Family – Page 8 – beatingcowdens

There are just no words

Published on February 8, 2013 by beatingcowdens3 Comments

Tonight it’s not about us.

No matter how hard I try. No matter how much I trust. No matter how much I pray. There will be some things I will never understand. Ever.

Today a generally healthy 11-year-old boy, a 6th grader from the neighborhood died. A few days ago he stopped breathing, and today he is gone.

The details leading to the tragedy just don’t even matter, as much as the fact that it happened at all.

When I began teaching, his mom taught with us. It wasn’t long before she would take childcare leave to build her family of three. We were not close friends, but colleagues still the same, and close enough that I am absolutely sickened by the loss she and her family are enduring.

Years later the children would come, first through my school, then another local elementary school. The two boys are in Junior High. The 8th grader, the oldest, is just two years ahead of the little brother who passed. Their sister is a 3rd grader.

The family is just like any of ours. The mom was a teacher, dad a police officer. They were the “regular” family.

This is the stuff nightmares are made from.

Even though we live in a “big city,” our borough is a small town. There is so much interconnection in this area it seems everyone knows someone.

I was not “friends” with the family. We chatted when we saw each other, but our kids didn’t play together. We weren’t “close.” Yet still I am heartsick.

I know families who have lost children. I know mothers who continue to function after burying their babies, and fathers who get up and one day go back to work. I am in awe of their strength. I can not imagine the depths to which the loss of a child changes you.

And we seem to hear of it all the time. There are tragedies, school shootings, traffic accidents, and the like. There is cancer and its far-reaching effects. There are countless rare diseases that I learn more about each day, that rob parents of their children way too soon.

Chronic illness is not fun. It can be downright difficult to bear at times. But tonight again I will thank God for Cowden’s Syndrome, because despite the headaches and trauma it can cause us, it is a blessing. We have a warning system. We have constant screenings that will likely protect us from the ominous cancers looking to attack. We are blessed.

I do not by any means think that any type of loss is easy to bear.

The loss of my cousin shaped my existence as a person, but even I never fully recovered. I still pray for her parents and her sister.

I was in the 6th grade when a friend from my church was hit by a car and killed on the school bus stop. No criminal charges. Just regular kids playing. And then they weren’t. I remember the whole experience vividly 30 years later.

A few weeks ago I stood by the side of a work associate whose 39-year-old daughter had died of cancer. No words.

One of these parents told me there is a reason there is no word to describe a parent who has lost a child. The grief can not be contained in words.

I just can not for even a moment imagine the shock and trauma when you put your healthy 11 year old child to bed, and he doesn’t get up.

Tonight my heart is with the family. The mom and dad, the brother and sister, as well as all the extended family and close friends whose lives are forever altered.

I will pray that God holds them all so tightly, and that He binds them close together, and showers them with His love.

There are just no words.

Thankful for… that first piece of pie!

Published on November 22, 2012November 22, 2012 by beatingcowdens3 Comments

I was going to avoid boring everyone with the same drivel that has been written over and over today, but I couldn’t resist.

It’s hard not to think about what you are thankful for on a day earmarked for reflection.

So, here it goes…

I am thankful for my husband. He stays behind the scenes all the time. He never looks for the credit in anything we do, yet he is the driving force behind our marriage and our family. He knows when to make me laugh, and when to hold my hand. I am not sure how I could have gotten through this year (or the 12 before it) without him.

I am thankful for my daughter. She reminds me every day what is important in life. She inspires me to push through adversity, and to keep on going – even when the going gets rough. We share a lot (maybe more than I would like… darn Cowden’s Syndrome) and I could not ever ask for a kinder, more compassionate, loving daughter. Even on the days we go head to head – I am the proudest Mom.

I am thankful for my “furry children,” my Allie and Lucky. Their unceasing loyalty, their love and companionship bring such joy to all of us. Plus – there is nothing like rubbing a belly on a stressed out day to make you feel better!

I am thankful for my parents, and their “being there.” Sometimes that’s all you need is for someone to be there.

I am thankful for my siblings… all of them so very different, yet all so incredibly important to me. I am thankful that even on the days we don’t see eye to eye – our love is strong,

I am thankful for my nephews, and the joy they bring, just by being themselves.

I am thankful beyond words for my grandparents. Their support through these last 39 years, has been pivotal in my development as a person. I am certainly a better, wiser, stronger woman – having learned from their example. I continue to learn from them each day; lessons of love and compassion. Not many people my age are so fortunate.

