Tag: worry

“It Doesn’t Suck”

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“Thank you…” That’s how she led at 6:30 on a Saturday morning, when I picked her up 140 miles from home so she could squeeze in a uterine biopsy on the weekend, so as not to miss any class her first week of PA School.

“Thank you…” How many 21 year olds lead with that? Nothing to eat or drink. Half asleep. Headed to ANOTHER procedure which would require ANOTHER IV into a vein literally EXHAUSTED from overuse.

She spent a few minutes telling me about her Friday night out with her new classmates before falling asleep. “It doesn’t suck.” This was absolute music to my ears.

Anyone who doesn’t know Meghan, and hasn’t followed her story, and even some who think they know her, but haven’t really been paying attention, might think that describing her first week of classes as a graduate student by saying “It doesn’t suck,” is negative, pessimistic, or a bad attitude. But to me, who has been paying the closest attention, knowing the reality that virtually every school experience has “sucked,” this was music to my ears.

No point in going backwards to the countless times when she was belittled, ostracized, tormented, and tortured. She was never perfect, and she never claimed to be. But years of therapy have taught her not to shrink herself down to fit into anyone else’s box. I don’t know why many kids found her unlikeable. But she knew it. Always. And the ones who didn’t mind her were typically too afraid to speak up. “It doesn’t suck…” cautious optimism. I’ll take it!

I had 5 hours in the roundtrip between home and her school to reflect on this kid. And I have to tell you, I’m so proud of her sometimes I feel like I could burst.

Don’t get me wrong. The years of social isolation have been daunting and exhausting. But, they have given her wisdom and patience well beyond her years. She has gained confidence. She is insightful. She is capable of telling you her weaknesses right alongside her strengths. She is transparent, and straightforward. You never doubt where you stand. She is passionate, loyal and driven. She is resilient.

Writing has been hard for me these last few years. I feel like we mark time in between surgeries, rehab, appointments, tests, and more surgery. I have withdrawn from almost every relationship I have because most people seem exhausted by our chronic cycle and I have grown weary of apologizing for our reality.

Meghan’s tumor in her right thigh took up most of her high school and college years. ’19, ’22, ’23, and with the ultimate torture in the summer of ’24, she became a regular at PT during the years when kids her age were debating which party was better. A mere six months after the worst surgery by far, our New Year’s Eve was spent at NYU in recovery from her bilateral mastectomy. Which, in case you wanted a reference, she said was so much easier than the leg surgery. Well, pain wise anyway… but, I digress.

We are living inside of 2 PTEN mutated bodies with all the trials and tribulations that come with them. My own scans continue. Battles with insurance and radiology alike are the rule, not the exception. In the last 6 months two of our primary providers left their practices and the job of “training” a new doctor begins again.

Pride. Focus. Determination. Dedication.

Meghan and Ella graduated from Misericordia in May. Then, the difficult decision was made that retirement was in Ella’s best interest. Selflessly she put her best friend and closest companion ahead of herself. Again.

Ella is slowly transitioning to retired life with her “brothers.”

She left in early June, a year after that leg surgery that still has me traumatized. She walked away from me with her passport in hand, and traveled 2,500 miles to meet the one friend she will keep forever from her undergrad. They met in Vancouver and they had a 2 week adventure that included activities she had never even dreamed of being able to accomplish. She paid her own way with gifts carefully saved through her entire life. She is a traveler in her soul. This was the first of many journeys that passport will see.

We squeezed in a ton of appointments at the end of June, including beginning to “train” our new endocrinologist. One of the appointments was a pelvic ultrasound. She has had them frequently since her “endometrial hyperplasia” in 2015. And when the report popped into her chart that Friday afternoon – we knew it was going to need follow up.

Her gynecologist is just an utterly superb woman, who trusted me with her cell phone number at our first visit. I texted her and alerted her. She found the report, and we were scheduled to see her July 3rd. Classes started July 7th. Because.. why not?

Her biopsy was Saturday. I stayed with her until the IV was placed and we met up again in recovery. It is a dance so familiar to us that in and of itself it’s unsettling.

We don’t have results yet. But I am tired of waiting. I’m tired of waiting for the next thing to be finished before continuing our story.

This is an ongoing saga. PTEN mutations do not get “fixed.” We may find some lulls along the way, but waiting is so much a part of this life.

Meghan took this at a butterfly exhibit in NYC with her dad, on her grandfather’s camera. I thought the busted wing on this blue beauty was epic.

Meghan walked out of the procedure, stopped, looked me in the eye, and thanked me. Again. I told her to stop, and she said no. “I’m so happy I didn’t miss Friday night, because of that uncomfortable Saturday.”

Maybe that’s the lesson. Don’t miss Friday because Saturday holds a daunting reality.

Two 300 mile round trips in 18 hours. She didn’t skip a beat and was right on time for classes today where she belongs.

Here’s to hoping “It doesn’t suck” continues to transition…

#beatingcowdens

Rare Disease Day 2025

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This is technically our 14th “Rare Disease Day,” since our PTEN diagnoses came in the fall of 2011, but if I am fair, the entirety of 2012 was such a blur that I feel like this is more like the 13th year we were consciously aware that “Rare Disease Day” is annually celebrated on the last day in February.

If you search the files of this blog you will find that in 2014 we did some Rare Disease outreach at my school, and in February of 2015, 2016 and 2017 we held successful fundraisers for the PTEN foundation that supports our own rare disease PTEN Hamartoma Tumor Syndrome, or Cowden Syndrome as it is often called.

We ran one more fundraiser in October of 2018. Then we stopped hosting.

It was not for lack of desire. But, rather for the difficulty that came with filling the room. Rare Diseases, if you are lucky, (yes, read that again) are also chronic. And people have lives and experiences and other things to tend to besides annual events for what was going to be a fact of our lives.

