I cried today. Yep. That was it. Couldn’t hold it in one second longer so I pulled the car into a lot. Thankfully I was alone. And I rolled up all the windows, locked the doors – and sobbed.
It only lasted about 10 minutes, but I caught a wicked headache, and a bit of stress release from that good old-fashioned hissy fit.
I generally make a habit of not allowing them. I am a look at the bright side of life kind of girl. I like to remind myself about others who have it worse, and try to put myself in other people’s shoes. It usually works.
Today the emotion got the better of me. And its OK.
Work was stressful.
Supporting my dear husband while he works his tail off three nights a week at school is well worth it, but stressful for all of us.
Homework. Constant. Ever changing. Tests that need to be studied for. Worry about things not yet complete. Yep, its only 4th grade. The teachers are lovely. The stress is really almost unreal.
Today we went to the Urgi center for X-rays of a foot and ankle that has been bothering Meghan since dance class Monday. She limped for 2 days before I thought – negligent mother should have a doctor take a look. Sprained. Takes time. (Besides the 2 hours out of the afternoon.)
In addition to Cowden’s Syndrome, Meghan has a few other neat things. One of her diagnoses is “Benign Hypermobile Joint Syndrome.” Great – if you can manage your flexibility. If you can’t it leads to all sorts of random injuries. We keep a really good PT around… just because.
But, if I am really really honest – I don’t think any of these things pushed me over into that screaming sobbing cry I so desperately needed. I think it was sadness. Sadness, mixed with raw fear.
Last night I sat with a friend and her 7th grade son at the wake for the little boy who died last week. I couldn’t for a minute imagine that any more sadness could fit in that one room. I had a lot of time to think while we sat. Maybe too much.
I looked first at his family. Mom and Dad poised, and carefully greeting each on the never-ending line. Big Brother and Little Sister, beautiful, supportive, composed. I told you. They could have been any of us. And I am sure they never in their worst nightmare imagined they would be standing there.
And I looked at the police officers, standing in honor. Each one with red eyes as they tried so hard to remain stoic. Undoubtedly they had kids of their own, or they knew the young man well – or both.
Children. Everywhere. Out of order for a wake. Except this time it was theirs. It was their friend. The kid they sat in class with. Young preteens – so many of them former students. Faces raw with emotion. A night they will never forget.
Tomorrow my friend and I, we will go to the funeral mass. We will represent our school. We will try to keep ourselves composed. But, her thoughts will wander to her boys, and mine to my little girl. I will think of the “close calls” we have endured, and the many the Cowden’s Syndrome has on the horizon for us. I shudder at the horror… at the potential.
And yet, if I let it consume me, what life will that be for my girl; my beautiful, generous, compassionate young lady?
If I let the tragedy overwhelm me with the reality that at any moment, any of us could be this family, I will lose track of what I have.
If I lose track, if I stop cherishing the blessings I have, I do not give any honor to the memory of this little boy.
Instead, I hug tighter. Try to strengthen the duration of my patience. Smell the flowers. Say I love you. Believe in angels. Remember what really matters.
I can not comfort this family. My words are useless. They have to find their way.
But, I am quite sure now why I cried, and why I had to cry, and why I continue to cry. I can weep and mourn, with them and for them.
I can hug my little girl, and then hug her again. I can make memories that matter.
Maybe if we all take some time to show some extra love. Maybe then we can find a way to keep his memory alive forever.
God, hold them in the palm of Your hand – tomorrow, and forevermore. Amen.
Anxiety in full swing before 7 AM. Never a good sign. Especially when the panic attack is coming from your 9 year old.
See, I have a problem with this. And maybe it is where some of my anger comes from. I don’t have a problem with Meghan. I am not upset with her, or her anxiety. I am really just PISSED OFF at the cause of her ceaseless worry. It is against the balance of nature that a nine year old should have to have this much to be concerned about. It is absolutely unnatural that I have to soothe her fears while desperately making sure my words don’t form any type of lie. She is too smart. And her memory is way too good.
Sometimes, on mornings like this one. I have precious little to say. So, I hold her, as my stomach lands somewhere around my ankles, and I have a tremendous desire to (as an online support group friend suggests) lay on the floor and throw a massive fit.
And while she is crying about the huge overgrowth that on her gums where she lost her last tooth. I am trying to convince her that maybe, if we brush like the orthodontist said, it will go away. (“LIAR” I hear my inner voice scream..)
Once, a few months ago, soon after the braces were on and the gums were flaring in the full on overgrowth of Cowden’s Syndrome, the kind orthodontist made a general statement in the room where Meghan and I were. He said he was not familiar with Cowden’s, but (thankfully) he believed Meghan to be carefully caring for her teeth. However, if the overgrowth continued she would need to see an oral surgeon to have her gums cut back.