I am thankful for my home – more this year. I celebrate the fact that we passed through “Superstorm Sandy” virtually unscathed. I am prayerful for those who have lost so much, and I am trying so hard -to recognize the “small things.”

I am thankful for my friends – near and far. I am thankful for my local friends, my college friends, my friends from work. I am thankful for the friends I see often, and the ones I hardly see at all. I am thankful for my “cyber” friends, that I have “met” through support groups, and this blog. The joy of knowing you are not alone can never be understated.

I am thankful for my health. I know that may sound strange, considering the whole premise of this blog is about a genetic disorder that compromises the health of myself and my daughter – but hear me out. I have this year alone undergone 2 major operations, and recovered. I survived breast cancer without ever needing treatment. I am able to walk, to run, to care for my child, to exercise, and move freely about my world. While I have health concerns, and Meghan and I will always have them – I recognize how much health we do have, and I am thankful.

Finally, and the one thing that brought the biggest smile to my face all day – I am thankful for my daughter’s first piece of pie.

Meghan has always had food allergies – gluten, dairy and soy. This year we made her a pie by rolling out her cookie dough as the crust. We filled the middle with coconut milk ice cream, and topped it with her syrup. She was so excited. It wasn’t until I cut her a piece and she asked me how she was supposed to eat it, that I realized she had never had pie. Sometimes the little things – are the big things!

Happy Thanksgiving one and all.

Why worry?

Published on November 17, 2012November 17, 2012 by beatingcowdens1 Comment

That feeling. The one where the doors are about to close, and you have to make a decision. Are you going to fight your way out… or give in and let them trap you?

The pile of bills and papers on my desk increases by the moment. I am usually more on top of it than I have been these last few weeks. When I say bills, don’t misunderstand. We can pay our bills just fine. The ones I am referring to are the countless ones from doctors and hospitals who have billed incorrectly, or have not billed our insurance carrier at all. I am not the type to write the check until they have exhausted all options. I need to get to the bottom of that pile. Make those phone calls. Do their job for them.

qq1sgMessyDesk — Ok so it’s not quite that bad, but its getting there!

I could say I lack the time, and to some extent that would be true. They want to speak during business hours. I am available ideally, from about 8 PM until 2AM. But, I think I also to some extent lack motivation. It would be prudent to address this cycle of bills before our next round of appointments next month. Meghan has a few critical appointments during the winter break, and a few at the beginning of December. Not to mention the eye doctor that I still haven’t rescheduled. And the orthodontist – UGH, have to call the dental carrier too!

I am used to this to some extent. I have never known any different. It has been my whole life and Meghan’s too. Only during the last year did it get a name. But the reality is still very much the same. Constant appointments, hoping for no new tumor growth anywhere, followed by a cycle of bills that need to be rebilled and corrected. It always works out. But it does get a bit old.

This month it has been especially hard to focus. Hurricane Sandy rocked Staten Island so hard that you would have to be living under a rock to be unaffected. We are guiltily grateful that we were safe and blessed – but it is hard to get the images out of your mind, or the reality of the people that need help. We all do what we can. Certainly a time to “Pay it Forward” here.

Then there is my dears sweet Grandma. Grandma fell on the day of the hurricane, and spent the week recovering from head trauma in ICU. She is home now, improving daily. She is walking with a walker, weary of her time in bed, and anxious to move as much as she can. She is such a fighter. I am so incredibly impressed by her determination, but that is nothing new. At 92 she is blowing expectations out of the water. She is amazing, and inspirational.

And, so is my Pop. He loves Grandma so very much that it is almost breathtaking to watch. I have had the privilege of spending lots of time with them these last few weeks, and I am inspired.

65-years — Ok – December 30th it will be 67 years, but the concept is perfect!

I was lucky enough to spend the night on Thursday. After everyone was ready to sleep and I was settled in on the couch, Pop brough his chair over to Grandma and held her hand as she fell asleep. True love at its best.

Today, a VERY kind nurse. A stranger to us, but a friend of a dear friend came and took the stitches out of Grandma’s head. Like an angel sent to us, she lovingly removed the sutures, and later thanked me. She was awed by the love she witnessed between my grandparents. She would take no money. She just was so thrilled to help. She was our angel on earth today, saving us a potentially dangerous trip to Urgent Care.

