My girl – Page 20 – beatingcowdens

Not a doctor, but I play one… in real life!

Published on July 8, 2012 by beatingcowdensLeave a comment

Tuesday when the doctor didn’t call me with the MRI results, I was really irritated. Annoyed enough that I called the imaging center where the test was done and asked them for a copy of the report. While regulations prevent them from faxing it, they did put it in the mail. I received it yesterday, but since we were having such a nice, “normal” day, I decided to wait and open it today.

Now, if you are frequently ill, or if you have a child who is ill and frequently tested, you become able to decode these reports to some extent. It’s not perfect, nor am I fluent, but I can manage to get the idea. (Kind of like after 12 years of being married to a Puerto Rican man, even as a woman of Irish, Norwegian, and Dutch descent, I can kind of “get it” when they talk in Spanish.)

So I took the report down to my computer table, and the first thing I did was compare it to the last one. (Which was easily found in the 4 inch binder of her medical records, in the blue tab marked “images” – but we can talk about my OCD another day.)

Now the truth is I have no business trying to interpret this without the aid of a doctor, but for that – I blame the doctor and his insensitive move to ignore me before his long weekend. So, I will give it a go.

The first thing I notice is that the reports are similar to each other. Since they took place 6 months apart I first rationalize this must be a good thing. There was not any significant growth of the AVM over 6 months. Then I realize she had surgery in February to shrink the AVM. There is NO significant change at all in the size of the AVM.

Under the section marked “findings” it reads “Deep into the medial retinaculum is a 2.8 x0.7 cm… mass” Now I know that’s the AVM, but I had to take out a tape measure to picture the size. Then I figured out the other words were obviously location, so I went searching for some pictures. I took this one-off the www.aafp.org website.

I took a long hard look at this picture and then a long hard look at my child’s knee. I think it hit me for the first time when I did that.

I mean, I have always known her to be in pain, a pain I belive to be very real and very intense. But she has often said to doctors, and to me, that her knee is “swollen.” That finding is always discounted by doctors reading these reports because it says “no joint effusion,” which translates into no swelling of the joint.

But, anyone who has had a splinter knows the irritating feeling of having something in your skin, and the desire to remove it.

So, when I think about the doctor, incidentally the same one who didn’t call me Tuesday, telling me for several years that “AVMs don’t cause pain,” I must say I have an overwhelming desire to cause HIM pain. Maybe AVMs in and of themselves, in certain locations, do not cause pain, but I can not imagine that a mass, almost 3cm by 1 cm imbedded “deep” in the medial retinaculum would NOT cause pain. I can also understand why the feeling of a fairly large pebble formed by blood, capillaries and veins, and shoved into one of your knee ligaments might make you use the word “swollen” in error when you are 8. It has to feel AWFULLY strange to have something IN there.

The question is – what do you do about it? When I ask Meghan to straighten out her right knee, she can’t. She can’t “sit like a pretzel” in school, and she can’t put her leg straight out in front of her. Her range of motion is clearly restricted.

There are still “tiny feeding vessels arising from the distal superficial femoral artery. (Picture from http://www.orthopaedia.com/display/Main/Femoral+artery

Lots of arteries mentioned here, but the femoral is one of the large ones, that branches out. When they did her surgeries, three of the times they entered through the left femoral artery, and pushed the camera over and down to the right knee.

For them to say now that there are feeders from the distal superficial femoral artery, it seems that puts them right at the spot of the AVM.

So, now what?

I guess I am no better off than I was if I didn’t have the report. Aside from feeling a bit empowered, I have NO idea if this means she needs surgery – or not. I have no idea if it is OK to let this mass stay there, even though she can’t run, or jump, or do lots of things she wants. Maybe it is OK, and we will just watch it – every 6 months like the thyroid. Maybe it has to come out.

I guess I will find out tomorrow.

But, for Meghan it doesn’t really change her reality. She will have pain and restrictions with or without the surgery. This thing can easily come back – even if they get it all. So for now every single step she takes is internally a painful reminder to her, of what she has been given to endure.

It is amazing to me how infrequently she complains – about anything. She is my hero.

EVERYONE has SOMETHING!

Published on July 4, 2012July 5, 2012 by beatingcowdens1 Comment

Meghan and I have a lot of “deep” conversations. More than you might expect an 8 (almost 9) year old to be capable of.

