Daily struggles – Page 36

How Cowden’s Syndrome changed… my phone!

Published on September 29, 2012September 29, 2012 by beatingcowdens1 Comment

I know I have said this before. And, I know that many of you can relate. Since being diagnosed with Cowden’s Syndrome (insert your diagnosis here…) nothing is what it used to be. I am not the same. I have changed. Out of necessity, for survival, and maybe because sometimes its good to get rocked to your core so you have to shake it up a little. Don’t misunderstand me, I am not HAPPY about the diagnosis, or its far-reaching, life altering effects. I am just saying that complacency sometimes has some troubles of its own. A little shake up (or a few major earthquakes) now and again, keep us hopping.

So, when I say to you that my diagnosis with Cowden’s Syndrome has forced my transition into being a Smart Phone user, maybe you can relate. I promise, for me the two are closely connected.

I am frugal. Have always been careful with my money. I love to give to charities, I love to give to friends, for weddings, and showers, and babies, and special occasions. You should know that my credit card balances are respectably, almost frighteningly low, and I have been known to stop and save up for the things I want. And, you won’t catch me spending $100 on jeans I can get for $30, or gleefully sending off the payment for the utility bills without a slight lament that it seems like money wasted.

When we first got cable, I only wanted one box. I resisted the DVR at first too. I lost – both times. But I didn’t care so much because Felix wanted it, and at least it was going to make him happy.

I don’t require a lot. A few pairs of comfortable sneakers, some nice jeans, and a few tops that fit me. I need a working computer, frosted cinnamon Cheerios, and an ice cream cone – often. I am content to alternate between a few pieces of jewelry. I like my house clean and neat – but other than that, it is hard for me to come up with something I want, or need, except for perhaps a few more hours in a day, and less time tied to my computer, which leads me to the reasons it might be time for a smart phone.

Now, Felix got his months ago. And I was OK with that. Again, he needed the boy toy. And, he uses it. He watches videos as he commutes from work, plays with family photos, and scaling down into just one lightweight device made his job as a climbing electrician even easier. When he first got his he said to me, you have to. I said, “No way!” I was still calculating the cost of his data plan and what it would do to our monthly cell phone bill.

But, these last few months have been a litany of medical tests and appointments for Meghan and I. We are constantly awaiting calls, and test results. And, I have found that in Manhattan, many – ok MOST, doctors will Email for convenience. Convenient – if you have access.

I can’t access my personal Email from work. Even if it gets through the fire wall, it’s just a bad idea. So I find myself daily, as I run home from work to let the dogs out – frantically checking Email and responding as quickly as I can. I also find myself waiting a lot, at doctors, at dancing school, at swimming, at PT, wasting time where I could be handling all of this.

So, my husband sat me down for “the talk.”

“Remember after your cancer in March, when I told you to order the Cirque du Soliel tickets for Disney World? Remember when you told me there was no way because the tickets were such and expense. Do you remember?”

I did remember, as I stifled a giggle. He had explained to me that now, having had the “wake up” of our lives – we were to take some chances, have some fun, and DO things we wanted to do. He reminded me that we are fortunate to be able to afford nice things, and sometimes, we need to treat ourselves to family memories. He said, “If having cancer didn’t wake you up, I don’t know what will.”

So, I ordered the Cirque du Soliel tickets last March, and we thoroughly enjoyed the show in August.

Now, he said – it’s time. Get rid of this phone.

old_phone — Probably only a slight exaggeration

And move onto this one.

“It’s time you stop worrying so much about every little detail. Have a little faith. Have a little fun. You have earned it.”

He’s right. He usually is. Last night I ordered my Iphone 5.

It will take about a month. I can wait. Poor Siri will be so busy with reminders she won’t know what to do. And I can’t wait to release a little of the pressure of having to remember everything.

Cowden’s Syndrome, with all the complications it added – means that that smart phone moved from luxury to necessity. And I must admit, I am resisting calculating the new bill because even I am little excited about being shoved into 2012!

And that my friends is how Cowden’s Syndrome (even) changed my phone!

Just Another Day “Off”

Published on September 26, 2012September 26, 2012 by beatingcowdens4 Comments

We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor! Because, that my friends, is how we roll. Except today wasn’t a high-tech specialist or a visit to Manhattan for testing. Today was kind of ordinary. Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7. At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated. At 7 she had a rake put in her mouth. A fixed appliance, similar in concept to a palate expander, but different. A rake is there to break the tongue thrusting habit. She wore that fixed appliance for a year, and a removable nighttime retainer for another year. All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in. I asked when, and was told, “soon.” It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months.

