waiting – Page 6 – beatingcowdens

Playing in Pain

Published on April 27, 2014April 27, 2014 by beatingcowdens3 Comments

We missed church again today. Not because we overslept. Nope. We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room. If I had my copays back each year, I think they would exceed my tax return. Which is no great shakes anyway, especially with the whole identity theft mess. But, I digress…

Yesterday was a CYO swim meet. It started poorly because the bungee on her prescription goggles snapped in my hand. And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right. So, she want back to her old goggles. Guaranteed functionality – sacrificing vision.

She swam. Hard and as fast as she could. She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly. She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too. But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.

When I met her in the locker room her resolve was strong. My mission was clearly to help her get out as fast as she could. But the arm made it tough to change quickly. We got into the car before it all came out. She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.

We came home and iced the arm. We watched as the pain seemed to get worse. It went from the arm, up into the shoulder and into the neck. We are so used to there being pain. This child lives in constant pain. Some people must think all sorts of things, because something truly always hurts. But we have learned to put them aside, and, we have to triage. Last week she walked around for 5 days with a sprained ankle. Pain is so personal. Her nerve endings seem so easily excitable. Any injury seems to trigger an attack of “hyper healing” effort by her body. Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.

But she is an athlete, trapped in a body that is not quite sure how to handle her. So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination. She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.

It’s not uncommon for her to spend the day after phys ed. recovering. Or a day or two after an athletic play date trying to work through the residual pain. I know that the other kids aren’t fighting their bodies like this, and it breaks my heart. But she is one determined young lady.

So last night we sent a text to our PT. To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services. And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years! And at 9PM last night we were in her living room – getting informal advice from a very skilled friend. If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis. She is the one who said, “something isn’t right here – too many unconnected pieces. Take her to genetics.” And I did. And the rest is our unfolding story.

Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.

She's an absolute DREAM child - but really God knew what He was doing giving us ONE! — She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!

So we did. We also got a note because the injury is to her right bicep and shoulder. Her dominant side. And there is no practice for her tomorrow. And no Phys. Ed. on Friday… and then there is the math test this week. And the gamble as to whether she will be able to write enough, fast enough… So much to think about.

The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.

We spent some time today talking about our fundraising hopes for Rare Disease Day 2015. We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013. We talked about wanting to do something BIG for the PTEN foundation http://www.ptenfoundation.org/ and Global Genes Project. http://globalgenes.org/

I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.

She managed to type out the homework. We are getting ready for tomorrow and another crazy week.

We are babysitting my sister-in-law’s 12-year-old rottweiler. A 3 dog house. Cause a little more chaos creates more reason to keep on keeping on.

And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before. And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did. The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.

So tonight we will get a real sense of how long the muscle relaxant helps. And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.

I think I’ll get everything prepared nice and early. Just in case…

I WIN!

Published on September 13, 2013September 13, 2013 by beatingcowdens2 Comments

Yep. Finally the taste of victory, and I will savor every single drop. I know all too well these moments don’t come often.

Sandwiched between way too many doctor visits this summer, were a few other pressing problems.

We need a new roof. Well, that one is cut and dried. Pension loan. Money available – job before the winter.

The bay window in the front of the house needs to be replaced. That one, not as easy. Lots of paperwork to participate in a class action lawsuit where apparently lots of these windows have leaked. WAITING, and following up, and WAITING, as the wood shrinks and peels.

And then there was the car.

The car we bought in December after this happened in November.

The slightly, (but not too fancy because who was ready for a car payment?) upgraded car, was the same make and the next model up. It included more space, and XM radio capability, and the ability to have a navigation system in the car if we decided to subscribe.

If you have spent more than 5 minutes with me you know I can barely find my way out of a paper bag.

In the midst of being tired, and sore, and frustrated about the accident, I was THRILLED to have a navigation in the car.

The navigation was also connected to a blue tooth that went right through the car speakers. My phone synced to the car and I could talk without worry.

I was thrilled – when I wan’t frustrated. Or lost. Or left dropping calls, or using my Iphone to take me places.

The car wasn’t working right very early in the game. We ignored the “glitches” for a few months thinking it would get better.

Then in April it made its first trip in for service- only to be declared healthy.

Until it wasn’t.

Then it went back in. This time a new radio.

Nope – that wasn’t it.

And so on and so on and so on and so on.

I drove more rental cars this summer than I ever want to drive in my life.

