Maybe the hardest part about being a kid with Cowden’s Syndrome, is trying to be a kid.
I wouldn’t know. My diagnosis came way after I was a “kid,” although I might say that it was never easy fitting in being the kid who was always at the doctor or in surgery – for something.
Meghan has kids who like her, but precious few that she calls friends. The girls she is close to are lovely through and through. I find them similar to Meghan in developmental exposure to the real world. They still know how to play dolls and be kids.
This week the swim meet was against the team of one of those friends. This is a young lady who has been to my home, and Meghan to hers. She chose to write a book about friendship and dedicate it to Meghan. They took countless swim classes together. So, the fact that they would be competing, in some of the same events today, caused anxiety for Meghan.
She worried about losing – and about winning. She wasn’t sure how to digest either one.
After the race where she took second and her friend took third, her dear sweet friend, half Meghan’s size, stayed behind to try to help Meghan out of the pool. I wanted to hug her for being so graceful and such a lady. That little girl, whom I always respected, gained my admiration forever right at that moment. It spoke volumes of her character.
So as we replayed the meet in the car on the way home, Meghan was pleased to have placed well. It was only her second competitive meet ever, and she was enjoying the feeling of competition. We didn’t dwell on it, and after a shower we were off to buy some shoes for Easter, and a sweater too.
Imagine then my surprise when I overheard her on the phone with another classmate bragging about her win over her dear friend.
When the conversation ended we spoke and there were tears. She was just so proud to finally be successful, she forgot herself. Now she was just beside herself. She was worried her friend would find out she had bragged, and was terrified at losing her friend over nonsense.
So, she did the bravest thing I could have imagined. She called her friend, and confessed. Knowing she might never get caught, she could not live with the fact that she had been disrespectful to someone she held so dear. So, in between sobs she told her friend the whole story. And she apologized.
I am sure she won’t do this again any time soon. She was devastated.
And her dear friend – I expected nothing less – greeted her with a pure and forgiving heart. Turns out she herself had once bragged, apologized, and been forgiven.
I love it when a story ends well. Life lesson taught. All friendships in tact.
A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.
I was right.
I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.
One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”
We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…
My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.
Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.
And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.
I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.
Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.
She can keep her award…
At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)
I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.
This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.
Finally it was time to head to the operating room.
I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”
They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.
Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.
The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.
I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.
So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.
And what a year it has been.
A roller coaster ride!
A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.
The weeks of recovery went smoothly, with lots of help from mom.
And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.
This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)
I really did love my Hyundai
It included Grandma’s fall, and ongoing recovery.
It included circumstances that caused me to step away from my church, and blessings that led me to a new one.
This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.
This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!
This year we vowed to make a difference,
This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.
This year was only the beginning of the rest of our lives.
One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!
Sometimes little kids can be misguided. Sometimes, Mom, Dad, or teacher is in fact the BOSS of them. But that statement from the mouth of a child is the beginning of their move towards independent thought. And, if nurtured properly can lead to a productive, independent, determined adult.
That’s what we are getting at here.
You see I spend enough time around children, that their words and phrases sometimes stick with me. And this one is stuck with me this weekend. So I reflect how it applies to my 9 and a half year old daughter and my 39 and a half year old self.
See, even though Meghan is very good at realizing I am often the BOSS of her, she will not be easily ruled. And while I love her independence, I love more the fact that she remains respectful towards her father and I – and dare I say, all the adults she deals with. She, as an only child has lots of bosses, but I encourage her to rise up against the tyrant that is Cowden’s Syndrome – and she does.
If Cowden’s Syndrome were her boss, she would sit idly by while the pain persisted; in the knees, the ankle, the shoulder, the wrist or whatever joint it currently is attempting a choke hold on.
But, since its not – she goes to dance class on Monday, Swim practice on Tuesday, Music and Movement on Thursday, and Swim Meets on the weekend. She often cries in pain in the hours following these events. But never once does she talk of stopping.
You see, Cowden’s Syndrome is not the boss of her.
