Dates, numbers, zip codes, birthdates, anniversaries. I think in numbers. I think that’s why teaching math makes so much sense to me.
I used to balance my checkbook right down to the penny. Now I use “estimation.” Sometimes numbers are important, and other times not so much.
Tomorrow is the 16th. January 16th is the birthday of an old friend, but that wasn’t why the 16 was sticking in my head tonight. Tomorrow it will be 8 months since my hysterectomy. Not 6 months, not a year. Eight months is an odd “anniversary” to remember.
I don’t try to understand why I remember certain things. I just do.
Although if I have to guess, tonight the hysterectomy is on my mind because I am feeling my age. (Or perhaps a bit older than my age.)
You see when you have a complete hysterectomy in your late (very late) 30s, Mother Nature has a grand old time, messing with your body and your head. As the months go by your body finds ways to behave that aren’t quite “right.”
Yippee- you no longer suffer through monthly visits to the local drug store to relieve your misery. (She was never my “friend” anyway.) But that may be where the cheering ends.
Tonight I was sure the thermostats – yes both of them – were broken. I fiddled with them to get the chill out of the air when I got home from work. No sooner did I finish the first of the homework with Meghan, and I was removing layers. I checked the temperature again. It couldn’t be only 70 degrees. In my world we were in balmy Orlando in August.
Properly changed into a T shirt, I asked Meghan why she wasn’t sweating in her long sleeve shirt.
“Mom, it’s January. Are you OK?”
Yep. Fine. Guess the thermostats are fine too. It’s mine that is a little broken.
Mine is running hot and dry like the Sahara. Lots of water. No wine tonight.
The hysterectomy was a good idea. A necessary step in the “beating Cowden’s” process. I get it. I am not sorry I did it. But really some days I have to say this estrogen withdrawl thing is not for the faint of heart.
I popped one of the migrane pills. An added joy since the surgery – hormonal migranes. And the cool thing is (in my most sarcastic typing) that there seems to be NO rhyme or reason to their timing.
4 migranes my entire life before May. At least 8 since May.
With all the changes my body has been through this year, its a wonder we are still on speaking terms. I guess when I really think about it – it’s probably Ok that I am running at different speed these days. Bursts of energy, coupled with bone crushing fatigue…
525,600 minutes… Cowden’s Syndrome has kept us busy. I can only imagine what 2013 has in store.
Now if you’ll excuse me…. I have to go stick my head in the freezer…
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.
Yes, there is the occasional moment where I think the new girls feel a bit awkward, or unnatural. There is the occasional moment when I look in the mirror and try to remember what the old girls looked like, and what it was to have nipples instead of scars.
Then I get over it.
And I think about how comfortable and natural it was last night, as I held my exhausted daughter and she rested her head on this size A silicone that sits where my old boob was. She didn’t even hesitate. She didn’t mention it being weird or unnatural. She didn’t notice.
And my husband, who means it when he says over and over – “I am just so glad you are here.” And, I believe him.
I am blessed to have had great surgeons, a superb support system, and the “push” to say goodbye when it was time.
A year ago I still had more body parts. If I had left them all alone I could be dead now. But I am not. And the cancer is gone.
I should be sleeping. It is 1:30 AM. This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.
Maybe you have been following the saga of my poor spleen… or not. Either way, my spleen has issues. Or, rather, my doctors have issues with my spleen.
The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis. When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison. When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen. Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen. At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May. She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen. Reluctantly, she agreed.
So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again. The oncologist looked at the report and ordered an MRI. I went for the MRI and tried to set up the surgical consult. The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first. But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.
So, instead of February… it is now December, and I am waiting. Waiting to have the fate of my spleen determined.
Well meaning people say to me, “Don’t worry – you can live without your spleen.”
Sometimes well meaning people should smile and nod more, and speak less.
Yes, I KNOW I can LIVE without my spleen. You can also LIVE without your boobs, your uterus, your cervix and your ovaries. You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too. But, just because you CAN do something, doesn’t mean you should.
I am thinking of asking for a fake fish for Christmas. One that will remind me I have been gutted like a fish this year. One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!
Monday or Tuesday I will talk to a doctor about my spleen. I would love to keep it. I just think we have gotten along nicely for the last 39 years. And, its mine. But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.
Heck, I didn’t go through all of this past year to be beaten by my spleen….
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.
I really did love my Hyundai
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!
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….
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.
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.
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.