Today she was wondering why we have to have Cowden’s Syndrome. Why is our PTEN gene broken?

Well, I said to her, everyone has something to deal with – and this is what we’ve got.

She thought for a minute, trying to figure it out herself, and then said, “What do you mean?”

“No matter where you go in the world, in every city and town, in every street, in every country, on every continent – EVERYONE is dealing with SOMETHING.”

I told her there is a saying that goes around “If everyone could toss all their troubles into a circle, and choose which ones we wanted, we would likely take our own back.”

Almost indignant she said,, “Why would I take back Cowden’s Syndrome? It stinks.”

“Yep, but would you trade it for the family that doesn’t have enough money to buy food, the family that lost their house to a fire, the family where the parents have lost their jobs, the family where the parents aren’t in love, or are divorced, the child who can’t have any pets because her sisters are allergic, the family whose Mom or Dad died, fighting for the freedoms we celebrate today?”

It doesn’t take much for her to “get it.” That’s why I love her so much.

“There are kids without dogs,” she said. “Lots of them. And I really love Allie and Lucky.

There are kids without their own room, or even their own house.

There are kids whose Moms and Dads don’t love each other.

Some kids have other diseases where they have to go to the hospital even more than me.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

Some kids don’t get to know their grandparents or their great- grandparents, like I do.

I get it Mom, I think I do. But, still it seems like some people have no worries, no problems at all.”

“Those are the people I worry most about Meghan. Those are usually the people whose hearts hurt. They are often alone, or insecure, or feeling unloved. Trust me, EVERYONE has something.”

“I guess you were right Mom. I don’t like having Cowden’s Syndrome… but I wouldn’t trade our life for anyone’s.”

“I am glad – me either. Our “thing” to handle is medical, and we will get through it – together. Tonight we celebrate our country, and the freedoms it was founded on. We celebrate the soldiers who fought for our freedoms, and the ones that continue to fight. It is those freedoms that allow us the ability to battle whatever “thing” plagues our own life.

We are all struggling, and we are all lucky.”

A story of two Meghans…

Published on June 25, 2012June 25, 2012 by beatingcowdensLeave a comment

The cutie in this picture is my cousin Meghan. She was born in 1985 when I was just in the 6th grade. She was the first child I ever babysat for. She was my buddy.

She was diagnosed with Leukemia around her second birthday.

Remissions and relapses, bone marrow transplants and chemotherapy followed the next 4 years, but a cure was not to be.

She passed away in 1991 on my 18th birthday. She shaped my life in every way imaginable. I am a better person because I knew her. I developed perspective at an early age because I knew the pain of having loved, and lost someone so young.

She is our guardian angel – ever-present in our lives.

My daughter Meghan was born in 2003. I asked my aunt and uncle for permission to use the name. They were pleased, but not surprised. Meghan was a huge part of my life, and I wanted my daughter to know her name was carefully chosen, and she was named for one of the strongest little people I ever knew.

My daughter knows all about “Angel Meghan,” and how she watches over us. She knows all about childhood cancer and its gold ribbons. She happily worked to raise money for a school project this year, for a “great” cause. She knows cancer took young Meghan’s life.

She also knows her Mom and her Grandma had cancer, and they are doing just fine. She knows the battles can be won, but they seem to be all around us.

What she doesn’t know, is where she fits in. She lives a life where at a young age, cancer and its risks have become a real part of her life.

She knows she fights every day, to get through her own life with a rare genetic disorder.

What I find interesting is she is seeking a symbol. She wants something to wear to show the world what she is contending with. She was able to express it to me, and while I was amazed, it made sense.

My husband bought me a Pandora necklace with pink ribbons after the cancer diagnosis. I have a bracelet I wear. They give me strength, as silly as it may sound. A sense of focus. A reason to stay on top of things.

She needs something. And it isn’t easy to find. It’s not a blue ribbon, but a denim one representing genetic disorders. I think I will have something made. Anything to help her find her identity.

She is special. She is named for someone special. She is unique. She is smart. She is funny. She is friendly, and wise. She is a lot like my cousin who came years before her. She is tenacious and strong-willed. She is finding her identity. She is growing up. She knows Cowden’s Syndrome will never define her, but she wants to feel empowered. I can’t blame her.

Two special Meghans.

One shaped my heart as a young girl.

The other daily inspires me to be a better human.

I am truly blessed.