Cowden’s Syndrome would have her hide in a corner, ashamed of an “orphan” disease that no one can really understand. But hiding is not for my girl. Instead she asks for a denim ribbon necklace. She learns about the Global Genes Project, she understands “Rare Disease Day,” and she actively participates in the “Wear that you Care” campaign. She makes thousands of denim ribbons, and informational fliers. She gives 2 speeches at her school. She even wrote a book about it. HA! Don’t tell her no one really knows about Cowden’s Syndrome – because she will take it as a challenge, and fix it.
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”
Cowden’s Syndrome – with its biopsies and cancer risks would like to leave us terrified. Instead, we are empowered. Meghan got the anesthesia she needed and deserved, to have her last thyroid biopsy with dignity. The terror is gone. We will have anesthesia next time too. And, if the cancer hits – we are ready. We are empowered.
Cowden’s Syndrome – You’re NOT the boss of us.
You certainly don’t rule me. 85% risk of breast cancer – yeah, so? Endometrial cancer? Nope – don’t need that either. Thyroid cancer – half gone already, and checked every 6 months. Melanoma – nope. And annual skin exams just to be sure. Colonoscopy – did that. Clean enough to wait until 2015. My spleen – well. That’s still in limbo. But you know what? Whatever. I have stared down worse.
Just came back from my girl’s first swim meet. Time to relish in the satisfaction that something normal happened here today. We will handle the pain, with the smile of knowing – she’s pretty fast.
I know you’re staying Cowden’s Syndrome. I know we can’t ever get rid of you. But, seriously. Unpack in the basement closet and stay away from us.
We left the house today with only the normal jitters. We even had time for a few family photos.
I have been teaching for 16 years.
I have addressed hundreds of students, if not thousands through the years.
I pride myself on being able to get their attention with minimal effort, and keeping it in most cases.
Sometimes it can be a bit more trying – like a full auditorium, as opposed to a closed classroom, but with the right presence and message, it can be done.
I did not get to hear Meghan’s speech today first hand. I was thrilled to see her happy smile when I picked her up. I knew she felt it had gone well, and that was most of the battle won.
While she was doing her homework I watched the recording her para had kindly made for me. I was awestruck.
Not only was I impressed with my little girl, and the clam, confident way she spoke, I was AMAZED by the quiet in the auditorium.
Now I know they are taught good manners, but this went beyond that. She HAD them. They cared about what she was saying. They were interested to learn about Cowden’s Syndrome. They were hanging on her words. The applause at the end confirmed it. She nailed it. Public speaking is not an issue for my girl.
The day followed with a Skype call to her friend Connor in Colorado. They struggled with the video feed, but they had audio and will try again next week for the video.
I know its only the US, but “Rare Disorders without Borders” here we come!
HUGE smile. Giant fatigue. Her day was a success. And now, tomorrow, she will give her speech all over again to the 4th and 5th graders – her peers. May it run just as smoothly!
Meanwhile, back at my school – the ribbons were distributed. The jeans were on. The kids were charged.
Many of them even decorated their doors with the Global Genes Project – denim ribbons. This was a huge school spirit event. I received cards, letters, and even a pack of thank you notes from one class. It was beyond touching to see my colleagues, supervisor, and students, all in their jeans with their denim ribbons.
“Hope it’s in our Genes”
We clearly are not alone.
My Mom and I
All day long the photos came in. My Facebook page was hopping.
My nephew’s PreK staff on Long Island, my friend’s Catholic School on Staten Island, a few ribbons to a local HS, junior class at another school wearing theirs to support a family member. My sister had hers at work, and so did some dear friends.
“Next year…”
Next year can we do a fund raiser too?
Next year can we involve more schools? Maybe all of Staten Island?
Next year…
I got tons of requests, and offers of help. We know LOTS of really great people.
Next year, maybe we will help raise awareness even more.
But this year, tonight. I am tired.
I am grateful.
We are smiling. We are blessed.
Right now, Tylenol for her pain. TLC for her nerves.
Yesterday was another trip to the rheumatologist. She is lovely, but hasn’t a bit of a clue why Meghan’s pain persists – often through the Celebrex, and ALWAYS without it.
She prescribes the medicine. She examines her. She sees no signs of Juvenile Rheumatoid Arthritis.
We speak for a little bit about Cowden’s Syndrome, her thyroid, and some of the other battles she has endured. I ask the doctor if this could all be related.