Grandma doesn’t have Cowden’s Syndrome. As a matter of fact I am increasingly certain I am the first in my family to inherit the PTEN mutation that causes Cowden’s Syndrome. That genetic defect was handed over to my daughter as well. But Grandma doesn’t have it. I am sure. What she has is an intense, loving, fighting spirit, and a desire to be well. That – I did inherit!

The piles are larger than I like. They are everywhere, and I admit to feeling a bit stressed about the lack of control. But, I am smart enough to be aware of the blessings around me. To be thankful, and have a heart full of gratitude. For it is the little things that make all the difference.

“Keep Swimming!”

Published on November 12, 2012November 12, 2012 by beatingcowdens2 Comments

There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.

I saw this today and it made me think of some of the people I have met over the last year. Some of them don’t talk to each other any more, but I talk to them all. It’s just who I am.

Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.

This has been a tough week for me. It happens to the best of us. I know I am usually pretty positive, but this week it has been harder than normal. So when I shared some of my struggles she said to me…

I thought about it for a while. And you know what? It made perfect sense. She has had plenty of struggles of her own. Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group. She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.

I think, to some extent that is what we have to do. Look it in the face, whatever it is… take a deep breath and keep on swimming.

Today is my birthday. I turned 39. And I am proud to say it. I have no intention of staying here either. Next year will be 40, and so on and so on.

But with my birthday comes a flood of emotion. This is just over a year since my Cowden’s Syndrome diagnosis. It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.

Keep Swimming…

It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS. I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed. Old familiar sweaters need to be replaced. Nothing is quite where it used to be.

Keep Swimming…

It has been six months since the complete hysterectomy. The one Cowden’s Syndrome called for – way before its time. So as my body celebrates 39 – my hormones clock in somewhere around 55. And with no hormone replacements in the cards, we are learning to get used to each other. Not uncommon for me to go from a turtleneck to a t-shirt. Good thing there aren’t too many clothes to pick from.

Keep Swimming…

My birthday has been charged with emotion for years. Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day. Despite my best efforts, at some point emotion overtakes me. I have always been grateful for our deep connection – so deep that I named my daughter for her. But, somehow 21 years fade and the feelings are that of yesterday. Oh, how I miss her.

Keep Swimming….

My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable. Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on. I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.

Keep Swimming…

GiGi fell during the storm. Two weeks ago today we were very scared. Today she walked with help around the dining room table. Her feet still work, she was excited to discover. Surely this is a realization worth celebrating. Happy birthday to me.

Keep Swimming…

We went to Midland beach today with a few small things. A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning. Sometimes paying it forward is the best birthday gift you can give yourself. If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference. It matters.

These people. The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy, they certainly are showing their ability to…

…Keep Swimming…

Such an intense day. At times I laughed. At times I cried. At times I was proud. At times I was sad. Life is changing every single day. The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.

I looked over my blog today. It has truly been a journey. And if you got this far you are reading my…

100thpostpic — Who knew I had this much to say?

9,000 views — Amazing you people find this interesting! 🙂 But I am grateful to have you.

Tonight I am reflective. I am enjoying my family and my wine. I am thankful. And I am tired.

It has been a long year. But a productive one. A year unlike any I had ever imagined. The journey here is far from over. I am thankful for my close friends, and my cyber friends. I am thankful for those of you who read, who I will never know. I am thankful for reality checks. I am thankful for celebrations, and laughter and tears – for they all make me who I am.

This is definitely a marathon, not a sprint. Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.

I am trying – with a little help from my friends.

Four hours in the gas line

Published on November 3, 2012November 4, 2012 by beatingcowdens4 Comments

I left my house at 8:25 this morning. Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days.

I drove for a bit, to all the local gas stations. I even spent a few minutes on line at one. Then I had my friend Siri call to make sure they had gas. Nope. Off that line too.

I drove past a station with a line that seemed manageable. I asked a woman if they had gas. She cried. She said, ” I have been here since midnight waiting. The delivery just hasn’t come.”

I finally ended up at Costco. I knew they had gas. If you are not from Staten Island, it will mean nothing to you when I say that the line began at Richmond Avenue by Best Buy, wrapped around Forest hill Road, onto Richmond Avenue, and the BACK into the Costco lot. I estimated 4 hours when I got on. It was 9:42

Four hours in the gas line is a LONG time. I had more time alone with my thoughts than I like. Thankfully, I had the iPhone to keep me a bit busy. But in between games of scrabble, there was way too much time to think.