During one stretch the car spent 11 days in the service station. They said they couldn’t fix it.

They called in the field tech (“Magic Wand Guy.”) He said it was fine.

Nope. Not fine. My Iphone is full of voice memos of me trying to get places. It took us 18 minutes to get started on the trip to the Philadelphia Zoo.

At one point I drove around the neighborhood giving it addresses. It was 2 for 10.

And the sound on the blue tooth just kept getting worse.

I didn’t know much about the Lemon Law, except that it exists. But hidden inside the glove box of my car was a handy book explaining it. It also gave me detailed instructions on how to file a claim (free of charge) to be arbitrated by the Better Business Bureau.

I read.

In between trips back and forth to NYC for doctors, I read and I learned, and I first tried a letter to Corporate Office. The deliver confirmation says it was received July 22. I wonder when it hit the shredder?

Next, I opened a case with the Better Business Bureau. They closed it when “Magic Wand Guy” was coming to fix the car. After he declared it fine, and before I even drove it off the property, I tried the system again. Still broken. I reopened the case.

When they ask what we would like to solve the problem my husband said, “Tell them we want a new car.” I was really hesitant. He explained his fears that the problem that no one could seem to fix likely lay deep in the central computer. I trusted him.

It took so many hours to prepare the documents. I wrote a narrative that was over 10 pages. I faxed. I Emailed.

All of this in between dragging ourselves back and forth to the dealer in between doctors.

Today it paid off.

I finally got that call from corporate.

They are replacing the car. No out of pocket cost to us at all. We went tonight to decide on a color. The VIN number has been assigned to us. 7-10 days for the paperwork.

Then I drop off the old car and drive away with the new one.

If you asked me in July if I would ever buy another car from these people again, I likely would have said, HELL NO!

However, with so much time spent together I developed a respect for the Service Manager. And, in the end he was our advocate.

And tonight, while we filled out papers, with no commission to be made, the salesman was kind. He was friendly and patient. He was personable and understanding. He got that WE matter.

We chose black. Time for a color change.

So many things go wrong, so often. Hanging onto the anger will make you sick. And, well – we haven’t got time for that.

Sipping my t+Chai I have peace.

Talking on the phone to my father before he told me a story. The day Meghan had her hand surgery, I had to go drop the car for the (millionth) time. I was stressed about leaving her, and about the whole mess. He told me tonight she said, “I don’t know why Mommy’s so upset. She’ll get this taken care of.”

Tonight when I was so happy she said, “I never doubted you.”

Her confidence. Whatever I did, by whatever grace I have it- I hope to keep it for a long time. It’s quite the compliment.

I don’t keep a win/loss column. It would be too distressing. But tonight – we win. And for tonight, that’s just plenty.

I Know Why The Caged Bird Sings

Published on August 27, 2013August 27, 2013 by beatingcowdens1 Comment

I Know Why The Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom

The free bird thinks of another breeze
an the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

Maya Angelou

I am sure this is not what Maya Angelou had in mind. And really for the safety and sanity of my friends and family, I don’t sing – ever. Yet the phrase about the caged bird keeps running through my mind.

Being caged is an illusion in some respects. I have a beautiful house, and a lovely family. We have two cars that work sometimes, so we do have access to the outside world.

Yet sometimes life with Cowden’s Syndrome can make you feel caged. It takes away the freedom, the ability to go as you see fit. It robs you of the carelessness that should be an inherent part of a 10 year old’s day.

And even as some days I want to cry with frustration – my young caged bird continues to sing…

This is the summer of irony. All over the place and in our faces.

Not lost on us are the numbers of family and friends whose privacy I respect too much to mention, but whose lives are upended, and who are in their own right “caged birds.”

All summer we sat at doctors. One after another. Hours upon hours upon hours.

Now- we don’t have any appointments. But the broken wing- the wrapping on her hand and the stitches prevent us from getting too far.

The hand has to be elevated with a Carter Block, until the stitches come out Thursday. Then we can talk about resuming therapy. Today the calendar is empty. The sun is shining. And here we sit.

Not exactly alike - but you get the idea — Not exactly alike – but you get the idea

The pool is crystal blue under the bright sky. Taunting.

I can take her out but if we go too far, or do too much, the throbbing begins again. Maybe we will make a quick trip somewhere just to get out.

