With the recent ALS Ice Bucket Challenge, we have seen ingenuity lead to a spike in funds and awareness for a horrendous disease. Fundraising for the organization is at an all-time high. I hope, sincerely and with my whole heart, that this influx of funds is well-managed, that it gets into the hands of researchers, and that is yields major steps towards a cure for this heart-breaking syndrome.
All this awareness raising got to me this week. We donate what we can to our church, and various charities near to us, but this week I got reflective. I donated to ALS and three charities that were not ALS, and have nothing to do with PTEN. My donations will not impact the world in an earth-shattering way, yet it felt good.
I’m getting my gold porch light ready for September – Childhood Cancer Awareness month.
Other people suffer, and all of us – disease specifics not to be debated, could stand to have a cure around
But, regardless of your opinion, I think this ALS Ice Bucket thing did more than raise awareness for ALS. I think, it increased our awareness of humanity and other people’s struggles.
A few days ago in Costco I had over estimated my strength. And as I wondered how I would get the chair into the car, two gentlemen came from nowhere. Different places I might add, to work together to fit the chair into my car.
Then I received a card in the mail. It had a check enclosed for us the for a charity of our choice, or something fun. The handwritten note told me that Meghan and my story was impacting at least one life. The need to keep sharing was renewed.
And I connected on Facebook to a man who we met in Disney last year. He and his wife and Meghan struck up a conversation on a long bus ride. He had a service dog. She was enthralled. She was raising awareness of Cowden’s Syndrome. He tried several times to send me a link to a song that made him think of Meghan. He was finally able to get it through. I cried. My little girl is making a difference and this man took the time to let us know.
In the mail was a package from a friend, a former student, with a “big sister” type of compassion for my girl. There was a letter (which wasn’t for me to read,) and a key chain for Meghan, and one for me too.
None of these people could have known I was having a pretty tough time. I don’t so well in chaos, and the house was absolutely upended. In the year that everything broke, the bay window was being replaced, the house needed new… lots of things, and the leak in the pool was becoming evident.
Random acts of kindness.
That’s why they matter. So much.
We try to pay it forward as much as we can. So special to be on the receiving end as well.
Whatever the cause. Whatever the reason. An increased awareness of others will make the world a better place.
Do something nice for no reason. With no expectation of anything in return. Just because.
Growing up I didn’t spend a lot of time with my father. Despite some really fun day trips, I didn’t really know him well at all.
My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day. We got to know each other quickly and well.
And that’s my tale of two fathers.
Ken has been a constant in my life since I was 15. He loves me like his own, and has treated my as such, without fail, and in all things. I adore him.
Dad struggled after Vietnam, after horrors that I can only imagine. He struggled to find his way, and to find the balance. He married twice, and had three kids, then he spent 10+ years in a long relationship. He lived all over. He worked to add his charm and personality to nightclubs all over NY. He knew how to live on top of the world, and at its bottom.
Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights. We spent more time together. He came to dance recitals and swim meets for Meghan. He came to my house for gatherings, and just to be with us. We liked having him around. All of us. Even the dogs.
I got to have two “Dads.” While one is called Ken and one was called Dad, the terms are synonymous. Two very different people. Very lucky girl.
And I used this time to catch up with Dad. We would talk on the phone a lot, about anything. Sometimes he would talk. And when he did, I listened. When he really talked about old stories I sometimes even took notes. Because I didn’t want to forget anything. I don’t think he would have loved that idea. I suspect he would have thought it wasn’t worth my time. But, it was.
Lots of times I would talk. He was a really good listener. He knew when to interject and when to stay quiet. He knew when I needed to hear advice, and when I just needed a sympathetic ear. Sometimes I get overwhelmed. And I just need to offload, without judgment or solution. I called every Friday that I grocery shopped. Sometimes we talked for hours.
And the years saw a transformation as he was being treated finally for the PTSD that had tormented his every move since the war. He didn’t talk much about it, but every once in a while… it was my turn to listen carefully. And I did. Gratefully.
Then the conversations started to include talk of him being tired. Looking for energy. Millions of excuses listed, tried, tossed. Then there was the jaundice. And the blockage. And the pancreatic cancer. And within about 10 weeks my sister and brother and I said goodbye to our Marine. “The few, the proud…” to the very end.
Dad was a philosopher. Sometimes I was right with him. Other times we didn’t quite agree. But, it never mattered.
And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time. And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister, and my siblings and I took him to the fancier hospital. And we asked some questions. And we talked a lot. But, it was done. In the end it was just time for it to be the end.
But I was not, and am not ready to let go. Maybe that’s unhealthy. Or maybe that’s keeping the memory alive. Whatever.
Dad, stopping by?
