I actually watched it happen. We were walking up the hill to swim practice last night. Then she was limping.
She handed me her bag – struggling to balance. Before I could ask what had happened…
“My hip, my groin, the whole thing!” Gesturing near her hip bone and down her outer thigh.
I looked for a bench but there was none. She wasn’t interested anyway.
“We can’t sit – I will be late for practice!” Exasperated that I would even think she should stop walking while writhing in pain.
“Um, Meg – I was thinking you shouldn’t go to practice.”
“No way! We are here. I am going, and besides- the only time I feel close to normal, like everyone else – is in the water.”
We took away soccer.
We took away dance.
We can’t take away swimming.
Spring 2013
So I made sure she asked her coach to help her stretch the hip. She stopped only once during the hour and fifteen minutes. I am sure I could not have kept up.
As I walked, and she limped back to the car she said it was, “not so bad.” And, she was “glad” she practiced.
Dedication. Admirable. Torture.
After the shower it all fell apart quickly. She froze almost completely. We rubbed it, and elevated it. Within an hour she needed help walking.
She got settled into our bed and tried to rub her hip.
The yelp indicated the pain on her hand and wrist has not subsided either.
As we got her comfortable I thought forward, about the week to come.
I emailed her genetecist and her oncologist this week. I attached photos of her hand. I attached the copies of the MRI report. They responded inside of a few hours.
Biopsy those lesions. On this they agreed. Cowden’s Syndrome -PTEN Hamartoma Tumor Syndrome. Soft tissue tumors are common. The oncologist reminded me only one lesion was visible during her exam just 2 weeks ago.
I know. I watched the other one pop out as she cried out in pain during a shopping trip to Kohl’s. It wasn’t there. Then it was. Now it is. And it hurts too.
Tuesday we will see an orthopedist. Thursday we will see a hand surgeon. Two more doctors we didn’t plan for. Two more afternoons lost waiting. Two more opinions to contend with.
And the prevailing uncertainty that anyone will ever fix the problem.
She is walking a bit better tonight. That is encouraging. A nice afternoon with a friend. Conversation for me was easy and comfortable. Grown up talk – something I have craved, while the children swam in the pool. Almost normal for a few hours there. Almost.
The car is going to stay in the “car doctor” over the weekend. Apparently its condition has been downgraded.
Paperwork to begin a complaint with Better Business Bureau should arrive early next week.
Maybe I should give the CAR an ISAGENIX shake or meal bar. It might be more productive than what is being done to it.
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.
As I was getting ready to say goodnight to Meghan a few days ago, she was visibly upset.
During our conversation I learned that she felt the cleaner I had just given her for her face had made the small bumps she has (courtesy of Cowden’s Syndrome) more noticeable than before.
I didn’t see it.
I look and I see my beautiful daughter – radiant inside and out.
Cowden’s affects the skin, and sometimes we get these obnoxious small bumps in all places you would never want them. Dermatologists with little experience with the syndrome don’t recognize that each one is in fact a tiny benign tumor, in the hair follicle, causing inflammation.
She is almost 10. She is 5 feet tall. She has fantastic hair and a great attitude about life. But, like any girl in this society she gets self conscious about her appearance at times.
So, in my effort to reassure her that her “bumps” were most noticeable to her, I showed her my legs.
Both legs are riddled with bulging, pulsating, colorful varicose veins. I have had 7 surgeries to keep them under control and eliminate the pain that goes along with them. I have over the last 2 years lost about 35 pounds. They just don’t let up.
I told her how self conscious I am about my legs. I told her how hard it is to wear a bathing suit, or shorts. I told her that I have only bought my first shorts in over 10 years in the last 2.
I know now what I didn’t know then – that these relentless varicose veins are likely a credit to my Cowden’s Syndrome, and the same path that led Meghan to that pesky AVM in her knee – a generation earlier presents as these veins in me.
She looked at me, pointing out my own insecurities, and she said Mom, you have to understand – it looks worse to you. And you have to remember, “Some people only wish they had legs… or legs that work.”
And there it was. My girl again.
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears…” – Laura Story
We took the iPad. We looked at pictures of veins. We looked at pictures of acne. We looked in the mirror. We hugged.
Sometimes its so hard. One battle after another on this journey.
I don’t know that I could handle anything so gracefully without my young teacher.
First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.
Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.
I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.
By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.
In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.
In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.