I have a million things to do. No shortage of work to keep me busy. But, I can’t seem to get anything done. Irony. You want and want for time to get things done, and then… it’s like I developed a full blown case of ADHD. I can’t keep up with my mind, and the list just grows.

If I take responsibility, some of this feeling comes from my general lack of spontaneity. I am a planner. Much to my detriment. I long to be the one who just gets in the car and goes. But even though I struggle with this and try to gain a glimmer of impulsive behavior, the reality of our lives seems to tether us close to home.

Allergy meals are tough to come by and can’t be taken for granted. Food and enzymes must be planned….The consequences are dire and painful. I won’t take the risk.

So, here we sit. God bless her, and her patience as she alternates reading, TV, and playing with the iPad.

I am working on laundry and the floors, and cutting some 100s charts out of laminate for school. Always moving, and accomplishing precious little.

I am breaking out into a cold sweat as I schedule our next round of appointments. What a feat. Distressing, disturbing, necessary waste of time. I have about 8 scheduled for us from December to February already. And a few others sprinkled in for good measure.

We see the doctor on Thursday. She should get some freedom then. Just in time to set up my classroom.

Maybe I will just open the cage long enough to sit on the deck, or take her for a walk around the block.

Have to remember the little things, because they really are the big things, right?

Staying focused…

It Never Gets Easier

Published on August 20, 2013August 20, 2013 by beatingcowdens8 Comments

They say “practice makes perfect.”

I disagree.

No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.

And boy have we had practice!

This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.

This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.

As long as…

Well now we fidget and pray and keep busy. There will be time for the rest.

My Wish

Published on July 18, 2013 by beatingcowdens5 Comments

I have been quiet this week. That in and of itself is unlike me.

I am tired – well bordering on downright wiped out.

There are a few more weeks of summer to go, and aside from a well planned Disney Trip, set in place in January – there seems to be precious little to look forward to.

Meghan has a short list of “have tos” which I plan to do EVERYTHING in my power to work out for her, but really every effort I made to keep this summer better – to “streamline the doctor visits” seems to have failed miserably.

Today she began her summer homework. While it is reasonable, it is one more thing on a list of “have-tos” for a kid that just wants to be a kid.

There is no camp for Meghan. It is all doctors appointments – all the time. And when it is not her appointments it seems to be mine. She is swimming three nights a week on a new team, at least she is LOVING that – but we have barely been inside our previously overused pool.

And its funny, while she and I have both had appointments of almost equal number in the last few weeks, I feel so much less stress about mine.

The geneticist the endocrine surgeon, the gyn oncologist, the abdominal MRI, the plastic surgeon, and the oncologist. The spleen survived its next cut – and can live for another 9 months. The 3.5 cm roundish lymphangiomas are stable. That’s all we ask for now. The thyroid lymph nodes – not suspicious enough to biopsy.

The plastic surgeon, well the LOVELY woman offered me a boob job to correct the “asymmetry” caused by me shoving the reconstruction all into one day. Not this year, but thanks. Good to know the offer stands indefinitely. For now, I have other things to do.

So I have only one more of my appointments lingering, a late July follow up with the breast surgeon. I thought of blowing it off and then realized how dumb that would be – for so many reasons. So, I will go.

But Meghan’s appointments, those are the ones that keep me up at night. Those are the ones that strike fear and anxiety in the core of my soul. My heart beats outside my body in this little girl. I can not sum up in any number of words the depth of my love for her.

So to say this summer, and especially this week has been sheer hell would be the understatement of the century.

Her appointments began the day after school ended. The lengthy thyroid sonogram bought us another 6 months. The pituitary function test was a train wreck, but the call this week claims the results were OK. I want to feel more relieved. But its hard. I am waiting to read the report myself. “Doubting Thomas?” Maybe. Realist – probably. Something is not quite right, but at least its not SO wrong it has to be addressed today.

The geneticist began to speak of carnitine issues, and I am waiting to hear of a possible muscle biopsy. In the interim I bought carnitine. Lets see if we can cut that one off.

The vascular surgeon examined the wrist, painful since early June, and the knee. He wants an orthopedist on board, but wanted me to consult with the rheumatologist about the wrist, and then scan the knee that had the 4 surgeries, because its been over a year. The rheumatologist concurred on the MRI studies, so we went forward with the wrist first.

