“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.
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.
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
Rare Disease Day
Isagenix – health and wealth
Reconnecting with old friends
Making the time to exercise… cause I like it.
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…”
“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.