Yep. He is a nice man. But, he obviously doesn’t know my daughter doesn’t miss a beat. She was all over that comment for weeks on end. We already had her gums cut once in 2008 for an odd thing that grew over her front tooth. She may not have a solid memory of the day… but she remembers enough to know she never EVER wants to do that again.
So, what is a Mom to say, at 7:15 AM when the anxiety is impossible to manage? I need to soothe her AND get her in the car (as the NYC School Bus Strike continues) in the next 15 minutes.
At least she laughed. It’s nice to have a smart kid. One who can respect that there just isn’t anything else for me to say. Some days we have to push on. Even when we are worried and scared. Even when we don’t want to. Even when it’s not fair.
Doesn’t change the fact that she is scared, and I am mad, and the permanence of this whole Cowden’s Syndrome thing really just stinks.
So she got to school and I kissed her and wished her luck on her math test, and she took her aches and pains, and her heavy heart, and her big brave smile, and headed off into school.
They are nice to her there. Really they are. But I cried on the way to my school, just a few minutes away. I am in a rut. I have to get past this anger… for both of our sakes. But lately I just feel mad.
Of course that’s not who you see when you meet us. You don’t see worried, and mad. You see our smiles. See we get life. Both of us do. On different levels of course, but we get it. We know there are so many people who suffer. We know how blessed we are. Our prayer list is endless. But some days we just “keep swimming…” and…(we)
I got the message at about 12:45. Meghan’s school nurse had called. I called her back to hear the familiar voice that I have come to trust tell me that Meghan “didn’t look right.” She was complaining of lights in her eyes. She was “off.” After 5 years in that school, I have received limited phone calls. When they call – I answer. So, with permission I headed out early.
I got my girl home. We sat in the dark room. I rubbed her eyes. She had a bit to eat. Eventually she tarted to perk up…the anxiety had gotten the best of her. All the makings of a migrane at 9. DAMN this syndrome. Leave her ALONE!
And as we wrapped up for the day. Much calmer than when we had started, there was happy chatter of girl things, and talk of sleep overs and normalcy. With a kiss and a smile she headed to bed. God, I love that little girl.
I got in the car to check in on my grandparents. The phone was off the hook. This is an ongoing event, and one we share lots of laughs about. I arrived to find them in their recliners, watching TV. The phone was in Pop‘s pocket – on.
I asked about their night and Pop told me the story of how he “pulled over a mat and snaked the toilet, a little bit at a time.”
“How old are you?” I asked.
He winked and smiled, and told me he forgot.
I guess it didn’t matter because everything was working just fine. But some days I feel like I might as well be 93 and he, 39.
As I drove home I thought about genetics, and environment and all those biology classes I hated in high school. I may not have inherited their PTEN gene, but I grew, and learned, and was taught in their environment. I grew up in a climate of a “can do” attitude. We did… because that is what needed to be done.
Still, at 92 and 93 my grandparents do what needs to be done.
I decided while I did not gain all their good genes, I gained their drive and determination. Their faith,stamina, and hopefully some of their wisdom.
I will get out of this rut. Cowden’s Syndrome will not own us. It will not win. We can do it, and we will.
Meghan left tonight for the Father Daughter Dance with her Dad. I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life. She needs that time – to be happy and carefree. She needs time to just be a kid.
Father Daughter Dance November 2009
I looked back on some old photos from dances in years past. I know it sounds cliche, but I can not believe where the time has gone. It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.
Father Daughter Dance November 2010
I think she took it better than me.
I cried a lot this weekend.
I think I am angry too if I am honest. I think I am not just sad, but angry.
And that’s ok. I have to let myself feel even the ugly emotions when they are in there.
I am angry about Cowden’s Syndrome. I am angry about the cloud it carries, even on the sunny days. We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played. Forever.
I have said before, and I will say again – if it was just me…
Father Daughter Dance November 2011
But it’s not. It’s her too. That is reality, and it really does torture me sometimes.
All parents feel pangs of sadness as their children grow. And, Meghan being my one and only, I am sure the pangs sting extra hard. But, there is more than that. We deal with something most parents don’t.
As her age increases the looming cancer threats that Cowden’s carries with it increase as well. At her age, the biggest threat is thyroid cancer, and we are battling the beast head on. We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back. All thanks to Cowden’s Syndrome.
But, as she grows and matures, so does her body, and with it her wisdom.
She looks quizzically at my silicone breasts and her own developing ones. She wonders. Sometimes to herself. Sometimes aloud. When will it be my turn?
She asks if she will be able to have children, or if she will need to have her uterus out first. She asks that if she does have children… do they have to have a PTEN mutation? Do they have to have Cowden’s Syndrome?
