Walt Disney World Resort – beatingcowdens

“What are you celebrating?”

Published on January 20, 2013January 20, 2013 by beatingcowdens3 Comments

I am awake earlier than the rest of my family. My big dog took a container of Meghan’s gluten, dairy, soy free chocolate chip cookies off the counter last night while we were out. I think she will be fine. She just had her second dose of activated charcoal, and she seems to be resting comfortably. But. EVERYONE knows who the Mom is when they are sick – so she and I BOTH had a long night. (and I am sending her Daddy out to clean the yard! :-))

Allie - The Cookie Monster — Allie – The Cookie Monster

Last night we headed to Manhattan where we celebrated Felix’s sister’s 50th birthday. It was a crowded room, and although the food was quite good, I had a tough time being so cramped in. My little girl, as usual amazed me with her calm, patience, and poise. I asked her before we left of she wanted me to ask the restaurant to cook for her. She said she wanted me to pack her dinner. She doesn’t trust very many places to “get it right,” and she did not want a belly ache.

So. she put on her fancy dress. The one she is so EXCITED to wear to the Father/Daughter dance hosted by her school Monday night. I put her hair up and stepped back. This child has always been mature beyond her years, but when did her body start to catch up?

We sat, for a few hours. There was minimal time to walk around, but when she did get to talk she vibrantly retold the story of how she lost her last baby tooth, and the Tooth Fairy left her $20 and a Tigger pin! Way to clean up on the last tooth, None of the others were worth that much!

Magic. She brings it back into our lives. She rounds out her father and I. She is a princess. Yes, she has just about everything she has ever asked us for, but she has a whole lot more. She has compassion, patience, maturity, and wisdom. She has kindness and generosity. She takes pleasure out of making people happy.

My mother always said, “Children should be spoiled, just not spoiled rotten.” Doing our best Mom. It seems to be working out ok.

Before I started writing this, I was searching the Disney website. I was playing around with prices for a summer trip. We have taken Meghan to Disney in August (usually for her birthday) every year since she turned 5. My house has photos in every room that remind us of our adventures. We have had the happiest of times at Disney. We enjoy each other. And, I have to say, the year my parents joined us, was one of the best vacations.

We started going to Disney because of their accommodations for allergies. It is almost impossible to maintain a gluten, dairy, and soy free diet for a week without staff trained to take every allergy very seriously. And while we struggled a bit last year to find “quick service” food for her, on the whole we have had only positive things to say about our Disney dining experiences. When you have a child with allergies, you plan your trips a little differently. Everything else falls into place, AFTER you know they will be well fed.

Disney also accommodates her chronic joint pain. Even with the Celebrex she could not endure the miles of walking we do each day. She travels Disney – walking some, but spending the majority of her day in a portable wheelchair. We always get a room on the first floor to avoid extra steps, and in the event those knees give out, every park has everything from Advil to heating pads to help with the pain.

Not to mention the Magic. I believe in the wonders of Disney. I believe in the smiles of hugging Chip and Dale, and Mickey and Minnie, and all their friends. I believe in the smiles on my girl’s face. I believe in the memories we are making – that no one can ever take from us.

So, this morning when I ran the prices of the trip through the computer I choked a little. It, like everything else, has gone up a good deal since last year. And, for a brief second the thought of not going crossed my mind.

I mean, the deck needs major work, we still haven’t finished the upstairs. There are plans for the basement to be redone, and the backyard needs help. What about that awning for the blistering sun in our back yard. Plus, this year forced us into a new car, braces….

Then I saw the question in the corner of their website. It said, quite simply, “What are you celebrating?”

Well, that did it. We are celebrating all right. We are celebrating Meghan’s negative biopsy. We are celebrating the knowledge we have gained from our Cowden’s Syndrome diagnoses, and the ability to “strike first.” We are celebrating that after a long stretch of studying, they offered the Electrical licensing Exam, and Felix passed part one on his first try. We are celebrating the love of friends, the kindness of stangers, and the compassionate heart of my little girl. We are celebrating the power of God and the Holy Spirit to lead us to a place we worship together as a family each Sunday. We are celebrating “more birthdays” as Meghan will turn 10 and Felix 40 during that hot August vacation. And I could go on and on with the thoughts that flooded my head in reply to that simple question.

So today I will finalize our trip. I will be sure to get “trip insurance” in case life tosses us any more curve balls between now and then. We may not finish all the projects around the house this year either. But we have lived here for 12 years now, and its a pretty nice place to be. The projects, the bills – they will get paid for and finished.

The magic may not last forever. We have learned as a family to stop and enjoy the ride. We are celebrating our countless blessings. God is good. Life is good. Family vacations are worth celebrating.