Quickly doing the math I asked, “She could have them off before Junior High?” Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again. I asked him if she was too young. He told me her chronological age really had nothing to do with things. Her dental age makes the decisions. Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time. She asked me question after question. She was curious about my braces, and her Dad’s experience as well. She wanted to know why I thought it was so good to have them off before 6th grade. She told me she was scared, which I said was normal. She asked me why everything was happening at once. Why was her body growing so much, why is she ready for braces, why can’t she just take a rest? She understands really, she always does. But sometimes she needs the pep talk that we have to press on. She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all. Don’t blog about it. Don’t tell your friends. Don’t tell anyone. I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut. But she was clear. This was HER secret – not to be released without her permission. And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day. When I share my life here, I am also sharing hers. And she wants, and deserves a say. We have talked a lot since then about whet I can and can not write about. She puts very few restrictions on me, and I appreciate that – but I respect each one. This life is hers too. And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS. I write about breast cancer and my mastectomy and hysterectomy. I write about her worries about cancer. I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal. I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read. If it bothers her. It comes out. Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness. She gets it. She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.) There were some tears then. Some frustration about wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today. For both of us. We stayed calm. We had another long talk about how “everyone has something” even though it seems she has an awful lot. We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her. That young lady never seems to complain either. Maybe that’s why Meghan respects her, and is drawn to her. Kindred spirits? We know quite a few.

We got the bracket fixed. We headed to Party City. We got a bargain on matching Halloween costumes. We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November. Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth. Soon they will become natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished. One day I would just like the mission to be a day in our PJs!

before braces 92612 — Award winning smile – even before the braces!

The New Normal

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

Ok. So that normal was short-lived. Glad I enjoyed it while it lasted.

I am trying the “don’t worry” thing. I really am. Truth be told. I stink at it. It’s true. I try and try, but in the end – epic fail.

We finished the antibiotics Tuesday from the hospital/fever/headache thing 2 weeks ago. She was on the mend, so I thought.

I know our schedule has been busy. Too busy for her. Too many things to do, every day leads to exhaustion. My body struggles with exhaustion, but hers just can’t cope.

So this morning we went for the follow-up blood work. The one to make sure the White Blood Cells and platelets came back to normal. The we headed to Queens to visit my in-laws. Two dogs, Meghan, Felix and I.

I the middle of a nice visit I noticed her resting her head on the arm of the chair. Then, she asked for food. She told me she wasn’t feeling too good so she must be hungry. We fed her. Then it all started to crash and burn.

She loves her baby cousin Connor. But, she started backing away, not wanting to get too close to him. Then, there was the red line across the eye. Finally, “Daddy will you rub my head?”

And from there it all went downhill. A cold cloth and Daddy’s magic fingers did little to relieve the pain. In about 15 minutes time we were back on the Belt Parkway heading home.

My mind was racing. She slept for a bit in the car, and I just kept trying to figure out a way that this could make sense. Not even just to me, but to someone – anyone.

The last time we were in for headaches the pediatrician told me to get a neurologist consult. Well I am working on it tonight. God and the power of the internet have me linked up with some Cowden’s patents. The goal is to find a pediatric neurologist who is competent and already has heard of Cowden’s.

That is of course if the immune system stuff is even Cowden’s related. Then again at this point I am going under the theory that all this is related in some way.

Settled into bed with Advil and a 102 fever at 7pm. It promises to be a long night. I will decide on a neurologist and have a few numbers ready to call during my lunch on Monday. Priority.

We will see the ped at 3:30 Monday, and hopefully not before.

Worry -it’s what’s for dinner.

Maybe I should stop looking for the old normal. It happens so infrequently anyway. Maybe it is all about the new normal.

Fighting My Way Out of the Cage

Published on September 18, 2012 by beatingcowdens4 Comments

A few days ago I wrote about my dog Lucky – biting through the cage. Well she got her wish, and she is a free dog now. Free to roam around my house, lay where she wants, and drink when she wants. She is much calmer and happier now. It doesn’t take much to make her happy.

Why then can I not take her lead? Why am I living in the cage of my own thoughts?

My husband, he has the right idea. He worries only when it is absolutely necessary. I worry about making sure the stove is turned off. He worries when the house catches fire. Maybe it’s a male/ female thing. Maybe it’s my controlling OCD. Who knows? What I do know is he is MUCH healthier than I am mentally.

I am still quite sane, but admittedly neurotic. Some say it was inevitable after the year we have had. I think it stretched back much farther. I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.

I just read a Facebook friend’s post. She talked about her brain continuing 24/7 even when she asks it not to. That’s EXACTLY how I feel.

