“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—
And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—
I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.
Emily Dickinson
Lots of talk about HOPE this month, as RARE DISEASE DAY approaches. The phrase “Hope, It’s in our Genes” has become one my family relies on when we struggle. Hope is complicated. Or its simple. I guess it depends on how you look at it. Regardless, its necessary- for all people at all times.
I can not imagine living my own life devoid of HOPE. FAITH and HOPE work hand in hand here, and at our most desperate hours one is always there to shine a light in the darkness. I am convinced HOPE is there, even in the darkest hours. When we look. Here’s what HOPE looks like at our house.
HOPE is the kiss of a dog when the tears just won’t stop.
HOPE is a hug, or an,” I love you.”
HOPE is an EMail or a text, or a phone call at just the right time, from the person you’d never expect.
HOPE is believing that it’s all going to be OK. Somehow – some way.
HOPE is pain relief, even if it’s fleeting.
HOPE is quality Physical Therapy.
HOPE is the friends, (and the people we barely know) who “Care about RARE” because of us.
HOPE is an answered letter from someone you’ve never met, whose willing to help – just because.
HOPE is laughter.
HOPE is medicine that works.
HOPE is butterfly kisses.
HOPE is the internet, and connections to old and new friends.
HOPE is family.
HOPE is knowing you’re not alone – ever.
HOPE is when that special thing you thought was lost forever… shows up out of nowhere.
HOPE is believing that the surgeon will have the right answer.
HOPE is confidence that you are doing the best you can.
I am actively, consciously, deliberately, trying to get out of my own way.
I have hopes, goals, dreams, aspirations. I love my daughter, my husband and God and my family and friends.
I want to be stellar mom, an outstanding wife, and a good friend.
I want to be a Christian woman who leads by example.
I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.
I want to teach people about health and wealth and how they can go hand in hand.
But I am stuck.
Right in the middle of my own way.
We had Meghan to the neurologist today. We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan. It took an hour and a half. I just about worked myself into a migraine on the way.
But, fortunately, the torturous migraines of the fall are a memory. Controlled by a medication I would rather her not take. Today we got a dose increase, and something to help her sleep. It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness. HA! Not here. There’s my Meg… doing it her own way.
This was an easy appointment. We were home by 5:30 although wiped out by the journey – all of us. The follow-up is in a few months, the new script is in hand.
They are asleep.
I am sitting at the computer. Thinking. Researching. Typing. Organizing. Planning. Attacking everything. Accomplishing – not so much.
Today I called to reschedule the thyroid surgical consultation. Suddenly 5 weeks seems like a really long time. The tickle in the throat is troublesome. It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter. I try to ignore the reality that we both know exists. I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.
“It’s not sore till I cough. It just feels weird – right here.”
And there on the right side of the thyroid is what has begun to feel like a small stone. I try not to let my imagination get the best of me as I picture it pushing on her windpipe.
“It’s fine,” I tell her. “We’ll just get the doctor to take a quick look.”
She’s not dumb. Not by any means. And that is a good deal of the problem. Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet. Now the monster is real. And it gives real life nightmares.
So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon. No one can be sure what he will say. And I am not sure there is a statement he will make that will soothe me or make me happy.
And the waiting game continues. One appointment down. Two weeks till the next. Then on the 11th I have 3 and she has one. I still haven’t figured if its better to consolidate or spread them out. They just keep coming. One after another…
“Beatingcowdens” will suck out your energy if you let it.
But I won’t. That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix. Recently they named their 100th millionaire. A school guidance counselor from NJ with no network marketing experience. We three start every day with our shakes. We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep. We are feeling better and better. So in the time I have at night, I listen to podcasts, I learn all I can. And I try to share with my family and friends that I am finally not that sickly little girl they knew. I try to share with them the health and wellness opportunities, and the vision for financial freedom. I am here. I am ready. If they will listen.
meghanleigh8903.isagenix.com
And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades. Trying every moment to be the best I can be.