Maybe it wasn’t a “Total Loss”

Published on December 2, 2012December 3, 2012 by beatingcowdens4 Comments

The Insurance Agent called Friday night. He told me my car was a “Total Loss.” I think I knew that after I saw this picture the first time, but it was still a little hard to hear.

Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me. To me, a “Total Loss” means I didn’t learn anything. It was a waste. I took nothing from it. That couldn’t be farther from the truth.

I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day. Sometimes what I take away is positive, and sometimes – not so much. But I always, always learn something.

1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.

2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.

3. When you ride in an ambulance its less scary when you take someone you know. And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all. There are real live angels among us!

4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls. Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.

5. There are some really really nice insurance people, and some really obnoxious ones.

6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.

7. The pain is worse before it gets better.

8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride. Especially when you know you handled it right. It is hard to get over hurt pride, but you can find peace with a clean conscience. So glad I have one.

9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you. It’s all about the stop sign.

10. Whiplash, and muscle spasms are real. Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.

11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us. (Thanks Angel Meghan… and all the others)

12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.

13. Fax any important test results to a doctor you trust. I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please. The hamartomas are growing. I will talk to my doctor at NYU this week.

14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess, I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps. I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf. I have parents in my school fully supporting me and working to gain signatures on a petition. Their children’s lives are in danger every day. I want some things to change to make the children safer.

15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant. Always marry someone with a sense of humor.

16. Wear your seat belt! Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either. So glad I was buckled up.

17. Those silicone implants can take a good hit. Thankfully – nothing popped!

18. I am not going on the teacups at Disney World ever again. I have had enough spinning for a life time!

There… not a “Total Loss” at all…

Bookends

Published on August 31, 2012 by beatingcowdens1 Comment

So my little girl took some of the influence of her Dad and has taken a liking to comic books. She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea. I like Superheroes, and their “Good beats evil” message. I know it doesn’t always work out that way, but she is 9…

I sat in the MRI room with Meghan tonight – again. And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.

Yep, bookends. See, back in June, on the first day after school was out for the summer we went for an MRI of her knee. It was a Thursday, the Thursday before July 4th. So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.

Bookends. Our summer ends the way it began, waiting for test results. Although I am starting to get the feeling that this testing and waiting will transcend all seasons. I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)

And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago. This is what we do.

We do not accept anything less than an answer that makes Mommy comfortable. When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point. When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow. My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it. So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder. That is what the MRI was today. My fault. I needed to have them rule out a pituitary tumor. We have Cowden’s Syndrome. We grow things. Someone should check. Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.

And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue. He wants to see her the next time she has strep. He shouldn’t have to wait too long. He also told me the right lobe of her thyroid was quite enlarged.

So we wait for the thyroid panel, and wonder if it has changed drastically. And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.

Bookends.

We started the summer at the doctor. We spent most of the summer at the doctor. Scan this, check that. It will never happen like this again if I can control it, but it was necessary this time.

And in between the bookends of MRIs, we fit in some fun stuff. There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.) There were some lazy days, and lots of just being together time. We can get a lot of talking in on all those trips to the doctor.

I guess the summer wasn’t a total loss, and yet still somehow I feel sad. Cheated. I stress at the thought of the scheduling complications being back at work brings. Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough. Complicate it with Cowden’s x2 and it gets hairy.

Maybe I feel like this every summer. Maybe I just love my girl too much. Time marches on. School next week ready or not!

The Carousel of Life

Published on August 22, 2012 by beatingcowdens1 Comment

41 Carousel of Progress[3] — How can you tell if it’s really progress?

When we were in Walt Disney World, one of the rides we went on was “The Carousel of Progress.” Now I must admit this isn’t one of my all time favorites, but it does serve to cool you on a hot August day, and provide some food for thought.

For those of you who have never been, it starts out in the early 1900s and has several scenes detailing progress through the years. Of course, with all progress, there are a few snags along the way.

The state of the art kitchen in the mid 1900s, looks nothing like the state of the art kitchen in the 21st century.

And I think the lesson to be learned by those of us cooling off in the comfortable Air conditioning, is that with every new change, we lose a bit of the old. It is often beneficial, and frequently necessary to improve, but we need to keep an eye to where we have come from so we don’t lose ourselves.

So why was this on my mind – aside from sorting out the Disney Photos? Today was a doctor day – again.

Today we took a 2.5 hour (should have been 75 minutes) road trip to Long Island to see Dr. E. People ask me all the time who he is, and why we see him. Well, the truth is, he is kind of our “think outside the box” doctor.

We first met him in 2005. Meghan was severely delayed in many areas. Her behavior was at times scary, as she was having fits of rage that were tough to manage. She was bloated, and her belly was in terrible shape. She wasn’t speaking much, and her speech and occupational therapists were starting to whisper “autism” to me.

