With another fall season upon us, life is in full blown crazy mode. And, to be honest, we wouldn’t have it any other way.
Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween. It was such a thrill to watch. FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.
Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee. These are the repurcussions we expect. She is not “normal,” but when she can pretend for a while when it really counts… well that is a great success. And even as she lay still most of the day, she smiled. She sang. Joy.
Fall is full of things, and so far she’s managing nicely. With a marking period to end Friday, Pupil Path tells me grades are at an all time high. Practice 4 times a week has her swim times at an all time low. And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.
She is working with me to plan our second fund raiser in February. We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population. We are acutely aware that to be heard, we need to join collective voices. Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us. Together is the only way we have a chance.
Last year we raised over $12,000 and donated it to the PTEN Foundation (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org). This year we hope to exceed $20,000 in donations.
We have brought in Bob Jackson, a performer from Walt Disney World. He will be flying up to entertain our guests. Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her. We’ve spent her last 8 birthdays at Disney.
Here is a youtube video that is a great indicator of the FUN time Bob brings!
We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.
We have established a children’s menu in hopes that families can enjoy the afternoon out together.
There will be raffles and lots of laughing.
There will be comfortable JEANS and good friends.
We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.
Meghan is living life as a 12 year old who just happens to have had 15 surgeries. She is a 12 year old who just happens to have a Rare Disease. She is a 12 year old who realizes that as challenging as life is, so many others suffer worse. She is my hero. She is MY role model.
Together we will make Jeans for Rare Genes a thrilling success. Hope to see you there!
For the last 6 nights my soon to be 10 year- old has slept in between her father and I.
Now I will pause to give you time to gasp, as wave your fingers at me.
I will give you time to self-righteously proclaim that you “know better” than to put your child in your bed, because once you start “that habit” you will never be able to break it.
Go ahead. Tell me its my own fault that I don’t sleep as comfortably as I could with my 5 foot tall 85 pound child bouncing between clinging to my husband and I.
Tell me I should just send her back to her own bed.
And then – when you are done. Come over. Please. I will even make you some coffee – but you will have to settle for fake milk. No need to keep any in a house where a child has a dairy allergy.
When you come over you can watch her for a few minutes. I will let you watch as she winces in pain, and cries out as she bounces around. And that, that is after she actually gets to sleep.
See before she gets to sleep, there is pain. Always some pain. Always. But some nights, or weeks like this one, it is worse than normal.
There are nights, and plenty of them that she sleeps in her own bed. Right through until as late as we will let her. Those are the nights the pain is at its best.
Then there are the nights she needs one of us to rub her in her bed. A knee, a calf, and ankle, an elbow, a shoulder, a wrist, or even a head is keeping her up. Sure, you could say she is exaggerating. Maybe she is acting like any kid who doesn’t want to go to sleep. But Meghan is above many things, a really rotten liar. So, when she hurts – she lets us know. And when she doesn’t it never comes up – end of story.
The worst nights are the ones like this week. The ones where she can’t even get herself comfortable in her own bed. These are the nights she cries not only for the pain, but also for the raw fatigue that keeps her awake when she would rather sleep.
This week there has been pain. Pain in the legs as she adjusts to swim practice, or plays with a friend or two at a play date. There has been pain in the wrist, the pesky wrist injured now since early June. The one that has to have a problem – we just don’t know what it is – yet. The wrist in line for an MRI/MRA has a pulse to it that is reminiscent of the AVM in her knee. But we are trying not to jump the gun.
If you ever do stop by my house in the middle of the night, to see why none of us have any semblance of a normal sleeping pattern, maybe you can bring a warm compress, or strong hands, and help as we massage cramping, painful body parts.
No one knows the Meghan of 2 AM.
Everyone sees the bright smiley face.
Everyone sees the interpersonal child who talks with everyone – who makes them laugh.
Everyone sees the reader, the friend, the kid who likes quiet, and order, and rules, and helping people in need.