6 Months…

Published on June 21, 2012 by beatingcowdensLeave a comment

June 18, 2012

As I was receiving the news of my grandfather’s passing, I mean within moments, my cell phone rang.

It was the endocrinologist we had seen the Thursday prior about the thyroid. It was hard to wrap my head around the conversation at first, but I was struck by the reality that this is it. This is how life will always be. Life won’t stop for the doctor’s appointments and test results, and the appointments won’t stop for life. So somehow, we need to find a way for them to get along, and exist – simultaneously.

The thyroid sonogram had been done on the 14th. When we left him that day he was comfortable waiting a year for the ultrasound, and just seeing her in 6 months. He told me he would call me after he compared her November 2011 sonogram CD to the new one.

So I stopped in the hallway at my school. Tears were still streaming down my face as I composed myself enough to talk to the doctor.

He reviewed the older images and compared them. There are a lot more nodules, he didn’t even give me a number, and most of them are very small. However, there is one a bit bigger than all the others. He would like to keep an eye on that one.

Instead of a sonogram in a year, we got bumped back to 6 months. Doctors seem to like to treat us, patients with Cowden’s Syndrome, in 6 month increments. Now if I can just figure out a way to synchronize them so we are not ALWAYS scanning something…

So, the last time we were there they told us to prepare. She will have thyroid cancer I was told. Until then, they will just watch. December 27th it is then.

Even as I continue to wonder if all these thyroid nodules couldn’t be provoking this puberty, setting off a way too early growth cycle, I knew I wasn’t going to get an answer. At least not today.

So, I closed the phone and dried my eyes. One day the thyroid will turn, but it’s not today. Not now. At least we can have the week to bury Grandpa in peace.

“Sapphire”

Published on June 21, 2012June 21, 2012 by beatingcowdens1 Comment

Grandpa, …, passed away on Monday, June 18, 2012. . Born in …Grandpa lived in … for many years before moving to …7 years ago. He worked as a lineman and foreman for PSE&G for many years prior to his retirement. He was a proud veteran of the U.S. Army during WWII and the Korean War and lifetime member of the American Legion. Beloved husband of 60 years to Grandma. Devoted father to…and his wife … and … and his wife …. Cherished grandfather to 6 grandchildren and 3 great-grandchildren. He was also survived by many loving nieces,nephews and friends.

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

The above is a snapshot of my Grandfather’s obituary. I removed the names and locations, because really – they don’t matter. He was a kind and gentle man, loved by everyone. Classy, and wise – funny, and easy to talk to.

My daughter proved to me again this week, that although we have Cowden’s Syndrome, it does not have us. It does not define who we are.

She is 8, turning 9 in a few short months. This was her first funeral. She went to the funeral parlor with me, alone. And then to the funeral with our family. She acted as one of the honorary pallbearers. She cried, she smiled, she focused, she hugged all the right people at all the right times. She got through the service, and hours into lunch before we handed over her Itouch – she never even asked.

My Grandfather called her “Sapphire.” He knew she was special. He made sure she had a sapphire necklace. Her eyes lit up whenever they were together. He will be sorely missed by all of us.

De :fr:Image:SaphirSynthetique.jpg Categoría:M... — De :fr:Image:SaphirSynthetique.jpg Categoría:Minería (imagen) (Photo credit: Wikipedia)

Once again – I am reminded of how precious life is. And once again, I am humbled and proud to be her mother.

–>

“I know…”

Published on June 15, 2012June 16, 2012 by beatingcowdens1 Comment

Kids know. They have instincts adults have lost. Never underestimate the power of a kid. (This was written a few weeks ago, and I am just now getting to adding it here.)

I know that my daughter is a smart girl. I know that she is in so many ways wise beyond her years, but I never cease to be amazed by her instincts, and her ability to read people – especially her family.

She knows that we share a genetic link and that we both have the same – Cowden’s Syndrome. She knows that we tend to grow things. She knows about her own AVMs, and that she has some thyroid “bumps” we are watching.

I am guarded but honest when I speak to her. It is important when you have a child who is sick so often that they trust you. I learned there is no way to lie to her and keep her trust. So, I answer the questions she asks, using as few words as possible, and I always stay honest.

That is why I was floored a few nights ago. She has been having a hard time with her knee again. In the middle of a not so common, depressive episode she complained for a while about her knee, and the permanence of the pain and swelling. She was frustrated, and she is allowed – so I held her as she cried.