As I sort through the last boxes from Dad’s apartment. And I laugh, and I smile, and I cry. As I make binders of beautiful 8×10 prints I found everywhere. As I sort through the photos on CD and prepare hard drives for my brother and sister. And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly. Not a saint, but who is? And so much wiser than any of us really gave him credit for.
And I make list after list of the things I need to do. In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.
I think about my friends who I love. The ones I never call, or barely talk to. The ones who I text instead of calling or visiting. I think of how busy our lives are… and for what?
Rare Disease Day is coming. February 28th. Our school is celebrating. Meghan is thrilled. There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.” It gives purpose. Hope. A distraction.
Somewhere in the midst of all this I have to stop and wonder. How do people do it?
Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities. Over run. Overworked. Exhausted. Worried.
How do they get out of their own way? How do they manage to keep the balance of friendships and “play dates” for adults and kids? How do they get the laundry and the grocery shopping done, and still find time to play?
I think I am a pretty organized Mom. But yet – I need to use my time better. I won’t part with my writing. That’s therapy for me.
I’ve minimized the clutter in my house (just don’t look in the closets.) Now its time to minimize the clutter in my head.
Cowden’s Syndrome Awareness
This card was created out of her need to “teach” others about Cowden’s Syndrome.
Rare Disease Day
Doctors, surgery?
Isagenix – health and wealth
Reconnecting with old friends
Making the time to exercise… cause I like it.
FOCUS
Now if you’ll excuse me… I have to find my way out of this maze…
Lions and Tigers and Bears, Oh MY… Lions and Tigers and Bears, Oh MY…
Three Years ago Meghan was Dorothy for Halloween. The idea originated on a trip to Disney as we went through “The Great Movie Ride.” Felix and I realized she had never seen “The Wizard of Oz,” and we had a thrilling time explaining the story and later watching the movie together.
Meghan liked Dorothy because she felt like she could relate to her. She respected Dorothy’s bravery as she led the Lion, the Tin Man, and the Scarecrow to see the Wizard of Oz. She liked Dorothy’s stamina, and her determination. Dorothy never gave up. And she carried a dog. Really, what more could a girl want?
Of course for my only child, my girl, I jumped full in and spent a ridiculous sum on a fabulous Dorothy dress and some ruby slippers. Well worth it. Worth it for the memories, for her smile of excitement, and for days like today when I can remind her that she and Dorothy have an awful lot in common.
Meghan is fighting shoulder pain. Deep, knotted pain. The mean, painful kind, only pacified with full strength muscle relaxants, that you don’t wish on anyone – especially not a 10 year old. And definitely not THIS 10 year old.
One might theorize that its stress related, and one might even be tempted to tell her to relax, and let a few things go. One might be tempted to admonish her for making herself so tense. Really, at 10 – what should she be worried about?
Then if that very same person, who hopefully thought before they spoke, really contemplated the life of this kid – they might understand. They might even grab a pen and help her write her homework, or make some time to rub that shoulder.
And, while they rubbed, and listened to the throat clearing which must just be flat-out annoying to HER, they would really be in awe that she holds it together as well as she does.
She is a kid. A kid with a growing up body, and grown up worries. And a kid who still has kid worries too.
While anyone who sees her sees a cool, confident smile, and a remarkable, articulate presence, only a precious few have glimmers of the “lion” side.
Meghan strives to achieve excellence, all the time. She wants to do her best in school. Actually, she expects herself to be perfect in school. She agonizes over each step along the way. She loves the children. She enjoys the teachers. And this young lady who spends so much time feeling “abnormal,” strives every second of the day to fit in perfectly at school. She relishes the feeling of “normalcy,” even if only for a few hours each day. The problem is, anything less than perfection is unacceptable to her.
Now, if I am honest, and introspective the phrase “alligators have alligators” comes to mind. She learned a lot of this worry from me. And even though I do not have the expectations of her that she has of herself, I have those expectations of MYSELF. I want to give it all to everyone, all the time. And sometimes, I feel as though the “perfect storm” is lurking, and my inability to “let it go,” could be the inevitable cause.
But what to “let go?” Please, don’t even get me started. Maybe instead I, the lion, should focus on my faith – toss it up to God, and lead by example.