It was flat out unnerving, almost surreal to be on a gas line of this magnitude. No matter how I tried, I couldn’t wrap my head around it. I just knew I needed a full tank to get me through the week, so I waited.

I thought about the hurricane. Hurrican Sandy. My mind wandered to Hurricane Katrina, and the news coverage I watched I remember feeling like it was so far away. No more.

The recovery efforts taking place miles from my home, in areas I have frequented my whole life. I thought about their homes, and then I thought about the people- returning to find their homes uninhabitable. And those who could get in, well – they had the job of a lifetime ahead of them.

I thought about the mother, whose 2 babies were ripped from her arms in the rising waters. The babies, safe in God’s hands. The mother – tormented for all of her days. I prayed one of the many prayers I pray for her each day.

I thought about friends from work. Their losses. One with a new baby on the way. Waiting to have the FEET of water that entered their home addressed. Others who suffered damage to their own homes, and the ones whose parents or relatives homes were destroyed.

I thought of the trees that make my neighborhood so spectacular – ripped from their roots.

It was a really long line. So I had time to reflect on the courage, strength and resiliency I have seen. I thought about the downed trees, and the friends STILL without power of heat.

I though about the looters, the liars, and those taking advantage of the tragedy. And I truly hope God has a place all picked out for them.

I thought about my little girl, and all she has gone through, and how she continues to make me so proud. Today she put some of her favorite stuffed animals in a bag, “For the kids who lost everything.’

And of course, all thoughts always return to Grandma. 92 years old – most of it spent right here on Staten Island. She and Pop married in 1945, and moved into their current home in 1956.

Grandma came home last night. Late. So there was confusion as to exactly where she was, but we hung together as a family and worked out some of the kinks last night. I was anxious to see her, and Pop.

I thought about this year. The magnitude of so many things taking place in such a seemingly short period of time, and I remember why I am so tired. The diagnosis of Cowden’s Syndrome – so permanent and life changing, and even on top of that, this year has seen surgeries, cancer, loss of loved ones, more cancer scares, natural disaster… and I am only getting started.

I will shop for Christmas, but mostly I want Christmas to come, because its time to celebrate the birth of the Baby Jesus. We need something to celebrate.

1:35 (3 hours and 53 minutes) Hungry and tired, I pulled up to the pump. I don’t know – or care how much the gas cost. I only know my tank is full – at least for now.

Home for a quick shower, then right to Grandma.

Family. It always mattered a lot. It matters now more than ever.

The Storms of Life

Published on October 31, 2012 by beatingcowdens7 Comments

As we prepared for Hurricane Sandy as best we could on Monday morning, we stopped by my grandparents house to tie up their barbecue and a few other things. Wind precautions.

We stayed for about an hour. We had comfortable conversation in the living room. The same living room they have occupied my whole life, and for years before I was born.

We spoke about the storm, the trees, and being ready.

We spoke for a while about some of the storms they have seen in their lives.

I am always amazed when I stop and really think of all the changes that have taken place in the world since they were born in 1919 and 1920. They have done such an admirable job keeping up – with everything.

They have been a constant source of strength, support, and pillars of faith for our family in the midst of many storms.

So as the wind picked up, we kissed them and headed home.

Some time around 3:30 I started to hear of power outages. I instinctively picked up the phone to check on them. Pop answered with a concerned voice. “Your grandmother fell in the basement. Your Mom and Ken are here. The ambulance is coming.”

Suddenly Hurricane Sandy didn’t scare me as much.

These were the storms I worried about when I wrote this Sunday night…

“The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love.”

_DSC0171 — Grandma‘s 90th birthday in 2010

Hours ticked by. Shoddy cell phone service kept the updates brief. Pop went in the ambulance. Mom and Ken followed behind. Head CT for the trauma to the head, confirmed no bleeding inside the brain. Stitched and stapled, they waited for more confirmations – no broken bones. A significant bruise on her hip earned her a bed in ICU as they are waiting to just confirm that it’s not bleeding either. Strong vitals. Strong woman. That’s my Grandma.

_DSC0257 — Four generations of strong women!

I went to visit her in the hospital. She was itching to get home. Annoyed by all the fuss.

The hospital, which had lost power was running on generators. The storm was wild and raging all around.