And, truth be told at an average of one or more surgeries each year, things got tricky to manage on our end too.

“Let us know if we can help,” became a most cringeworthy phrase as I retreated into a deep hole of survival, fight or flight, and often downright depression. How could I pick up a phone if I sometimes struggled to pick up my head? And could I expect people to keep showing up when the story was the same? The times in between surgeries were sometimes even worse. The anticipation of an appointment. The worry about the next scan. I often didn’t want to hear me speak.

Tumor, surgery, pain, isolation, therapy, recovery. All heavy. All the time.

It’s been over 6 years since that last fundraiser. I sometimes feel guilty. Then I force myself to feel proud of what we were able to do when we could.

More times than not this journey has felt like climbing one of those rock walls. Except a real one. Where hanging on was literally for dear life, and the harness was hard to find.

This last year has tested Meghan and I, and Felix as well. It has tested relationships in all of our lives. Her surgery in June of 2024, well documented here was by far the one that was the most traumatic for me. If I close my eyes at just the wrong time I can still hear her screaming during the longest hospital stay in over a decade. The physical pain has been hers to manage, and she does so in ways that consistently blow me away. The emotional pain, of watching your child suffer… that one is a special kind of hell. If you know, you know. And if you don’t, I will never wish it on you.

The double mastectomy, just barely 2 months ago, was well documented as a necessary move on that 9 page pathology report. PTEN patients have a 91% lifetime occurrence of breast cancer, and my PTEN kiddo was able to couple that risk with 2 first degree relatives, her grandmother at 48, and her mother at 38. My daughter is a smart, focused, brave, and driven woman. This one is a different kind of recovery, one where the physical pain is less but the emotional upheaval of adjusting to your new body at the age of 21 is very real. Scars take time to go down. Things take time to settle. But, waiting in and of itself can be torture.

Ours is just one PTEN story, of the 1 in 200,000 people across the globe diagnosed with a PTEN mutation and the effects of the mutation in each body run a wide gamut. Rare diseases are generally underserved because studying us is time consuming. Massive cuts are a reality and we are not a priority. The PTEN family lost our brightest advocate Dr. Charis Eng in August of 2024 and all of the PTEN foundations across the globe despite obstacles, continue to press on with urgency, in her honor and for the betterment of us all.

Ours is just one rare disease story. You know people with rare diseases. You may even be one of them. I have learned more about rare diseases since our diagnoses. I know the names of syndromes, and most importantly the people behind the stories.

This year on Rare Disease Day, when we are asked to #ShowYourStripes, tell your story. And, if you don’t have a story to tell, reach out and let someone tell theirs.

Alone we are rare. Together we are 300 MILLION strong. And we matter.

#beatingcowdens

Just Let Me Know if I Can Do Anything….

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Spoiler alert…

If they are messed up enough from something, a loss, a trauma, or literally ANYTHING that prompts you to ask that question, they are likely INCAPABLE of figuring out what they need, let alone asking you to do it.

My advice to you – SHOW UP.

My further advice is if you are not prepared to listen, sometimes to heavy things, or if you are not prepared to leave your judgment behind, and support them, KEEP GOING. When you offer to do ANYTHING, many times it will not be a THING. Many times it will be letting them talk out their pain, anger, grief, recovery, fear, difficult decision…etc.

But if you truly want to show up, and are prepared that they may actually reply in a way that requires you to do so, then I offer these examples of showing up in increasing levels of challenging in case you like to start small:

*When you are checking on someone, whenever possible, check DIRECTLY on them. Use their own cell phone. Text them. Call them. Checking on someone by proxy may be easier for you, but it’s not helpful to the person suffering.

  • Text. Even If you don’t know what to say. Text anyway. There a million cute emojis that can signal to a human that they are on your mind. Don’t assume they know. Again, if you were prompted to make the statement above, they are in a whirlwind of pain. They literally can’t tell you what they need. Except knowing you’re thinking of them helps. And they can’t know without you reaching out because they are not psychic. One. Single. Emoji. Counts.
  • Text words. Even if you don’t know what to say, but you are more daring than the emoji only suggestion above, use words. Simple words. I’m thinking of you. I hope you see a pretty flower today. You are loved. Or any variation of the above.
  • Text invitations for them. This gets a little trickier because you may have to try a few times. But, “Hey, I’m free for a few, do you want to vent?” Or “Feel like chatting? I can call.” Or, if you live close, “I’d love to pick you up and take you for an ice cream, cup of coffee, loud scream in the park, swing on the swings….” etc. are all good suggestions. These invitations make someone feel valuable, and not pressured. They make them feel like they are on your mind and worth your time. They are currently doubting this while feeling like they are “too much” for human contact and worried that they will drag you down into their abyss.
  • Call them. Now to some this is terrifying, but here is a spoiler alert. Cell phones make it easy to bypass calls that come at difficult times. So if you call them, and they can’t talk, leave them a voicemail telling them they are on your mind, and invite them to call or text you. Hearing your voice may be just what they need.
  • Offer to meet them. Doing something they like. On terms that are good for both of you. Maybe a walk in the park. (Someone did that for me last week and it was so amazingly helpful. 🙂 )Anything that no one feels cornered by works
  • Stop by. Yep, it might seem freaky in this age of minimal contact, but try it. Showing up in person to just sit with someone in their pain is amazingly therapeutic, and might make you feel good too. And when you stop by, be content to sit in a messy, chaotic space and need only a glass of water.

They likely do not want an opinion or a suggestion, or a platitude. If you feel compelled to give those… you may want to refer to paragraph 4 above the picture.

They may never choose to offload their burden, or they may do it repeatedly. I have found once you allow the “elephant” to sit in the room with you, and you acknowledge it is there it becomes an understood, albeit unwanted guest. But only once you have offered that “elephant” a spot in the room, and acknowledged that you see it, can things move forward. At that point, topics change for a time, and sometimes people even laugh. It’s incredible. And when the person needs you again it is so much easier, because they know the “elephant” a bit. They know it is there. No one needs to start from zero again.