Not feeling at all like that was where she was, we headed to see Dr. E, a DAN! (Defeat Autism Now!) practitioner. He had been a pediatrician for over 20 years and had recently made the change to treating children with biomedical interventions.

It was a scary commitment to see such a doctor. There was no insurance at all, and the initial out of pocket fees were frightening. But when we sat and spoke with him, and he told us about the ways he was going to help Meghan – he meant it.

It is 7 years later. My daughter is a far cry from that sensory sensitive, sickly, silent, little girl we brought him in 2005. We have gone through countless lab tests, various diets, vitamin and mineral supplements, prescription and non prescription medication. He has seen us through her gall bladder attacks, and has answered my texts and Emails at the most obscene hours.

Progress. At a cost.

Not just a financial cost, but an emotional one too. And now we hit a crossroads again. Progress is at a standstill in many ways. (Not in the bright, articulate, funny girl, but in other ways people don’t see.) The strep is returning to life on a regular basis. Her development is not agreeing with her hormone tests. Her belly bothers her, and she needs medicine to help her sleep.

I spoke with him at length today. He wants me to see a very intelligent nutritionist in NJ for a very specific test. It will uncover some of the “mysteries” we are missing, he says. We are past the point where we can look at her and treat her. She appears well, but there are too many things that don’t make sense.

What about the Cowden’s I ask? What about the PTEN? Isn’t that the cause?

To which he gives me the honest, “I don’t know. There isn’t enough research.”

But, he insists what he does know, is that we will gain a wealth of information from this test.

It is costly, and there is no guarantee the insurance will cover it. But, she is worth it, and we will likely set it up. The question is when?

School starts in a week and a half. I have 2 appointments tomorrow, she has 2 Monday, and another Weds. There comes a point where we have to stop running like this.

carousel ocean city NJ — The Carousel in Ocean City, NJ

When I was a little girl we vacationed in Ocean City New Jersey. I used to like the carousel, but I wasn’t as daring as my sister – who would lean over and reach out for the rings. I liked to hold on – tightly.

Some things haven’t changed.

I think about this carousel as well, moving in circles, sometimes seeming to get nowhere.

I find all these appointments all consuming, almost overwhelming.

Then I stop and think – it’s not about getting there, it’s about enjoying the ride.

Progress will come…

Fireworks in My Heart

Published on August 20, 2012 by beatingcowdensLeave a comment

_DSC0252 — After 12 years of marriage, I still feel fireworks for my husband!

When we were vacationing at Disney World, we stopped one night to see the beautiful fireworks show at EPCOT. My husband captured a few great shots, as I sat with Meghan and watched the show in awe. It was such a wonderful, peaceful, “normal” night, and I relished every second.

I watched my husband, practicallly laying on concrete to take photos – partially because he loves photography, but also partially because he knew I was photo obsessed this trip – and I couldn’t help but think how much I adore him.

Those wild days of dating and hot romance have toned down into a sense of companionship, but there is still plenty of passion in our lives. He can give my stomach a flip with a touch, or a hug; with a quick kiss or a slow one.

I loved him soon after we met. I loved him more when we married, but I never could have imagined I’d be this in love.

He has held my hand this past year alone, as we watched Meghan be wheeled into surgery for the 9th time.

He lovingly drained my drains after the mastectomy. He held me, and reassured me. He told me I was still beautiful, and even helped me believe it.

And, when it came time for the hysterectomy I spent many nights in his arms listening to him repeatedly explain what I already knew – “You are more than the sum of your parts!”

From the start of this whole Cowden’s Syndrome mess, his ONLY concern has been keeping us safe and healthy. He is my biggest support system, my cheerleader, and my safety net.

I have been blessed in so many ways, but I truly feel this PTEN mutation, helped strengthen an already solid marriage.

He goes back to work in a few hours, and I couldn’t be more sad. My happiest times are when we are a family of three.

Bra-less in Walt Disney World!

Published on August 19, 2012August 19, 2012 by beatingcowdens2 Comments

I just returned from 9 days in sunny, HOT Florida with my family. We had our 5th annual trip to Disney to celebrate Meghan‘s birthday August 9th. I now officially have a 9 year old!

The trip was great, and I will have loads of things to share over the next few days, so bear with me. But this is the thought I had to share first.

I spent 9 days in Florida and I didn’t wear a bra – not once.

Now I was never huge. Prior to my mastectomy I was a B cup, C if I had gained a few pounds or wanted to make myself feel better. So, when I was discussing my reconstruction options for the new boobs with the plastic surgeon, she was a little surprised when I told her I wanted immediate implants instead of tissue expanders.

She told me that just isn’t the way they do things anymore. She said she wouldn’t have enough skin to maintain my existing size. So I said, “OK, go smaller.” Now she was a pretty small woman herself, but she still spoke to me for quite a long time, wanting to be sure I understood what I was saying.