Easier said than done of course.
So I, the Cowardly Lion watch, as my brave Dorothy leads down our “Yellow Brick Road.”
Sometimes we have to duck out of the way, as obstacles fly in our faces, but we press on. And I watch as my brave girl starts to work on a Rare Disease Day Movie Night fundraiser. I watch as she puts others first. I follow her lead, glad to be her back up.
I watch as she gathers information. I listen as she asks her aunt to help her create a Power Point. I admire her focus.
She suffers. She grieves. She stresses. She panics. She hurts. But she perseveres.
Rare Disease Day – February 28, 2014.
Thyroid Surgical consultation – February 25, 2014.
I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.
Except this one – not so much.
It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.
Gratitude, that it is not a full time arrangement.
Anger that it has to be part of our lives at all.
Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.
Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.
Guilt, that my child can walk and so many others can not.
My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.
Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.
I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.
There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.
There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.
And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.
There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.
There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.
The lipoma on her back was almost certainly Cowden’s related.
And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.
But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?
And the physical therapy that is a necessary part of her existence – just to function.
What about the migraines – now well controlled, but not gone?
And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.
The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.
Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.
Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”
When she was younger I could hide things from her. Now she’s just too smart.
When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.
When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.
When she was younger…
But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.
She can swim – pretty fast. Just not too often.
She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.
She can play outside for a bit – but not too long.
She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.
I am grateful. You bet. And sad too. And I think it’s OK to be both.
She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.
SO if you happen to run into us when she needs that wheelchair, just smile and say hello.
We will remember to be grateful we don’t need the wheelchair full-time.
When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.
I knew from the caller ID that it was going to be the hospital with the pathology report. Home on a snow day, relaxing with the family – I took a deep breath. It was the endocrinologist on the other end of the line.
“I have the results of the pathology…”
AND???
“The samples are not malignant, but…”
YAY, and UGH!
And there followed a conversation that lasted several minutes. I tried multiple times to use the word “benign” to refer to the results. Each time I was carefully deflected. When he spoke he never said “benign’ once – only “not malignant.” Synonyms – yet apparently not interchangeable.
Someone less in tune might have missed this conversational nuance. I don’t miss much when it comes to my daughter.
So the doctor recounted how each off the 4 cell biopsies obtained through the Fine Needle Aspiration, showed cells that were “not malignant.” When I asked about the cells, specifically remembering the “precancerous” title given to the cells that had brought us to this hospital to begin with, he told me again the report says they are, “not malignant.”
SO WHAT’S NEXT?
I know I didn’t imagine the deep breath on the doctor’s end of the phone when he began, “Typically, we would follow the case in 6 months with an ultrasound, and I think you should make that appointment.” Then there was a deep breath and a pause. “I also think you should take her to see a surgeon – just for another pair of eyes.”
Now I was thoroughly confused. “Why? Do you think the throat clearing that has been going on could be related to the nodules? What about the Fine Needle Aspiration? How accurate is the test?”
He addressed one question at a time. Almost as if he expected them. He and I were not fast friends, and he often seemed annoyed by the countless questions I ask. It never stopped me, but I couldn’t help but notice he was almost anticipating my questions today. Maybe he was even welcoming then. I flashed back to that visit on December 19th where he was visibly uneasy about the feel of that right thyroid. “The FNA is accurate 90-95% of the time. Usually that is not an issue because thyroid cancer tends to grow very slowly and if we follow every 6 months, we will typically catch anything we need. That being said, in a situation like Meghan’s where there are so many nodules, and there is Cowden’s Syndrome, it sometimes is harder to manage. In regards to the throat clearing – I don’t THINK it’s caused by the nodules, but again I can’t be sure. Why don’t you set up a consultation with the surgeon?”
Deep breath. It’s good news I kept reminding myself. It’s not cancer. (Yet… nagged the little voice that never knows when to shut up.) I reassured him that I would schedule the appointments with him and the surgeon. Of course after I arranged to have the pathology and ultrasound reports Emailed to me so I could agonize over every detail…
I scheduled the appointment for the first week in June. I tried for the first week in July – but he is on vacation that MONTH… Then I sat down to Email Meghan’s hematologist/oncologist the reports and ask her opinion. She concurred with the endocrinologist and approved of his choice of surgeon.