If you have truly decided to show up, then whatever way you decide to show up. Do it. Don’t make yourself feel better by saying “I didn’t want to bother them.” They’re bothered. Their life is in turmoil. Your caring will not make them feel worse. I can almost guarantee it.

The older I get the less I understand social dynamics, and the more of a recluse I become.

I am pretty in touch with real life. I am totally aware that other people have epic chaos in their lives. As a matter of fact I would dare to say, when given the chance, I am a pretty good listener. To be honest, I enjoy the opportunity to listen because it means someone cares enough to share their life with me. But chronic illnesses are, well, CHRONIC. Genetic disorders are FOREVER. And I am finding that people, the same ones who can be so supportive in the moment, experience fatigue over the CHRONIC nature of Cowden’s Syndrome. I mean, there’s a pretty good chance every time you speak to Meghan or I there is a new chapter in the life of medical drama.

Sometimes we want to talk about it. Sometimes we want to ignore it. Sometimes we want to sit under a table in a dark room and cry. Sometimes we want to scream. Sometimes we are sad. Sometimes we are scared. Sometimes it’s an ugly combination of all of the above.

Most of the time we feel lonely and isolated.

Yet, we dust off and keep moving forward. Not in a quest for a medal or accolades, but with the fervent desire to do what we can to live the life we’ve been given to the best of our ability in these often faulty bodies.

A screening scan in August that was less than stellar tipped off a lengthy week in October that will bridge to another surgery for Meghan in January.

One day soon we will share more about it.

But for today I will leave this here…

Whether you are reading this because you know us, or this found its way into your path because you have someone in your life to whom you have said “Just let me know if I can do anything…,” please show up for them. In some way, shape, or form, show up.

I hate a lot of things about cell phones. I love the ease with which we can show up for each other.

Never in the history of text messaging have I seen or heard of someone who felt angry or sad that someone checked in on them.

In this age of disconnectedness… SHOW UP….

#beatingcowdens

Have you had any surgeries?

Published on by beatingcowdens4 Comments

It’s an actual question people ask. And I guess it is a fair question for most people. But, we aren’t most people. We are 1 in 200,000 tumor growing Cowden’s Syndrome people.

The question makes everyone in the room uncomfortable because when they start to realize the over 20 surgeries for my girl alone will NEVER fit on the three lines they allow, they ask me to prioritize. But, I have. And the are all important. I even print them out so they don’t have to rewrite them.

It’s like the medication question. Yep. There are a bunch. Yep. They all have value. Yep. They all have side effects. Good for you that you have never even taken a Tylenol. God Bless you and your healthy pain free body. But be careful not to imply that it is even a choice not to control the unrelenting pain somehow. I mean, you want us to behave like decent humans right? Because you can’t have us pleasant and medication free, If you want to be sure maybe we can place a giant tumor on your sciatic nerve. Or let you contend with the after effects of a high flow AVM in your knee, and the shifted patella, or in my case a boatload of hemangiomas on your spleen, and bodies that are just off sides 24/7/365.

I wonder how people would react if I started asking the same question of them…. “What do you mean you haven’t had ANY surgeries?” People find our lives odd. They like to throw well intentioned platitudes. “Is she better now?” “Is it fixed?” “She’s so strong.”

Yep. We’re strong. The weight is heavy. Oppressive at times. The trauma is real and ever present. And to the well intentioned “You should see a therapist…” yep, we’ve got it thanks.

But, no. It’s not “fixed.” It’ll never be fixed because the broken PTEN gene proliferates every cell of our bodies. It has taken a toll on our bodies, and will continue to do so. Active surveillance for cancers and tumors that are flat out likely to grow and show up is just our reality.

It has taken a toll on our spirits. Differently, yet a significant toll on both of us. We are a lot. Chronic issues make even the most well intentioned people uncomfortable. Pain changes you. Trauma changes you.

This life can be so lonely. It is hard to relate to experiences and people when your reality makes most uncomfortable. The isolation becomes easier to manage than the abandonment.

We are a lot.

We are often defensive. Being left behind so often will do that. Being judged too early and too often will do that too.

I think today as I wait for a surgical update I am just tired.

We arrived at 5:30 at 7:30 they rolled her away from me.

Our hopes and dreams right now rest on the resection of her thigh muscle to remove a tumor situated somewhere between her femur and her sciatic nerve.

As I sit here with Ella her service dog, praying and waiting, I can’t help but choose hope.

This girl, well woman, is a force to be reckoned with. The number of appointments she has crammed into the last 3 week is ridiculous. She’s taking an EMT class 12 hours a week with her dearest friend, and took the GRE for the second time at 9:30 PM LAST NIGHT, then submitted 6 applications to physician assistant programs for next fall before closing her eyes for about 2 hours.

She is so determined to overcome all the chaos that has been her life and do BETTER for other that she inspires me.

Join me in HOPE and prayer for the successful removal of this tumor with complete and total nerve function in tact.

Because, What if it all works out?

#beaitngcowdens

A few photos from our pre-op selfie tradition this AM…

Dark Days/Finding the Light

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I am a March-August kind of girl. I love warm weather and lots of sunlight. Long walks are my favorite. There is nothing that soothes me more than putting on a pair of sneakers, putting my music on, and just going.

I find the fall stressful. Maybe it’s years of being a teacher. There is hopeful anticipation about school in September, but the organization and logistics take forever, and the fall germs are just… a lot.

Before I have time to look up, the days are getting shorter, the leaves are falling, and it is time to pull out the sweaters.

I go through the motions dutifully, cleaning and organizing, but I lack the excited anticipation people have when they smell pumpkin spice and start to see their breath. I just don’t get it.

