I’m not exactly sure how the idea got into her head. At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair. And she decided that she wanted to do it.
For a bit of time it was talk. We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair. Then she got serious.
Sometime right after school ended she decided it was time. So, we went to a new hair salon and had her hair measured.
“Close,” they said. “Come back in about 2 months.”
And, as summers go, time passes and 2 months is gone. We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.
Before…Almost ready…
She was anxious but determined. Confident that it was the right thing to do – she bravely sat in the chair. Her hair was measured to ensure it reached the necessary 10 inches.
Then, even I held my breath as the pony tail was cut off.
And as the hair fell down, the smile of relief sprang up. She saw the life bounce into her hair. She knew it would all be OK.
As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.
Once again, my girl led me by example. Once again her bravery is unmatched.
You see last Friday we found a small bald spot on the top of her head.
Yesterday Meghan got the formal diagnosis of “Alopecia Areata.” It hasn’t got a blessed thing to do with Cowden’s Syndrome. Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer. The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.
Stress can trigger this unpredictable autoimmune hair loss.
We can hope the spot was a reality check for all of us. A reminder to try to take some deep breaths along the bumpy road we travel.
We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen. We go through too much here not to have each other’s trust. I answer questions as briefly as she allows, but I always answer honestly.
There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning. Alopecia Areata is a life-long condition. It may stop now and rest forever. Or maybe it won’t. We just don’t know.
But we are kind of used to that around here. There are no “plans” anymore. Only guesses, and hopes, and prayers.
And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.
For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.
I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m wornI know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have leftLet me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn….
It has definitely been a few extra stressful weeks, and not at all the relaxation we had so desperately hoped for and needed in June.
But, like it or not time marches on, and here we are in the middle of Labor Day weekend.
When we started the summer my daughter had 2 basic requests.
1. Go to the beach.
2. Go to Philadelphia.
Not so hard right?
And then we looked at the calendar about to change to September and realized between appointments, procedures, tests and surgery – we never got either one done.
Stress is very individual in how it affects each of us. We all have stress. We all deal with it differently. But I think that the reality that stress can, and does manifest in real physical illness is often lost on us. Especially lost is the harsh reality that stress can make our CHILDREN sick – until it smacks you in the face.
It became clear this week that the stress is weighing heavily on Meghan. She is one tough chick, but there is only so much the mind and body of a really cute, smart, well behaved 10-year-old should have to endure. It is now the top priority of her father and I to actively work on lowering her stress level.
We started today.
Months ago we purchased tickets to see the Contemporary Christian band, “Tenth Avenue North” in concert in Ocean Grove New Jersey on August 31st. We decided to make a day out of it – or a half day at least!
We let Meghan sleep as late as her body needed. (Falling asleep has become terribly hard again.) Then she got to watch some TV. I ran a few errands, and around 3 with a cooler full of cold cuts for “dinner” we set out to surprise her with a trip to the beach.
We never told Meghan our plan, although it was obvious she was secretly hoping for the beach. We just know too many factors can get in the way on a moment’s notice. So, it wasn’t until we were looking for parking that we even told her.
By then it was 4:15. The perfect time to take a kid who is not really sure she likes the beach, to the beach.
Crowds were waning, and as we set up our blanket she had some time to adjust to the seagulls, and the sand between her toes.
Forever my texture phobic kid, truth be told the sand in the toes was the reason I stopped really bringing her to the beach years ago. But today there was a mission to put her toes in the water and collect shells with Mom and Dad.
She walked with Mom. Then she walked with Dad. And for a few glorious minutes I laid my head on the towel and remembered my childhood days in Ocean City,NJ. I listened to the waves, felt the sand between my toes, and felt such PEACE!
Don’t hate my polka dots – my husband did them for me! 🙂
We have a small bag with some beautiful shells.
We even played some with her Nerf frisbee. There was laughing, and smiling, and a good deal of stating and restating that the sand on her toes does NOT feel nice.
With some gentle prodding she came around, but was perfectly happy with 2 cool hours on the beach. So glad I didn’t get a full day plan in place!
What we did NOT do was have a picnic lunch on the beach as planned. Instead, we ate in the car. Sea gulls, being nothing more than glorified pigeons would have undoubtedly created significant reflux for my girl. So, we had Board Head chicken breast in the car, with potato chips, and had a great conversation – minus the sea gulls.
We walked the streets of Ocean Grove for a bit, and I saw the sign:
And somehow I knew we had done things right – today.
