beatingcowdens

Good Friday – for the “first” time at the age of 9

Published on March 29, 2013 by beatingcowdensLeave a comment

I grew up taking some things for granted. And, when you are 39 it is quite easy to forget there are some things even the brightest 9 year-olds don’t know.

It has been a long week. One of doctors, and appointments. Lots of homework. Running errands to try to catch up on our lives. Felix’s grandmother, who Meghan and I barely knew, passed away this week. Emotions. Pain. The hearts hurt. The hand hasn’t healed quite yet. Physical Therapy. Lots of processing for my deep thinker.

I know Meghan knew this was “Holy Week,” if f0r no other reason, than I had told her.

She participated in the Palm Sunday Service last Sunday and understood everything in great detail.

Wednesday our church set up “stations,” where you could travel to experience Jesus‘ last days. There was fragrance, 30 pieces of silver, bread, wine, a cross to nail your sins, a stone to imagine the weight of the one in front of Jesus’ tomb. There were 13 stations in all. Each one a meaningful experience – traveled through alone or in a pair.

At each station there was a Bible passage, and a scenario. There was a way to put yourself in the situation. Meghan and I traveled most of the stations together, talking and sharing as we went. Long productive conversation that night.

We did not make service last night, but tonight, we headed into the “Good Friday” service.

I had never experienced a Tenebrae service, or a service of shadows. There was a huge cross of candles in the front, extinguished one at a time as various readings were completed.

And, knowing her so well I watched Meghan through the service become increasingly uncomfortable.

When we left and asked her about it, she told us she never knew the story of Jesus’ death. She had heard it told, but never read from the Bible. She had no idea the extent of His suffering. She was amazed that He could still love us after all the awful things that went on.

Long, long discussions. Just starting to wrap up.

My first reaction was guilt. Had I failed as a Christian mom?

Then I realized, as always, things were happening as they were supposed to.

I was learning lesson upon lesson just hearing her speak.

We are so weighed down by the earthly problems, that we sometimes forget. We sometimes lose focus.

Cowden’s Syndrome, cancer, PTEN, AVMs, viruses, surgeries, whatever the suffering,… we are children of a loving, forgiving God.

Jesus died to save us from our sins. To lighten the load. To eliminate the judgment and condemnation that sometimes weighs on our hearts – so we can concentrate on the important stuff.

And on the third day He will rise again…

How blessed are we? Sometimes I need my 9 year old to remind me.

Ramblings and Random Thoughts

Published on March 28, 2013 by beatingcowdens1 Comment

I am not who I was before.

Before there was Felix.

Before there was Meghan.

Before there was Cowden’s Syndrome.

Before there was breast cancer.

I am just not who I was before.

But every change has been part of a process, a transformation that is still taking place.

Perhaps the biggest change has been in my attitude towards others.

I try to surround myself with positive people.

Knowing full well that we all have our moments.

I deliberately seek out tolerant people.

Tolerant of changes. Tolerant of others.

Life is short.

Judgement brings anger, hatred, contempt.

I have no time.

So one by one I have worked to let them go – the toxic ones.

And I cling tightly to the others.

But such transformations affect your whole self – your core.

When I was much younger I had ideas. I was sure I was right – all the time.

Not so much anymore.

Now, I am sure that I make mistakes.

I am sure that everyone I truly love does the best they can with what they have where they are.

I am sure that everyone hurts.

I am sure that everyone struggles.

I look with a softer heart.

I see things from the other point of view.

Once I might have said that I found others beliefs to be “wrong” or “immoral.”

Now, I respect that others have beliefs and feelings that deserve to be respected – just like mine.

Maybe its the Cowden’s.

Maybe its the stress, or the fatigue.

Maybe its just me – growing up.

I tend to stay out of politics, and I don’t really comment on religions other than my own.

But I know I was raised to love my neighbor.

I know I was raised not to judge.

Really in the end – I just think if we all loved each other as sisters and brothers…

… well maybe more things would make sense.

I am not who I was before-

I am a work in progress.

I am surviving.

I am beating cowdens one day at a time.

I am embracing lessons learned.

I am wiser and more tolerant than I ever hoped to be.