I think I was always this way, but in fairness, so many emotional events in the fall and winter may have given me the final shove into my aversion for those seasons and bolstered my affinity for my spring allergies.

Given all that, it might seem contrary to say that we decorate early for Christmas, but we do.

Remember, I love the light.

Our tree is up by Thanksgiving, and the lights around the house are on every possible second. I love buying and wrapping gifts. I take comfort in our advent calendar and the excitement of the impending arrival of the baby Jesus.

My faith anchors me through the tumultuous turns life tends to take. It keeps me grounded and focused on the fact that this life is merely a stopping point on a journey to forever.

I grew up in a church. I spent so much of my life there as a child, and a teen that I could navigate the building with my eyes closed. I stayed at that same church after my husband and I met, and it was there that we married and had our daughter baptized.

And as ironic as it is, it is the place I had to walk away from when our worlds got turned upside down with all things PTEN and Cowdens Syndrome. I had to walk away from the place to continue to nurture my faith.

When you grow up in a community of faith, it is hard to accept that reality. I miss weekly services, Angel Trees, and Christmas shows. And sometimes that disconnect can make the dark days extra hard. Yet, in the apparent contradiction that is often reality, my faith has continued to grow through the years.

So, this morning my new normal involved my air pods, my iPad, and my orchids.

Today I “went” to church in Buffalo and in Sarasota, and I never left my house. I sang and prayed and smiled and pondered through Western New York Church Unleashed, and Faith Lutheran Church in Sarasota, Florida. The pastors are comforting and familiar, especially Eric, my brother-in-law in Florida, and also Roger, Jeremiah, and Steve in Western New York whom I have never met. The same internet which often isolates us from each other, keeps me connected to my faith through Advent and beyond.

I took some time with my orchids. My beautiful, perfectly imperfect orchids, that I feel a strong kinship with. Somehow, despite the odds, and without any traditional interventions, they blossom and grow in the most amazing ways.

I spend too much time alone and find it easy to be lost in, and overwhelmed by my own thoughts. Cowden Syndrome is ever present in our minds and bodies, even when the medical drama is on “pause.” The anxiety and anticipation of a lifetime of justifiable worry can make so many things, just hard.

Today I was reminded to give thanks in all circumstances. I was reminded to pray without ceasing, and I was told that you can have joy in your heart, even when you are not happy. 

Life is a contradiction. Emotions yield guilt way too often. But, I have learned that feeling all the feelings is the only way I will survive and thrive in this crazy life.

I do not like the winter. I will never enjoy the darkness. I love the lights of Christmas and I eagerly await the birth of the baby Jesus.

I promise to stop and smell the “orchids” while anxiously waiting for the first sneezes of spring.

Wishing you and yours peace throughout this season.

#beatingcowdens

Ella, Buddy, and Jax bring us so much joy…

The Rain…

Published on by beatingcowdens1 Comment

I walk past a sign in my hallway regularly. It has the familiar phrase, “Life is not about waiting for the storm to pass, it’s about learning to dance in the rain.”

I think about other cliche phrases like, “Into every life, some rain must fall,” or, “You can’t have a rainbow without a little rain.”

And I picture a mom and a daughter in their rain boots, splashing and laughing with a rainbow peeking through the clouds.

Then I retreat further into my corner, chastising myself for even being a failure at that.

I am a rational person. I am numbers, data, and spreadsheets all day. I understand the gravity of world events. I comprehend and ache for epic loss, severe illness, and struggles right around the block. I have gratitude for abundant blessings. I adore my husband. I am watching my daughter flourish on her own at college. I believe in God, and have faith that we are in a resting place on the journey to eternal life.

Yet, I struggle.

And as I have mentioned so many times before, the reality of “parallel truths” sometimes aches in the depths of my soul.

The rain, right now, feels more like a neverending storm cloud. Some days I do not see the sun at all, even when I know it is shining brightly. And I mean that literally and metaphorically.

I have always been one to keep it real. Especially here. I want a mom who finds this page for the first time, soon after a diagnosis like ours to feel there is hope. There are kindred spirits along the road they are about to get on. Yet, I will not ever lie to them. They already know the truth in their hearts. This is not an easy journey.

It took a long while to rid my daily encounters of those who are prone to “toxic positivity.” As I said before, I am acutely aware the blessings of this disease come from the “warning flares” we get along the way. And as I watch others suffer from cancers they did not see coming, I give thanks.

But, I am tired. And I am allowed. This endless cycle of medical procedures, of surveillance, of surgey, of billing battles, and the like, is not for the faint of heart. And if I want to maintain the strength to continue this journey at the top of my game, I need to allow myself to find a bench and sit and rest. I need to acknowledge sometimes it is raining sideways, with hail, and lightning. Sometimes I have no jacket on. Sometimes my hair is matted and I am chilly from weathering the storm.

In the more than a decade that we have traveled this road, I have learned stamina is essential. I have learned it is often lonely. I have learned that there are no holidays. I have learned that “regular life” still comes for you, even on this Rare Disease pathway.

And if I am honest my biggest struggle currently is my search for a new “release.” I love to walk. Well, I loved to walk. Hours, miles, music in my ears, sunglasses on my face. Apple pay for a bottle of water now and again. It was how I kept myself together in the early years. A new pair of sneakers and a FitBit. My luxuries. Except, my foot. January 2019. Before the world shut down, everything changed. And honestly, the single thing that has been the hardest to overcome, far more than the loss of my breasts, my uterus, my thyroid or anything else this disease tries to take, is the loss of those free, endless, peaceful walks.

Because on those walks I would appreciate the birds, the flowers, and the smiling children. On those walks, I would sometimes sing at the top of my lungs without a care in the world. On those walks I let it all go, I detoured off the main road, and I always found my way back, better, and stronger.