The Meghan of 2, or 3 AM disappears with the morning light. She washes her face, brushes her teeth, and puts on the best smile she can to prepare to face the world.
This is the story of life with chronic, invisible illness.
No one knows about the growths on her thyroid, or the insufferable hot flashes she has.
No one knows about the effort it takes her to walk up the stairs, or to sit and play with friends.
No one knows she is slated for 2 more MRIs, a pituitary function test and a pelvic sonogram – and that’s just the next 2 weeks.
No one knows because she doesn’t “look sick.”
And she wouldn’t have it any other way.
She wears her denim ribbon necklace, the one crafted after the Global Genes Project logo – every single day. And she dreams of the day she will look across a room at another little girl wearing one too.
The denim ribbon is the symbol for rare and genetic disorders, and since identifying her own need to have a “symbol” to wear, like my pink ribbon, she saw to it that one was created to be worn around her neck. She chose to have it modeled off the Global Genes Project- an organization that spoke to her heart soon after our Cowden’s Syndrome diagnosis.
We wear them now, my husband, and Meghan, and I – united in our battle. And we hope that one day there will be more.
Next month we will travel to Disney World, as we have for the last 6 years. While we are there Meghan will use a wheelchair.
Recently, when the controversy hit about the misuse of Guest Assistance Passes at Disney, I was sick to my stomach.
You see I have a child with a virtually invisible disability. She can walk, by the grace of God. She can swim. She can function throughout a day – often with insufferable pain at night.
But what she can not do is walk for long distances. Ever. Regardless of the footwear – no matter how hard we try to prepare. She just can’t.
We took her out of soccer because of the impact. We took her out of dance for the same reason. Now she swims, and even with that sometimes the muscle pain is difficult to bear.
So it is especially tricky for us at a park that necessitates walking and standing. Sometimes she can stretch her legs. Usually she can cover about a half mile on foot. Then she needs to rest. If she pushes too hard on day 1, by day 4 we might as well be back home.
She spent her birthday one year in tears, pleading with me – in the middle of EPCOT that she would go home “RIGHT NOW IF YOU COULD MAKE THE PAIN STOP.” That was the day after we let her walk 50% of the day before.
She hates being confined. She would rather walk. She looks like she should be walking. But she can’t be. Bottom line.
So as I said earlier, those of you who want to judge me for rubbing my child’s sore and aching body so she can rest – feel free. As long as we breathe she will be able to seek comfort in the arms of her mother and father.
And when you see me pushing her around Walt Disney World, I know there are the lowlives out there who abuse the policy, but before you assume that my “normal looking” child is one of them, ask yourself if you have ever met anyone with an invisible illness.
Ask yourself how many children, when given the opportunity, would rather navigate the happiest place on earth from the confines of a chair. Sure we all need a rest some time. But she’d rather have it on a bench. And while we are at it – she would rather be having an ice cream cone like the other kids too.
Just because I teach my child to go through life with her head held high. Just because I teach her to push through pain. Just because I teach her to smile at adversity and to be kind to judgmental strangers- that doesn’t mean she doesn’t hurt. None of that invalidates the 4 surgeries for the AVM in her knee, the thyroid biopsies, the constant scans, the issues yet to be uncovered.
My child knows patience. She knows how to wait. And she does it all year at countless doctors, and invasive lab tests, with grace, and poise and dignity.
So, before you forget what invisible illness looks like- look here. We are too busy BEATING COWDEN’S to acknowledge the judgmental. We teach our daughter to love and forgive. She has too much stress in her life to harbor any anger. We learn our best qualities from her.
Sounds ridiculously cheesy I know. Sometimes the bad things are just crap. And some days just stink. But, not most of them. Really, if I think about it- just a few days now and then really stink. The rest of them seem to hold within them some lesson, some joy, some laugh, some memory – something that makes my spirit richer than it was before.
Don’t ever delude yourself into thinking things are perfect here. That would be a lie. We have our whiny, cranky, in each other’s way kind of days. But that’s not most of them.