Too many questions to flood the mind of my 4 foot 11 9 year old. Too many questions for the string bean with the developing body. Too many worries for my baby girl.
I am angry. But thankfully she is not. She takes each day as it comes. She accepts the eventuality that one day the biopsy will not be negative.
Father Daughter Dance January 2013
I sheltered her for a long time, but they made me lay it on the line this year. So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month. I told her there was no guarantee she would get cancer. So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer. The number is small.
So we talked about the benefit we have that others don’t. We talked about how constant screening means we will beat whatever beast tried to get at us. We will be vigilant.
We will win.
I get angry sometimes. She just finds other ways to make me smile. She keeps my heart soft. She is my rock. Wise beyond her years, and still a kid at heart.
I hope you and Daddy dance your hearts out tonight!
I headed home at lunch with the need to send out this message of thanks, to those of you who thought about us, prayed for us, and kept us close to your hearts.
I spoke to the nurse this morning. She said the pathology was BENIGN! I don’t think I heard much else she said, as the tears just started flowing.
We are not, nor will we ever be “out of the woods.’ They will scan her thyroid every six months indefinitely. But I am learning with Cowden’s Syndrome to accept the “6 month leash” as a win.
Right now she does NOT have thyroid cancer.
Right now she does NOT need the thyroid removed.
Although the MOM in me in some ways wants it gone BEFORE they ever tell me its malignant, I do understand the doctors reasons for waiting.
So, with a renewed appreciation for the power of prayer, and a belief that we have MANY guardian angels watching over us… I say THANK YOU ALL.
Tonight, we celebrate the small victories because we are fully aware how important the little things are.
I get to keep my spleen for 6 more months. (And maybe even longer!)
The surgeon said that the hamartomas are there. They are large, but they are stable. Stable is a nice word. So, because they are stable it implies they are benign. This is another nice word. The game becomes seeing if they remain stable. So, in 6 months I will have another MRI. If they have changed – it comes out. If they haven’t we can continue to talk about keeping it.
Makes me wonder when keeping our organs became cause for celebration.
You know I have wondered on and off how you actually “beat” Cowden’s. Is it by coming through with the most organs still intact and cancer free? This is such a strange, relentless disease. It’s research, while still in its infancy is coming. But, I have to wonder how much more they will know a year, or 10 years from now. And, whether I will like any of it.
We are waiting. And we know that we are not alone. We are waiting for Meghan’s results, and its nail biting, agonizing waiting. But, Felix and I talked tonight and wondered what news would make us happy. There was no easy answer.
See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous. They had scored a 3 out of 5 on some scale they use. He told us they would turn. We just couldn’t predict when.
So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious. But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.
So, here we are 6 months later. Tomorrow will mark an agonizing 2 weeks since we went for this sonogram. Waiting. Worrying. Wondering.
When they tell you its “when,” not “if,” it changes things. No matter what they tell us there will be an anxious, uneasy feeling attached.
This is the game with Cowden’s Syndrome. It’s almost like a time warp. A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.
Six months seems to be all you really get. Well, now what I have lost a few organs, I get a year on those follow ups. But everything else is 6 months. For both of us.
I tried to sync them up. So that maybe the worry wouldn’t seem continuous. But it hasn’t worked yet.
I try not to think too far ahead. You know what Mom says about planning anyway.
And to think about this in constant 6 month cycles, well… forever. It’s a little too much to manage sometimes.
So, we take it one day at a time. Sometimes one hour. Or, on this never ending road we call Cowden’s Syndrome – one step at a time.
There are a lot of people who pray for Meghan. And we are grateful for every single one of them. But, there are a special group of ladies…
Well, between them they have 9 children – 3 each. They all have incredibly busy lives, and all of our lives connected some years ago. We don’t see each other all that often, and rarely in the same place, but they are my prayer group of sorts. Our children are connected, in a bunch of different ways. Our lives are intertwined, and we have vowed to support each other.
We all seem to share the belief that –
And, with that belief comes responsibility.
So, they were among the first people I shared my blog with in its infancy last year. They are the ones I turn to and say… lift this up… PLEASE, and without fail it is done. And they do the same for me. We all pray fervently for each other. For friends, and family. For people we know well, and for people we haven’t met, and for people we may never meet.
We pray because we believe it works.
We pray because we have seen it work.
Last spring when my sister’s dear niece was knocking on death’s door – felled by a virus of unimaginable strength, we (along with countless others) prayed. And we witnessed nothing short of a miracle.
The day of my mastectomy, wracked with fear – terror actually – my cell phone rang as I was checking into the hospital. My brother-in-law, a Lutheran minister was on the phone at 6AM, ready to pray with me. As the tears rushed down my face I felt the calm envelop me.