I can’t walk far right now. Every step sends pain up my left leg from the foot that twisted on a child’s chair in my classroom over three years ago. I CAN walk, but it hurts. And instead of setting me free, it makes the weight of the world heavier. And when I try to push, I am reminded of the new pain in my opposite knee, and the muscle knot in the side of my leg, where the body tries to compensate for the limp I try to hide. On the days I work, I count each step. I ration the Advil. I take the stronger medication at night, so I can try to sleep. I wrap it, I brace the other knee that is failing, carefully under my jeans. I am never without the painful reminder of that injury.

I don’t know if it will ever get well. I have not given up trying, but I just don’t know.

And sometimes, like when the Cowden’s syndrome seems to be at play for a bizarre sudden overgrowth of the gums, and the fitting of a crown becomes oral surgery along the way, or when the girl falls miles away and breaks her wrist, or when the HVAC fails with an open-ended repair bill, or when the husband’s company closes, and the list keeps going, and everything changes, I get totally overwhelmed. And I fall behind on Cowden’s things and “regular” things. I kid my daughter that she is allergic to change. I am sure it is something she got from me, besides a faulty PTEN gene and wild curly hair.

I want to take a walk.

But instead, I sit. In the middle of the storm. I sit cold and soaking wet and cranky and lost. And I long for a release.

But, inevitably someone sits beside me. Someone I dearly love. And they hold my hand and give me a hug, and they just sit. And slowly, out of the corner of the sky comes the tiniest ray of sun. And before I know it, there are birds and a rainbow. And being wet doesn’t feel so messy or lonely anymore. And as the sun starts to warm my body and dry my clothes, I find the strength to stand up and move forward. It’s not dancing, but it is moving. Even if it is ever so slowly.

I reach out and hug my husband, and my daughter. And I remember my second favorite release is to nurture my underattended blog.

#beatingcowdens

#beatingcowdens Goes to College!

Published on by beatingcowdens10 Comments

There are normal feelings I have right now. Like when I look at my adult packing for college and all I see is this.

I have all the normal swings of emotion of watching your baby grow up. I feel all the things you feel after you give them roots, and by God’s grace they grow the most beautiful wings. There is normal anxiety, about them making new friends, and finding their way around and starting a whole new life. Without you. During a global pandemic. After at least a year of abbreviated, altered and just not quite right classes and other human interaction. In all of this I am in good company.

Then, there is the added layer of letting your medically complex child free.

This is the child who screamed with colic for over a year while people told me it was just normal. This is the child who had her first surgery at a few months of age, only to have a baffled surgeon come out of an operating room to tell me the hernia “wasn’t there.” That was just a preview of things to come.

This is the child who was so overwhelmed with GI pain she became a sensory overloaded mess. This is the child who missed milestones, and who had early intervention services of OT, PT and Speech that eventually graduated into an IEP that only terminated in June. Yes, June of 2021.

This is the child who needed a timer to move from one side of the room to the other in PreK as her loving teachers guided her.

This is the child who wanted to run like the wind, but could not ever figure out why it hurt. This child we would later find was managing an arteriovenous malformation in her right knee. That knee. Seven surgeries on that knee. Years with the best Physical Therapist in the land. But, we did stop soccer, and dance. And maybe that was for the best. Maybe she has her mother’s coordination.

This is the child who the kindergarten teacher told me in November was “pretty far behind.” I told her to encourage but not to push. I would be just as proud of her as long as she did her best. Then, that same child got glasses. And with the nurturing love of that kindergarten teacher, combined with God’s GIFT in paraprofessionals she soared. This same child, by March had had her first knee surgery, recovered, and was sitting with the top quarter of her class. This child does not like to be kept down.

This is the child, who spent years sick with chronic viral infections. This child hung with me through mainstream and alternative treatments. She pushed me to push forward for her. This child and I went through hell together. We learned each other on the Belt Parkway and the BQE. And somehow we found beauty on the journey.

This is the child, diagnosed with Cowden’s Syndrome at the age of 8, whose diagnosis prompted mine. This is the child, my angel on earth, who saved my life with her diagnosis, as my breast cancer was caught oh, so early.

This is the child who never quite found her way with other kids. They just didn’t “get” each other. Some were so kind, but couldn’t connect. Many were terribly mean and maligned and belittled and tortured and tormented her soul. This is the child who would not break. Trauma after trauma. Surgery after surgery. Medical procedures layered on top of one another. This is the child who sometimes cried in my arms and other times locked it all behind walls. This child. This medical life. There are experiences that shape you, that make you who you are.

This is the child who chose her high school. Deliberately. She wanted to be with kids who were more in touch with real life. This child grew, through love and resilience and inner strength and therapy to learn all about herself. This is the child who found her way to God and a few special friends, finally, and not at all accidentally, right about the same time.

This child waited years for the service dog. The one to manage the needs that had developed through a medically complex life. Ella and she met in January, and the love in their eyes tells me it was worth the wait.

I abbreviate the tales of this child and her journey. I do that because it would make it too overwhelming for you. I do it because the chronicles mostly sit in the last ten years of this blog and sometimes the gut wrenching journey need not be relived in intricate detail. I abbreviate for my sake, because I can appreciate that God’s biggest gift to me is allowing some really traumatizing memories to fade just enough that I can actually breathe as I recall them.

If you ever want stories, I have them for weeks. If you ever need to tell your tales, I am here.

This journey to college has been a long time coming. My college athlete and scholar got there on “Gratitude, Grace and Grit.” That full academic scholarship- that took the resilience to overcome 17 surgeries, remain in top honors, and recover the body every single time to return to the water. Through it this child turned her experiences into compassion and a desire to care for others. As she puts it, she wants to “do better” for people like herself. And there is room. Plenty of room to do just that my girl.