It took weeks to clean out his small apartment. I touched every paper. I read, and sorted, and filed. I made more binders, and file folders. I shredded only with great care at my own dining room table. And as I sorted I found little scraps of paper. Little random thoughts. Notes. Scribbles of Dad’s. So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister. And I laminated the originals for me. And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes. Almost like a chat with Dad.
Tonight I flipped open to the words, “A tranquil mind is not a little gift.”
And I paused. And I smiled. Dad’s mind was not always tranquil. But in the end it was even through physical torment. He had lived enough emotional torment to know “A tranquil mind is not a little gift.”
I am a worrier. Not a shock to those who know me even a little. But, also not unfair, all things considered.
This was a light week here for doctors. Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint. Oh, and one random really large pathology bill that was clearly not done right. The appointments were fine. One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth. The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus. (If only I could get a scheduler to do these things…) And the fight of course was with my doctor. The office staff of a vascular surgeon for a procedure I definitely need soon. I’m in the market for a new vascular surgeon.
But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.
So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday. Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.
Not that we WANTED a new window. We just bought the other one 14 years ago when we moved into the house. But about 2 years ago there was this little black spot that kept growing. And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house. By the time they came the little black spot was large and clearly water related. So the nice man took pictures and the conversation was about replacing the center of the window. Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced. But since the window was over 10 years old we’d get a percentage off the cost for the window and installation. Um, well that price was so wild we bought the window ourselves. And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.
It was supposed to be a half day job. It was supposed to fit right in. And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off. But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm. That wasn’t the inside.
I like the house neat. Actually I need the house neat. And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up. But I can’t and I won’t. Because it’s a control thing. I know it. I’ll own it. I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time. I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way. But, through much experience I have found it markedly easier to handle every single crisis with a clean house. Something about having order in the home, gives me some sense of peace when the waters are very rocky.
So, at 11 on Saturday night I looked around and began to freak a bit. That’s when we decided to paint. It was time anyway, and the house was on its ear so to speak. So I prepped the room and there was paint. And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.
Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape. There are two rooms with that peaked roof and lots of floor space. (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves. It has taken 4 weeks to clean out and move her, but we finished today. And as I sat in her room I cried a little. I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared. I was right to be scared. Some scary things have happened in the last 11 years. This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.
It was a good time to move. Junior High starts in just a few days really. A whole new school. A new chapter. Turning point. And as she decided what to keep, toss, and donate, her personality began to shine through. With just a few pictures left to hang, she has created an atmosphere that is representative of her. Now to keep it clean and clutter free… 🙂
But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!” I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days. One too many trips up the stairs, or on the floor sorting things? Who knows. Just like the headache that’s been around one day too many. Sinuses, allergies? God, I hope so.
At some point I’ll have to go to sleep tonight. And tomorrow will be for more appointment making, and dealing with random bills. The side of the house is littered with trash. There are 10 bags being donated Saturday morning. The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work. But my sanity is being restored.
And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.
So much flux. Moving Dads things in earlier in the year jostled the basement. Moving Meghan upstairs caused some purging. And slowly everything is coming together as it always seems to.
I think of how many times I would have called my Dad this week. The number is too high to count. I miss him every day.
He told me once to keep writing, to just keep letting it all out no matter what I thought of it. So I do. And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.
Tonight I think calls for a glass of wine, and some reflection. Gratitude for an almost “normal” week with largely “normal” problems. Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…
Nope, not us. No way. No how. Terrifying. Not going to happen.
Until last week.
Something clicked inside her head, and she decided that she had come to conquer.
There was a pit in my stomach when she first declared she was going to go on Space Mountain. Roller Coasters have never been my thing either.
But, she even decided who was going to sit in front of her and behind her. No getting out of it for me.
She told me that she had been through a lot in her life. And that she shouldn’t be scared of a ride. True. There was that quote by Eleanor Roosevelt we had read, and referred to so many times.
No not the other quote, “The only thing we have to fear is fear itself.” – FDR
This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt
The first time we were both a little scared. Then there was the second time. And by the third time she owned it.
“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago. Twice. I went too. And I really didn’t mind.
“Life begins at the edge of your comfort zone…” Words I am learning to be truer each day.
And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together. I did Star Tours too, but virtual reality isn’t really agreeing with me anymore. Maybe too much reality?
So she went on Mission Space with her Dad – twice. Once on the beginner level, then on the advanced. And they rode Splash Mountain too – just because.
It makes me happy to see her conquering fears. There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.
And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…
“Never settle for the path of least resistance… I hope you dance…”
“I Hope You Dance” – Lee Ann Womack
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.
There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.
We are blessed.
We have a beautiful, witty, articulate, charismatic and spunky young lady.
She knows pain, and she knows it well. And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot. But, there is sparsely a day with no pain.
She knows competitiveness. Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.
She knows intelligence that book smart children know, and she knows the perspective that few adults can master. She can look at other people and want to talk to them. She can wonder about them. She can empathize with them.