Within 45 minutes my phone rang. The caller ID showed the hospital number again. This time it was the surgeon’s office. They were contacting ME, at the doctor’s request – to set up a consultation for Meghan. Well I have to tell you that didn’t do a whole lot to ease my mind. Obviously it was nagging at the doctor enough that he reached out to be sure I made the appointment. Scheduled. February 25th. I couldn’t get a time because they call the day before with that. So, I explained how much I really NEED to be at work. They made me no promises. The 25th it will be. Regardless of the time.
The snow was so pretty today. So nice to be home as a family, to shovel, to play, to take some pictures, to watch an old movie.
I sat down to type this almost three hours ago, but somehow as Meghan was getting ready for bed she developed severe pain in her back and a ruthless headache. Reminders that even an hour or so in the snow is too much for her body to endure. Frustration. Fear. Two hours at her side, her father and I alternating pressure on the most painful spots. She’s asleep in my bed now. Moaning. The night will be long.
Some time this afternoon I realized again, that this is just how its going to be. We are going to walk out of one fire, while walking around another. We aren’t going to know the hows and whys. We aren’t going to be able to make many plans despite our best efforts. This is life with Cowden’s. This is our life.
And tonight, as I held my husband’s hand, and we each had one hand helping soothe Meghan’s agony, I realized again that through the depth and power of our love for each other – all of us – this works for us. It’s not what I would have chosen, but it’s what we have.
Never in my wildest dreams could I imagine a day without the two of them. Somehow, that has to make us the luckiest family in the world.
I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work. We race to take our children to the many places they need to be. We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.
In our house we race. Gratefully, we have added something fun in the form of Swim Team this year. There are many weeks there is even time for two practices. So she won’t be an Olympian. But some fun is an improvement.
Because without that Swim Team – it was all medical – all the time.
Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York. And they all require regular check ups…
“Skip it…” whispers the voice inside your head. “I don’t have time…” “We won’t make practice…”
But “skipping it” is not a luxury we can afford. Cowden’s Syndrome has robbed us of the luxury of putting it off. It is the clock that is always running. It is the reality of my breast cancer – beaten. It is the “reminder” in my iphone. It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.
And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks. Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.
There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few. Some are once a year. Most are twice. And that’s all well and good if everything checks out fine. However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….
Last year I tried to get them all done in July. That was pure indescribable hell and it swallowed our whole summer. Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.
And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.
So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in. We often find ourselves racing into an appointment after a long day – only to find ourselves waiting to be seen.
“Hurry up – and wait.”
Meghan is an outstanding “wait-er.” Partially because she’s used to it, and partially because she knows it’s necessary. We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied. But she would rather be playing. Or swimming. Or resting. Or crafting. Or just being a kid.
We find ourselves facing the same problems many other families face – laboring to fit in time for fun. But it is further complicated by fatigue and a lack of stamina. She can not walk more that about 3/4 mile without wiping out. She will, when time allows, sleep 13-14 hours a night. So we have to always be careful not to push too hard, because the repercussions can be serious. Sometimes I imagine friends think we make it up.
“Hurry up – and wait.”
And we raced into Sloan Kettering Cancer Center on December 19th after school. I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.
But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck. The one she feels every time she goes to put her necklace on. The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.
So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned. He asked for a tape measure. His eyes were serious. He spoke of significant growth. He said we needed a biopsy.
“So let’s do it. I am off for 10 days.”
“Well, you know, with the holidays…”
“Let’s hurry up and get it done. I will take whatever you have.”
And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof. The doctor explained that the radiologist doing the FNA needed a recent ultrasound. (You mean like the one I had asked for with the December appointment all along?) I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute. So we did. Ultrasound December 23rd. FNA under general anesthesia on December 31st.
“Hurry up – and wait.”
Apparently no one got the memo things have been a bit stressful around here this month.