This journey took learning how to manage to moment to moment pain of Arteriovenous Malformations, as a new one has developed in her thigh, and channel that pain into usable energy. To look into the eyes of your baby, the eyes of your one and only 18 year old baby, and to know they will likely never be pain free, is a special kind of torture.

This child, now an adult, will have one more virtual visit, with one more new doctor, before we load the cars. And we have all the fun stuff, favorite sweatshirts, and a pretty comforter. We also have daily pill cases, morning and night, set for 4 weeks. Along with a literal bucket of the “just in case” medications to get her through. There are gluten, dairy and soy free snacks. There are toys and treats for Ella.

There is a whole lot of new.

My heart is full of hope. While the medical problems travel with her, she has reached an age where many kids have seen life, and are generally more tolerant of humans. My heart is full of hope for new experiences, for laughs, and friendships that will form.

My child leaves with less experience in some areas, and so much more in others. And my hope, my prayer is that in this place there will be balance.

I am with all my other mother friends, leaving their children at college.

My heart is with my mother friends who will never have the privilege to experience this “going away to college.”

My heart is with my mother friends whose babies no longer walk this earth, but cover us all with their angel wings.

I have learned from all of you.

And as I cry, because I will cry, I will also absorb the magnitude of the fact that this is happening.

As we told her doctor many years ago… “every step of the journey IS the journey.”

We remain #beatingcowdens

Exhale…

Published on by beatingcowdens4 Comments

Meghan and Ella have been settling in so well together.  Jax and Ella are fast friends.  April and Ella will be polite acquaintances.  Ella is playing, running, eating, and sleeping.  She is adjusting to life in our home and seems to be enjoying it.

The most prominent lingering fear surrounded the lump on her side.

We gathered the notes from the vet in Indiana.  We put all her paperwork together.  The entire Ortega kennel had vet appointments today.  So, we headed out for the first time as a party of 6- 18 legs, and 3 tails.

Our veterinarian is thorough.  He has treated our dogs well.  April needed some lab work for a persistent problem we’re working on.  Jax needed to be caught up with some shots.  And, Ella, well, that pretty girl needed to get started in her next phase of life.

The vet took her in and did a complete exam.  He read the sparse notes we carried with us from Indiana.  He looked at the photos of the lump on her side.

He called to tell us that we should start her vaccinations, as he could only verify rabies.  He told us he did a heartworm test that was negative for heartworms.  He drew blood.  That “should be nothing” later this week.

And, since in these Covid times, all news comes via phone from outside the vet’s office, the three of us sat quietly while we waited.

“And the lump?”

“It’s her rib.”

Collective exhaling throughout the car…

“Her RIB?”

“Yes, if you trace along the bone it’ll take you to her spine.  Most people never feel it.  Ella is very lean.”

Fist pumping and smiling took place for a few minutes.

We live in a worst-case scenario existence.  It is so rare that it goes well.  And, yet, today, was a win.

Nerves shot for no reason. I have no idea what happened in that office, or why the vet said hernia 750 miles ago.  But this is a win.  I’ll take it all day every day.

It looks like the rest of life really does start now.

Meghan and Ella… onward.

#beatingcowdens

Pandemic Got Your Tongue?

Published on by beatingcowdens2 Comments

NYC #COVID19

NYC #Covid19

There are things you could do without ever experiencing.  Clearly #COVID19 is one of them.

I live in NYC.  I have lived here every one of my 46 years.

I was born and raised here.  I graduated from public school, SUNY and then CUNY.  I work in the elementary school I graduated from.  I have lived in the same zip code pretty much my whole life.

I watched my local community rise up many years ago when my young cousin battled Leukemia.  I remember that, even over 30 years later, whenever a neighbor I don’t know is in need.

I watched my local community, many aspects of which were decimated by the horrors of 9/11, rise up in indescribable ways.

I watched my community draw together again after Hurricane Sandy wiped out neighborhoods.

We worked together.  We prayed together.  We loved on each other.  We gathered together.  We shared what we had.

I live amongst compassion, bravery, dedication, resilience, tragedy, and grief.

I also live amongst some selfishness, stupidity and inflated senses of self importance.

The greatest city in the world gives you all that and then some.

Despite having a small social circle, I am a mother, a wife, a daughter, a granddaughter, a sister, a niece, a cousin and a friend.

I am a patient with a PTEN mutation called Cowden’s Syndrome.

I am a cancer survivor.

I have a teenager with 2 rare diseases, and a brain that runs 24/7.

We are immune compromised.

I am a NYC Public School Teacher.

My husband is an essential worker.

Daily the news reports are often silenced in my house.  I know what’s going on around me.  A few numbers across a screen give me what I already know.  Hope of blossoming spring has been muted by tales that nightmares are made of.

I spend the days trying to remotely engage young minds in math games.  It is, if nothing else, a welcome distraction.

Suddenly, this community that does so much better when we can gather together is isolated.

Our friends are sick and dying quickly.  To much of the country and the world they are numbers.  To us they are humans with names and families.  We can not visit.  We can not comfort.  We can not gather.  We are leaving our loved ones at the emergency room door, praying we will see them again.

We, alongside the whole world, are fighting a virus that seems to have a strangle hold on my home town.

People like to make themselves feel better, but the truth is this virus does not discriminate.  We can barely even find it, let alone attack it.

We are chasing it.  It clearly has the upper hand.

We have been told to #flattenthecurve but, I fear the sheer numbers of us make this so much harder.

My husband comes from work removes all layers, scrubs, showers, washes all outer garments.  He gave up public transportation to reduce his “touch points.”

We are grateful for the home we have.  We are grateful for each other, for the internet, for Zoom and FaceTime, and virtual church.  We are grateful for washing machines and space, and luxuries never to be taken for granted again.

We are grateful for computers that allow for everything from Advanced Biology to voice lessons and test prep.

We leave for 2 walks a day at off peak hours.