Prayer is powerful.
But, it doesn’t always take worry away.
So tonight, as I struggle to sleep, I will think of them with gratitude. I will also think of the countless others – those we know and those we don’t, who are lifting my little girl up in prayer.
Tomorrow we go for the biopsy. Then we wait. I am not sure which part we will need your prayers for most. But, please – whatever you believe, remember us this week…
I mean no disrespect to the “Man of Steel,” but I think parents of kids with chronic illnesses have it more difficult.
We need “Nerves of Steel.”
I am trying to settle in to bed. Tomorrow bright and early we head out for the thyroid sonogram and appointment. My stomach is twisted in a million directions.
At this point I should be calmer. I should relax, and have faith – as I am sure that everything will somehow be alright. Yet, still, it is so hard to keep your mind from wandering.
I will take it all, every illness, every horrible twist and turn that this wretched Cowden’s Syndrome will toss at me. Just PLEASE… leave my kid out of it.
Today we stayed home. The three of us, (and Allie and Lucky) as a family. We did some work, and we rested. We also did a little bit of shopping.
My girl had only three things on her list for Santa. She asked for an American Girl Doll, a dog ring, and money to buy toys for the children in the hospital. Santa left her $100. Today she carefully selected some toys, “a kid stuck in a hospital might appreciate.” And she would know. She has spent her share of time stuck in a hospital.
These are the toys she picked out for the kids in the hospital.
Such a great kid. I am just so proud of her compassion. We are blessed. Please, dear God… hold us close tomorrow.
This is the letter I send in my Christmas cards… shared for my “on line” friends.
“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34
December 2012,
Dear Friends,
It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus. This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.” Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.
Life in the Ortega house continues to be one of adventure. We are blessed. Meghan excels in school, and loves to swim and dance. Medication allows her to move her body without pain. We are grateful each day for each other, as it is that bond that allows us to weather the storms of life. And there have been some this year! Some time in early spring, Felix joked that I should start on my Christmas letter. He wasn’t kidding.
We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”
We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist. We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ. We have been scanned repeatedly – each MRI separate. Sonograms of every body part you can imagine. All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.
There is so much overlap as to how everything came together this year that it is even hard to summarize. I feel like sparsely a week went by without an appointment – many of them in NYC. I laugh now at the days I swore I would NEVER drive in the city. I don’t use the word “NEVER” much anymore.
In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee. The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap. We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.” Again, not if, but when. So we wait. She will be scanned again in February to determine the status of the very stubborn AVM. Cowden’s Syndrome complicates any vascular anomalies.
In March I underwent a “prophylactic” bilateral mastectomy. After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step. Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction. The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast. The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.
Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later. A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy. So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.
A month later we took Meghan for her thyroid scan to Sloan Kettering. We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area. So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.
Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney. Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists. I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!
In the midst of our medical “stuff,” life continued around us. In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan. A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed. Our hearts will never be quite the same.
Meghan and GGpa
Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps. No one is quite sure exactly what happened, but it is evident that the angels held her that day. She suffered a serious head wound, and severe bruising, but broke nothing! She spent days in ICU, and returned home the end of that week. With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day. I admire my grandparents. As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it. They are role models to us all.
Love my Grandparents!
Their marriage reminds me that God gave me a great gift when he sent me Felix. I can say that we share such love through God’s grace – that I can not imagine my life without him. He is my soul mate – and my sanity!
I guess I leave you with – to be continued. No words of wisdom this year. We are trying our best to take it one day at a time. The tree is up. We have our hearts and our heads focused on what matters. We certainly have had plenty of lessons!
We would love to hear all the things that are new in your home!
Warm Christmas Blessings,
Lori, Felix, Meghan, Allie & Lucky Ortega
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story
The cards were in the mail Sunday night. I was getting it together.
Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.
I stopped at the stop sign. I looked to my left down the one way street I have traveled so many times before.
I was clear… and I drove.
3/4 of the way through the intersection…
I really did love my Hyundai
I didn’t see the SUV until it was in my rear driver side door. I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.
His car ended up a block away. There had been no braking. No horn. The impact shut his car down.
As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.
The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.
I have laughed and cried a lot over the last 24 hours. I am grateful that I am walking and moving. I am tolerating the muscle spasms and bruising.
As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood. What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.
The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to. Maybe… just maybe.
So I think of my little love.. and I am so happy she is safe. And maybe that thought is where I will draw my peace.
“Sometimes your blessings come through raindrops…”
Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….
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.
“Angel Meghan” – 1987
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…
Who knew I had this much to say?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.
beatingcowdens 