And she, candidly, honestly replies, “I don’t know. I am starting to think there is some link, but I don’t know enough about your syndrome to put it together.”
Well at least she is honest. But it is tiresome. The traveling. The doctors. The lack of answers.
So tonight, as I gave Meghan Tylenol after swim practice because the knee pain wouldn’t cut her a break. We turned our thoughts to tomorrrow, and the 6th Annual World Rare Disease Day.
This year’s motto is “Rare Disorders without Borders.” It got Meghan and I to thinking about how nice it would be if doctors in all the countries would share their research. There are so many rare diseases throughout the world. So many more dire than our own. There are so few people even looking for cures. As she chats and gets to know a girl in Australia with Cowden’s, we can’t help but think about how much more voice each of our disorders would have “without borders.”
We talked a little about the newspaper article, and how it has helped spread awareness in out community. We talked about all the ribbons we have made and distributed, and how nice it will be to see them tomorrow, and know we are not alone. We have raised awareness of Rare Diseases, and we have only just begun.
Meghan, and her determination will see her dream of the “One of a kind” necklace with the Global Genes Project Logo, find its way into their new store. She will see more and more people recognizing that “Hope is in our Genes,” and the denim ribbon gives an identity to those who too often have none.
Tomorrow people will understand what it means to “Wear That You Care,” as they don their jeans locally and globally.
My daughter, one of the compassionate people I know, is also the least judgmental. She is kind. Because she knows what it means to need kindness. She is kind because she has faith, and wisdom gifted to her. She is kind because, “You can’t tell by looking at someone if they are sick or in pain.”
We share a genetic mutation. I am her mother. She is my role model and my hero.
Maybe tonight I would have to call Meghan the “Guest Blogger.”
What you read below is her speech. She was asked to prepare something to read for her school for “Rare Disease Day” on Thursday. She is an excellent public speaker, and fights only a few “butterflies” before she speaks. She always makes me so proud. I wish I could be there!
The text of the speech was written by her. I typed it, and then she went back in and changed it again. I added the pictures… just for here – because I like to!
She will review the speech with her principal tomorrow, but I don’t expect many changes.
Some of you, who know me, know me as Meghan Ortega. Or, maybe you know me as Meghan from 4th grade, or Meghan from Mrs. Worsdale’s and Mrs. LaMonaca’s class.
You might, if you know me a little better, know me as Meghan who loves to read, and swim. You might know me as Meghan who loves dogs.
Maybe you know that I have 2 dogs that I love, and a mom who is a teacher and a dad who is an electrician.
Lucky, Meghan and Allie – My three girls
But, until today, very few of you knew that I am Meghan Ortega and I suffer with a Rare Disease called Cowden’s Syndrome.
Until September of 2011 I didn’t know I had this Rare Disease. What I did know was that something was wrong and my body was far from that of a “normal” kid.
For as long as I can remember, every week of my life has included AT LEAST one doctor’s appointment, and lots of times even more.
You’ve all been to the doctor and you know it’s not fun. It involves waiting and waiting…and even more waiting. It also involves poking and prodding. For me, it often means being sent to more and more and more doctors…
My mom says when I was a baby I wasn’t really comfortable, and I cried all the time. I almost never slept, and wouldn’t drink my bottle.
When we talk about it now, we think my body knew I couldn’t handle dairy products, and dairy is in milk.
Mom also tells me that I started seeing lots of doctors when I was just a few weeks old. Soon there were doctors to check almost every part of my body.
I have had 9 surgeries. I remember having my gall bladder out before I turned 4. I also had a lipoma (a soft tissue tumor that people with Cowden’s Syndrome get.)
I had knee surgery 4 times for an AVM in my right knee. An AVM is a vascular malformation. It is also common in Cowden’s Syndrome. It feels very strange because it pulses like your heart beat. Every time I had that surgery the doctor thought I wouldn’t need another one. But they have already done 4, and they are not sure if the AVM will ever go away, so I will probably need more.
Because I am in pain so much, I get physical therapy in and out of school. My outside physical therapist, Dr. Jill told Mom that she should take me to see a geneticist. I didn’t really understand what that was, but we went because that is just what I do.
