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Meghan Speaks Out!

Published on February 25, 2013 by beatingcowdens8 Comments

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.

When did my baby grow up?

**********************************************************************************************************

Some of you, who know me, know me as Meghan Ortega. Or, maybe you know me as Meghan from 4^th 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 — 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 3^rd 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 5^th 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.

Be kind.

Be aware.

Rare Diseases are everywhere.

Thank you

** By Meghan – Age 9!

This one’s for you Mom – HAPPY SWEET 16!

Published on February 24, 2013February 24, 2013 by beatingcowdens2 Comments

This one’s for you Mom.

My Mom doesn’t have Cowden’s Syndrome. The tests confirmed that.

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! — 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! — 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?" :-) — 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.

Happy Start to your 16th year - CANCER FREE! — Happy Start to your 16th year – CANCER FREE!

Priceless!

Published on February 19, 2013February 19, 2013 by beatingcowdens4 Comments

Waking up before the rest of my family on a vacation day – 2 cups of caffeine.

Filling the car with gas- $50.

Traveling through the Brooklyn Battery Tunnel $13 roundtrip.

Parking for 4 hours – $25.

Two doctor Copays $20 each.

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.

Cowden’s Syndrome WILL NOT run our lives.

We are actively preparing for RARE DISEASE DAY…. (FEBRUARY 28th – Get your denim ready!)

Until Friday when we see the vascular surgeon about that pesky AVM…

Rare Disease Day

Published on January 31, 2013January 31, 2013 by beatingcowdens4 Comments

So tonight, as I turned the calendar to February, Meghan actually whooped with excitement.

When I asked her why, she told me that she was going to “Celebrate Rare Disease Day” this month.

I smiled in spite of myself. This kid can get excited about anything, and to imagine that 2 years ago we never even knew there was a “Rare Disease Day.”

This year she intends to celebrate with her usual charm and zest.

Our kitchen table is a ribbon making center. We are gluing denim ribbons at an alarming rate. She created a half sheet to attach to each ribbon, describing our connection.

Then, she bravely approached her school principal to get permission to distribute 950 ribbons to the staff and students at her school. She will ask them all to wear jeans on February 28th. And that day, she will not feel alone.

She is getting to know some of the other rare diseases, listed here.

http://www.rarediseases.org/rare-disease-information/rare-diseases

She knows ours is pretty rare, but the list is alarming. Almost 7,000 diseases fit the criteria for “Rare Disease.”

http://curiosity.discovery.com/question/criteria-to-determine-rare-disease

So tonight, after we left the dentist, with the encouraging news that she doesn’t think we need an oral surgeon. We were in a pretty good mood. Meghan and I looked in the mirror at the “cobblestone gums” (a hallmark of our Cowden’s Syndrome) that we share. Mouth issues are just another battle to be fought in the war.

Rare Disease Day gives her a focus.

The pain has been horrendous this week. The legs, the knee, the groin, the arms. Probably the weather – everyone says. Little solace to my 9 year old. The Celebrex seems to be quitting. Supplemented each morning by a dose of tylenol, she gets through the day.

But she lights up again when the talk returns to “Rare Disease Day.” She has hopes that maybe her young friend in Australia, or in Ohio – both with Cowden’s, might be able to Skype into her school.

She and I have matching shirts from with the Global Genes logo.

She wants to give these ribbons to anyone who will take them. She wants the world to know, and to understand. Even if it is only for a day.

She wants her pain, her doctor’s appointments, her worry, her biopsies, her surgeries… to matter.

She knows they do. To the people who love her. She knows there is a virtual army following her in prayer every step of the way. She knows they are praying for the “retinologist” visit, and for her eyesight, as well as for her health.

She knows that some of them she knows, and some she will never meet. She appreciates every single one.

And this is the month. She will have “her” day. She will include everyone. She will not feel like 1 in 200,000. She will not be lonely.

She hurt tonight. We rubbed her legs, and kissed her before bed. We have no idea if it will ever be alright So we don’t lie anymore. We do what we can, when we can.

I will contact the local papers, and see if I can get someone to pick up a story on a little girl who wants to change the world.

I will eagerly await a phone call from the Global Genes Project.

You will hear a lot about this during the month. Bear with us. We are not passive people. We work through doing!

Power Surges

Published on January 15, 2013January 15, 2013 by beatingcowdens2 Comments

525,600 minutes….

The song is stuck in my head.

Dates, numbers, zip codes, birthdates, anniversaries. I think in numbers. I think that’s why teaching math makes so much sense to me.

I used to balance my checkbook right down to the penny. Now I use “estimation.” Sometimes numbers are important, and other times not so much.