Transitions

Published on March 28, 2013 by beatingcowdens2 Comments

Transitions.

It seems they are happening all the time, probably for everyone, but this week we are really feeling them.

When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.

Watch this. Scan that. Come back and see me about that… UGH.

Transitions.

So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream

Transitions.

She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?

Transitions.

Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.

Transitions. Things are ever changing.

First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?

Transitions.

No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.

Transitions.

Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.

Transitions.

Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.

We are finding our new roles, as people charged to raise awareness, and to spread the word.

We are figuring out where we belong. In school. In sports. In extracurricular activities. In religion. On our lives.

Big changes all around. God’s plan unfolding. Eyes and ears and heart wide open.

Transitions…

I fear this is the beginning of the end…

Published on March 25, 2013March 25, 2013 by beatingcowdens5 Comments

… of dance class that is.

It sounds so dramatic. I guess maybe its not such a big deal. But today it feels like one more thing on a list Cowden’s Syndrome has robbed her of.

Meghan was never going to be a performance dancer. She wasn’t going to do ballet for hours. But, for the last 3 years, she has taken one dance class a week.

First recital - 2011 — First recital – 2011

Hip Hop.

Not because she knows the music, but rather because they dance in sneakers – and that is better for her joints.

I can’t say enough good things about the studio. The owner is a compassionate, kind, professional, lovely woman who strives to make every child feel like a million bucks. She revels in their accomplishments. She celebrates every ability level. She truly loves children, and dance.

This place is the perfect fit for Meghan.

Her joints acted up in the fall. She missed a month before she could get it back together. No worries – no sweat.

A few weeks ago she twisted an ankle at dance. Xrays, a sprain. A week or two off.

Then there was the shoulder thing. Not dance related – but it still cost her some time.

And then tonight. I picked her up from class and her flushed face told the story before her teacher had to.

“She hurt her hand, but we don’t know how.”

I do.

EFF YOU COWDENS!

So, I took her home. There was a shower, and some ice. Nothing more than a light sprain I am sure. But her back hurt too. So we put her to bed very gently. And we spoke about maybe finding ways to increase swimming instead of maintaining dance.

The recital though is such a rush. She loves it. She loves being on stage – the energy. The celebration.

On stage - May 2012 — On stage – May 2012

Physical Therapy tomorrow morning. We will let Dr. Jill input her thoughts – although I already know them.

She is pretty good when she dances. She is a quick study. She has made so much progress. And she has some moves. (Those are NOT from me!)

She will ultimately get to decide. Although its probably for the best to back out now – before she really gets hurt. The final decision will be hers. So I say.

In reality the final decision has been made by Cowden’s Syndrome, and its ruthless attack on her joints and muscles, and connective tissue.

She is resting peacefully – for now. But I am cranky.

Things tend to work out as they should, but I am still waiting for this little girl…(young woman…AAAKK!) to catch a break…

Thinking outside the box

Published on March 22, 2013 by beatingcowdens4 Comments

And so began the week that was.

A “simple” annual review – not so much. But that’s OK. Mamma Bear remained calm. I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

But, I didn’t act like her. Not even once. (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few ~~weeks~~ months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family. But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there. But it is a cancer center, she is already a thyroid patient there, and my child grows things. While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.” But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant. We began rehabilitative PT and I am seeing progress. The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

Really – no one has even a bit of a clue. And it is often just downright exhausting.

Physical Therapy this week was refreshing. At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain. Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow. No freestyle – it hurts the neck. But that was OK with her.

Backstroke seems by far to be her favorite. I love watching her swim. She seems so at peace.

It gives me a time to break from all the questions. The wondering. The worry.

It is easy to doubt yourself sometimes when so many things are changing at once. Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with. Yet we go through doctors like a toddler goes through shoes. We have very few close friends – confidants to be trusted. Those who will be honest and open minded. We spend a lot of time alone. We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

I just wish there were more. No one really fits in a box. And that’s not just us, and our “rare disease.” Everyone is unique, and special. Everyone needs to be looked at with a fresh pair of eyes. Everyone needs to be viewed through the perspective of the other person. Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky. It is hard. It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

Mine, yours, all of them – they are individuals. They have specific needs. We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice. We MUST think outside the box for them.