Dr.Pappas at NYU was really nice. He examined me and he talked to me and mom. When he was done he drew some blood. He said he was pretty sure of what I had, but we had to wait for the test results.
In September of 2011, just as I was starting 3rd grade, we went back to his office and he told us that I have Cowden’s Syndrome. It means that my PTEN gene is broken. Your body is made up of all sorts of genes, but these are G-E-N-E-S, not J-E-A-N-S like the ones you wear. PTEN is the gene that keeps your body from growing tumors. Because mine is broken I get more growths, like the AVM, the lipoma, and the nodules on my thyroid that I have to have checked every 6 months.
As soon as I was diagnosed, the doctor talked to my mom and said she probably had Cowden’s too. He took her blood and a few weeks later she tested positive.
Because of the Cowden’s my mom had lots of tests done, and it explained a lot of things about the 17 surgeries she has had. On March 5th it will be a year since she had surgery for breast cancer. She is just fine. She says that knowing she had Cowden’s helped her find it early. She says to everyone that my diagnosis saved her life.
When I am here at school I smile a lot. I don’t like to dwell on anything bad. We spend enough time with doctors so I try to enjoy my time with kids.
You would probably never know by looking at me, that I am in pain a lot. I take medicine every day that helps my joints hurt less than they used to, but still most days I have pain. It is hard for me to climb up the stairs, and play at recess, but I do it.
We first heard about “World Rare Disease Day” last year, but at the time we were a little too stunned to do anything about it.
This year I told my mom I wanted to do something to make people more aware of Cowden’s Syndrome and all rare diseases. I was not ready yet to do a fund raiser – I just wanted to get the word out that Rare Diseases like ours exist. There are over 7,000 of them!
I shared my idea with Mrs. Manfredi and she said I could give out the ribbons and information you received today. I was really excited.
“Hope it’s in our genes” is the motto of the Global Genes Project. They try to raise awareness and find cures for all rare diseases.
Today I think it’s important for you to know you can’t ever really judge someone by how they look on the outside. You never know what’s going on inside of them.
What she does have is strength, stamina, and courage unrivaled by most. She is a tough cookie. An inspiration with her determination. Not once throughout her life have I ever known her to give up.
Mom is a survivor.
Long before she was a breast cancer survivor, she was a survivor of life.
She survived a divorce, two jobs, and raising 2 kids alone – with the help of my grandparents.
She survived sleepless nights, and worry.
She battled for her kids- fought doctors, insurance companies and the like. And, she even battled with us on occasion… If you can imagine that!
Long before she was a breast cancer survivor, she was my Mom. And she taught some valuable lessons I still use today.
(My sister posted the other day that “Some days I open my mouth and my mother comes out!”)
These are her words coming out of me these days….
But God is good – all the time!
And….
I really think I am OK with this concept, but we all need a reminder sometimes!
When my Mom was diagnosed with breast cancer I was 23. I was scared. She might have been scared, but she attacked it with her “matter of fact” attitude that I think is what has gotten her so far.
She went for her first mastectomy on February 24th of 1997. She was just 48. The second mastectomy followed in April when cancer was found in the other breast. 6 months of chemo followed. 5 years of Tamoxifen followed that.
And she just kept right on going. Even though some days she felt like this…
Truth be told, maybe we all did. But I did what I could to help out with her, around the house, and with my little sister. I was really just amazed by her drive. But I think I still am.
Last year when I was scheduled for my mastectomy, the surgeon asked me who had been with my mother during hers. I told her my dad and I had. She said, “Well call mom and tell her its time to return the favor.”
I called her on the ride home and although I can’t imagine it was an easy call to take. She never flinched. She took the week off that I had the surgery (a HUGE compliment from someone who sparsely misses a day of work.) My recovery went so smoothly. And I had some of the best conversations of my life with Mom that week.
When my pathology returned DCIS, she was the first one I called. Neither of us were surprised. And, yet her reassuring words, that she knew I had “done the right thing,” gave me such peace.
Before Mom was diagnosed she dreaded turning 50. After all she had been through she embraced 50 with grace and charm, and a few years ago gave 60 a great big hug.
Mom’s 64th birthday – and 4 generations of tough ladies!