Lots of rotten things happen to everyone. But lots of good things happen too.
Lots of rotten things happen when you have Cowden’s Syndrome. Sometimes the key lies in looking at things from a different perspective.
Every moment. Every meeting. Every diagnosis. Every doctor’s appointment. Every report read. Every bill fought for. Every new teacher. Every new friend. Every old friendship renewed. Every miracle. Every ordinary moment. They all bring us to where we are.
Maybe I have watched too much sci-fi with my husband, but to change any one thing, any event in our lives, could alter the course of our lives.
I won’t spend time wishing things away- certainly not the good, and definitely not the bad.
Sometimes the lessons hurt. Sometimes they make us cry. Sometimes, like when we say goodbye to dancing school, and all its emotional joy, coupled with insufferable physical pain, we get a little sad.
Then we say, if it wasn’t for dance, we wouldn’t have learned love of the stage. If it weren’t for dance we wouldn’t have seen a growth in confidence, and an ability to manage a growing young body. Losing dance is hard…
But if there wasn’t Cowden’s, and chronic pain, and an inability to deal with impact – would there be swimming?
Private lessons at a local college start Saturday. Regular practice begins the next month. She salivates when she gets near a pool. She just wants to get better and better.
New sport, new school, new friends, and old ones too. Same old pain. Same nasty viruses. Some things change, and some remain the same.
Sometimes I wish (quietly to myself) that life could be a little bit easier. Then I look at my daughter, and my husband, and my dogs, and my house, and I think – things are just fine right here.
We have each other – for the ups and downs- for the ins and outs.
They say if everyone had a few moments with everyone else’s problems, they would fight to grab their own back.
While in some ways the decrease in stress these last few months, plus the return of Physical Therapy twice a week, have helped her pain – but, it became increasingly evident dance was just not meant to be.
She was sick, and missed class. Then she was hurting, and missed another class. She missed the dress rehearsal and trophy night because she was home from school with a low fever. Always seems to be something.
So as we headed out to “Candyland” yesterday morning, we all knew it would be her last recital. The dancing takes a toll on her joints that it would be foolish to keep repeating. But, that didn’t dampen the mood on the soggy Sunday. Meghan was ready.
We started her day with the electrolytes from Isagenix that help her so much. Then we left her backstage at the theatre with all the other dancers.
It can get long when your dancer is in number 25 in a show of 27 acts, but I find the other dances entertaining, and before we knew it – she was on stage, ready to shine.
There was no pain evident in that body as the rush of being on stage overwhelmed her. She smiled and moved in ways my body just never could – or would.
When I met her at the stage door to bring her to her waiting father and grandparents, I had some flowers in hand for a job well done. She knew this was it for her, but as always – she kept looking forward. “I will get on stage again Mom. Maybe in Junior High, maybe in a theater program. I can’t keep dancing, but I love the stage.”
We took lots of great pictures. We cherished the memories. We enjoyed a nice lunch of Gluten Free pizza.
Yesterday was a rush
Today came the pain. The elbows, the knees. An epsom salt bath, and some relaxation. It helped some, but its hard to tell. She is so used to the pain.
And as she headed to bed, “How many weeks until my swim lessons start?”
Cowden’s Syndrome, you SOB. You may have me exhausted, but you picked a worthy adversary in my girl. She will not go quietly. She WILL win.
“Beatingcowdens” Not just a blog title, but a way of life.
It seems they are happening all the time, probably for everyone, but this week we are really feeling them.
When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.
Watch this. Scan that. Come back and see me about that… UGH.
So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream
She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?
Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.
Transitions. Things are ever changing.
First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?
No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.
Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.
Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.
We are finding our new roles, as people charged to raise awareness, and to spread the word.
It sounds so dramatic. I guess maybe its not such a big deal. But today it feels like one more thing on a list Cowden’s Syndrome has robbed her of.