In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.
In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.
Then – just about when I was ready to turn 30 – we had Meghan.
Disney 2012
Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.
In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.
In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.
In my 30s I learned how to balance two full time jobs, as a mother and a teacher.
In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.
In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.
In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.
In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.
In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.
In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.
In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.
In my 30s I learned what it was like to hear the words “You HAD cancer.”
In my 30s I learned which body parts are “extra.”
In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”
So much has changed, and yet at my core, my heart – I am the same.
I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.
I know life is not fair.
I know God is Good.
This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.
I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.
Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.
So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.
This is really how I view the race against Cowden’s Syndrome
Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.
I do the best I can to show her that its important to stand up for what you believe in.
I think she gets it. I know I do.
The 30s have been a ride, and I still have a few more months to go.
In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.
If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.
Sounds ridiculously cheesy I know. Sometimes the bad things are just crap. And some days just stink. But, not most of them. Really, if I think about it- just a few days now and then really stink. The rest of them seem to hold within them some lesson, some joy, some laugh, some memory – something that makes my spirit richer than it was before.
Don’t ever delude yourself into thinking things are perfect here. That would be a lie. We have our whiny, cranky, in each other’s way kind of days. But that’s not most of them.
Lots of rotten things happen to everyone. But lots of good things happen too.
Lots of rotten things happen when you have Cowden’s Syndrome. Sometimes the key lies in looking at things from a different perspective.
Every moment. Every meeting. Every diagnosis. Every doctor’s appointment. Every report read. Every bill fought for. Every new teacher. Every new friend. Every old friendship renewed. Every miracle. Every ordinary moment. They all bring us to where we are.
Maybe I have watched too much sci-fi with my husband, but to change any one thing, any event in our lives, could alter the course of our lives.
I won’t spend time wishing things away- certainly not the good, and definitely not the bad.
Sometimes the lessons hurt. Sometimes they make us cry. Sometimes, like when we say goodbye to dancing school, and all its emotional joy, coupled with insufferable physical pain, we get a little sad.
Then we say, if it wasn’t for dance, we wouldn’t have learned love of the stage. If it weren’t for dance we wouldn’t have seen a growth in confidence, and an ability to manage a growing young body. Losing dance is hard…
But if there wasn’t Cowden’s, and chronic pain, and an inability to deal with impact – would there be swimming?
Private lessons at a local college start Saturday. Regular practice begins the next month. She salivates when she gets near a pool. She just wants to get better and better.
New sport, new school, new friends, and old ones too. Same old pain. Same nasty viruses. Some things change, and some remain the same.
Sometimes I wish (quietly to myself) that life could be a little bit easier. Then I look at my daughter, and my husband, and my dogs, and my house, and I think – things are just fine right here.
We have each other – for the ups and downs- for the ins and outs.
They say if everyone had a few moments with everyone else’s problems, they would fight to grab their own back.
I remember being much younger and loving puzzles. We would set them out on the table at home and everyone would take some time trying to get it going. They were big and had lots of pieces and were often slow going at first. Everything looked the same, and sometimes it could take hours to fit in a few pieces.
Then, over the next few days, and sometimes weeks, with everyone taking a turn, slowly the picture would start to take shape and the puzzle would come together. It was always so exciting once you could make out the features, and so much easier to plug in the missing pieces.
I remember the feeling of satisfaction as one would be completed. There was something especially gratifying about those last few pieces. It was that feeling of satisfaction. We set out minds to this. It took a few of us, but we got it done. We figured it out – together.
By now you can probably see where I am going with this.
Today marks one year since I wrote my first blog post in 2012.
In one year the posts I have written have been read over 30,000 times. People have stopped by to read some – or all of our journey with Cowden’s Syndrome.
I have met other Cowden’s Sufferers through this blog, and on the internet. I have received messages, and corresponded with quite a few. I have learned their stories, and heard about their puzzles.
I have also “met” a few with other puzzling disorders,figuring life out and getting by one day at a time.
I am sometimes forever humbled, and amazed by the odd and abstract idea that people who I don’t know have gotten to know us, and used us as pieces to help complete their own puzzles.
I noticed a link on my blog today from “pinterest.” Having never been to the website, I clicked the link to find a picture of my family. http://pinterest.com/pin/290974825894950598/
I was pleased that it was used in its proper context, and was mentioned in terms of rare diseases. But, I was still amazed. Someone had read, and linked, and…
Well, the possibilities are endless. Thank goodness for the internet.