25,000 – How did THAT happen?

Published on March 20, 2013 by beatingcowdensLeave a comment

I like math.

It makes sense. At least to me. There are questions. And then there are answers.

I ~~sometimes~~ often wish life could be a little more like math.

I am a numbers person by default. I remember dates, and addresses, and phone numbers.

I used to be even better at it, but age and stress have clouded a bit of the clarity.

But, imagine my surprise when I checked in on my blog in the middle of this crazy week to find the stats telling me it exceeded 25,000 views!

I can not for the life of me – even loving numbers- imagine how that happened. But it did. And I am humbled and grateful.

Especially on weeks like this.

Where things don’t go according to plan. And I have to be so careful what I say when the battles are too close to home.

I am tired. So tired of fighting – all the time.

But you bolster me up, and give a reason to keep fighting, so that Meghan gets everything she needs, and that I do too!

So thank you… and stick around. You never know what will happen next!

There is always hope... — There is always hope…

Mamma Bear

Published on March 17, 2013March 17, 2013 by beatingcowdensLeave a comment

Tomorrow is Meghan’s annual review for her IEP meeting.

It should have been an easy meeting. Continuation of PT and the paraprofessional until her triennial next year.

The Cowden’s Syndrome clearly warrants PT. We already have 2 sessions a week outside, and THEY want her to receive additional services inside the school.

She hurts, (by her own words)

https://beatingcowdens.com/2013/03/03/moving-backwards/ (This is a link to a speech she gave in school)

all the time. Some days she is just able to make the best of it.

Last week we lost 2 days of school (and work.) We saw 5 doctors, including an ER in those 2 days because of severe pain and virtual immobility in the left shoulder. No obvious trauma. Just the life of a 9 year old with Cowden’s Syndrome.

Cowden’s Syndrome can often be accompanied by hypermobile joints, making injury during daily activities much easier.

Cowden’s Syndrome is also a condition of over exaggeration by every body part. The smallest injury warrants a full, and sometimes incapacitating inflammatory reaction.

We manage a lot of things with Celebrex. But it is not a miracle drug.

We can not keep her in a bubble. She is 9 and wants to run and play.

But, that doesn’t mean her PT needs “don’t affect school function.” They do affect it – in so many ways.

So that is my job tomorrow. To get my point across. To speak for my girl.

Mamma bear is almost ready…

To protect baby bear… She WILL get what she NEEDS!

Facebook – and other lies we tell ourselves

Published on March 16, 2013March 16, 2013 by beatingcowdens2 Comments

I went to a wake this afternoon. It seems to be something I have been doing far too often lately.

This one was for an old friend.

Let me clarify – he was far from old. As a matter of fact he was just 43. But he was a friend from high school, which apparently was a long time ago.

In high school we had a thriving youth group at my church. We spent so much time together, they became extended family. We came from different schools, and our ages ranged – but there was a love and peace and acceptance among us that was really something spectacular.

We met at the church sometimes. We watched movies, played games and talked.

We sometimes went on retreats- Koinonia, Pennsylvania, Virginia. We traveled to youth gatherings. We laughed, we cried. We held each other up.

But time got in the way and years passed. College led into grad school, and husbands, and wives, and jobs. Then there were children and houses… and, you know how it goes.

Before you realize it – it has been 10, 15, 20 years since you have chatted with a friend. Nothing ever happened to cause the separation, just life – getting in the way of keeping in touch with those we love.

I met up with him last year, at the wake for his mother. We talked for a while – like old times. Years seem to evaporate in the presence of those we truly love. You see he was one of the “good guys,” and possessed the capability to light up a room with his sense of humor. He showed compassion for everyone, and had the ability to make you want to talk to him. I left that day, not overly confident we would see each other again soon, but still missing my high school youth group, and the security that the net of dear friends had woven for me through some trying times.

So when the news came this week that he had died. Without warning or explanation. That he had left behind a wife, 2 children, his dad, 2 brothers, 2 sisters-in-law, and their children – I was absolutely stunned. That’s just not the way its supposed to go down. He was one of the good guys.