Meghan was never going to be a performance dancer. She wasn’t going to do ballet for hours. But, for the last 3 years, she has taken one dance class a week.
Not because she knows the music, but rather because they dance in sneakers – and that is better for her joints.
I can’t say enough good things about the studio. The owner is a compassionate, kind, professional, lovely woman who strives to make every child feel like a million bucks. She revels in their accomplishments. She celebrates every ability level. She truly loves children, and dance.
This place is the perfect fit for Meghan.
Her joints acted up in the fall. She missed a month before she could get it back together. No worries – no sweat.
A few weeks ago she twisted an ankle at dance. Xrays, a sprain. A week or two off.
Then there was the shoulder thing. Not dance related – but it still cost her some time.
And then tonight. I picked her up from class and her flushed face told the story before her teacher had to.
“She hurt her hand, but we don’t know how.”
EFF YOU COWDENS!
So, I took her home. There was a shower, and some ice. Nothing more than a light sprain I am sure. But her back hurt too. So we put her to bed very gently. And we spoke about maybe finding ways to increase swimming instead of maintaining dance.
The recital though is such a rush. She loves it. She loves being on stage – the energy. The celebration.
Physical Therapy tomorrow morning. We will let Dr. Jill input her thoughts – although I already know them.
She is pretty good when she dances. She is a quick study. She has made so much progress. And she has some moves. (Those are NOT from me!)
She will ultimately get to decide. Although its probably for the best to back out now – before she really gets hurt. The final decision will be hers. So I say.
In reality the final decision has been made by Cowden’s Syndrome, and its ruthless attack on her joints and muscles, and connective tissue.
She is resting peacefully – for now. But I am cranky.
Things tend to work out as they should, but I am still waiting for this little girl…(young woman…AAAKK!) to catch a break…
Meghan left tonight for the Father Daughter Dance with her Dad. I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life. She needs that time – to be happy and carefree. She needs time to just be a kid.
I looked back on some old photos from dances in years past. I know it sounds cliche, but I can not believe where the time has gone. It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.
I think she took it better than me.
I cried a lot this weekend.
I think I am angry too if I am honest. I think I am not just sad, but angry.
And that’s ok. I have to let myself feel even the ugly emotions when they are in there.
I am angry about Cowden’s Syndrome. I am angry about the cloud it carries, even on the sunny days. We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played. Forever.
I have said before, and I will say again – if it was just me…
But it’s not. It’s her too. That is reality, and it really does torture me sometimes.
All parents feel pangs of sadness as their children grow. And, Meghan being my one and only, I am sure the pangs sting extra hard. But, there is more than that. We deal with something most parents don’t.
As her age increases the looming cancer threats that Cowden’s carries with it increase as well. At her age, the biggest threat is thyroid cancer, and we are battling the beast head on. We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back. All thanks to Cowden’s Syndrome.
But, as she grows and matures, so does her body, and with it her wisdom.
She looks quizzically at my silicone breasts and her own developing ones. She wonders. Sometimes to herself. Sometimes aloud. When will it be my turn?
She asks if she will be able to have children, or if she will need to have her uterus out first. She asks that if she does have children… do they have to have a PTEN mutation? Do they have to have Cowden’s Syndrome?
Too many questions to flood the mind of my 4 foot 11 9 year old. Too many questions for the string bean with the developing body. Too many worries for my baby girl.
I am angry. But thankfully she is not. She takes each day as it comes. She accepts the eventuality that one day the biopsy will not be negative.
I sheltered her for a long time, but they made me lay it on the line this year. So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month. I told her there was no guarantee she would get cancer. So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer. The number is small.
So we talked about the benefit we have that others don’t. We talked about how constant screening means we will beat whatever beast tried to get at us. We will be vigilant.
We will win.
I get angry sometimes. She just finds other ways to make me smile. She keeps my heart soft. She is my rock. Wise beyond her years, and still a kid at heart.
I hope you and Daddy dance your hearts out tonight!