September 11, 2001 I was teaching second grade for the first time. The kids were so little. ( I am sure you remember where you were too.)
The school was so well run, it was hours before I would know exactly what horrors had transpired so close to us.
I work in a school, that is part of a community where parents who are police, and firefighters are the norm. Not to mention our teachers – married to FDNY and NYPD.
Our community is so close to Manhattan, most of our working parents worked down town, or mid town like my husband.
As I watched the students leave, one by one, I was struck with the reality that this day they lost their innocence. That no child would ever again grow up as carefree as I once was.
As the names came out, and the stories unfolded we all knew someone – some a lot closer than others.
Funerals unending.
Lives changed forever. Still changing.
Street signs commemorating victims. Memorials, tributes.
Cancer. Asthma. Chronic illness. PTSD.
Everyone remembers, to some extent. But here, in New York the pain is palpable.
This morning we prayed that those suffering heartache would be able to take solace in the smiles and laughter of the youth surrounding them. We have not forgotten.
9/11 brings with it the promise of 9/12,
To all those with painful hearts- You are loved and remembered.
And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!
The car isn’t fixed.
We had to take it back to wait for the “Field Tech” to have a look.
Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.
10 days in service and I left with the same broken car, with the same parts as when I dropped it off.
Except that a few “extra” parts were left on my seat and my console.
While we will make an appointment some time next week to leave the car for the “Field Tech,” I had to laugh in spite of myself at the irony of the whole thing.
We have spent the summer at doctors. Some doctors were routine, some were tests and follow ups for things that were not “ok.” While there are many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.
A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.
Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.
Too hopeful? Maybe. But, if I give up hope, where will we end up?
Raw with fatigue. Frustrated by “extra parts” and the people who don’t seem to know what to do with them…
Which ones do we put in? Which ones do we take out?
The similarities are almost uncanny. What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”
I could barely contain my laughter, but by then we needed a good laugh.
We had just left the hand surgeon. The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.
I came as usual, armed with a thick heavy binder, a recent MRICD and reports, a list of all current doctors.
I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger. You know, the one she says helps alleviate the pain when she presses on it?
He said it was “barely there.” Yes, and 2 weeks ago it wasn’t there at all.
He took an Xray. Obviously low radiation, (I hope) because no one left the room.
The bone structure is fine.
Shocker!
And he repeated to me that the MRI was fine. (YEP, I know.)
But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.
I gave the beautifully written letter from our PT. It explained everything so clearly.
Pause… Pause… Obvious think time for the doctor.
“I don’t know what to tell you.”
EXCUSE ME?
” I am sorry I wasted your time.”
That was it. No request that we come back. No suggestion on what to do next. Pay the Copay (AGAIN!) and leave.
So when we got to the car Meghan and I were both agitated. Rightfully so. She is so frustrated. 8 weeks plus, and she doesn’t have the range of motion in her wrist. She was so angry. How is it that these medical professionals keep turning her away with no answers and still in pain?
I told her she was entitled to a fit. She is above that. She got angry for a bit, then frustrated. But I have definitely had many worse fits this summer alone.
Then, she said, “You know what Mom? They are all Donkey Butts! All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”
I spend a good deal of time working with her on appropriate language for a lady. But I almost had to pull over in hysterics from laughing so hard. I think she nailed it – politely and accurately.
I know I am not the only one. But I think sometimes the first step is admitting it.
Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.
My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)
It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)
So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.
The entire month of June I salivated for July. I couldn’t wait for schedule free days. Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year. The July calendar makes me nauseous. Literally.
I mean we might have gotten bored eventually, but we have barely been near the pool. I say bring on the boredom.
Most of our appointments are in Manhattan. That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity? day of the week? air pressure? There is ABSOLUTELY no predicting.
We could take the bus. But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do. So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.
And, since there is no predicting, there is always a meal to pack. Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.
Sometimes we are on time. Sometimes we are late. Always we wait, and wait.
Meghan is the most well-behaved child. I don’t lie because there is no need. I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit. For hours and hours. I couldn’t pull this off if she was any other way.
But, I don’t know if I would have a choice. There is no traveling to Manhattan at 4 pm, on a school night. It just can’t be for either of us. So we do what we must.
Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years. She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.
I am in the basement, shredding, and writing while I wait for my overworked shredder to cool. Trying to get a few things off the “to do” list.
My head is constantly going – processing new information learned this week. Thinking. Asking. Wondering. Worrying.
Today is a good day. Daddy is home. The ultimate distraction for her.
We had a long talk this morning, me and my girl. I tried to push her to reach out to some friends. To go and be carefree like she should be. Even if its only for a while. Everyone has something we reminded each other.
I still can’t shake my need for order. I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.