What floored me was what happened next. She grabbed onto my shoulders and looked me in the eye. She said “I know…” I said, “What do you know?” She said, “Cowden’s makes it more likely for us to get cancer. You had cancer once and you were ok. Are you going to have it again? Is that why you had your other surgery (the hysterectomy?)”

I swallowed hard, intent to stay focused. “I don’t know,” I told her. “I don’t think so. We just took this stuff out to be safe.”

She looked at me with those tired eyes. She looked at me for a long time. She held me tightly and said, “I don’t like leaving you ever – even for school.”

Holding her as tightly as I could, I said, “I know…”

“Every little thing gonna be all right…”

Published on June 14, 2012 by beatingcowdensLeave a comment

http://www.youtube.com/watch?v=mACqcZZwG0k

Bob Marley – “Three Little Birds”

“Don’t worry about a thing,
‘Cause every little thing gonna be all right.
singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, (“This is my message to you-ou-ou:”)

Singin’: “Don’t worry ’bout a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry (don’t worry) ’bout a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, “This is my message to you-ou-ou:”

Singin’: “Don’t worry about a thing, worry about a thing, oh!
Every little thing gonna be all right. Don’t worry!”
Singin’: “Don’t worry about a thing” – I won’t worry!
“‘Cause every little thing gonna be all right.”

Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right” – I won’t worry!
Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry about a thing, oh no!
‘Cause every little thing gonna be all right!

I can imagine sitting on the deck by the pool. Oh, wait – the surgeon hasn’t cleared me to swim. And, I still need a bathing suit.

The cute tankini I bought was vetoed by my husband who thinks it makes my boobs look fake. LMAO at the irony of that!

Well, at least I can imagine sitting on the deck with a strong cocktail in hand… working to convince myself that every little thing is gonna be all right.

My daughter’s much awaited appointment was today. The sonogram was at 1, and the doctor at 3:30.

The sonogram was thorough – took almost 45 minutes. The doctor reviewed the images, but could not give us a clear decision until he uploads the CD I brought with last September’s sonogram images for comparison.

For right now he said things looked good. There are MANY nodules, but most are smaller than one cm. He is content to keep watching every 6 months if he doesn’t find anything on comparison that warrants a closer look. Somewhere this has to be good news, although I am always afraid to get too relaxed, so I am waiting for the phone call.

What boggled me was how laid back he was about the puberty. He told me even though she won’t turn 9 until August and she has been developing a good 6 months, that it is not too early. He said to leave it alone. Apparently she and I are the only 2 concerned. I have been super upbeat about all the changes to her, but I can’t help it. In my belly it just feels WRONG.

Maybe I am just too used to worrying. And there are reasons for that. Its seems to be all we do. Sometimes good news gets to be harder to process because it comes so rarely. Sometimes it is almost odd to hear that things are “normal.”

So, we will wait for the phone call to confirm. Then we will table the thyroid issue till December.

Next up for my girl, MRI/MRA of her knee. June 28th.

For me, well, I need to find a dermatologist, someone to screen my kidneys, someone to follow the tumor on my spleen… oh, and I need a bathing suit. According to my dear husband, one that doesn’t make my (fake) boobs look fake.

And, a LARGE cocktail with a cute little umbrella, and some Bob Marley in the background…

Every little thing IS gonna be all right!

Ready or not!

Published on June 13, 2012 by beatingcowdens2 Comments

Time is a strange phenomenon.

It just doesn’t stop. There are days we would like it to go slower, and days we would like it to go MUCH faster.

There are days we would like to relive, and those we would gladly forget. But really, we have no control at all.

60 seconds in a minute

60 minutes in an hour

24 hours in a day

7 days in a week

52 weeks in a year

I find there are occasions when I would like time to hurry up. When I am waiting for my daughter to get out of surgery is the best example. Time can’t go fast enough. When I am waiting on pathology results, for any of us – it always seems like forever.

When we were first diagnosed with Cowden’s Syndrome in the fall, the first thing they did was send my daughter for a thyroid sonogram. Of course it revealed 4 large nodules which we subsequently had biopsied at a hospital no better than a butcher shop.