The nurses in ICU were calm and patient. Attentive.

I listened as they recounted medical history and was impressed and almost stunned to hear Grandma at 92 has NEVER had surgery.

Guess the Cowden’s Syndrome didn’t come from her!

Trees crashed all around us. Storm surges cost so many nearby their homes and their possessions. It was hard to stay upset for long about the inconveniences of lost power.

I spent a few hours last night with Grandma again in ICU. We are hoping she is released to home soon, and hoping her power is on REALLY soon. I watched my grandfather, still a pillar of strength at 93, by the bedside of his bride of almost 67 years, and I once again was awed by their ability to weather the storms of life -together.

No need to remind me how lucky I am. I already know. No need to remind me that angels exist in this life – several were clearly softening Grandma’s fall Monday. No need to remind me that the storms will pass. I have seen the models of resilience. I have been blessed with them for each day of my life. I will cherish them always.

I will pray. I will pray for grandma, and her health. I will pray for those devastated by hurricane Sandy. I will pray prayers of gratitude for those who weather the storm to help others. And, I will offer prayers of thanks… lots of them.

“More Birthdays”

Published on October 21, 2012 by beatingcowdens5 Comments

I get it. Sometimes it takes a bit – but I get it now.

I mean, I understood in theory what the American Cancer Society meant when they came out with this slogan, but today it really hit me.

Today was it – the “take two” for my little girl who was shut out of the Susan G. Komen Race for the Cure in September because of a fever. This was her chance to walk with Mom and Grandma. She even got the added bonus of having Dad with us this morning.

Living where we do, an event like this seems to bring out just about everyone, and it was hard to take two steps without bumping into someone we knew. It was also almost impossible to look anywhere and NOT see one of those pink survivor sashes. I saw them on women of ALL ages – from the frighteningly young, to the admirably old, and it got me thinking.

More birthdays…

Before my mom had her cancer, she could have sometimes been caught cringing at the sound of “50.” After a double mastectomy, 6 months of chemo, and in the middle of 5 years of tamoxifen – she embraced 50 with a smile, and slid gracefully past 60. “Beats the alternative,” she often says.

More birthdays…

We waited with a group from Meghan’s school for a while, and it was hard not to read some of the “team” T-shirts. A large group gathered right next to us was commemorating a young lady who apparently died of breast cancer in 1994. Her birthdate was listed as 1971. What her family probably would have done for more birthdays. I can’t even imagine…

More birthdays…

As I stood there, I thought about the “previvors” I have “met” on the internet and from this blog. They have courage of a type no other can quite get. The courage to undergo a prophylactic bilateral mastectomy is not to be understated. I am impressed at the maturity of the very young, and the wisdom of those closer to my own age. But, I was struck, somewhere in between the quick math that left me knowing the young lady on the T-shirt had been 23 when she died of breast cancer in 1994, and that my own girl will be 23 in 14 years. Suddenly it didn’t seem that long, and I was afraid.

More birthdays…

My little girl will grow to be 95 I reassured myself. With the power and knowledge we have – she will know lots more birthdays. But the reality that my mom had cancer at 48, and I had it at 38, and the current screening recommendations are to screen 10 years before your closest relative had the disease, well – it made it hard to breathe for a few minutes. Then my husband reminded me that she has ALREADY been screened – twice. We will be vigilant.

More birthdays…

And then I thought about my own. I will turn 39 next month. That is the age some people like to stay at forever. NOT ME! I want MORE BIRTHDAYS!

Meghan1990 — My beautiful cousin Meghan died of Leukemia in 1991, on my 18th birthday.

More birthdays….

My cousin Meghan was a brave soul. She was diagnosed with Leukemia when she was 2. She fought for 4 years before the disease took her from us. She got her wings the day I turned 18, and every birthday since then has been bittersweet. We had a connection that I still find it difficult to describe. My love for her was deep enough, that I needed to name my daughter for our “Angel Meghan.” Meghan did not have enough birthdays. This may be the year that I look at mine a little differently. Maybe its time to use my birthday as a time to celebrate BOTH of our lives.

More birthdays…

We left the walk a little early this morning. We had to head out to Long Island. My nephew Luke was celebrating his 9th birthday today. And as the kids played, and the candles got blown out on the cake, I found myself really sure that I understood. As my sister said just an hour or so ago… It’s not about the gifts. It’s about the people you celebrate with. We celebrated Luke’s birthday with 3 GREAT grandparents, and 4 of his grandparents. It’s easy to fight for more birthdays when you are this blessed.