We headed over to the Great Auditorium for the concert. We happily bought our girl her first concert T-shirt, and her “Tenth Avenue North” Bracelet. In-scripted inside the bracelet are words from the cover song off their newest CD, “The Struggle.” It reads, “We are free to struggle, but we’re not struggling to be free.” She is sleeping with it on right now.
The show was amazing. Meghan was enthralled. They are quite the performers.
Meghan and I often sing along to their songs on the radio. Our favorites are “Worn,” and “Healing Begins”
“Healing Begins”
So you thought you had to keep this up
All the work that you do
So we think that you’re good
And you can’t believe it’s not enough
All the walls you built up
Are just glass on the outside
So let ’em fall down
There’s freedom waiting in the sound
When you let your walls fall to the ground
We’re here now
This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark…
The lead singer also spent some time talking to the audience about God’s plans. He told the story of a car accident his Senior year of High School where everyone thought he would die, and no one thought he would recover fully.
That 32-year-old man with a wife and 2 daughters spoke definitively tonight about believing God will use the adversity to grow greater things. He told us he touched a guitar for the first time at 18 while he was waiting to heal from his accident. Clearly, God had a plan.
I was touched by the story, but more moved by Meghan’s reaction. She HUNG on his every word. She was thinking – deeply.
Then she asked if I had any of the “Cowden’s cards.” And, God bless this girl she walked right up to the stage and handed them to one of the back up band members… alone.
“I just thought they should have them Mom, in case they want to read…”
This card was created out of her need to “teach” others about Cowden’s Syndrome.
You know the irony with this darned Cowden’s syndrome is that what you NEED is to be away from doctors, because they cause STRESS which prompts other conditions that cause you to NEED doctors.
So, a few days after the hand became free, we are on the hunt for the solution to more developing problems.
Stress. We do what we can to deal.
We use music. We enjoy time together.
We try harder to get it right. We hug each other. We hold each other.
I still haven’t given up on a road trip to Philly. (If only I can get my navigation system to work…)
The free bird leaps on the back of the wind and floats downstream till the current ends and dips his wings in the orange sun rays and dares to claim the sky.
But a bird that stalks down his narrow cage can seldom see through his bars of rage his wings are clipped and his feet are tied so he opens his throat to sing.
The caged bird sings with fearful trill of the things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom
The free bird thinks of another breeze an the trade winds soft through the sighing trees and the fat worms waiting on a dawn-bright lawn and he names the sky his own.
But a caged bird stands on the grave of dreams his shadow shouts on a nightmare scream his wings are clipped and his feet are tied so he opens his throat to sing
The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom.
Maya Angelou
I am sure this is not what Maya Angelou had in mind. And really for the safety and sanity of my friends and family, I don’t sing – ever. Yet the phrase about the caged bird keeps running through my mind.
Being caged is an illusion in some respects. I have a beautiful house, and a lovely family. We have two cars that work sometimes, so we do have access to the outside world.
Yet sometimes life with Cowden’s Syndrome can make you feel caged. It takes away the freedom, the ability to go as you see fit. It robs you of the carelessness that should be an inherent part of a 10 year old’s day.
And even as some days I want to cry with frustration – my young caged bird continues to sing…
This is the summer of irony. All over the place and in our faces.
Not lost on us are the numbers of family and friends whose privacy I respect too much to mention, but whose lives are upended, and who are in their own right “caged birds.”
All summer we sat at doctors. One after another. Hours upon hours upon hours.
Now- we don’t have any appointments. But the broken wing- the wrapping on her hand and the stitches prevent us from getting too far.
The hand has to be elevated with a Carter Block, until the stitches come out Thursday. Then we can talk about resuming therapy. Today the calendar is empty. The sun is shining. And here we sit.
Not exactly alike – but you get the idea
The pool is crystal blue under the bright sky. Taunting.
I can take her out but if we go too far, or do too much, the throbbing begins again. Maybe we will make a quick trip somewhere just to get out.
I have a million things to do. No shortage of work to keep me busy. But, I can’t seem to get anything done. Irony. You want and want for time to get things done, and then… it’s like I developed a full blown case of ADHD. I can’t keep up with my mind, and the list just grows.
If I take responsibility, some of this feeling comes from my general lack of spontaneity. I am a planner. Much to my detriment. I long to be the one who just gets in the car and goes. But even though I struggle with this and try to gain a glimmer of impulsive behavior, the reality of our lives seems to tether us close to home.
