routine surgery. The trials cause my heart to ache.
We could all list stories here. Heck, I could go on for pages, the old friend whose brother is battling cancer… and so on.
I could fill this page with the struggles of my daughter this week. Battling the demon that is Cowden’s Syndrome – and whatever else has crept into her body to accompany it. I could write about the nights spent holding, and wishing, and praying that the pain be gone, or that God help us make some sense of her agony. I could continue in frustration about the thyroid hormones all askew. And the general lack of knowledge that greets us at most facilities. But I won’t. At least not today.
Today I am reflective about Thoreau’s words. Today I am thinking about what it means to live deliberately.
I can not control tragedy.
I can not control pain.
I can not control sickness.
I can not control sadness.
I can not control life’s twists and turns.
I can not control the course of Cowden’s Syndrome or any other aspect of our lives.
No matter how badly I want to. I can’t.
And, I also can’t make sense of most of it.
So, I have a choice.
I can sit here and mull it over. I can feel everyone’s hurt and pain. I can reflect on the unfairness of it all – or I can live deliberately.
I choose to hug my husband. Because I don’t do that enough.
I choose to rub a dog’s belly. Because it’s good for both of us.
I choose to eat well, and get and stay as healthy as I can.
I choose to be involved in passionately sharing my love for good nutrition and the products helping me find it.
I choose to take a deep breath when I am stuck in traffic.
I choose to deliberately try and turn lemons into lemonade.
I choose to use my grief over the loss of my loved ones, and channel my energy into the most positive outlets I can find.
I choose to get involved in raising awareness – of Cowden’s Syndrome and other RARE diseases.
I choose to get involved in things I feel passionate about, and not in things that bring me down.
I choose to advocate tirelessly for my daughter, and any other that I can help along the way.
I choose to always make sure I have an extra spoon for my daughter – or a friend in need.
I choose to laugh – at myself as needed!
I choose to pray.
I choose to be a friend.
Because to live deliberately doesn’t mean life will be easy. It doesn’t mean life will go well, or the way we want it to. It means making a choice to find what you can, dig deeply for the beauty that is abundant in the joys, but also hiding in the sorrows.
To live deliberately doesn’t mean I won’t be sad, or mad. It means I will have ALL the feelings – on purpose. Because to truly appreciate life I must experience all things.
I choose to do one thing I enjoy every single day.
Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.
We all slept. Late. All three of us. I mean 10:00. A good sign that we – all three- are shot.
I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk. And she was sensitive to the touch, so it was even hard to rub her. But everything is a little better at 10 AM.
And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills. I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.
meghanleigh8903.isagenix.com
And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.
Because we got home, and then Felix made lunch. I stayed home with Meghan and her “better but not gone” stomach pain.
After that he took the working car to get the wood for the deck railing that has completely rotted out.
No one can really explain that – but we are kind of used to it.
The deck – pressure treated wood – was put together between 2000 and 2004. By all accounts it is falling apart. And its not from faulty construction. The base is solid. The center is stable. But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting. Maybe it’s too much sun. Maybe it’s a stain product we used early in its life. It really doesn’t matter. It’s done and has to go on the budget list for a full replacement in the near future. But for now we patch.
Triage.
The bay window wins. Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely. The entire window – hole in the house and all – needs to be replaced.
So while Felix was getting the wood, he priced the window Tonight we have to do some comparison work. Then the order has to go in.
But this afternoon I sat still. For a few hours. And I really, really, really liked it.
It’s easy to feel guilty. That there are things that need doing. There are people who could use our help. And there are people who need to be visited. And there are phone calls that need to be made. But, last week my Mom told me if I didn’t take some time for myself I might lose my mind. She’s right. Although I could say the same to her, and most people I know. It’s hard for any of us to just stop and sit still.
I haven’t written since Monday. The arrogance I encountered that day kept me stewing for most of the week. And… I don’t think I’m over it yet. But I wanted to pull my thoughts together and go at it with a clear head. But if I keep waiting for a clear head I may have to stop writing forever. Because the pain my child endures – regularly- is horrendous and worsening.
If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared. The good, the bad, and the arrogant.