Tomorrow is the 16th. January 16th is the birthday of an old friend, but that wasn’t why the 16 was sticking in my head tonight. Tomorrow it will be 8 months since my hysterectomy. Not 6 months, not a year. Eight months is an odd “anniversary” to remember.

I don’t try to understand why I remember certain things. I just do.

Although if I have to guess, tonight the hysterectomy is on my mind because I am feeling my age. (Or perhaps a bit older than my age.)

You see when you have a complete hysterectomy in your late (very late) 30s, Mother Nature has a grand old time, messing with your body and your head. As the months go by your body finds ways to behave that aren’t quite “right.”

Yippee- you no longer suffer through monthly visits to the local drug store to relieve your misery. (She was never my “friend” anyway.) But that may be where the cheering ends.

Tonight I was sure the thermostats – yes both of them – were broken. I fiddled with them to get the chill out of the air when I got home from work. No sooner did I finish the first of the homework with Meghan, and I was removing layers. I checked the temperature again. It couldn’t be only 70 degrees. In my world we were in balmy Orlando in August.

Properly changed into a T shirt, I asked Meghan why she wasn’t sweating in her long sleeve shirt.

“Mom, it’s January. Are you OK?”

Yep. Fine. Guess the thermostats are fine too. It’s mine that is a little broken.

Mine is running hot and dry like the Sahara. Lots of water. No wine tonight.

The hysterectomy was a good idea. A necessary step in the “beating Cowden’s” process. I get it. I am not sorry I did it. But really some days I have to say this estrogen withdrawl thing is not for the faint of heart.

I popped one of the migrane pills. An added joy since the surgery – hormonal migranes. And the cool thing is (in my most sarcastic typing) that there seems to be NO rhyme or reason to their timing.

4 migranes my entire life before May. At least 8 since May.

With all the changes my body has been through this year, its a wonder we are still on speaking terms. I guess when I really think about it – it’s probably Ok that I am running at different speed these days. Bursts of energy, coupled with bone crushing fatigue…

525,600 minutes… Cowden’s Syndrome has kept us busy. I can only imagine what 2013 has in store.

Now if you’ll excuse me…. I have to go stick my head in the freezer…

Lessons Learned in 2012

Published on December 31, 2012December 31, 2012 by beatingcowdens9 Comments

What a year! Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect. As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital. Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be. The more things change…

In 2012…

I lost the ability to say, “I can’t.” Instead I gained “Nerves of Steel” attacking this syndrome head on.

I lost my self pity and gained determination watching my daughter start her own awareness campaigns.

I lost my fear of driving on highways and in big cities. Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.

I lost my fear of ridiculously large medical bills. Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.

I lost about 3 more sizes, and have finally settled into clothes that fit.

I lost my muscle tone, as wild days kept exercising at bay.

I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.

I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…

I lost my fear of breast cancer and those ridiculous breast MRIs!

I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.

I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.

I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.

I lost my uterus, and my ovaries, but I was done with them anyway, and I gained permanent birth control and instant hot flashes!

I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.

I lost my old cell phone, and finally traded it in for a “smart” phone.

I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.

I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”

I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.

I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall. I always loved them with all my heart, but I will remember how lucky I am each and every day.

Family shot in front of the New Year's Eve Ball. — Family shot in front of the New Year’s Eve Ball.

In 2012 I gained tools I will use every day as I move forward.

I gained…

Determination – that we will beat this!

Focus- on what matters most.

Perspective- that everyone suffers.

Forgiveness- because negativity hurts me more than them.

Gratitude- for the kindness of family, friends, and strangers.

Compassion- as I watched my little girl continuously open her heart to others.

2012 had plenty of hard times, but like my car, it was far from a “total loss.”

Here’s to the lessons to be learned in 2013.

Wishing you all health and happiness!

Blessed- with my fake boobs

Published on December 9, 2012 by beatingcowdensLeave a comment

No, seriously – I mean it.

Yes, there is the occasional moment where I think the new girls feel a bit awkward, or unnatural. There is the occasional moment when I look in the mirror and try to remember what the old girls looked like, and what it was to have nipples instead of scars.

Then I get over it.

And I think about how comfortable and natural it was last night, as I held my exhausted daughter and she rested her head on this size A silicone that sits where my old boob was. She didn’t even hesitate. She didn’t mention it being weird or unnatural. She didn’t notice.

And my husband, who means it when he says over and over – “I am just so glad you are here.” And, I believe him.

I am blessed to have had great surgeons, a superb support system, and the “push” to say goodbye when it was time.

A year ago I still had more body parts. If I had left them all alone I could be dead now. But I am not. And the cancer is gone.

This Cowden’s Syndrome can really suck sometimes.

Other times I feel very blessed.

