Yep. That’s what it is. It’s history. The story of our lives for the past year. It started in a small blog I shared only with a few friends. It blossomed into a WordPress blog with 50 followers, and a Facebook group with over 225.
I am humbled really – that anyone is even interested in our story.
Meghan slept until 11:20 this morning. She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.
We had woken earlier, Felix and I – but not too much earlier. We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan. She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off. We have a lot of respect for her body. It gets VERY cranky if you don’t listen carefully.
My three girls… resting together.
But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.
When she came stumbling out of her room to the sound of the hammer she was dazed but smiling. After a good morning hug she asked what we had to do today. When I told her that we were going to stay home all day she leaped into my arms.
Can I read? Yes…of course.
Can I watch some TV? Sure.
Can I take my shower later, and stay in my PJs? Absolutely.
While part of me was tempted to lecture her about getting up and showered and dressed, I refrained. Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.
In so many ways Meghan and I are somewhat different, but also a good deal alike.
Our bodies eventually shut down if they are always on the go. We need our down time.
Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up. They still move like that. And I still need to stop sometimes.
Now, I have a mini -me. (And my sister has two! :-))
Me and my girl!
So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off. For most of the month we were on a 7 day schedule.
Meghan switched schools.
We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….
But, we did it. A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.
State tests – 6 days of them in the last 2 weeks. Stress – all of them. But they are over too.
Yesterday I pulled out Meghan’s spring clothes. There wasn’t much we could use. The sandals from last year were a size 6. She is a 7.5. The same was true for the clothes. We put even less away for the fall. Nothing really. But we will cross that bridge then. Right now she is almost 5 feet tall and every inch of her beautiful inside and out.
No wonder she needs to rest sometimes. Her body is certainly hurrying its way through its growth.
I spent the entire day at my desk. I just finished about an hour ago when I began to write. There were bills to file, papers to sort, letters to write. There is a letter writing campaign I am working on for a stop sign by my school.
There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.
There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.
I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite. I thrive on order and organization. I showered early – like I always do, but I relaxed by creating order.
You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it. “You plan – God Laughs.” And I know she is right.
I really should listen to my Mom…
However, in this world where so many things are so far out of my control – I have a compulsion to control what I can. I can make sure the floor is clean, and the bills are paid, and the laundry is done. I can make sure there are always cupcakes for Meghan in the freezer in case there is a party. I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.
Crazy? Maybe. But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.
The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning. This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up. I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption. And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.
That is how it goes. Cowden’s Syndrome keeps us hopping. And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.
So – for tonight, the floor is clean, the list is made, the desk is organized. For tonight I can rest, and gear up for whatever this week has in store. And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.
I’m not in charge of this. It’s in the hands of a power far greater than any of us.
I’m only in charge of keeping the fur off the kitchen floor.
Working full-time is necessary, and carries some definite benefits, but huge time demands.
Being the Mom, and managing the bills, the groceries, and the lions share of the housework (and I have a helpful husband! :-)) is well, some days like standing at the bottom of a really tall mountain…
Having a chronically ill child is trying on the nerves. Worry and doctors appointments compete against waiting and absorb the bulk of any free minute.
Having a chronic illness, a rare genetic disorder like Cowden’s Syndrome yourself – well, it creates some challenges. And that is putting it nicely.
But, to combine all of the above… well I can tell you I wouldn’t trade any of them – but I am exhausted.
I spoke this week with a friend from work. Her son is chronically ill, but was suffering an acute episode one afternoon. This week Meghan felt fine. So, I had the opportunity to spend a short amount of time empathizing. While I was unhappy that he child was ill, I was in awe of her poise as she anxiously awaited news of her son’s condition in NJ. I think my heart was in my throat – yet my admiration for her composure under pressure could not be stated.
I am sure I am not the only one exhausted. I know I am not the only one contending with these issues. And, even if they were different – dare I say I almost felt normal – listening to others for a change?
My perspective is usually pretty good. I work hard to put myself in other people’s shoes. I talk a LOT with Meghan, about various social situations, and try to help her see that her point of view is never the only one. We have most of our best conversations in the car.
Tonight as we headed home from my in-laws I could no longer escape the conversation about the horrors of the Boston Marathon. I had shielded her for a few days because I truly just couldn’t gather my words.
So, tonight as I explained what the bad people had done, and I answered her questions, she was, as the rest of the nation was, absolutely appalled. And I spared her MOST of the details.
She wanted to know why people have to suffer. And she wasn’t talking about herself. She was talking about these victims, as well as other people – children and adults, with cancer, or other major struggles.
There was no right answer. So I gave her the best one I could. We have things in our lives to deal with – all of us. I don’t believe God picks us out to suffer. There is evil in this world. But I do believe, that we are given the strength to handle our struggles if only we ask. And, we are given the tools to use our struggles to make a difference in the world.
So she asked why people do evil things. Again – no right answer. So, I gave it my best. I explained that there are evil, awful people in this world, and she will encounter them at certain points in her life. But the beauty of it is, that for every evil person, there are probably hundreds, or thousands of good people. Those are the people we seek out in our lives. Those are the people we center our worlds around.
People are not inherently bad. Most people are downright good. And I reminded her of the stories I have told of the heroes of 9/11. And then I told her about he heroes in Boston.
I told her of the resolve of the police and all emergency personnel that REFUSED to give up until their people were safe. I explained how they put their lives on the line every time they rang a bell or even took a few steps. Yet, they would NOT stop. They shut down a city and they made it happen. They worked together, and they arrested their suspect. These are the good people.