The stores I used to walk in and out of because I could, are saved for when lists accumulate and there is need.

We order food a few times a week, a calculated risk carefully played out because the restaurants that have openly supported our fundraisers through the years, deserve our support now as well.

The schedule has slowed from its chaotic pace.  Swim season just isn’t.  There is no college search right now.  Doctors are cancelling, and rescheduling.  Routine check ups are on hold.  And honestly I don’t mind.  Even this chronically painful foot is waiting its turn while really important things happen at the local hospitals.

We take this call to social isolation really seriously here.

Selfishly, I might even enjoy a little of this forced family time.  A year from now my girl will likely have her college chosen and be starting her transition out of our nest.

Having Cowden’s Syndrome has done a lot of work on my perspective through the years.  I’ve learned that you can’t keep waiting for it to be over.  That’s true of everything in life.

A dear friend has told me often, “You can have it all, just not all at the same time.”

You have to live each day, from beautiful to unspeakable.  It is the only way to preserve feelings of compassion, empathy and focus on the greater good.  You must laugh and cry, and scream and yell, and feel all the feelings.

I have scanned 3 and a half years of letters Pop wrote to Grandma in the years he was deployed during WWII.  Those years preceded a marriage that lasted over 70 years.  I think of them all the time, but even extra these days.  I think about how hard it would have been to socially distance from them, but also about the lessons they could have taught all of us in patience, resilience and sacrifice for the greater good.

I’ll use some of the next days to read every one of those letters before uploading them to create a hard copy to be shared in my family for generations.

There is a lot to be learned from the “Greatest Generation.”

Sometimes I get angry at flippant or arrogant folks I see, in person or on the news.  The people who think they are too good, or exempt from this global pandemic.  The people who don’t think they have to do their part.

Then, I decide to focus on the overwhelming number of people who are doing whatever they can to make this better.  All those essential workers we learned about in the first grade unit on “Community Helpers” are the ones I focus on with gratitude.

I am not better than this virus.  I am just as susceptible as the good people across the globe who are struggling with these infections.

I isolate not out of fear, but out of respect.

I isolate out of respect for those who can’t.

I isolate out of respect for our first responders and essential workers.

I isolate out of respect for those who are living with this virus.

I isolate because maybe one less person will get infected because I did.

I miss the way our city has come together in all other times of tragedy.

I miss hugs, and offering comfort and being comforted.

I will message the people I miss so much, and check in on them.

And, instead of complaining the time away I will spend more of it in prayer for those who need very much not to feel alone, reaching out through the technology I’m blessed to have, with gratitude that if I am forced to isolate I have a comfortable home and a few of my best friends to be with.

Jax is a welcome distraction.

Sweet April

#Family

#Flattenthecurve

#COVID19

Still #Beatingcowdens

 

 

 

Show Up

Published on by beatingcowdens4 Comments

It was three MRIs in two days that week in November.  That’s too many, in case you were wondering.

One was an extension of an August MRI, which had been a knee follow up.  If you’ve been following – you know that long story.  If you’re new, the AVM (Arteriovenous Malformation) she was likely born with in her right knee, has cost her 8 trips to the OR so far.  It requires frequent attention.

By frequent I mean we see the orthopedist more often than we see most family.  And this time the whole muscle band up her thigh had been acting odd.  So we reached out to the orthopedist who asked for an MRI of the right thigh before we saw him at 1 PM that Tuesday.

By “odd” I actually mean really painful.  Pretty much all the time.  Painful enough that walking long distances or kicking swim practice got hard to maintain.  But there is so much that hurts it’s hard to sort out where something stops and other things start.  The hip had been “out” more than in, and even the chiropractor could not sort out why.  The knee pain was persistent enough to leave her wondering if something was wrong again.  The shooting pain, tingling and occasional numbness left her wondering if a nerve was somehow damaged.

Turns out, in typical form, she was right pretty much all around.  This kid has an uncanny awareness of her body.

The doctor’s student came in first not far past 1PM.  The MRI results were up, and he mentioned the AVM.  We said, “In her knee?”  When he said no, and mentioned one higher up in her leg, I pulled the plug on his practicing and sent for her actual doctor.  Turns out the thigh MRI showed a vascular malformation in the back of her right thigh.  It was somewhere in between the muscle and the bone, and adjacent to the sciatic nerve. When the images changed you could actually see the proximity to the nerve.

Hip issues – check

Knee pain- check

Shooting (nerve) pain-check

So he asked for an MRI with contrast of the pelvis.  “Sooner rather than later.”

But then he had to address the issue that had been of greatest concern walking in the door.

The right shoulder had been presenting an escalating problem all during the fall swim season.  She is a powerhouse my kid.  She pushes through because she knows nothing else. The awareness that the Hypermobile Ehlers Danlos diagnosis added on in July could at least explain the frequent partial dislocations was little comfort to the body that was living with them.  A thorough examination of a shoulder with extremely limited range of motion left us with orders for an MRI arthogram of the right shoulder.  It was time to rule out a rotator cuff tear.  We left with both MRI orders, and scripts for muscle relaxant and pain meds.  We were told to try to get it done by Thursday.  Yep 48 hours.

Thankfully Meghan’s insurance, which is the same as my husbands, (insurance coverage and coordination of benefits could take another post, so just trust me) does not require prior authorization for MRI testing.

So I got on the phone with scheduling and secured an appointment at the same facility we had been at at 11 AM for 3:30 PM.  That ended up being the pelvic MRI with contrast, something we avoid until we are confident something is there.  IV in place, back in the tube for another 45 minutes.

We were able to schedule the arthogram for 8AM the next morning in Brooklyn. But, not before learning that an arthogram was a pretty awful test.  As I had tried to barter for a time that would not take her out of school three days in a row, I was told that the doctor had to be on site.  I was asking for a quick schedule and I had to take what was available.  I was wondering why a doctor had to be on site, but my girl found the answers first.