Plus – mine will stay perky longer than yours! 😉

Maybe it wasn’t a “Total Loss”

Published on December 2, 2012December 3, 2012 by beatingcowdens4 Comments

The Insurance Agent called Friday night. He told me my car was a “Total Loss.” I think I knew that after I saw this picture the first time, but it was still a little hard to hear.

Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me. To me, a “Total Loss” means I didn’t learn anything. It was a waste. I took nothing from it. That couldn’t be farther from the truth.

I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day. Sometimes what I take away is positive, and sometimes – not so much. But I always, always learn something.

1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.

2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.

3. When you ride in an ambulance its less scary when you take someone you know. And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all. There are real live angels among us!

4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls. Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.

5. There are some really really nice insurance people, and some really obnoxious ones.

6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.

7. The pain is worse before it gets better.

8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride. Especially when you know you handled it right. It is hard to get over hurt pride, but you can find peace with a clean conscience. So glad I have one.

9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you. It’s all about the stop sign.

10. Whiplash, and muscle spasms are real. Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.

11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us. (Thanks Angel Meghan… and all the others)

12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.

13. Fax any important test results to a doctor you trust. I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please. The hamartomas are growing. I will talk to my doctor at NYU this week.

14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess, I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps. I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf. I have parents in my school fully supporting me and working to gain signatures on a petition. Their children’s lives are in danger every day. I want some things to change to make the children safer.

15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant. Always marry someone with a sense of humor.

16. Wear your seat belt! Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either. So glad I was buckled up.

17. Those silicone implants can take a good hit. Thankfully – nothing popped!

18. I am not going on the teacups at Disney World ever again. I have had enough spinning for a life time!

There… not a “Total Loss” at all…

Thankful for… that first piece of pie!

Published on November 22, 2012November 22, 2012 by beatingcowdens3 Comments

I was going to avoid boring everyone with the same drivel that has been written over and over today, but I couldn’t resist.

It’s hard not to think about what you are thankful for on a day earmarked for reflection.

So, here it goes…

I am thankful for my husband. He stays behind the scenes all the time. He never looks for the credit in anything we do, yet he is the driving force behind our marriage and our family. He knows when to make me laugh, and when to hold my hand. I am not sure how I could have gotten through this year (or the 12 before it) without him.

I am thankful for my daughter. She reminds me every day what is important in life. She inspires me to push through adversity, and to keep on going – even when the going gets rough. We share a lot (maybe more than I would like… darn Cowden’s Syndrome) and I could not ever ask for a kinder, more compassionate, loving daughter. Even on the days we go head to head – I am the proudest Mom.

I am thankful for my “furry children,” my Allie and Lucky. Their unceasing loyalty, their love and companionship bring such joy to all of us. Plus – there is nothing like rubbing a belly on a stressed out day to make you feel better!

I am thankful for my parents, and their “being there.” Sometimes that’s all you need is for someone to be there.

I am thankful for my siblings… all of them so very different, yet all so incredibly important to me. I am thankful that even on the days we don’t see eye to eye – our love is strong,

I am thankful for my nephews, and the joy they bring, just by being themselves.

I am thankful beyond words for my grandparents. Their support through these last 39 years, has been pivotal in my development as a person. I am certainly a better, wiser, stronger woman – having learned from their example. I continue to learn from them each day; lessons of love and compassion. Not many people my age are so fortunate.

I am thankful for my home – more this year. I celebrate the fact that we passed through “Superstorm Sandy” virtually unscathed. I am prayerful for those who have lost so much, and I am trying so hard -to recognize the “small things.”

I am thankful for my friends – near and far. I am thankful for my local friends, my college friends, my friends from work. I am thankful for the friends I see often, and the ones I hardly see at all. I am thankful for my “cyber” friends, that I have “met” through support groups, and this blog. The joy of knowing you are not alone can never be understated.

I am thankful for my health. I know that may sound strange, considering the whole premise of this blog is about a genetic disorder that compromises the health of myself and my daughter – but hear me out. I have this year alone undergone 2 major operations, and recovered. I survived breast cancer without ever needing treatment. I am able to walk, to run, to care for my child, to exercise, and move freely about my world. While I have health concerns, and Meghan and I will always have them – I recognize how much health we do have, and I am thankful.

Finally, and the one thing that brought the biggest smile to my face all day – I am thankful for my daughter’s first piece of pie.

Meghan has always had food allergies – gluten, dairy and soy. This year we made her a pie by rolling out her cookie dough as the crust. We filled the middle with coconut milk ice cream, and topped it with her syrup. She was so excited. It wasn’t until I cut her a piece and she asked me how she was supposed to eat it, that I realized she had never had pie. Sometimes the little things – are the big things!

Happy Thanksgiving one and all.

It’s not all about us

Published on October 15, 2012October 15, 2012 by beatingcowdens3 Comments

And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time.

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!

Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out. We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.

Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.