I did. You see my surgery was as much about my daughter as it was about me. I knew that tissue expanders required fills. I knew that that meant more trips to the doctor. I knew that it meant an additional surgery for the implants, and I knew several people who had suffered enormous infections with them. I also knew I had to get home to my daughter and get about the business of recovering – quickly. So, if that meant I had to go down to an A cup – so be it. It supported the weight loss all the recent stress has brought.

After the surgery I wasn’t unhappy at all with the “new” girls. Once healed I got used to them, and grew more confident. So, when I went shopping for vacation I got a little daring.

All those shelf bra tops. the yoga ones, and the skinny strap camisole tops – well I had a few, and I bought a few smaller ones. Then, I tried them on with no bra. THAT was something I never dared to do before. I jumped, I bounced. I checked. Nothing moved. And, since I lost my nipples to the surgery – nothing stuck out.

Well I spent 9 days in Florida, with minimal hot flashes, helped along by my moisture wicking tops, and no bra.

Best part of all, I am sure NO one had a clue.

After all that has gone on, if I don’t find the bright side, I will crack up. So here it is, just for you – the shots of me Bra-less in Walt Disney World!

Family Photo!

Published on July 22, 2012July 23, 2012 by beatingcowdensLeave a comment

This year I am obsessed… well with quite a few things, but one of them is not (directly) medical.

This year I am focused on a high quality, everyone looks their best, everyone is smiling, family photo.

We are a family of three. Immediate family that is. (Not including our furry friends Allie, and Lucky.)

Our extended family includes his parents, two sisters, a brother-in-law, and three nephews. On my side, there are my grandparents, (Mom’s parents, my step-dad’s Mom, and my father’s mom) as well as my mom and dad, my father, my two sisters, a brother-in-law and a half-brother, and two nephews. That list doesn’t begin to address aunts, uncles and cousins galore on both sides. Yes, they are all family, but reality will never put them all in one place at the same time, and there are probably some blessings to that. While I love them all dearly, I often say you shouldn’t mix drinks, or extended family!

We have been fortunate enough that we have been able to travel to Walt Disney World in Florida for the past 4 summers. We will be making it a 5th this year. We save and budget all of our “fun” money for a Disney vacation because for their extremely high pricing, we get “allergy safe” meals wherever we eat, and unlimited access for Meghan’s push chair, which she often needs when we travel more than about a half mile. It is the best week of the year for all of us.

It is usually the week of Meghan’s birthday. It is doctor free, no needles, just be “normal” week. We take LOTS of pictures. Usually it is of Meghan alone, or of one of us with Meghan. They are great photos and I treasure them. The few photos we have gotten of all of us in Disney usually have us in sweats, and sneakers – SWEATING. This year we are going to go to the photo studio, and I don’t care how much it costs. Meghan and I have dresses picked out, and matching sandals too. (We just need to pick out something for Daddy who after deciding “stress eating” isn’t the way to go, is down over 20 pounds!)

There are so many reasons why I am focused on this photo. It is FUN to focus on something FUN.

I have been smacked in the face with the reality of the frailty of life. In March I was given a “second chance” as I was told the breast cancer that was “sneaking up on me,” unbeknownst to any doctor – was gone. Gone after a “prophylactic bilateral mastectomy.” Gone before it had a chance to wreak havoc on my life. Gone. But I will not forget the words of my surgeon, “If you had waited until July to do the surgery you would have likely been in a fight for your life.” Instead, I will go to Disney World.

Not lost on me is the reality that 15 years ago next month my Mother finished up treatment for bilateral breast cancer. She is strong, a survivor, still here, enriching our lives.

Not lost on me is the cancer scare AGAIN in May, as they worried about a malignancy in my uterus, before performing a hysterectomy.

I am vividly aware every moment that the thyroid specialist who monitors Meghan’s “precancerous” thyroid nodules, took back his invitation to come back in a year, and said, “we better see you in 6 months. One nodule is starting to dominate.”

I am painfully aware every moment that after one of the strongest, and longest battles I have ever witnessed, we lost GGPa in June to cancer.

My stomach, and my heart hurt for the victims of the senseless attack in Colorado this week. Families out to see a movie – life ended so tragically.

I love to look at pictures. In an age when people have stopped printing them, I have shelves FULL of albums. I love reliving memories, and smiling at al the good times. The albums remind me, that no matter how tough things seem, there ARE LOTS of good times.

Cowden’s Syndrome, PTEN mutation, cancer, NOTHING can take away the memories or the good times. So since 2012 has been quite the year, we will take a “fancy” family photo. One that will hang somewhere in our house and remind us that we can endure the tough times. One that will remind us to hug each other tightly, and to kiss each other when we leave, and to never stay angry over nonsense.

One that will remind us that we are defined by our spirits, and not by the sum of our parts.

We are family, and a pretty special one at that.