And as we contemplated the test we sat in two hours of traffic to make the 32 mile trip home.

The next morning we were met by a well meaning tech in a Brooklyn office who thought my girl was going to have the catheter placed without me. You can say all the rational things you want about her being almost an adult. But PTSD is very real.  No matter how smart and articulate she is.  It is flat out real.  And that was about as huge a trigger as there is.  So I got a vest, signed consent for whatever I was about to be exposed to and held her hand while she screamed in pain.  The catheter was placed.  The contrast was injected, and we were back to another 45 minuted in the tube.

The appointment at 1 the next day was overwhelming to say the least.  The pain, the anxiety and the exhaustion were palpable.  The news that there was no rotator cuff tear was met with simultaneous relief and exasperation.  And if you don’t quite understand that it is probably because you have not lived with daily pain so intense you would give just about anything to hear that it was fixable.

Our orthopedist is nothing short of amazing, and he was able to explain to her that it was likely that repetitive partial subluxations caused muscle spasms that left the shoulder sitting just out of place enough that it was incredibly painful.  And because the muscles were in almost a constant spasm she couldn’t get it back “in.”  He explained the strength of her back and how some muscles are overpowering others.  He broke down the directions for PT.  He pulled her from the water for 7 days.  He started a muscle relaxant 3 times a day.

Then, he had to explain to her that we should head back to Lennox Hill Hospital to see the interventional radiologist who dealt with her prior AVM.  It had been three years since we had seen him, in hopes we were done for good.  The placement of this “small” AVM (and think relative here, does a splinter hurt?  Yep.  So a grape hanging out somewhere in between the bone, muscle and nerve probably would too.) was difficult from an ortho standpoint.  He felt that embolization, closing off the blood supply to the malformation, would give a quicker recovery than trying to dig it out.

We had an appointment on December 2nd at Lennox Hill.  Just enough time to let the muscle relaxants start to kick in, PT to begin, and the shoulder to start moving slowly and painfully.

The doctor looked at the scans, did his own ultrasound and told us to schedule the procedure.  We left with a date of Tuesday, December 17th for an outpatient procedure.

The date was carefully chosen by my girl.  The 17th meant she’d miss only 4 days of school, and for a junior with a rigorous schedule and a 4.0 that mattered.

Also, the 17th meant she could go to Lancaster, PA the weekend prior to compete in a qualifying swim meet she had worked for years to make.  She had been looking at this meet since she began swimming years prior.  When she made her first, second, and third cuts over the months leading up to it, she was ecstatic.  Now, she was facing this meet with a different set of eyes.  The training interruptions caused by her shoulder meant she was unlikely to attain any best times.  However her gentle giant of a coach reassured her she should go for the experience.

And it certainly was an experience!   We left for home Sunday the 15th with the coach’s approval of three good swims.  She knew it was the last time she’d be in the water for a bit.

We left home Tuesday the 17th for at 8 for a 10 AM arrival.  This was surgery 19.  We knew the routine.  She had had nothing to eat or drink since 9 the night before.  The wait was long.  It was after 2 when we were waiting to leave her in the OR.  And as we were leaving the team made a last minute change that they would do the procedure on her stomach.  That meant a more aggressive anesthesia and an overnight stay which we were not prepared for.

We were placed in luxury accommodations, better than most hotels I’ve stayed in, because pediatrics was overbooked.  We ended up in the executive suite.  With nothing we needed.  Felix headed home on the bus to gather supplies.  He then drove back to the city and met me at the door to the hospital before heading home for the night.

I was glad we stayed.  The pain needed hospital level management.  The pain medication allowed for some brief silly time.  She was discharged around noon the next day.

As I went to gather the car from the lot I was prepared for the hefty overnight fee, but not for the giant scrapes along my right rear panel. Clearly my car had been hit, hard.  The bumper clip was broken.  I had just enough time to file a claim with the garage before she let me know the transporter had her in the main lobby.

I settled her into the car in terror because she could not get a seatbelt on.  I prayed so hard during that white knuckle drive down the FDR and through the tunnel.  We arrived safely home 45 minutes later where a neighbor saw us struggling and helped her up the stairs into the house.

As I write, it is the afternoon of 12/22.  If you’ve read this far you know it’s been a long month.  But the longest days came after we arrived home.

This kid is busy.  All the time.  She is at school.  She is at swim.  She is at lessons.  She is at the doctor.  She is at PT.  She is NOT used to being home.

Because I think most of us can relate that when you are still there is time to think.  And thinking is hard.  When you are still there is time to feel.  And often feeling is hard.

My girl is used to being just on the outside in most social situations.   I do not know why.  I can theorize for days, but it doesn’t matter really.  It just is.  So when you are on the edge, you get your interactions with people when you are there. When you are not there you get the often difficult to process feeling that you are not missed or your absence isn’t noteworthy.

There were some cards, and some well intentioned messages from well meaning family and friends.  They lit up her whole being.

If I’ve learned anything from watching her recover and rehab time and time again, it’s this.  When you’re not sure what to do, show up.

I don’t mean in person necessarily.  Although those visits can bring brief humor and relaxation.  The irony of this technologically connected world is that we are more distant than ever, when it is so easy to show up.

When in doubt, send a text.  There is no need for gifts or grand gestures.  Offer a face time call.  Let someone know you care, especially in the first 4 days when then pain is often the worst.  It’s ok to reach out because these phones are all on mute.  And you won’t bother someone sleeping, you will only make them smile when they wake.

Whether it’s one surgery or 31, the chronically ill patient appreciates it.

There are so many super-convenient ways to show up.

So many that we are practicing showing up more for others.  Because the world is round.  And you may not ever repay the kindness sent to you, but showing up for someone else can change everything.

#beatingcowdens and#hEDS