Cowden’s Syndrome – our curse, and our blessing. Sucking away hours that should be spent on the beach or in camp. Forcing a little love to grow up way too fast. Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.
I lost my driver’s license today. Just the license. It fell out of my pocket. For $17.50 I ordered a new one on-line. Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina. They don’t know what they are up against.
The beach… and all her other plans – I will do my best.
Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation. New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.
Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.) Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.
There are some people she misses from her old school. There are some people I miss. There are circumstances neither of us miss at all.
This wasn’t the plan. But really, as I keep learning – we don’t actually get to plan everything.
Learning experiences. That’s what they are.
You never really know what tomorrow will bring.
Make the most of what you have where you are.
Trust your heart and your gut. If it feels broken, it probably is.
Reduce your stress. Eliminate toxins. Its good for the body, mind and soul.
No experience is wasted. No interaction is a loss. People come in and out of our lives, some for a season, some for longer – but always for a reason.
Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.
Thursday we visit Sloan Kettering again. Time for the thyroid sonogram. How could six months go so fast? And as the appointment closes in she starts to articulate her fears. They are the same as mine. I should know that she is smart enough to process. To understand that they are looking for thyroid cancer.
On Friday we see the vascular surgeon for a follow up, and then a genetics follow up. Meghan loves to visit the geneticist. She says, quite correctly, that he saved both of our lives. I remind her that she saved mine. She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.” Ever wonder what it feels like to be sat on by the ‘elephant in the room?’ Well, as I gasp for breath – speechless, I give her a hug. No empty promises to offer. I can’t. I won’t. She would see right through them anyway.
This is our life. This is how our summer begins, and between the two of us, it doesn’t really let up. There is little time for camp, or beaches. We will sneak in a few play dates. We will get away for a few days in August. She will read a few great books. We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.
This – this is why we need a life free of toxins.
This is why we eliminate unnecessary stress.
Cowden’s Syndrome carries enough stress of its own.
You see this will be our life – forever. And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.
Forever.
Forever is a long crazy concept. Forever – while trying not to plan too much. Forever.
Forever has this awful way of disappearing sometimes.
I used to think Pop’s vegetable garden would be around forever.
GiGi and Pop
Well, actually I guess it is. I just grow it for him at my house now.
I know I have said this before. And, I know that many of you can relate. Since being diagnosed with Cowden’s Syndrome (insert your diagnosis here…) nothing is what it used to be. I am not the same. I have changed. Out of necessity, for survival, and maybe because sometimes its good to get rocked to your core so you have to shake it up a little. Don’t misunderstand me, I am not HAPPY about the diagnosis, or its far-reaching, life altering effects. I am just saying that complacency sometimes has some troubles of its own. A little shake up (or a few major earthquakes) now and again, keep us hopping.
So, when I say to you that my diagnosis with Cowden’s Syndrome has forced my transition into being a Smart Phone user, maybe you can relate. I promise, for me the two are closely connected.
I am frugal. Have always been careful with my money. I love to give to charities, I love to give to friends, for weddings, and showers, and babies, and special occasions. You should know that my credit card balances are respectably, almost frighteningly low, and I have been known to stop and save up for the things I want. And, you won’t catch me spending $100 on jeans I can get for $30, or gleefully sending off the payment for the utility bills without a slight lament that it seems like money wasted.
When we first got cable, I only wanted one box. I resisted the DVR at first too. I lost – both times. But I didn’t care so much because Felix wanted it, and at least it was going to make him happy.
I don’t require a lot. A few pairs of comfortable sneakers, some nice jeans, and a few tops that fit me. I need a working computer, frosted cinnamon Cheerios, and an ice cream cone – often. I am content to alternate between a few pieces of jewelry. I like my house clean and neat – but other than that, it is hard for me to come up with something I want, or need, except for perhaps a few more hours in a day, and less time tied to my computer, which leads me to the reasons it might be time for a smart phone.
Now, Felix got his months ago. And I was OK with that. Again, he needed the boy toy. And, he uses it. He watches videos as he commutes from work, plays with family photos, and scaling down into just one lightweight device made his job as a climbing electrician even easier. When he first got his he said to me, you have to. I said, “No way!” I was still calculating the cost of his data plan and what it would do to our monthly cell phone bill.
But, these last few months have been a litany of medical tests and appointments for Meghan and I. We are constantly awaiting calls, and test results. And, I have found that in Manhattan, many – ok MOST, doctors will Email for convenience. Convenient – if you have access.
I can’t access my personal Email from work. Even if it gets through the fire wall, it’s just a bad idea. So I find myself daily, as I run home from work to let the dogs out – frantically checking Email and responding as quickly as I can. I also find myself waiting a lot, at doctors, at dancing school, at swimming, at PT, wasting time where I could be handling all of this.