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.
Meghan‘s school motto is “Pay it forward,” and it is one of my most favorite things she has learned in her 4 plus years there.
The students are taught that it is important to give to others, with no expectation of return. And they develop the knowledge that when others do for them, favors can not always be directly repaid. It is actually a good philosophy of life. Do for others for the sake of doing good. If everyone follows that, chances are when you need a helping hand, someone will be there to stretch it out for you.
So this morning we joined some of my colleagues from school at the “Autism Speaks” walk. We are facing a major hurricane tomorrow. Schools have already been closed. The MTA has shut down bus service, yet the turn out at the BEACH for this walk, was absolutely amazing. I was full of pride as I stood with my colleagues in support of one of our own. The proud Mom of a handsome autistic son, and an absolutely beautiful daughter, is a woman of true class. She is a teacher at my school who I am grateful to have as a friend.
Her team raised close to $2,000 in support of Autism research, and the love in the air this morning was overwhelming.
Everywhere I looked there were fighters. Young autistic children, and their support networks – strong and mighty. Prepared to do whatever they can for their children.
Even though our battle and journey differs from theirs, I felt I was among kindred spirits. Scores of families that keep fighting, keep battling, to ensure their loved one has whatever they need. In so many ways we wear the same…
We will fight, by whatever means necessary for our children. That makes us all the same where it matters. The battles are different – but the war is essentially the same. And we will not be stopped until it is won.
This is the same family, that created Meghan’s denim ribbon necklace. This is the same Mom, who – even though she has a million things on her mind each day, took my daughter’s need for an identity to heart. Wearing her own, beautiful diamond puzzle piece each day, she took Meghan’s concerns home to her husband the jeweler – and he made Meghan’s needs his priority.
Her own necklace is far more beautiful, but the point is she “gets it.”
And it wasn’t long before Meghan had this beautiful piece around her neck, representing rare genetic disorders, like our Cowden’s Syndrome. There was nothing of its kind in the world, but not to be deterred – this Dad, who also “gets it,” didn’t stop until it was made. My girl has her identity now.
A denim cause ribbon, crafted after the Global Genes Project‘s slogan, “Hope it’s in our Genes!”
Hopefully one day soon, The Global Genes Project will be able to sell these to anyone who wants them. I know talks are taking place right now, and it is so exciting.
So this morning, it was easy to make our way down to the beach, to support Autism Speaks, and a great family. It is easy to remember it is not all about us. That others suffer deeply, and daily.
We are home. Showered an in our PJs. We are prepared as we can be… waiting for the storm. But we will persevere. It will be OK. The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love. Pay it forward. You will be awed by the return.
It’s not as easy as baking a special treat, or giving some extra hugs.
I can’t fix it. And it’s going to be here forever.
A little over a year ago we knew nothing of Cowden’s Syndrome. We knew we had a smart, funny little girl with lots of medical issues. We knew we were stumping the best of the best doctors. We knew we were getting by.
And then they figured it out. And the world started spinning out of control. Just over a year ago, I got my diagnosis too.
“Love You Forever” is one of my all time favorite stories.
I guess it hit me hardest today. I never know when reality is going to come at me like a two by four. But, today it did a number on me.
We went to the orthodontist for her monthly visit. It has been just over 4 weeks since the braces went on. She has been a trooper. Mature as anything. Careful. Diligent. Typical Meghan. And yet, the gums are starting to overtake the braces. It’s almost unreal to watch. We brush – often together. With an expensive fancy toothbrush. I help her floss, and still they grow.
We were both a little worried that the orthodontist would yell at her. Reprimand her for poor hygiene. But, he was great. I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan. We have been with the office 2 years, and he knows her gums are “extremely reactive.” So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.
But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.
Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.
Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth. I will never forget it. They kept her awake. Gave her (not nearly enough) Valium, and I had to hold her as they burned it off.
Apparently I am not the only one who will never forget it. She was beside herself when we left the office, and remained on edge all night. She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.
I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.” To which she, in her most grown up voice said, “I know you are, and it’s not your fault. But you can’t fix it. You can’t fix me. No one can.”
At that point trying to reassure her that she wasn’t broken would have been pointless.
I let her go. She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.
He shoulders seemed a little heavier. More of the weight of the world on my baby. I can’t fix it. I can’t do anything to stop the firestorm that will come our way in the next decades. I can only be vigilant. And hold her hand. And love her.
beatingcowdens 