As we sought out another opinion, and moved the slides to a much more reputable facility, an appointment in January found us with a pediatric endocrinologist who actually had some experience with Cowden’s. He told us he had reviewed the slides and noted precancerous cells. He essentially told us our daughter would have thyroid cancer at some point, he just could not say when. So, he told us to return in 6 months, and we would check again.

I remember at the time thinking 6 months was an eternity. I wanted it to be faster. I wanted reassurance that she was well. He was insistent that 6 months was appropriate.

So we made the appointment for June 14th. Now June 14th is tomorrow. And I think I may need a little more time before I am ready. Things have changed. Now we have an 8 year old with a developing body, and labs that don’t match. Now the reality that there could be a malignancy on her thyroid, actually helping cause some of these problems is making me want to vomit.

If we could slow things down… just a little?

15 hours from now we will be sitting for the thyroid sonogram, and 17 hours from now we will be discussing the results with the doctor.

I am trying to prepare myself for whatever he has to say. I have to hope for answers, for her sake.

Even if they aren’t the ones I want. Too many open questions. Too much time had passed.

Ready or not, here we come!

Cloudy With a Chance of… Puberty?

Published on May 30, 2012May 30, 2012 by beatingcowdens1 Comment

So, last night after we left the endocrinologist‘s office, I couldn’t shake this book. “Cloudy With a Chance of Meatballs.” If you are not familiar with the story, basically in the town of Chewandswallow they get their meals from the sky. They never quite know what’s coming, but three times a day it rains things like juice… or meatballs. Eventually this starts to become a problem for them, as the portions get larger and more unpredictable. It is a cute story, worth a read if you have a little one. But nothing I want to model my LIFE after!

This was the long awaited appointment for my 8 year old. The one who has been showing all the signs of precocious puberty. She has grown 5 inches in the last several months, lost almost all her baby teeth, grown 2 shoe sizes and now at 8 yrs, 9 months, stands 4 foot 9. This is the appointment where we were going to get the results from the testing, and she was supposed to tell me that the blood in fact confirmed the early start of puberty. Then we would go home, and start having chats, and we would make it through.

Except, as I have said before, things don’t often go according to plan. So, regarding the extensive lab work up, she said, “Your daughter is NOT in puberty. All the hormones that tell the brain to trigger development are sleeping.”

Excuse me?

How then do you explain the breasts that are developing, the palpable painful lump, and this giant growth spurt that you called “typical of puberty?” AND What about the breast sonogram?

Well that is normal. It says “Tanner Stage II development.”

But doesn’t that mean puberty?, I asked.

Well, yes.

But you said… (As I reach for a copy of the report) Hey, it also says “area of palpable abnormality of clinical concern… compatible with Tanner Stage II development!” So, should we be concerned? (Getting slightly more alarmed and annoyed)

No, she says. Look here at the pelvic report. It says the uterus is not in puberty, but the ovaries are enlarged, and consistent with early hormone stimulation.

Stimulation from what? Because now I am confused. Is this puberty or not?

So, I kid you not, she draws me a picture. A crude picture of two breasts, a uterus and two ovaries. She puts a small dot on one of the ovaries and Xs it off. She says that at some point she “probably” had a cyst on her ovary that caused her body to think it was in puberty and it began developing. But don’t worry, it stopped because the hormones in the brain are not awake.

WHAT? Has anyone told her body?

I don’t need to see you again, unless you have a problem…as she pushes me out the door.

What about the sonogram that suggests clinical follow up?

UM, HOUSTON…. we DO have a problem!

I swear I almost asked for my CoPay back on the way out.

Is there anyone who gets that Cowden’s Syndrome is a RARE disorder characterized by a mutation on the TUMOR SUPPRESSOR gene? If the body and the labs don’t agree, I think we probably have to look further. Just in case there is a tumor somewhere that didn’t “fall off.”

Everything about this, from the difficulty of scheduling it at a major NYC hospital, to the way the report was written in the double speak of maybe its normal, maybe not, to the contradictory interpretation by the doctor from what she sees on the body and the paper, makes no sense to me.

I have nothing against weather reporters. But they are wrong a lot. Their life is of guesses and predictions. I guess I hoped for more from the doctor than Cloudy, With a Chance of… Puberty!

I will get my umbrella, my Mommy mouth, and all my questions. I will keep asking until we get some answers. But really, why must it always be such a battle?

You Don’t LOOK Sick

Published on May 26, 2012 by beatingcowdens3 Comments

“You don’t look sick!”

