Sounds ridiculously cheesy I know. Sometimes the bad things are just crap. And some days just stink. But, not most of them. Really, if I think about it- just a few days now and then really stink. The rest of them seem to hold within them some lesson, some joy, some laugh, some memory – something that makes my spirit richer than it was before.
Don’t ever delude yourself into thinking things are perfect here. That would be a lie. We have our whiny, cranky, in each other’s way kind of days. But that’s not most of them.
Lots of rotten things happen to everyone. But lots of good things happen too.
Lots of rotten things happen when you have Cowden’s Syndrome. Sometimes the key lies in looking at things from a different perspective.
Every moment. Every meeting. Every diagnosis. Every doctor’s appointment. Every report read. Every bill fought for. Every new teacher. Every new friend. Every old friendship renewed. Every miracle. Every ordinary moment. They all bring us to where we are.
Maybe I have watched too much sci-fi with my husband, but to change any one thing, any event in our lives, could alter the course of our lives.
I won’t spend time wishing things away- certainly not the good, and definitely not the bad.
Sometimes the lessons hurt. Sometimes they make us cry. Sometimes, like when we say goodbye to dancing school, and all its emotional joy, coupled with insufferable physical pain, we get a little sad.
Then we say, if it wasn’t for dance, we wouldn’t have learned love of the stage. If it weren’t for dance we wouldn’t have seen a growth in confidence, and an ability to manage a growing young body. Losing dance is hard…
But if there wasn’t Cowden’s, and chronic pain, and an inability to deal with impact – would there be swimming?
Private lessons at a local college start Saturday. Regular practice begins the next month. She salivates when she gets near a pool. She just wants to get better and better.
New sport, new school, new friends, and old ones too. Same old pain. Same nasty viruses. Some things change, and some remain the same.
Sometimes I wish (quietly to myself) that life could be a little bit easier. Then I look at my daughter, and my husband, and my dogs, and my house, and I think – things are just fine right here.
We have each other – for the ups and downs- for the ins and outs.
They say if everyone had a few moments with everyone else’s problems, they would fight to grab their own back.
I believe that there are lessons to be learned from every event in life- especially the ones that don’t turn out like we plan.
I believe in looking for the positives; when plans change without warning, when people disappoint us, when we are thrust onto paths we never wanted to travel and into circles we never knew existed.
I believe that our indoctrination into the world of Rare Diseases came with an invitation to sit back or step forward. We choose to step forward. I believe we will make a difference.
I believe in prayer, and God, and miracles, and angels – and I am not ashamed or embarrassed to say so.
I believe in a God that doesn’t plan for bad things to happen, and who cries with us when they do. I believe that same God will give us the strength to get through the trials and tragedies and all our adversity – if only we ask.
I believe in angels, and speak regularly of my cousin Meghan, our guardian angel. But, I also believe there are armies of angels around us. I am thinking especially today about the father and his 4-year-old daughter that were hit by a fire truck at the same intersection I had my accident in November. Nothing short of angels pulled them both from the car – shaken and banged up, but very much alive.
I believe in miracles-large and small. I have witnessed at least one large one, when my sister’s beautiful niece pulled through a very scary life threatening virus 2 years ago. I believe that miracles happen every day – all around us. But every day I witness miracles, as the flowers bud, and the birds fly, and the children grow.
I believe that adversity can only define us if we let it. Our struggles surely shape us, as we grow each day – but how we handle them affects us, and the people around us. I believe that Cowden’s Syndrome – through my daughter’s diagnosis, saved my life. I believe that PTEN mutations, and broken tumor suppressor genes are scary – but not “hide under the bed” scary. They are more like “you can try that roller coaster you don’t like” scary.
A roller coaster ride!
I believe we are allowed to be frustrated and sad and angry and mad. Every single one of us – sometimes. I believe that life can be very, very, very hard. Overwhelming at times. But, I also believe in doing my best to channel that energy, and teaching my daughter to do the same.
I believe in smiling more than frowning. I tell Meghan that she will draw more people to her with a smile on her face. She listens.
I believe that good things can come from unexpected change. New friendships and old ones become more solid when tested. People you never expected can go to bat for you – and look out for you.
I believe in surrounding myself with people who are “real.” Who say what they mean, and mean what they say. I believe in surrounding myself with people who have all types of beliefs, as long as they have a kind heart and are true to themselves.
I believe in speaking out about my own life, and my own experiences; whether they are medical, allergies, emotional, physical because keeping them inside doesn’t help a soul.
I believe writing helps me channel my own energy into a productive outlet. I believe I will spend every day on this earth in some way thinking, addressing, or working through a medical issue for Meghan or I. I believe – if I stay focused it will not consume me. (Although from time to time I may need some help!)
I believe that people who are only in this life to gossip and spread lies and false information are toxic.
I have made a pact to rid my life of toxins. I believe with a lot of determination it can be done!
Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.
We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.
It can be an all-consuming job.
When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.
There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.
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.
Stuck in a corner – a stifling corner, with anxiety, and all of its evil friends – we decided to break free.
And I can not think of a better thing we could have done.
Today was Meghan’s 3rd full day at her new school, and while she misses her friends – she is adjusting beautifully to the welcoming students and professionals that have greeted her.
She received an outstanding foundation at her old school – teachers who worked alongside her right up until we made the move last week. She received a foundation from them that will allow her to soar here.
I am eternally grateful.
But there is a time for moving on.
Sometimes it happens neatly at the end of 5th grade. And sometimes it happens before that. This was her time.
Which shouldn’t surprise anyone because nothing really seems to be wrapped up in a neat little organized package – not in life, and certainly not in Cowden’s Syndrome.
She changed schools, but the Syndrome stays. And sometimes that’s a hard reality to swallow.
See she is so excited to meet new children, and to run and play and socialize – we hoped that maybe the release of tension would eliminate the pain. It took a few days for the pain to catch up. But, it moved too. It lives with her – no matter what school. Although I am convinced it is less than it was.
Stress is evil. Tension is its nasty twin. The conbination wreaked havoc on her already struggling body.
Now, there is much less stress and tension, but there is still pain. A knot in the hip that doesn’t want to quit is pestering her still. And while I am grateful that the tolerance is higher, I am not sure if the pain is any less.
Any time an injury lingers, or a pain persists for more than 2 weeks – even if it is intermittent – we have to ask ourselves if it is time to go for imaging.
Xrays are not good for Cowden’s Syndrome. Radiation can send our sensitive cells into a tailspin. And the alternative – MRIs, are taxing – on everyone. But how long do you wait for a pain to go away when you have a syndrome that provokes tumor growth? How do you know what is the right time?
We scheduled the summer appointments. I was hoping to wait until then for all the check ups and tests.
Somehow, I suspect we will have to see someone a bit sooner.
But, I am stalling. Maybe the happiness will cure it.
Maybe swim season – her first ever competitive sport she ADORES – will straighten it out.
Maybe.. just maybe… we won’t have to add one more confused doctor to the list of clueless professionals who don’t know how to help us anyway.
Maybe… her blood results from Dr. Elice will come in this week, and maybe there will be an answer or two.
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.
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.
beatingcowdens 