So I found myself today in a funeral home in New Jersey having an impromptu reunion with my high school youth group. Most of us are “in touch” via facebook. I read an article here, see a picture there. I catch a quick status update from time to time. Sometimes I click “like.” And somewhere in my head I have justified that this constitutes remaining in touch. I was appalled at myself for even allowing the illusion to fester. Don’t misunderstand me. Facebook, and its social networking concept is fantastic. But it does not – nor can it ever- replace conversation, interaction, a hug, or – as we used to say in high school – a “nose pet.”

Facebook has been a blessing for me in so many ways. I have “met” so many other Cowden’s Syndrome patients. I have learned about, and shared experiences with others who suffer from rare diseases. Meghan has connected with two young Cowden’s friends – one on a different continent. But it still doesn’t fix the inherent problem with being able to look at a computer screen and delude yourself into believing you are “connected.”

I don’t know what the answer is. I, like all of my friends, lead an incredibly busy life. But I do know that leaving all my connections, and contacts with the people I love to facebook – reducing them to “likes” on a page, is not the answer. I looked around the small group gathered in the room, and I felt genuine love for these people. I enjoy their company. I find them funny and engaging, just as I did some 20 plus years ago.

As we reflected on our friend – we did our best to catch up. Then we hugged and went our separate ways.

I hope this will serve as a wake up for me, and that one at a time I will at least find the time to send an Email, or make a call. Life is busy – but there has to be some time – just a few minutes. There has to be.

We can’t be destined to meet again only at the next wake, when another one of the good guys is gone too soon.

Mourning his loss… hoping he is getting plenty of “nose pets” in heaven.

“Raising Small Souls” – a must see video

Published on March 14, 2013 by beatingcowdensLeave a comment

Normally I try to keep my life as a teacher, and a Cowden’s mom separate, but as I prepare for Meghan’s IEP meeting on Monday, I am reminded of this video.

I first saw it many years ago – but from time to time I watch it again. My Meghan does well in school but has a host of other issues. And, daily I see, admire, and love children who struggle terribly in school.

I think its about time they all get what they need. If only I knew how to make it happen.

“I’ll get you my pretty…”

Published on March 12, 2013 by beatingcowdens12 Comments

It is late, but I need to decompress. my apologies to those of you I meant to reach out to personally.

Really – the last few days again have been a whirlwind.

The Wizard of Oz seems the appropriate metaphor – so bear with me.

Some time last week Meghan began complaining of shoulder pain. Left shoulder – mildly irritated. So, we gave some tylenol and kept on moving. But come Sunday afternoon it seemed to take a marked turn for the worse. And that is where the story began.

She was struggling to move it at all, and the pain face was coming. You know – the face that tries to be brave but is so strained it just ends up looking exhausted? That one.

We got her to bed Sunday night but started to wonder if she would make school the next day. We waited until she was sound asleep and began poking at the shoulder. Sounds mean I know, but we figured if we got a pain reaction out of a dead sleep… and we did.

So I began to Email her awesome PT who did her best to help guide me and keep me calm. She also got me a 1:15 appointment for Monday.

I emailed my boss that I would be out and I let her sleep in Monday. Then she woke up. I guess that’s where it started to get trickier.

Well, maybe not quite that tricky yet – but close. The pain was intense. We decided to try the Urgi Care to see if she needed an Xray. We waited and were seen by a perplexed doctor who decided against the Xray and suggested we see the pediatrician. Great plan. He was on my list but I was hoping to get a jump start since his hours didn’t start till 2.

In the mean time, we went to see the PT. Have I mentioned Jill and Lauren at Leaps and Bounds PT are the absolute BEST? We saw Lauren who calmly assessed Meghan through careful range of motion activities. It was clear she was in great pain. Lauren told me she was worried about the muscles – clearly strained, and the potential that there might be a slight injury to the rotator cuff.

At this point I swear I heard the sound of Cowden’s Syndrome, like the Wicked Witch, cackling in the background, “I’ll get you my pretty…!”

My heart sank. The shoveling hadn’t helped I am sure. But the swimming. That had to be the real culprit. I felt like I had been punched in the stomach, or perhaps that someone had dropped a house on me.