So we did the ultrasound on the 23rd. 30 minutes with the tech. Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan. Nothing going on on the 23rd of December. No worries.
“Hey, that’s a lot of nodules on a young lady…” says the doctor. ARGH!
So when do we squeeze in something fun? Something she can say she DID on the vacation?
We made it up to see the New Year’s Eve Ball very early on that Saturday morning. Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month. Trying to find the time to view her world through a camera lens. We spent about an hour. Then we went home.
Grandpa Tom’s “smile”
There were 2 play dates. Lovely girls. So I guess there was success.
And then today.
Arrive at 6:30 I was told. So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.
“Hurry up – and wait.”
We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor. The procedure was at 8:15 and lasted double the time it should have.
We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.
I may have a few cocktails myself as midnight approaches. If I stay awake that long. After all its been a long day, week….
And we know Daddy’s got the New Year’s Eve Ball well taken care of.
As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head. I have thought of the song from time to time over the last 20 or so years. The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991. As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song. It isn’t too often that a song “speaks” to me…
When you pass through the fire, you pass through humble You pass through a maze of self doubt When you pass through humble, the lights can blind you Some people never figure that out
You pass through arrogance, you pass through hurt You pass through an ever present past And it’s best not to wait for luck to save you Pass through the fire to the light
Pass through the fire to the light Pass through the fire to the light It’s best not to wait for luck to save you Pass through the fire to the light
I have a brother.
Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years. But I have a brother. And I am damned glad I do.
I have always loved him. Always known he was there. Always followed the tales of his life from afar. Always sent a card. But, never really got to spend any quality time with him. Knew he was well loved. Knew he was tons of fun. But never really got to KNOW him. Not by anyone’s fault. Life and circumstances have a way of getting in the way.
And then some time in November I had to make a phone call. I had to call him in the middle of the life he established Texas, and tell him Dad was sick. Quite sick.
I had known for a few weeks. I had seen him in the ICU. I knew about the jaundice. I knew in my gut things were not good. But it took weeks to get Dad to let me tell my sister the full extent of the problems looming. Then finally he let me call my brother.
And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.
A few days to digest, and then another call. “I think you need to come.”
And that was all I needed to say.
He stepped off the plane a few days later at exactly the most perfect time. He parked himself right in Dad’s apartment and stayed. He was there for those overnights that were getting a bit tricky – to say the least.
As you pass through the fire, your right hand waving There are things you have to throw out That caustic dread inside your head Will never help you out
You have to be very strong, ’cause you’ll start from zero Over and over again And as the smoke clears there’s an all consuming fire Lyin’ straight ahead
Lyin’ straight ahead Lyin’ straight ahead As the smoke clears there’s an all consuming fire Lyin’ straight ahead
Dad was getting sicker. Quickly. And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.
I grew up with two sisters -one older, and one younger. We grew up understanding each other’s strengths and weaknesses, and working on love throughout. Now I was in a different trio. A different dynamic. For a different purpose. One none of us wanted to face – but we were there. And the “All consuming fire” was “lyin’ straight ahead.”
We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years. We took the best of what each of us had to offer. We laughed at old stories. We cried out of sadness and frustration, and anger and disappointment. We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.
Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state. My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”
Well – not quite THAT… but to some extent yes.
And there were times that we sat, each on our own personal hell. Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better. We sought the magic wand… and realized it was already in place.
They say no one person can do it all But you want to in your head But you can’t be Shakespeare and you can’t be Joyce So what is left instead
You’re stuck with yourself and a rage that can hurt you You have to start at the beginning again And just this moment this wonderful fire Started up again
When you pass through humble, when you pass through sickly When you pass through I’m better than you all When you pass through anger and self deprecation And have the strength to acknowledge it all
When the past makes you laugh and you can savor the magic That let you survive your own war You find that that fire is passion And there’s a door up ahead not a wall
Dad’s struggles. Dad’s worries. Dad’s heartache. His pain. They were about to end. He was going to be free from his broken body. He was going to be free of his suffering and his pain.
But what about us?