Allergy meals are tough to come by and can’t be taken for granted. Food and enzymes must be planned….The consequences are dire and painful. I won’t take the risk.
So, here we sit. God bless her, and her patience as she alternates reading, TV, and playing with the iPad.
I am working on laundry and the floors, and cutting some 100s charts out of laminate for school. Always moving, and accomplishing precious little.
I am breaking out into a cold sweat as I schedule our next round of appointments. What a feat. Distressing, disturbing, necessary waste of time. I have about 8 scheduled for us from December to February already. And a few others sprinkled in for good measure.
We see the doctor on Thursday. She should get some freedom then. Just in time to set up my classroom.
Maybe I will just open the cage long enough to sit on the deck, or take her for a walk around the block.
Have to remember the little things, because they really are the big things, right?
At the very end of school I received this gift from a 4th grade student of mine. I think it is probably one of my favorite gifts in my 17 years teaching. Small and delicate, yet tough and determined. Not much for collecting things, but this was a keeper.
Meghan continues to battle her way through the pain of recovery. She rests and reads and watches TV to pass the time. She is tolerating the pain a bit better, although the reality there was a scalpel scraping scar tissue off the ligament and nerve in the center of her palm is not lost on her every few hours as the medication starts to wear off.
The day we came home I explained to her (again) about how Cowden’s Syndrome likes to “overgrow” things. We talked about “hyper-healing,” and her body’s desire to overproduce cells to try and solve a trauma. That is a crude explanation of our tumor growth. That same crude explanation can be used to explain why some Cowden’s patients have a prevalence of scar tissue. Every time there is a surgery, or an injury the body over works, and sometimes the result can be just as bad as the original problem.
Overcoming impossible odds. I like the way that sounds. The overcoming part, that is.
So, we talked about range of motion and the need to keep on moving those fingers so the scar tissue doesn’t form and stiffen things up. She knows she will need therapy. She is used to that. She did not like the thought that her range of motion could be affected permanently if she didn’t move.
With raw determination she wiggles her fingers. Several times an hour I watch her wince in pain. No one tells her to. She just knows she has to, and she doesn’t like the thought of the alternative.
See its all about the swimming. Her sport. Her niche. Her comfort zone. Nothing will keep her out of the water for long.
The pain exhausts her. She has circles under her eyes, not from doing much other than being in pain. But for those of you who live with chronic pain – you know that it wipes you out. So she sleeps. 13 hours when she can. Better for the healing I am sure.
When I was dusting this afternoon I came across my friend Penelope Pig, and I thought of how relevant she is.
I thought of all the times in my young life I uttered sarcastically the phrase, “When pigs fly!”
I thought of my arrogance and how little I knew about the important things on life – the things worth fighting for.
I realized in all its ridiculousness, it can actually be a poignant phrase.
I’m going to let this surgery stand in my way – WHEN PIGS FLY!
I’m going to stop swimming – WHEN PIGS FLY!
It fits for so many things in life.
So many other things on my mind. So many thoughts all garbled up inside.
Sometimes I feel like we are running on raw nerve, on sheer will and determination.
We should be professionals around here. We should just get up, get going and move on.
But we are human.
We hurt, inside and out.
We get tired, and lonely.
We understand the tired and lonely that others have too – but some days it doesn’t make ours better.
Some days its hard to look at things from someone else’s point of view.
And that’s OK.
This one is a favorite of a dear internet friend 🙂
Meghan is full of exhaustion and pain and conflicting emotions.
It’s annoying to realize you blew your whole summer at doctors and in surgery.
Thankfully we snuck in that Disney trip.
I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.
She has a smaller network. Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.
Yet, she is my hero. And my rockstar.
I shuffled her around these last few days a lot more than I wanted to. But, she likes to stay close by me when she is hurting.
So yesterday we picked up the car. Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust. He declared my car “not broken.” Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.
It’s definitely still broken. On to the arbitration with the Better Business Bureau. Just in case someone thought we might rest. No worries. Gloves are on.
She went with Felix and I for our physicals last night.
Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records. (Really WHAT was I thinking staying close to home for a doctor?)
She is tired. But she smiles. And she hugs us. And she asks for pain medicine. And she wiggles her fingers. And she looks at her pool, and the calendar, and she feels the inevitable.
I can’t stop it. No one can.
So we keep busy. We rest. I stay close by. We giggle and make jokes. If I had to “lose” a summer, I couldn’t have lost it with a better young lady!