This is a picture from her 64th birthday a few weeks ago.
My mom may not be like everyone else’s. She can be a tough lady. She hasn’t had an easy life. But she has a heart of gold. And I love her for who she is.
As I grow I realize everyone does the best they can with what they have where they are.
I am thankful – so thankful – for these last 16 years with my Mom. I am grateful she got to know my daughter. I look forward to having her around for a long time.
A mother bonds with all her children, and she is close with my sisters – differently than how we are close. That’s what makes each relationship special.
We share some things that can’t be put into words…
Just past the finish line. Aren’t we “Pretty in Pink?” 🙂
She will always be my friend. I hope she knows just how much she is loved.
Trip across the Verazanno Bridge… about $6 with my EZpass.
But, the news from the dermatologist that I can stretch the visits a whole year, combined with the news from the breast surgeon that “everything looks great and I will see you in 6 months!”
ABSOLUTELY PRICELESS!
So we cross small hurdles gleefully.
We had 7 appointments carefully scheduled for this week to avoid time off from work/school. Three doctors apparently realized last week they have kids at home and cancelled. So this concise week of appointments will stretch a bit, but I have begun scheduling the 11 doctors and 4 scans I can remember that are due in June/July.
I will do everything in my power to consolidate them.
An interesting “conversation” in one of my online groups this week, regarding increased levels of anxiety and depression conected to PTEN mutations.
This is really how I view the race against Cowden’s Syndrome
One of those conversations that make you wonder if it is better to be validated or to fight the idea that this perpetual anxious feeling is actually hardwired into your genes.
I looked up the articles too. I love to read for myself. The experiments are done on mice. I suppose there aren’t enough of us to get a controlled group for a good study, (although there is a drug called rapamycin being studied on humans – but that’s for a different day.) But, among other symptoms the mice in their mazes did show marked increase in anxiety. Although. I have to imagine if I was a mouse in a maze I might get nervous too…
Now I have a lot of throughts on this.
I have always been a worrier – highly anxious about most things. Anyone who knows me knows that to be true.
But, conversely – throughout large portions of my life there has definitely been something to worry about.
So, as the chicken/egg thing goes -do I worry because anxiety is a part of Cowden’s syndrome, and even before my diagnosis I have had Cowden’s? Or do I have acute bouts of anxiety because having Cowden’s gives me so much to be anxious about?
The best answer probably is – both.
I am a rational person by all rights. Even in the middle of my worst anxiety I can stop and think and KNOW that my fears are irrational. I can have the absolute belief that God will continue to care for the situation, and for my loved ones, yet still it is often like a crushing weight on my chest, making it hard t0 think, breathe or move.
What I have on my side is that I was raised to keep on keeping on. Thanks Mom, and Grandma and Pop especially… when the going got tough, we were taught to keep going. So while I comfort myself with verses about tomorrow having enough worries of its own, and while I am faced with horrendous tragedies of things that cannot be controlled, I am able to press on.
So I can function, and the anxiety does not cripple me. And, I know the “nature vs. nurture” reasons to explan it.
But I do know that my daughter suffers too. Not just with a PTEN mutation, and Cowden’s Syndrome, but also with anxiety. She is a worrier, “just like her mother” they say. Yep. Maybe she is like me because of genetics, or my example. I can’t really know for sure.
So what to do?
For me, the first step is just acceptance.
I am a worrier.
Regardless of the cause, and allthe logical justifications I can give myself – I will remain a worrier.
Then, find an outlet. I am still working on this one. I am thinking I like to write – so maybe that will help some. I would like to get a few minutes to myself now and again. I used to love to walk. Maybe one day there will be time for some nice long walks.
I meditate a bit on the bright side. Be grateful for the “good” that comes with a chronic illness like Cowden’s Syndrome. I am not referring to the pain, and the surgeries, and the cancers looming, but rather to the “warning” system built in. Parents would do anything to protect thier children. How blessed am I that even among the strain of ceaseless appointments and hours waiting at offices and for results, we have a warning system. I am confident that if we are vigilant, the Cowden’s won’t “get us.”
Stay organized. Don’t let the bills, the list of phone calls, the shredding, or the sorting to pile up. It will just keep coming.