So, my husband sat me down for “the talk.”
“Remember after your cancer in March, when I told you to order the Cirque du Soliel tickets for Disney World? Remember when you told me there was no way because the tickets were such and expense. Do you remember?”
I did remember, as I stifled a giggle. He had explained to me that now, having had the “wake up” of our lives – we were to take some chances, have some fun, and DO things we wanted to do. He reminded me that we are fortunate to be able to afford nice things, and sometimes, we need to treat ourselves to family memories. He said, “If having cancer didn’t wake you up, I don’t know what will.”
So, I ordered the Cirque du Soliel tickets last March, and we thoroughly enjoyed the show in August.
Now, he said – it’s time. Get rid of this phone.
Probably only a slight exaggeration
And move onto this one.
“It’s time you stop worrying so much about every little detail. Have a little faith. Have a little fun. You have earned it.”
He’s right. He usually is. Last night I ordered my Iphone 5.
It will take about a month. I can wait. Poor Siri will be so busy with reminders she won’t know what to do. And I can’t wait to release a little of the pressure of having to remember everything.
Cowden’s Syndrome, with all the complications it added – means that that smart phone moved from luxury to necessity. And I must admit, I am resisting calculating the new bill because even I am little excited about being shoved into 2012!
And that my friends is how Cowden’s Syndrome (even) changed my phone!
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!
The starting line…
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.
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!
“It’s NOT fair Daddy!” Came the screech from the basement. I held my breath.
“You can’t do that Daddy! It’s NOT fair!”
When I heard my husband return the challenge with an “Oh yeah? Watch this!” I knew all was well. The giggling that followed sealed the deal.
I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”
She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms. She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”
She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me. She simply wiggled in the play time when there was room.
This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!” And I would have understood. I know very few people who have given up more blood than she has. And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!” But she didn’t.
This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell. Nope. “Won’t it be great to have them off before most of my friends even get theirs on?”
So as I scheduled one more MRI this week. This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!” Nothing. Just the typical, “Can you stay, and will I need a needle?” Followed by, “I hope I can watch a movie this time because I don’t like having my head done.” How disturbing that this will be her third brain MRI.
This has been one hell of a summer, following one seriously wild spring. I have lost count of the appointments, and it is probably better. They aren’t going anywhere and we will continue to have to roll with it. As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”
But then I look at my 9 year old. Wise beyond her years. Content to live in this house where she is so loved and appreciated. We have had many talks about the suffering of others through the years, and especially this year. She knows she is not alone in having a tough path to travel. She also knows it could be worse.
Maybe that contributes to the poise and grace under pressure. Maybe that is why she is so insanely mature. Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.
A friend of mine posted this on her Facebook page today. She is the kind of person who every day finds something to be grateful for. I love that about her. Those are the people worth surrounding yourself with!
Today was the kind of day that could have gone either way. Three doctors appointments back to back in Manhattan. Meghan and Felix home together. I was a bit bitter about wasting a day.
But I got a spot in my favorite lot, and got in a nice walk. Then I met a new dermatologist who studied me very closely. She KNEW what Cowden’s Syndrome was! And, as she took my medical history about the breast cancer, and the hysterectomy, she said “you look awfully good for the year you’ve had!” I had to smile. She understood the rarity of Cowden’s well enough to call the resident in to look at my gums, and what I have come to learn are “classic” Cowden’s marks on my palms and feet. The resident is studying melanoma specifically, so she let her “double check” and ask me all sorts of questions. What a treat to not feel like a freak and be in a room with people trying to learn. Even more of a treat to hear that all is well, and I don’t have to come back for 6 months.
I made it to doctor number 2 – the endocrinologist with time to spare. So, she took me early. An exam, some conversation about the past few months, (through NYUs new system where all the doctors are linked,) some talk about a bone density test in the next few month, a script for blood, and an invitation to return in 6 months. Wooohoo! 2 for 2!
Early for doctor number 3, the breast surgeon, I had to endure a bit of a wait. She however, is THRILLED with my healing, and said I don’t need to see her for a year! (We will do 6 months just so I stagger her with the plastic surgeon, one every February, and one every August – but still! :-)) She asked about my new oncologist, also an NYU doctor, who had contacted her to discuss my case.
Am I starting to feel like there is a competent team of doctors out there?
So, I made exactly the same appointment, same three doctors, February 19th. How nice to come into the city once and park once, and get three done at once. Maybe… just maybe… we can start to get our lives back, little by little.
I was home by 2. Enough time to spend the rest of the day with my family. Who cares that the black car doesn’t start. We will take care of that another day…
When I saw that picture tonight I had to smile. I could have had a really crappy day – but I didn’t.
beatingcowdens 