Since before she could talk we have been working to help this kid become more aware of her body. She can troubleshoot what works for her. She can tell me what foods and medicines help her or hurt her. Every day she becomes more keenly in tune with herself. Its necessary. That is how we keep her healthy.
My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions. Those are the situations where doctors might miss something- even if they are trying. Those poor children might suffer needlessly if no one can determine the source of their discomfort.
But not Meghan. If you will listen. She will tell you. If you pay attention. You will understand.
If she hurts- the whole world might know. If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.
That’s it. Plain and simple.
So when she hurt her hand June 4th, I kept waiting for it to get better.
I played tough for a few days, but it still hurt.
Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.
And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon. Each one finding a reason to dismiss her, and this pain that persisted.
Pain doesn’t persist. Not like this. Not with her.
And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated. You never know where those tumors may grow.
But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)
And, Meghan calmly told the vascular surgeon she thought it was an AVM. He said no.
As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.
You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.
“Look at this,” she said to me. “It has its own blood supply. That’s why it stops hurting when she puts pressure on that mass. She is cutting off the blood supply.”
Meghan would smile, knowing she was understood – at least by someone.
“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost mutter to herself.
And I knew if they were BOTH sure, then I was sure they were right.
I emailed her oncologist, and her genetecist. I sent them pictures. “Biopsy those,” I was told in no uncertain terms.
So Dr. Jill wrote a detailed professional letter to a local orthopedist. I am still not sure he understood all the words.
Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered. The MRI report was negative, his Xray was negative, and there was this bump below her middle finger. He sent us away – apologizing for not helping, but convinced there was no need for surgery.
That was the day Meghan coined the phrase “Donkey Butts!” And I couldn’t blame her.
I went right home from that visit and sent a desperate EMail to the oncologist again. This time I asked for a referral.
She is a woman of few words. Her reply was a link, and the words “Go here.”
So, I called and made an appointment. They took our out of network benefits. We got in the day before vacation.
He looked at Meghan. He talked to her. He sent her for more Xrays. They were negative. Then he looked at her hand again. He told her that he knows all about kids and how well they know their bodies. He told us he treats a few boys who grow bone instead of soft tissue tumors. He told her that the boys ALWAYS know where the problems are. She brightened.
Then he drew a very logical picture of the hand, and traced out the main ligament and tendon. He showed the connection from the soft tissue tumor to the painful wrist spot. He let her feel it, and he told her she made sense. She smiled a huge smile.
Finally a doctor who DIDN’T remind me of this one!
The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads. Clearly the tumor on her hand was causing trouble. Clearly it had to come out. Exactly what that would mean once he got in there would have to remain to be seen. Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.
Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand. Chronic pain is absolutely exhausting.
Today was the surgery.
We went to a LOVELY outpatient facility on 42nd Street. The place was clean, the reception was smooth and effortless.
The nurses were darling, every one of them.
The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.
The procedure lasted longer than I expected – almost an hour and a half.
I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”
A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!
So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,” and “THANK GOD FOR DR. JILL!”
I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done. I was also instantly tossed into a new level of worry. See, all along they have been insisting the AVM in the knee was an isolated incident. I shouldn’t worry about more cropping up. Well one just cropped up. Game changer.
I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it. Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM. The soft tissue tumor erupted some time later.
While the exact sequence of events doesn’t matter, a few things do.
Meghan and Dr. Jill are really intuitive.
AVMs can take place in multiple spots.
Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.
Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.
I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.
No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.
And boy have we had practice!
This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.
This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.
As long as…
Well now we fidget and pray and keep busy. There will be time for the rest.
A short time before we headed to Disney, I wrote about taking out Meghan’s push chair for an appointment in Manhattan. She was terribly bothered by the rude stares that greeted us that day.
As a result we talked, a lot. And, like she always does – she comes through those conversations blowing my mind with her introspective maturity.
Don’t misunderstand me. I sometimes worry that my 10 year old is such a deep thinker. I am acutely aware that she has way more on her plate than she should, and she handles with grace and poise a life that would leave many adults weeping under their covers. I wish she told me everything. I know she doesn’t. My heart often breaks for the burdens she carries.
Yet, she is just so amazing.
After we spoke about the rude “starers” she talked about wanting to have a way to let them know about Cowden’s Syndrome. She wanted to raise awareness.
This card was created out of her need to “teach” others about Cowden’s Syndrome.