If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.

We don’t “look” sick. As a matter of fact we look alike. A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome. To look at us, you would see a vibrant mother and daughter duo – 8 and 38.

Me and My Girl — We have a lot in common.

When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.” When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?” Actually she is 8, and she would much rather walk.

You can’t see the AVM in her knee. The one that has cost her 4 surgeries with an expert people travel the world to see. You can’t know by looking at her that in February he told us he could not “fix” it. That he was placing us under the care of another surgeon hours away. You can’t by looking at her, see the constant swelling. You can not see the pain.

That is because she is ALWAYS smiling. She can work a room, and make everyone feel welcome and important. She is a star student, reading almost 2 years above grade level. She is friendly, and funny. (She had to get something from her DAD.) She is confident enough to dance, and participate in storytelling contests. (Not sure exactly WHO that comes from.)

She takes medicine for pain, medicine for anxiety, medicine for viruses that plague her, medicine for allergies, medicine for her stomach – to ease digestion. She takes countless diet and nutritional supplements. She follows a Gluten Free, Casein Free, Soy Free diet without a minute’s hesitation. She is polite, and extremely well behaved.

I am so proud of her. Last week when she was having one scan after another they called her a “model patient.” Now I must confess when she was a baby and I was wondering what she would be good at, being a model patient wasn’t on my list of aspirations. But since she is good at so many things, the fact that she handles her appointments in stride makes me proud, and confident that she will have the ability to stay out in front of this wretched disease.

“You don’t look sick.”

But yet, we are. She had surgery in February for that pesky AVM. I had a diagnosis of breast cancer in March, and a complete hysterectomy in May. Next month we will take her to have the precancerous thyroid nodules reevaluated, and to have another scan on the knee to pin down when the next surgery will be. Not if, but when.

With all of these ‘invisible” illnesses come worry. It is not uncommon for me to talk to my 8 year old about if she will need a mastectomy, even before her own breasts have developed. She asks me if she will need a hysterectomy. A wild question, when the concept of what she will be when she grows up hasn’t even been ironed out. But she is astute. She knows she will likely walk my road. She watches. She thinks. She asks.

So no, she doesn’t look sick. Neither of us do, but some days reality is tougher to face than others. Some days that happy face is a little harder to find.

So, when she woke up today after PT Thursday, kickboxing, and swimming lessons on Friday, she was sore. Really sore. The celebrex wasn’t helping. She couldn’t bend her knee. I rubbed and stretched. She was annoyed.

She is allowed to be annoyed, here in this house. She is allowed to be discouraged and disgusted. I have been all of those things this week, and I know its important to let them out. I am recovering from my second surgery in less than three months. I am tired. I am annoyed, and aside from a few treasured folks who keep checking in, I am really really lonely. This surgery seems to have pushed a lot of my support network over the edge. They are a bit tired I guess. It’s hard to be there for someone when your own life still keeps going, I know. Especially when they don’t look sick.

So, today she had a turn. She was discouraged about the prospect of more surgery, and disgusted that the knee seems to remain swollen. She mourned her dream of running track. She cried about the permanence of this disease. She told me she wished she could get sick with something “normal” like a broken arm. You know, something that can be “fixed.” She sobbed out her frustration with doctors, surgeries, cancer, and the worries connected with each. She wants to be more like her friends. More carefree.

My heart ached as I held her. She is a tough cookie, but we are all entitled to lose it. I cried because I felt sad about giving this to her. I held her tightly and told her how much I love her. We went through a few tissues, and some long talks. Lots of things I can tell her I understand, and then some things I can’t. I told her she can cry. She can be mad. She can worry. She just can NEVER let it win. She can NEVER let it define who she is. I will always be sorry she had to inherit this, but I will NEVER be sorry I have her. She is my heart and soul. She is my sunshine. She saved my life.

“You don’t look sick.”

She brushed it off after a few minutes. Back to the Ipad, and back to taking care of me. No one outside of my husband and I will ever see her like that. Her carefully guarded emotions will only let loose where she feels safe. No one else will ever know her anguish, her pain, her heartache, her worry. No one, not even our closest family members would ever guess.

I think about all those people, and their quizzical stares. I know I can’t be too angry. They don’t know any better.

“You don’t look sick.”

She and I are a lot alike, in so many ways. And I wouldn’t change a thing. We are going to be just fine.