I know all about the truth, and I believe deeply in Heaven. But I am selfish. I miss him. I miss my sounding board. My ally in all endeavors. My confidant for the “blow by blow” struggles that were too tough for others to hear.
“There’s a door up ahead not a wall…”
We met at the cemetery today. We stood for a while. We cried a little. We prayed a little. We held each other a lot. We know he’s not there. He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him. But I admit to not shaking the selfishness.
We ate pizza as a family. The conversation was easy and light. Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest. She told him all about the arrival time, and the procedure. She spoke like a pro – someone easily twice her age.
So much uncertainty. So much loss. So much worry. So much… so soon.
She has taken an extra love to her Uncle Shane these last few weeks. This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.
As you pass through fire as you pass through fire Tryin’ to remember it’s name When you pass through fire lickin’ at your lips You cannot remain the same
And if the building’s burning move towards that door But don’t put the flames out There’s a bit of magic in everything And then some loss to even things out
Some loss to even things out Some loss to even things out There’s a bit of magic in everything And then some loss to even things out – Lou Reed
I have a brother. And now I have to let him go. But not far. And certainly not forever. For no one can live through what we lived through these last few weeks and remain the same. There are experiences once shared that can not be forgotten. There is respect earned that can never be lost. The lesson, the reminder that life is fragile and fleeting remains forever. I always had 2 sisters. And I always loved them so.
But now, with an ache in my heart, and tears on my face, I have a brother too.
“There’s a bit of magic in everything, and then some loss to even things out…”
I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down. Now.
I know that’s wrong for any number of reasons, but I have always been candid here.
In the 10 days since we have buried my father there has been a whirlwind of papers and errands. There have been things to organize and sort. There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.
And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.
This year the reasons are kind of obvious. I am starting to think its likely to get worse before it gets anywhere close to better.
Then my husband reminded me about last year. He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU. He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.
It was right after Christmas last year that we had the “Santa” talk with my girl. My one and only.
So, I guess I knew all along this would be a year I had to look a bit harder for the magic. We looked hard in Disney in August. And we found it.
But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live. That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma. I heard the Christmas tunes. I helped with the ornaments. And I felt like I was in a bad movie.
Meghan had suffered with migraine headaches most of October and November as my father was sick. An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.
I couldn’t get the cards together this year. I just couldn’t do it. Maybe some time around Valentine’s Day I will feel up to a greeting. I ordered the food for Christmas dinner too. Yep, its better for everyone anyway, as I am a rotten cook. And the family is bringing dessert. I bought gifts for the children. Although even those were mostly purchased online. And so many of the adults are getting gift cards to their favorite stores.
Last weekend Dad’s mom was in the hospital. Today she is back at her home, but she is worn out.
And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger. Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus, it will all be ok. Somehow.
So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control. After the doctor examined her, and her neck, he asked for a tape measure. He measured “significant” growth since June in one of the right side nodules. “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”
My heart skipped a beat.
“Where did you get that necklace Meghan?” asked the nurse.
“My Grandpa Tom gave it to me. He died this month from pancreatic cancer.”
Sometimes silence really is deafening.
“It may take a few days to get it scheduled Mrs. Ortega. You know, with the holidays…”
Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views. The number is almost incomprehensible to me. I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.
This week Meghan endured ANOTHER MRI. This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with. Irony. Exasperation.
The bright spot came in the words, “There is no tumor. There is no AVM.”
Sweet relief and agonizing frustration simultaneously.
Grateful beyond measure that there is no need for brain surgery. Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.
Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines. Please spare me “It could be worse.” I know. So does she. But I have to tell you about 3 hours after starting a migraine I am done. She has been at it 2 months. She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices. She just keeps plugging.
So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.
Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.
And one day soon she will feel strong enough to get back into the pool for swim practice. Her health has allowed her only about one practice every 2 weeks. Her goals are much higher. Patience.
Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation. We will figure it out. The stakes are too high to give up.
The rest of the stuff. The worries that are just real life worries, and not Cowden’s worries at all. The ones I can’t blog about. They are the ones keeping my heart extra heavy.