It had taken years to find a sport that she enjoyed. One that she was ENCOURAGED to do. The pride and excitement on her face – amazing. And now the threat that maybe it caused this injury. My thoughts flooded with wonderings about the future.

At 2:30 we headed to the pediatrician. He evaluated her but wanted an orthopedist. We tried three. None took my insurance. Finally they found one local that takes my insurance who would see her Weds. (tomorrow) at 4:40 – but don’t worry because they are triple booked and we should plan on waiting 3 hours.

Um… no.

So as I stood at the window of the pediatrician’s office I asked him to order the MRI that seemed inevitable. He reluctantly did. Then I asked him what to do for her for pain. He called us back in and looked at her again.

He said what I already knew. He said, ” No one around here has a clue about Cowden’s Syndrome, and they don’t want to touch her.” Take her off Staten Island. Go up to Memorial Sloan Kettering where they first diagnosed her AVM. Go to the ER up there. We have no way of knowing if the knot behind her shoulder is a muscle or a soft tissue tumor. (Thank you Cowden’s)

“I’ll get you my pretty…” There goes the cackle again. And a firm reminder to Cowden’s that it WILL not get us

This was at about 5. So, we had a quick bite to eat and headed up to 68th and York. They were perplexed by our arrival, but they handled it fine. They got an Xray, and made Meghan comfortable with heat packs and pain medicine. The Xray wasn’t read because there was no radiologist on, so we were discharged hours later with the pain pills, and orders to see an orthopedist – the one who diagnosed the AVM, and to call our endocrinologist for the Xray results in the AM since he is the one we see at Sloan.

At this point Felix had joined us and we were all a bit punchy. Meghan was stiff and in pain. I was over thinking and exhausted… together we made quite a sight.

We arrived home after 11 and I headed down the street to the 24 hour pharmacy for her pain medicine. Except – they didn’t have it. And they offered me no suggestion as to where to get it. So, at 11:20 – armed with my smart phone, and facebook, I relied on the guidance of a few night owls to get me to a pharmacy. Medicine retrieved, heating blanket purchased, and Twix consumed – I headed home some time close to 1AM.

Felix was staying home Tuesday. It was Parent Teacher Conferences for me. So my head touched down on the pillow some time around 1:20 AM.

Too tired to even think, I could still hear the cackling of the witch – reminding me so much of Cowden’s Syndrome… threatening… “I’ll get you….”

I headed out to work by 7:30.

I called for the Xray results and got a reprimand by our doctor at Sloan that was appropriate for a child. He was annoyed that I had even brought her to the ER last night. I told THAT doctor to take it up with my pediatrician. I really despise arrogance.

In contact with Felix and Meghan we got an appointment for the orthopedist, on the 21st of MARCH!

Since that wasn’t going to work a long term plan, a call to the rheumatologist led to an appointment at 2:30 PM today.

Basically she feels the lump is a muscle and not a tumor…. (So take that bucket of ice water witch!)

She gave Meghan an order to rest for a week. Better than a season! She also gave a script for PT and a muscle relaxant for a week. We will reevaluate then…

In the mean time, she is asleep. Resting with a heating pad. School tomorrow will be tough, but she will make it.

I got through hours of conferences and stayed alert and awake!

I will find the number and call the coach about swimming.

We will not give up. But apparently she needs PT AND swimming, not PT OR swimming. We have time. Not a worry. We will fit that right in.

You know what, it has been a wild two days. But it could have been a whole lot worse.

Everything with Cowden’s seems to have a sense of urgency. There is always the “what if…” Her joints are hypermobile because of the Cowden’s. She injures easily. But all that means is we have to teach her to get in control of her body. So the PT is a have to. That’s ok. Could be worse. Least we love our PTs.

AND… it will be PT AND Swimming. My girl loves to swim. And she’s not half bad.

A few readjustments. A few more bumps in the road. A few more skipped meals, and some more gray hair. But it will be OK again.

Cowden’s Syndrome gives us obstacles. We work around them, through them – whatever is appropriate. As long as we don’t stop.

And well – if anyone says we can’t… we just melt them. It’s much quieter now.

Hopefully tomorrow runs smoothly.

But for tonight…