I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping. And those are just mine – not Meghan‘s! We average 3 doctors a week, usually at least 2 on the schedule and a pop up. Each one seems to look, poke and prod and not offer a single answer. Then the tests lead to more tests. It’s a bad cycle we are in here. So then I spend my spare time researching – thinking maybe I can find the answers they don’t know. I end up just as clueless and thoroughly exhausted. Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out. I am “luckier” than my dog Lucky – no pun intended. I have the benefit of being able to free myself. I just never seem to get it quite right.

I am going to try that one day at a time thing again. I am going to try to concentrate on all the many things that have gone right. I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest. I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid. I swear I will try. It’s not going to be easy though.

When you see me in a fit of worry, feel free to give me a “cyber” smack into reality. ONE DAY AT A TIME!

TODAY – good things happened. I got through the baseline screening colonoscopy and endoscopy. The colonoscopy was completely CLEAN! I do not have to go back for another 3 YEARS! Beats the heck out of the every 6 months they were recommending for Cowden’s patients. Also, my CLEAN scope frees up my little girl for a while. As long as mine stay clean they won’t start screening her until she is at least 18. Breathe. Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.

For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage. We can do it – one day at a time!

Friends…

Published on September 17, 2012 by beatingcowdens1 Comment

It was hard to believe it had been so many years since we were all together. It was even harder to imagine it was over 15 years since we all shared space, time, and our souls in SUNY New Paltz. It was a far cry from most of our late nights at P & Gs.

As a matter of fact , as we sat across from each other at The Cheesecake Factory in New Jersey, two of them pregnant and all of us chatting about our children, and old times -often in the same breath- you never would have imagined the amount of time that passed since we last spoke – face to face.

But the food was decent, and the conversation refreshing, and I found myself wishing it could happen more often – or last a lot longer. It hardly seemed right to get up when only a few hours had passed. But each of our lives called us away. To children, and husbands, and lives that needed tending to.

As we hugged each other, and I watched my two friends ‘baby bumps” bang into each other, I was reminded of the reality that real friendships truly do last forever. We picked up with each other as though graduation had been last week, and although there was so much more to say, there wasn’t a moment that lacked conversation.

Facebook has been a blessing for us. A way to keep tabs on each other, and keep track of the major happenings. These ladies used Facebook as a means of support for me over the last six months, when some days it seemed the sky was falling. They reached out to me – as if we were still next door neighbors in New Paltz. Facebook arranged our meeting last night. As a simple group message “Hey can we pull this off?” – and I am so grateful we did.

See in order to stay sane, life has to be about more than Cowden’s Syndrome. It has to be about more than knee pain that wakes my girl up in the middle of the night after only 4 days without her Celebrex. (At least we tried!)

Life has to be about more than infections that scare me half to death, viruses that take hold way too fast, and doctors that want to fix it all but don’t know how.

It can’t always be about tumors, and, “Are they growing or not?”

It can’t always be about the tests and the screenings, like tomorrow’s colonoscopy.

KBEC — The recovery room at tomorrow’s colonoscopy site!

Those things are always going to be part of our lives – forever. They aren’t going away. That is the reality of Cowden’s Syndrome.

But the real reality, in the world where we know too well that “Everyone has Something,” is that it is necessary to make time to hug old friends. It is helpful to the soul, to relive old times, and to sometimes sit and have dinner with people who stood beside you years ago, and who have made it clear they are prepared to do the same now.

Biting through the cage

Published on September 11, 2012September 11, 2012 by beatingcowdens9 Comments

My dog Lucky is a bit neurotic. She just is. So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.

Lucky (the black one) and Allie, playing together.

It got me to thinking though. No one, or thing – really likes to be caged. The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time.

What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.

We feel like that sometimes here – about PTEN, and Cowden’s Syndrome. We feel like we are stuck, in a locked crate. We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.

Meghan’s fevers this weekend scared me. I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process. And, I swear if they were not related before, they feed off each other now.

The fever was gone Sunday night. It made another showing of about 102 and then that was it. She stayed home Monday with our friend Patty, and was treated like the princess she is. By the time I came home Monday she looked so much more like herself.

We went to the pediatrician Monday night. He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having. Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI. She is going to get back to me. I have no idea where we will fit one more doctor in – but we will figure it out.

So this morning, we woke up feeling ready to go. She responds so well to antibiotics, that we were seriously on the mend.

After she brushed her teeth she complained her gums were bothering her. I didn’t see much.

Tonight she said it was much worse. There is a growth on her tongue. Right on the edge. It grew today. During the day. No idea why. No clue what to do about it. I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.

I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.

Someone told me today I looked tired. Not me.

If you need me, I will be biting my way through the crate, getting rid of one bar at a time. Maybe Lucky las the right idea.