I like fall. I prefer the optimism and new beginnings that come with spring, but I do love fall. I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves. I like basking in the mystery and wonder of the beautiful colors as they fall through the branches to the ground, and blow through the air with the brisk wind. But, this year I almost missed it.
I sat on the steps Saturday as my husband frantically gathered leaves into bags so they could stop blowing all over our neighbors lawns. And, in our haste I almost didn’t notice, or even take a minute to appreciate the beauty of what was before us.
A testimony on life, and a sad one.
We, like so many others, are busy. We are painfully busy at points. There is school, and work, and homework. There are Physical Therapy appointments, and swim practices. There are lessons to plan. There is a house to maintain, laundry to do, dogs to clean, floors to wash, and marathon grocery shopping every few weeks to keep my allergy girl well-fed. There is mail to sort – regular junk to be shredded, bills to pay now and bills to pay later. And that’s just here.
There are family members grossly under-visited. There are people we love so much that live right close to us – who we never see. There are friends short distances away we haven’t seen in years.
And yet, usually we find a few minutes in the fall. A few minutes to toss some leaves around. A few minutes to giggle. So many thoughts flooded my mind as the last of the leaves hit the bag for this week. One more clean up and the trees will be bare for winter. And I looked up at that bright red tree above my doorway and took a minute to give thanks.
I needed to give thanks for the tree, above the new roof on the place we call our home. I needed to give thanks for my husband and the family and friends that helped it happen 13 years ago.
The fall leaves, like so many things that happen each year, are a beautiful reminder to give thanks – for beauty, for love, for hugs, for smiles…
Meghan got new glasses this week. She got her first pair in 2009, and her eyes have worsened steadily. As we picked them up, and she said, “WOW,” and “THANKS!” all at the same time – I was reminded of the little girl, who is now a young lady. I am struck by the genuine gratitude as her sight is restored. I am thankful for my vision, and the doctors who are able to help her have clear vision.
Meg Glasses 2009Meg Glasses 2011Meg glasses 2013
“Oh how the years go by…”
I have a friend or two who have given thanks every day this month, and I enjoy reading their thoughts and thankfulness each day.
For me I am thankful – but it’s more like a flow chart. One thing, one blessing, one bizarre set of circumstances leads to me being reminded of how many reasons I have to be thankful.
Tomorrow we go for that brain MRI. The one that will confirm that the suffering endured these last few months by my 10 year old who has seen so much, is “probably” migraines. Brain MRIs really suck. The only part to really be thankful for there is the part when they tell you they didn’t find anything.
These have been some difficult weeks. My heart is heavy, and worn. But I am thankful:
For my daughter, and her unfailing determined spirit.
For my husband, and his loving sense of humor, and his unending patience.
For my parents and grandparents, and the blessings of having them.
For my siblings, as we grow and experience life at different stages and paces.
For nephews of all ages and stages.
For my cousins and aunts and uncles all over the country – and for Facebook for helping me connect with so many.
For the friends who refuse to give up on me, even as I am not available – again. I take solace in knowing they will be there when I am.
For those I love who are sick in mind, body and spirit. Their strength inspires me.
For the doctors who care. Whether they get it right or wrong, my heart is open wide for the ones who care.
For Meghan’s teachers – past and present – school and church, and their ability to instill a love of learning.
For Internet friends – who support when other’s can’t.
For dogs, and their unending loyalty.
For two secure jobs in our home.
For giggling, and tickling and fake hand-made flowers.
For those of you who take the time to follow our journey.
I turned 40 last week and it wasn’t so bad. I am thinner and stronger, and more determined than I was in high school – albeit a lot more gray.
I guess that makes me thankful for hair dye.
And for boobs that don’t sag, and no need for a mammogram.
For size “small” – cause who knew people wear that?
For the Isagenix that taught me to eat nutrient rich food.
For the prayers of friends, and the strength and stamina to endure.
MRI tomorrow. Results to follow. Then, we will give thanks even for the torture of migraines, with the knowledge it beats the alternatives.
MOSTLY I AM THANKFUL FOR HOPE, as the Global Genes Project says – “It’s in our genes!”
beatingcowdens 