I get it…

It’s not all about us

Published on October 15, 2012October 15, 2012 by beatingcowdens3 Comments

And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time.

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!

Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out. We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.

Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

Every Day is a Great Adventure!

Published on September 9, 2012September 10, 2012 by beatingcowdens2 Comments

Ever feel like you lived a few days all at once? Yep. Today would be one of those days. From the physical to the emotional – I am shot. And it is only the BEGINNING of the week!

We walked today, my mom, my friend and I. When Mom picked me up this morning we were both a little grumpy. then we both cried a little. It just seemed wrong heading out without Meghan. But I took some solace in the fact that when I kissed her at 6:30 AM her skin was blessedly cool to the touch. Maybe it was over.

So we picked up our friend, and determined to enjoy the sunshine, we were in central Park a few minutes after 7. Professionals by now, we do all of our shopping, and gathering of “free stuff,” then we walk it to the car so we can race pretty much unencumbered. And Meghan, for having not been there, made out quite well in a wide array of paid items and “free stuff.” Well deserved!

Manhattan was crowded as ever, but thanks to my aggressive little Mom we were up close to the front when the race began. We moved aside to allow for the runners and then had a really enjoyable walk without the tight crowds we sometimes experience. We got to chat and walk, and enjoy each other and the sunshine.

RFTC2 — Holding the banners Meghan made for us

At the finish line. Aren’t we pretty in pink? 🙂

So after a fun and exhausting morning we headed home. Meghan was so thrilled that we hadn’t forgotten about her. I was less than thrilled to see her on the couch, a clear indicator that the fever returned.

So, just like that came the transformation from walker to Mom. We started making plans for who would watch her Monday. She reminded us about her friend, and ours, a neighbor who loves her like she is her own. Meghan said, “Just ask Patty!” So I did. Patty will be here at 7:15.
Thinking it was all taken care of, we sent Meghan for a nap. Restless a few minutes later, the thermometer revealed a scary 104.2. Knowing what he would say, I had to call the pediatrician anyway. That number is too high for me. So, he happened to be in his office and invited us to come in. (I adore my pediatrician.)

He spent a few minutes sizing her up. The Tylenol was starting to work and she was down to 103.7. After an agonizing 20 minutes he sent us for blood work at a local ER. I am not a big fan of the local hospitals, but thought perhaps a brief visit MIGHT be ok. Not so much.

In the literally blood spattered walls of a tiny room with no access to TV or cell phone, we sat while they took 2 blood cultures and a CBC. She admitted at 4 PM with a fever of 102.9. They gave her a dose of Motrin. We waited for the blood for almost 2 hours. As I grew anxious they told me they were having trouble finding it. Almost ready to leave, it turned up – with a terribly low white blood cell count, but nothing else noteworthy. We left quickly, being discharged at 6:30 with 99.4, having learned/remembered 2 things.

1. It is not OK – even for a short visit, and

2. Motrin – Motrin – Motrin

We had a hard time deciding who got to shower first as we cleaned off the filth we had just been in. Dinner, some TV, WINE(for me – not her!), and it was off to bed. Fever free at 8:30.

Headed up now for the 11PM Clindamycin. Who knows what tomorrow will bring? Every day is a great adventure!

Random Reflections – nothing profound today!

Published on September 2, 2012 by beatingcowdens3 Comments

We tried another church today. This time all three of us went. A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless. Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

God has a plan. And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.” I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me. So we will see. At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day. Glad we got in a swim yesterday. It may have been the last one. We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner. Hoping its nothing too serious.

We got to spend the afternoon with my grandparents and my parents. Last minute plans are always a treat when we get to be with family. Pop was 93 last week. Grandma will be 92 in 2 weeks. GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday. She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things. I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend. She told me I could get it Tuesday. I chuckled.

No matter how hard I try… “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday. I will not physically be able to have the CD burned until Friday. They will get it in about a week and a half. At which point she nicely reminded me that it could be serious. To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think. But, what I meant was, I have undergone 2 major surgeries in the last 6 months. I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one. Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD. I will get the results of Meghan’s blood test and MRI. I will call Meghan’s school and sort out the busing mess that is developing for the first day of school. I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed. I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work. We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine. LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!