Every Day is a Great Adventure!

Published on September 9, 2012September 10, 2012 by beatingcowdens2 Comments

Ever feel like you lived a few days all at once? Yep. Today would be one of those days. From the physical to the emotional – I am shot. And it is only the BEGINNING of the week!

We walked today, my mom, my friend and I. When Mom picked me up this morning we were both a little grumpy. then we both cried a little. It just seemed wrong heading out without Meghan. But I took some solace in the fact that when I kissed her at 6:30 AM her skin was blessedly cool to the touch. Maybe it was over.

So we picked up our friend, and determined to enjoy the sunshine, we were in central Park a few minutes after 7. Professionals by now, we do all of our shopping, and gathering of “free stuff,” then we walk it to the car so we can race pretty much unencumbered. And Meghan, for having not been there, made out quite well in a wide array of paid items and “free stuff.” Well deserved!

Manhattan was crowded as ever, but thanks to my aggressive little Mom we were up close to the front when the race began. We moved aside to allow for the runners and then had a really enjoyable walk without the tight crowds we sometimes experience. We got to chat and walk, and enjoy each other and the sunshine.

RFTC2 — Holding the banners Meghan made for us

At the finish line. Aren’t we pretty in pink? 🙂

So after a fun and exhausting morning we headed home. Meghan was so thrilled that we hadn’t forgotten about her. I was less than thrilled to see her on the couch, a clear indicator that the fever returned.

So, just like that came the transformation from walker to Mom. We started making plans for who would watch her Monday. She reminded us about her friend, and ours, a neighbor who loves her like she is her own. Meghan said, “Just ask Patty!” So I did. Patty will be here at 7:15.
Thinking it was all taken care of, we sent Meghan for a nap. Restless a few minutes later, the thermometer revealed a scary 104.2. Knowing what he would say, I had to call the pediatrician anyway. That number is too high for me. So, he happened to be in his office and invited us to come in. (I adore my pediatrician.)

He spent a few minutes sizing her up. The Tylenol was starting to work and she was down to 103.7. After an agonizing 20 minutes he sent us for blood work at a local ER. I am not a big fan of the local hospitals, but thought perhaps a brief visit MIGHT be ok. Not so much.

In the literally blood spattered walls of a tiny room with no access to TV or cell phone, we sat while they took 2 blood cultures and a CBC. She admitted at 4 PM with a fever of 102.9. They gave her a dose of Motrin. We waited for the blood for almost 2 hours. As I grew anxious they told me they were having trouble finding it. Almost ready to leave, it turned up – with a terribly low white blood cell count, but nothing else noteworthy. We left quickly, being discharged at 6:30 with 99.4, having learned/remembered 2 things.

1. It is not OK – even for a short visit, and

2. Motrin – Motrin – Motrin

We had a hard time deciding who got to shower first as we cleaned off the filth we had just been in. Dinner, some TV, WINE(for me – not her!), and it was off to bed. Fever free at 8:30.

Headed up now for the 11PM Clindamycin. Who knows what tomorrow will bring? Every day is a great adventure!

Serenade

Published on September 7, 2012 by beatingcowdens3 Comments

I am sitting in the basement on the computer trying desperately to ignore the cricket serenading me from some other corner of the room. My family has been asleep for hours. Silently I have struck a deal with this insect, that if he stays far from me, I won’t try to squish him.

Not a big bug fan, and since a quick google search shows me a photo of one of his distant cousins, I have strengthened my resolve not to meet the cricket tonight. I don’t mind bugs, when they live outside where they belong. I just don’t like them taking residence in my house!

So, he continues to sing, as I put 4 stamps on the CD of the sonograms of my abdomen from April and last Novemeber. I included the reports and a cover letter to the oncologist. Off they will go tomorrow, and hopefully they will safely arrive. See I am really and truly ready to hear the definitive word that the spleen stays. One more week…

Week – what a week it was. I swear I am still sore from the boxes earlier in the week. A true sign that I lost a lot of strength post operatively. But, I am moved in. And, after 2 hours on a Friday afternoon after the students, and most of the teachers had left – I am largely set up. Finally!

Meghan loved her 4th grade teacher, even if it isn’t the one she originally wanted. This one has all the skill, kindness and compassion of the other. It will be a great year for her – academically.

Still so many medical questions unanswered. I am so intrigued as to how a pituitary that is over working can be too small. I am even more intrigued that this keeps only me, and apparently the cricket, up at night.

Answers. I need answers instead of more questions. But I fear it just isn’t to be. So, I will head to bed before I am forced to meet the insect that has been singing my lullaby for the last 2 hours.