So she gave her ideas to Daddy and he created this card. We used the logo from the “Global Genes Project,” an organization that has been dear to Meghan since her diagnosis. http://globalgenes.org/
Meghan wears proudly the denim ribbon created for her by a family friend when she expressed a desire to have a ribbon. something she could wear that would represent her.
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”
She dreams of one day seeing another child wearing this symbol. She wants it to become as common as the “pink ribbon.” Because, there are about 7,000 rare diseases, and 1 in every 10 people is affected by one. Many of these diseases are genetic. As we learn more about other rare diseases, Meghan understands the need for the rare disease community to unite. So little research is done on so many of these diseases that they remain poorly understood and under funded.
As we packed for the trip – Meghan asked if we could print some of the business cards for her to bring to Disney. She wanted to be able to hand them out. She knew people from all over the world visit Disney, so it would be a great place to spread the word. 500 cards later, I made sure she had all the tools she needed.
What happened next was just another example of how easy it is to be proud to be her mother.
Meghan decided that instead of getting an autograph book this year, she would take pictures with the Disney characters with her cards.
She also spontaneously struck up conversations with complete strangers all over the parks. She would approach cast members, wait staff, photographers, and guests. She spoke to people from the US and well beyond.
And every time she spoke my heart smiled.
She is an incredibly articulate young lady. She explained Cowden’s Syndrome through the eyes of a ten year old to almost 200 people.
Some of the most memorable included a man and his wife and their service dog on the bus to Downtown Disney, and a helpful cast member from Puerto Rico outside the fitting room as she tried on her Merida dress, and a Disney Photopass photographer whose genuine hug was so heartwarming.
Those were just a few. She spoke to so many people over the course of our 9 day trip that I have no doubt there is a greater awareness of Cowden’s Syndrome in the world than there was just 2 weeks ago.
She will tell you she is not a public speaker.
She might even try to tell you she is shy.
I will tell you she is flat out amazing, and that she is going to do already doing great things.
This child will make the world more aware – one card, and one conversation at a time.
These are Just a few who learned something new this week!
This has been quite a year, for our whole family- but if I am honest, especially Meghan.
This year in January we had the “Santa Claus” chat. And, as careful as I was – I was devastated when some of the magic left her that day.
During this last year, she lost my grandfather, her GGPa. and had her first close encounter with deep loss. Last October when GiGi fell she saw a fragile side of two of the strongest people in her life. She has watched Grandma- my Mom – look after HER Mom, and she thinks- and she worries. Then just a few short weeks ago GGMa had heart surgery. And we have had so many discussions about life these weeks, your head would spin, and your ears might bleed.
That doesn’t even bring into question her own medical issues. This child spent just about every single day- from the day school let out- at a medical appointment. Many if them were routine follow ups. Many others addressed new problems and concerns and left us with more unanswered questions. And all of this – that began literally the day after school ended, will culminate August 20th with hand surgery. This has been the summer.. Well…
So she has been preparing her answers when people ask her how her summer was. Before we even left for Disney she had decided she would tell them; “I love my new swim team, and Disney was great!”
She is smart enough to know most people will not REALLY want to hear what e transpired this summer, and she hates to lie- so we found a happy medium!
That’s because Disney always has been great. But the first few days this year were a little rough. She was struggling, and when we finally got her to talk she explained that she hoped the trip would erase a horrendous July. It didn’t. She was literally expecting the “Magic” to whisk it away.
Then there was that problem with the “magic.”
See for the first time – with the realization that Santa wasn’t who she expected- came the realization that, well, Mickey, and Goofy, and Donald- well you get the idea.
Maybe its fortunate she was too exhausted too much during this trip, so we had lots of time to talk. And, somewhere around the third day she caught on.
That MAGIC- it’s yours. Inside. No one can take it. Sickness, sadness, illness, doctors, surgeries, Cowdens syndrome- nothing!
The magic is there for you if only you believe. THAT is the wonder of Disney. THAT is what keeps us coming back.
The 2013 theme is “Believe in the Magic.”
She gets it. We all do. You have to believe…
Much more about this trip when I am back on my real computer!
That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,
I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.
Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.
Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.
And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!
Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?
And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?
And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.
I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.
Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.
We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.
It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.
But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.
We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.
And yet, “Mom I just don’t feel right.”
My heart sinks.
I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.
There is no fever. Maybe her Dad is right. Maybe I worry too much.
But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!
Or, maybe I remember too much. Or maybe I know her too well.
Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.
We want what’s best for them. We want to help them. They are our lives, our air, our breath.
I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?
beatingcowdens 