A friend who endures more than her share of struggles with her children placed this on my wall this week. I can’t tell you how many times I laughed out loud.
Tuesday I called the surgeon’s office after school to inquire about the sonogram. He spoke to me – to tell me that there is absolutely nothing wrong with her neck.
Insert sigh of relief here, right?
So I said thank you, and requested a copy of the report. It was to be emailed to me within 10 minutes.
And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report. You see, the local sonogram bothered the surgeon. So when we went to have it done I watched the screen like the hawk I am. I watched every measurement, every angle for 30 minutes. I SAW the exact dimensions from the local sonogram recorded. And yet the report was the most incomplete one I have ever seen. It simply said “normal” several times. It was contained on one sheet of paper, unlike the three I had become used to.
I wanted to be relieved so badly. I wanted to take a breath and say “whew!”
But I feel the lump in her neck. And she feels it.
What I needed was a doctor to say, “It’s there and it’s fine.” THAT would have been OK. THAT would have settled me down. But, to say it’s NOT there…. THAT leaves me with a whole other set of unsettled nerves.
And then the phone rang. Again. And it was the surgeon’s office. His secretary told me we needed to go back for a follow up. I was stunned. And perplexed.
Why a follow up? He just told me everything was fine!
The doctor just wants to see her one more time before the summer.
This from the same surgeon who three visits ago NEVER wanted to see us again.
So I set the appointment for June 16th. And I wondered really what I am supposed to think.
So I got the number for medical records and I got a CD of that exam placed on CD.
I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.
And this isn’t even the pressing problem right now. Or at least we don’t think so.
The next set of thyroid labs are going to be next week. We need to see if this new dose is making ANY difference in her thyroid hormone. If it is, well great. And if it isn’t… someone needs to start figuring out what’s going on.
There is pain. All the time. Terrible pain. Worse when she wakes up. And, when she tries to walk, up the stairs. Or down. Or if she tries to lift something. Or bend to pet the dogs. Or run. She made it through 18 minutes of swim practice on Weds. Then I had to help her get dressed.
The pain varies in intensity. But it doesn’t leave. And she is frustrated. And frightened.
Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever. I can handle this pain a bit longer, but you NEED to help me. I CAN NOT do this forever.”
No pressure.
I get it Meg. I get it. I don’t really get your pain. But I get the urgency. I am all over it. Trust me.
But that kind of pressure will wipe you out.
The GI on Weds. was happy with her progress. The pathology showed cellular changes all through the GI tract. She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it. She gave us the “reflux” diet. She reviewed medication and supplements. She made sure I have an ENT appointment – for June 3rd. She things the upper esophageal damage is caused by a chronic post nasal drip. And maybe “fingers crossed,” that will be the throat clearing too. Because if not there is another diet – with more restrictions on the horizon. But we can’t race. We will see her in the beginning of July. We are clear on the directions. Especially the one that said, “no pain medicine by mouth.” The damage done by 4 years of NSAIDs will take months to reverse. If we are lucky. Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.
That doesn’t leave a whole lot of options.
So from 200mg a day of a strong NSAID to nothing…
I ordered some herbs. Some that have anti inflammatory properties. I have read and researched them and have sold them to her as the best thing since Celebrex. They will be here tomorrow. Let’s all pray I am right.
Some people think she exaggerates, because there are glimmers of smiles. There are times when she laughs. There are people who want her to feel better just because time has passed. Trust me no one wants this more than her parents.
I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all. We are isolated. Family and friends alike are often unaware of what to say, or do. We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear. We are lucky, fortunate, blessed, to have each other. We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.
I needed today. I did random things like taking the 5 gigs of pictures and video off the iPhone. I uploaded them to shutterfly. I combined them with the family photos and I placed the first print order since August of 2012. We are up to August of 2013 now. You see I used to be all over this kind of thing. But life… it gets in the way.
And the nicest part about today was looking at the memories. The smiles. The happy times in those photos. You see today I needed to be reminded…
And that is what today was about.
Because next week there is Field Day, with prayers that there can be mobility by then. And next week there is blood work. And next week there is swim practice, and so many things that we want to go very, very well.
“Rocking Roller Coaster!” she declared.
beatingcowdens 