Random Reflections – nothing profound today!

Published on September 2, 2012 by beatingcowdens3 Comments

We tried another church today. This time all three of us went. A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless. Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

God has a plan. And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.” I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me. So we will see. At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day. Glad we got in a swim yesterday. It may have been the last one. We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner. Hoping its nothing too serious.

We got to spend the afternoon with my grandparents and my parents. Last minute plans are always a treat when we get to be with family. Pop was 93 last week. Grandma will be 92 in 2 weeks. GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday. She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things. I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend. She told me I could get it Tuesday. I chuckled.

No matter how hard I try… “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday. I will not physically be able to have the CD burned until Friday. They will get it in about a week and a half. At which point she nicely reminded me that it could be serious. To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think. But, what I meant was, I have undergone 2 major surgeries in the last 6 months. I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one. Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD. I will get the results of Meghan’s blood test and MRI. I will call Meghan’s school and sort out the busing mess that is developing for the first day of school. I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed. I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work. We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine. LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!

One of a kind…

Published on August 31, 2012 by beatingcowdens9 Comments

It probably started in the spring. Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org) The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.

Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991. She wanted to make her connection to the fundraising personal. As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.

So, I asked her what color? She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer. So, she took out her iPad and a quick search found us gold. The gold ribbon was the color for childhood cancer.

So we headed to Michael’s and bought up as much gold ribbon as we could find. We bought lots of safety pins. We set to work cutting and pinning.

We dropped baskets off with my Uncle Chris and cousin Katie (“Angel Meghan’s” Dad and sister.) They were eager to help, and passed baskets off to friends of theirs. Before we knew it we were making more ribbons, and more bookmarks.

Meghan was so absolutely thrilled to raise over $500 for the project. It was such a huge success and we were so proud.

That project raised her awareness of her ability to do for others, and helped her confidence so much. It also made her aware, acutely aware, of cause ribbons. She would identify the ones she knew, like the pink ribbon for breast cancer, and she would look up ones she didn’t know. She learned about the puzzle piece for autism, and even yellow ribbons being used when soldiers are away from home. I think that is the project that truly got her using a search engine too. (Thanks Mrs. Azzarello!)

It seemed only natural, that months later, having watched me receive pink ribbons after my breast cancer surgery, and after countless surgeries and appointments of her own, that she would ask what “our” ribbon was. Not sure of course exactly what she meant, I had her clarify. “What is the ribbon for genetic diseases?”

So back to the search engines we went. We tried a few other places. but eventually decided that this was the one.

It made sense. The Global Genes Project had a logo that reflected her cause. This was the ribbon for Rare Diseases – genetic disorders like our Cowden’s Syndrome. It Made sense, their saying, “Hope – It’s in our genes” was catchy enough, and it left you thinking about the connection between genes, and jeans – the denim ribbon.

The next question should have had a simple answer – but it didn’t. She said, “Can I have one?”

Once she clarified that she needed something, something to represent her, and all she has gone through, I understood. She needed a symbol, something to wear that would make it easier to talk to people, that would help her feel proud, and strong, like it all mattered.

Sure, I thought. We will get you something.

Well I looked, and I looked, and I looked. There was nothing. Beyond the sticker I had gotten as a thank you when I sent a contribution to The Global Genes Project, I could find NOTHING for her to own or wear, no jewelry or clothes with this “denim” ribbon.

Well sometimes the best ideas are born out of lunchtime conversation. So, as I sat with some teacher friends the next day, I recanted Meghan’s desire to have her own cause ribbon. One friend, the pure hearted Mom of an autistic son, who was wearing a beautiful diamond puzzle piece around her neck, “got it” on so many levels. And, her husband happens to be a jeweler.

She said, “give me what you have, let’s see what we can do.”

Well I think we all thought it would be easier than it was. But after weeks of searching her husband determined that there was nothing, anywhere like what we were looking for. If we wanted it, we could have it, but they would have to make the mold.

Fortunate to have good and generous people in our lives, we paid only for the cost of the creation of the piece. My friends husband generously donated his time, because he too “gets it.” Their goal was only to make my girl happy. And for that I am so grateful.

After anxious months of waiting, the piece arrived last Friday. She treats it like a rare gem.

It is RARE, a one of a kind beauty – just like my girl. But, never staying focused on herself for too long, she thought – wouldn’t it be nice if we could do a fundraiser, and sell these so that we could raise money for The Global Genes Project?

Well, last Friday we sent them an Email with several pictures. It is a crazy time of year, but we are anxious to hear from them, and hoping that Meghan’s idea, can benefit many others. It would be fitting. That’s just the kind of kid she is.