She knows what its like to be sick. And in surgery. With IVs, and needles, and scars, and recoveries. She knows what it’s like to never be “well” only watched.
She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.
Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others. With and without our syndrome – who fight a battle unbeknownst to us.
Meghan doesn’t use a wheelchair at home. For this I am grateful. Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us. We practice a deep understanding of reality in Disney World.
Meghan’s pain, so much of it, stems from repetitive motion. Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions. So Disney, by it’s very nature, and its wide landscapes requires much walking. And, as we try every year, even with a little here and there – the pain is deep and inevitable.
So for that week every summer she gains an even greater perspective. She lives in a wheelchair. With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.
And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus. And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair. This beast, this Cowden’s Syndrome we fight. Well we fight to win. But who can know?
I stop myself from wondering too far ahead and I reflect. On the old me. The me who used to look at people in wheelchairs riding buses as an inconvenience. A delay in my precious time. The me who used to judge and try to guess why they would need a wheelchair. The same me who used to judge a lot of things.
We will unpack.
The wheelchair will be stored. Hopefully for a very long time. But, it will be there, in the basement. In case. In case we need it for anything. Because the pain, well it’s always there.
Fortunately, she is in a position where her stubbornness still has the power.
And I will think, as I drive her back to swim practice in a few weeks, about the other mothers. About the ones who wish their child’s wheelchair use was temporary.
And I will think about the phone call I got this week. The one about the AVM growing in the knee again. Timed on the same day she was vomiting in the hotel room. And I will be grateful that we don’t need surgery right now. And I will be grateful that it is not in her head, or any other life threatening spot.
I am humbled.
By her grit. By her stamina. By her determination.
It’s been almost two weeks – a long time for me not to write. My head is spinning with things I need to get out in my blogging “therapy” sessions.
As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.
Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.
Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis. (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip. But we knew that would seem more like a punishment than a precaution. So the reservation held – August 5 -12.
In the week leading up to the trip time seemed to fly by. I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time. And as we were packing I began to gather food. See, when you travel with a kid with food allergies, you don’t travel without food – ever. Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.” There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars. In the past we also always packed tomato, and barbecue sauce too. Every morning we would fill small containers and have it to flavor anything dry along the way. Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.
So, we went to the next best thing – avocado.
I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated. She liked it to moisten food, and there were plenty of days she ate a whole one. So, into the suitcase went a container full of 8 avocados.
Use what you know.
And in another container nearby were several packages of Isagenix shakes. Those, I had packed with intention of using them myself. So glad I did.
When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30. We rode the Magic Express and got to the hotel by 10:30. At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.
And find the Magic we did.
We spent the day riding, and laughing, and watching and taking in all the wonder around us. We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection. Her stomach was happy. We were happy.
Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.” The “Fab Five” greeted us, and the chef took us to the buffet. I tried to choose carefully, as the selections seemed a bit questionable. I was assured they were within her dietary restrictions. And there was the drink. We asked for it diluted, as it wasn’t her normal fare. But he was busy and I suspect by the third glass the waiter had forgotten to dilute it. And there was the GFCFSF sausage… and…
By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat. She asked me for food, and even as I handed over the pretzels I should have known better.
She slept fitfully. So much so that I kept waking to check on her.
“New room… new place.” I kept telling myself…
And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.
“Houston… we have a problem.”
We exchanged those “uh-oh” glances – Felix and I. And we followed her to the room.
And barely did she make it in the door then the familiar violent vomiting from May returned. So much. So forceful. Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.
It went on for hours in our hotel room in Walt Disney World. And every time it seemed to calm and we tried water, bread, pretzels… it all began again.
We called our GI from home who instructed rest. And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure. After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.
And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time. There are good people.
But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.
He was amazing, and unusual, and smart, and introspective. And he sat with us for a good hour learning about Meghan. Then he sized up that she was not dehydrated.
“What do we do?”
“Go with what you know.”
Not so easy hundreds of miles from home. But, she was hungry. And there were avocados. And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.
Then he asked what she drank and we said “Coconut Milk.” And just like that he was out the door headed to a whole foods 6 miles away. HE took money only for the milk itself, not for his gas or his time. And we had options.
WHO does that? This stranger… this “standby doctor” so moved and so interested in helping…
So there was avocado, alternating with coconut milk at very deliberate intervals. And once the avocado held itself in place we had a few options.
“Can I have a shake?” MUSIC TO MY EARS…
A half shake in 8 ounces of coconut milk. Followed by a half of an Isagenix meal bar.
By 9 she was well enough for a ride around the hotel.
By the next morning we cautiously resumed our trip. With Isagenix, and an avocado in my backpack all day.
Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!
This post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.
Proceed at your own risk.
The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”
The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they…
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