Stay ahead of the school projects. You never can tell where tomorrow is going to land us.
Laugh. Often. It is deeply good not only for the anxiety, but also for the soul.
Recognize you have lots to smile about.
Acknowledge the pain of others and “Pay it Forward” when you can. I find that NOT dwelling on our lives here, helps make me less anxious.
Did the Cowden’s cause the anxiety? Is it hard wired into who I am as a person? Is Meghan destined to be forever wondering and worrying? Or, did a life of doctor’s appointments, pain, chronic disease, and general worry, create the anxiety?
It really doen’t matter because it is here. It is part of me, and to la large extent – us. I doubt it is going anywhere. I think its just my job to control the beast the best way I can, one day at a time.
I cried today. Yep. That was it. Couldn’t hold it in one second longer so I pulled the car into a lot. Thankfully I was alone. And I rolled up all the windows, locked the doors – and sobbed.
It only lasted about 10 minutes, but I caught a wicked headache, and a bit of stress release from that good old-fashioned hissy fit.
I generally make a habit of not allowing them. I am a look at the bright side of life kind of girl. I like to remind myself about others who have it worse, and try to put myself in other people’s shoes. It usually works.
Today the emotion got the better of me. And its OK.
Work was stressful.
Supporting my dear husband while he works his tail off three nights a week at school is well worth it, but stressful for all of us.
Homework. Constant. Ever changing. Tests that need to be studied for. Worry about things not yet complete. Yep, its only 4th grade. The teachers are lovely. The stress is really almost unreal.
Today we went to the Urgi center for X-rays of a foot and ankle that has been bothering Meghan since dance class Monday. She limped for 2 days before I thought – negligent mother should have a doctor take a look. Sprained. Takes time. (Besides the 2 hours out of the afternoon.)
In addition to Cowden’s Syndrome, Meghan has a few other neat things. One of her diagnoses is “Benign Hypermobile Joint Syndrome.” Great – if you can manage your flexibility. If you can’t it leads to all sorts of random injuries. We keep a really good PT around… just because.
But, if I am really really honest – I don’t think any of these things pushed me over into that screaming sobbing cry I so desperately needed. I think it was sadness. Sadness, mixed with raw fear.
Last night I sat with a friend and her 7th grade son at the wake for the little boy who died last week. I couldn’t for a minute imagine that any more sadness could fit in that one room. I had a lot of time to think while we sat. Maybe too much.
I looked first at his family. Mom and Dad poised, and carefully greeting each on the never-ending line. Big Brother and Little Sister, beautiful, supportive, composed. I told you. They could have been any of us. And I am sure they never in their worst nightmare imagined they would be standing there.
And I looked at the police officers, standing in honor. Each one with red eyes as they tried so hard to remain stoic. Undoubtedly they had kids of their own, or they knew the young man well – or both.
Children. Everywhere. Out of order for a wake. Except this time it was theirs. It was their friend. The kid they sat in class with. Young preteens – so many of them former students. Faces raw with emotion. A night they will never forget.
Tomorrow my friend and I, we will go to the funeral mass. We will represent our school. We will try to keep ourselves composed. But, her thoughts will wander to her boys, and mine to my little girl. I will think of the “close calls” we have endured, and the many the Cowden’s Syndrome has on the horizon for us. I shudder at the horror… at the potential.
And yet, if I let it consume me, what life will that be for my girl; my beautiful, generous, compassionate young lady?
If I let the tragedy overwhelm me with the reality that at any moment, any of us could be this family, I will lose track of what I have.
If I lose track, if I stop cherishing the blessings I have, I do not give any honor to the memory of this little boy.
Instead, I hug tighter. Try to strengthen the duration of my patience. Smell the flowers. Say I love you. Believe in angels. Remember what really matters.
I can not comfort this family. My words are useless. They have to find their way.
But, I am quite sure now why I cried, and why I had to cry, and why I continue to cry. I can weep and mourn, with them and for them.
I can hug my little girl, and then hug her again. I can make memories that matter.
Maybe if we all take some time to show some extra love. Maybe then we can find a way to keep his memory alive forever.
God, hold them in the palm of Your hand – tomorrow, and forevermore. Amen.
beatingcowdens 