Where else would I meet people from all over the world,. and swap stories about a genetic disorder with an occurence rate of 1 in 200,000? Where else would I find organizations like
This last year of blogging has been an awakening for me. It has opened my eyes to so many other people, their stories, and the world at my fingertips. Since our diagnosis in the fall of 2011 it has become so important to become aware, to gain support, to advocate for others, and for ourselves.
I remember working on puzzles as a little girl. I remember that feeling of satisfaction when the puzzle was complete and the picture was clear.
I don’t do those kind of puzzles anymore.
Now I figure out how to prepare 2,000 denim ribbons and get them distributed on time for Rare Disease Day.
Now I work on helping my girl find her place in this world – trying to be a “regular” kid, yet undergoing so many more stressors than any 9 year old should.
I work on puzzles that lead us from one doctor to another, dropping them like leaves off the trees on a fall day.
I work on puzzling questions, and I persist until I get answers.
I get overwhelmed sometimes – looking for the pieces I can’t seem to find.
Sometimes I want the puzzle to have its edges all done, the way I learned. I want it to be neat. I would like all the matching colors to go together
But, that isn’t how life is designed to be. Not with Cowden’s Syndrome.
Not for any of us really.
Maybe it’s not a puzzle – but more of a domino game… branching off in so many different directions. Occasionally stopped by a dead end – only to find another path.
Or maybe it’s just a puzzle of an “atypical” sort. Not one that actually fits in a box. One that requires patience, time, dedication and focus.
In front of me tonight are 22 pages of blood work drawn on my daughter over the last month. There are some definite issues. My phone consult with her doctor is a week away. In the mean time I am left to try to put it together the best way that I can.
I handle each piece delicately, gingerly. I don’t want to damage anything, or miss anything either.
There is no picture, no model to duplicate. There are no directions. No guide. Just instincts. Prayer. Love and support of friends far and near.
Tonight I will study until I can figure out one more piece. Then there will be tomorrow.
The journey is long. The puzzle evolves. I am not going anywhere.
Meghan slept until 11:20 this morning. She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.
We had woken earlier, Felix and I – but not too much earlier. We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan. She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off. We have a lot of respect for her body. It gets VERY cranky if you don’t listen carefully.
My three girls… resting together.
But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.
When she came stumbling out of her room to the sound of the hammer she was dazed but smiling. After a good morning hug she asked what we had to do today. When I told her that we were going to stay home all day she leaped into my arms.
Can I read? Yes…of course.
Can I watch some TV? Sure.
Can I take my shower later, and stay in my PJs? Absolutely.
While part of me was tempted to lecture her about getting up and showered and dressed, I refrained. Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.
In so many ways Meghan and I are somewhat different, but also a good deal alike.
Our bodies eventually shut down if they are always on the go. We need our down time.
Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up. They still move like that. And I still need to stop sometimes.
Now, I have a mini -me. (And my sister has two! :-))
Me and my girl!
So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off. For most of the month we were on a 7 day schedule.
Meghan switched schools.
We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….
But, we did it. A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.
State tests – 6 days of them in the last 2 weeks. Stress – all of them. But they are over too.
Yesterday I pulled out Meghan’s spring clothes. There wasn’t much we could use. The sandals from last year were a size 6. She is a 7.5. The same was true for the clothes. We put even less away for the fall. Nothing really. But we will cross that bridge then. Right now she is almost 5 feet tall and every inch of her beautiful inside and out.
No wonder she needs to rest sometimes. Her body is certainly hurrying its way through its growth.
I spent the entire day at my desk. I just finished about an hour ago when I began to write. There were bills to file, papers to sort, letters to write. There is a letter writing campaign I am working on for a stop sign by my school.
There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.
There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.
I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite. I thrive on order and organization. I showered early – like I always do, but I relaxed by creating order.
You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it. “You plan – God Laughs.” And I know she is right.
I really should listen to my Mom…
However, in this world where so many things are so far out of my control – I have a compulsion to control what I can. I can make sure the floor is clean, and the bills are paid, and the laundry is done. I can make sure there are always cupcakes for Meghan in the freezer in case there is a party. I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.
Crazy? Maybe. But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.
The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning. This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up. I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption. And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.
That is how it goes. Cowden’s Syndrome keeps us hopping. And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.