And then there were the ones, who helped the injured at the marathon. Civilians and emergency workers alike. They ran in to give a hand because people were in need.
There are some rotten things in this world. There are diseases and illnesses and suffering. There are awful, evil people too. But we, we will live our lives focusing on the good guys. The ordinary folks that “wear the capes.”
This world is not full of evil people. It is full of good people who so often stand together intolerant of evil and focused on human decency.
God Bless the Boston PD, and all the emergency workers, and all the brave citizens.
We stand with you. We thank you. for reminding us that there are so many good people in the world.
Tomorrow Felix and I will be married 13 years. While in some ways 13 years seems like a long time – in other ways I sparsely remember that there was life before I married my best friend.
And as compatible as we are, anyone who knows us is aware that we are as different as day and night in so many ways. One of those ways is the internet.
I facebook. I blog. I Email. I communicate with people I know well, and people I have never met. He doesn’t. He communicates live and in person (and sometimes on the phone) with the small circle of people he loves.
In the world of digital footprints, I have to imagine that mine and Meghan’s are substantially larger than that of my husband. And with that knowledge comes the need to sometimes remind myself of what I already know – there is no privacy on the internet.
We live in a suburb of a big city – unique in the fact that 6 degrees of separation can easily be played – and usually can serve to connect “natives” in far less than 6 tries.
That means, that every post, every writing, every thought, every sentiment that I choose to make public will be read by people who know me, people don’t, people who like me, and people who don’t.
I have begun to “clean up” and clean out my private facebook account. Life is about balance. My husband wonders why I want to stay connected to people I don’t see or even know. Well, many of them hold a special place in my heart – whatever the reason. Many are very dear to me. But, some I really wouldn’t know if I passed them on the street. Do they care when my girl is at swim practice? Or that my anniversary is tomorrow? Or that we have a new church? Or a new school? The answer truly is – probably not.
So how does all this connect to Beating Cowden’s?
Well, here’s how I see it. I started this blog to raise awareness of a Rare Disease. – one that has changed my life and that of my daughter, and my whole family. I wanted to get the word out that this 1 in 200,000 disorder was wreaking havoc on our lives, and we are working to control it.
Then, as I became more educated, I wanted to expose people to the world of Rare Diseases. The reality that we are among the lucky ones has been a potent lesson.
I want people to know that Rare Diseases are not always visible. That even though we don’t “look sick,” the suffering is part of daily life.
These realities have made some people uncomfortable, and have brought some others closer to us. Lessons learned. Life changes.
So when I blog, I try to focus on my own experiences, but without fail they are intertwined with Meghan’s. What can I do to protect her? Not too much.
She wants this blog to continue. She is proud to be part of an awareness raising effort. So, I have given her editing privileges and the constant reminder that once I hit “publish” I can not take it back.
I think in some ways this level of awareness will help her – when she takes more control of her own digital footprint.
“Beating Cowden’s” is about our daily struggles – sometimes with doctors, our bodies, medical tests, surgeries, and just people in general.
I have thought so much about privacy, and how it is almost a work of fiction these days. I have worried about hurting people’s feelings on my private page – but I am starting to get over it.
If you make a conscious choice to put yourself out there – there has to be a purpose. And, you have to be willing to stand behind every word you type.
There is no privacy on the internet.
Beating Cowden’s will continue as a means to raise awareness of a virtually unheard of Rare Disease.
My own personal Facebook page will take a bit of an overhaul in the next few weeks.
All sorts of changes… and today on Easter, one of the most significant.
My Mom said to me many times when I was a teen, that I would do more changing in my 20s than I ever would in my teens. She was absolutely right.
I guess she didn’t want to overwhelm me, because she never mentioned the volume of changes to take place in your 30s.
You grow up sure. You have strong opinions. And slowly… they evolve.
I’d like to say the values I was taught as a youth are still at my core, but my expression of those values has changed over time.
And, while all that was taking place – I managed to meet the love of my life.
Sometime after we married we purchased a true “handyman special,” which we are still polishing up 13 years later.
Then there was this beautiful little girl – rocking our worlds from the very beginning. NICU, colic unceasing, OT,PT, Speech, hospitalizations, chronic viruses, tests, doctors, surgeries – and eventually Cowden’s Syndrome.
She grew into a beautiful young lady – despite the odds stacked against her. Her very existence changed my long standing beliefs on modern medicine, and strengthened my faith in God every step of the way.
My family unit is so strong. We are incredibly blessed to hold each other’s hands through the twists and turns and changes life has in store.
Today was a big one.
On this, Easter Sunday, the Celebration of the Resurrection of our Lord, my family stood in front of the Moravian church and professed our intention to become members of their community.
My history, my heritage, my core, was developed as a Lutheran. My heart is now Moravian.
And their motto, “In essentials unity, In non-essentials liberty, In all things LOVE,” speaks to my soul.
We make decisions every day – guided by the power of the Holy Spirit, with faith that we are moving in the direction intended for us.
The fact we now attend worship as a family of THREE, leads me to be sure we are on the right path.
My 30s have sure been a trip. I have only a few more months left and I wonder what else is in store. But heck, then there are the 40s to look forward to. One day my mom will get a few minutes to sit still, and I’ll grab a bottle of wine and ask her all about them.
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.
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.
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
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.
The Proud Dancer with her fans
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.
2012 On the Red Carpet
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
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…
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…
beatingcowdens 