So – for tonight, the floor is clean, the list is made, the desk is organized. For tonight I can rest, and gear up for whatever this week has in store. And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.
I’m not in charge of this. It’s in the hands of a power far greater than any of us.
I’m only in charge of keeping the fur off the kitchen floor.
Working full-time is necessary, and carries some definite benefits, but huge time demands.
Being the Mom, and managing the bills, the groceries, and the lions share of the housework (and I have a helpful husband! :-)) is well, some days like standing at the bottom of a really tall mountain…
Having a chronically ill child is trying on the nerves. Worry and doctors appointments compete against waiting and absorb the bulk of any free minute.
Having a chronic illness, a rare genetic disorder like Cowden’s Syndrome yourself – well, it creates some challenges. And that is putting it nicely.
But, to combine all of the above… well I can tell you I wouldn’t trade any of them – but I am exhausted.
I spoke this week with a friend from work. Her son is chronically ill, but was suffering an acute episode one afternoon. This week Meghan felt fine. So, I had the opportunity to spend a short amount of time empathizing. While I was unhappy that he child was ill, I was in awe of her poise as she anxiously awaited news of her son’s condition in NJ. I think my heart was in my throat – yet my admiration for her composure under pressure could not be stated.
I am sure I am not the only one exhausted. I know I am not the only one contending with these issues. And, even if they were different – dare I say I almost felt normal – listening to others for a change?
My perspective is usually pretty good. I work hard to put myself in other people’s shoes. I talk a LOT with Meghan, about various social situations, and try to help her see that her point of view is never the only one. We have most of our best conversations in the car.
Tonight as we headed home from my in-laws I could no longer escape the conversation about the horrors of the Boston Marathon. I had shielded her for a few days because I truly just couldn’t gather my words.
So, tonight as I explained what the bad people had done, and I answered her questions, she was, as the rest of the nation was, absolutely appalled. And I spared her MOST of the details.
She wanted to know why people have to suffer. And she wasn’t talking about herself. She was talking about these victims, as well as other people – children and adults, with cancer, or other major struggles.
There was no right answer. So I gave her the best one I could. We have things in our lives to deal with – all of us. I don’t believe God picks us out to suffer. There is evil in this world. But I do believe, that we are given the strength to handle our struggles if only we ask. And, we are given the tools to use our struggles to make a difference in the world.
So she asked why people do evil things. Again – no right answer. So, I gave it my best. I explained that there are evil, awful people in this world, and she will encounter them at certain points in her life. But the beauty of it is, that for every evil person, there are probably hundreds, or thousands of good people. Those are the people we seek out in our lives. Those are the people we center our worlds around.
People are not inherently bad. Most people are downright good. And I reminded her of the stories I have told of the heroes of 9/11. And then I told her about he heroes in Boston.
I told her of the resolve of the police and all emergency personnel that REFUSED to give up until their people were safe. I explained how they put their lives on the line every time they rang a bell or even took a few steps. Yet, they would NOT stop. They shut down a city and they made it happen. They worked together, and they arrested their suspect. These are the good people.
And then there were the ones, who helped the injured at the marathon. Civilians and emergency workers alike. They ran in to give a hand because people were in need.
There are some rotten things in this world. There are diseases and illnesses and suffering. There are awful, evil people too. But we, we will live our lives focusing on the good guys. The ordinary folks that “wear the capes.”
This world is not full of evil people. It is full of good people who so often stand together intolerant of evil and focused on human decency.
God Bless the Boston PD, and all the emergency workers, and all the brave citizens.
We stand with you. We thank you. for reminding us that there are so many good people in the world.
So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.
I have absolutely no idea if her assessment is accurate. I am only grateful that for one afternoon, her anxiety was lower.
Last night before she went to bed, we spoke a lot about testing, and my expectations for her.
As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.
So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.
Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.” This followed by a cheery, “Chill out – You got this!”
As she lay her head down, last night, and tonight, she repeated those words to me.
There really are so many teachers who “get it.” The kids are so much more than any number on a piece of paper.
It is such a challenge being on the parent end of things.
But, at the end of the day, these aren’t the tests that matter to me. Not really.
On Monday the 1st of April there were 13 vials of blood. On Saturday the 6th there were 15 more.
This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.
These are the tests that keep me up at night.
These are the tests she has no control over.
These are the tests whose scores really do matter.
beatingcowdens 