Saturday, as I wrote about previously was hell on earth. I have been through a lot of MRIs with this kid, and the behavior of the two techs scared me to my core. I was assured upon exit, that the results would be available to my doctor Monday that passed. Well multiple calls, over the course of Monday and Tuesday led to a promise the results were being released Tuesday. “It’s a complicated read Mrs. Ortega.”

Wednesday morning – still nothing at the vascular surgeon’s office, only to find the CD and report left by courier at 10 am. They will make it by 3 I was told.

A return call to the surgeon’s office at 4:15. “They just got here, but the doctor is gone – emergencies. He should be able to look at them tomorrow.”

Some time around 4 AM my daughter climbed into bed between my husband and I. She had been awake long enough to finish her book, but she just couldn’t settle over the pain in her wrist. At about 6:15 this morning she nodded off. I tried desperately to find my peace.

And all day today, again, I held my phone. We skipped the pool in between the “have tos” of getting the oil burner cleaned and our annual trip to the dentist (normal stuff.) I refused to be far from my phone. But as minutes became hours, my hope dwindled.

A call to the office at 4:30, “Sorry, he never made it in today, but Meghan’s chart is on top of his desk. He has office hours tomorrow.”

Six days.

Unnecessary torture.

Six days.

Wondering, worrying.

Even if the report – by some freak of nature reads “normal” I can’t even be pleased, because the pain is not normal. It is real, and it is consistent, and it has gone on too long.

I wish for a lot of things in the world.

I wish for children and their parents not to suffer with illnesses or adversity of any kind.

I wish for relief for those in physical, mental, and emotional anguish.

I wish for peace in the hearts and minds of the caretakers of those who struggle.

But today I also wish something else.

I wish that EVERY SINGLE medical professional who performs a test – from what is perceived as insignificant, to critical recognizes the power of their words, and their actions. I wish that EACH of them understand what it is like to be on the receiving end of cryptic messages, grossly extended tests, and precious little reassurance. I wish that EVERY doctor who receives a call from a patient panicked about their results be PROMPT in their response. I wish that EVERY one of them, who goes to work each day and forgets that our child, parent, sibling, loved one exists will at some point in their life be on the waiting side.

I WISH for every one of them – from the techs, to the couriers, to the office staff, to the doctors- to have the opportunity to await the results of a test from someone they love dearly.

Then MAYBE, just MAYBE they will understand our torture.

Hang on Meghan. Summer is coming. Hang on.

Overwhelmed

Published on July 4, 2013July 4, 2013 by beatingcowdens1 Comment

Yep. Totally and completely overwhelmed.

I know I am not the only one. But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July. I couldn’t wait for schedule free days. Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year. The July calendar makes me nauseous. Literally.

I mean we might have gotten bored eventually, but we have barely been near the pool. I say bring on the boredom.

Most of our appointments are in Manhattan. That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity? day of the week? air pressure? There is ABSOLUTELY no predicting.

We could take the bus. But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do. So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack. Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time. Sometimes we are late. Always we wait, and wait.

Meghan is the most well-behaved child. I don’t lie because there is no need. I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit. For hours and hours. I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice. There is no traveling to Manhattan at 4 pm, on a school night. It just can’t be for either of us. So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years. She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool. Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week. Thinking. Asking. Wondering. Worrying.

Today is a good day. Daddy is home. The ultimate distraction for her.

We had a long talk this morning, me and my girl. I tried to push her to reach out to some friends. To go and be carefree like she should be. Even if its only for a while. Everyone has something we reminded each other.

I still can’t shake my need for order. I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing. Sucking away hours that should be spent on the beach or in camp. Forcing a little love to grow up way too fast. Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today. Just the license. It fell out of my pocket. For $17.50 I ordered a new one on-line. Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina. They don’t know what they are up against.

The beach… and all her other plans – I will do my best.

Just trying to get by one day at a time.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

The thought for the day... — The thought for the day…

BENIGN!!!

Published on January 11, 2013 by beatingcowdens25 Comments

I headed home at lunch with the need to send out this message of thanks, to those of you who thought about us, prayed for us, and kept us close to your hearts.

I spoke to the nurse this morning. She said the pathology was BENIGN! I don’t think I heard much else she said, as the tears just started flowing.

We are not, nor will we ever be “out of the woods.’ They will scan her thyroid every six months indefinitely. But I am learning with Cowden’s Syndrome to accept the “6 month leash” as a win.

Right now she does NOT have thyroid cancer.

Right now she does NOT need the thyroid removed.

Although the MOM in me in some ways wants it gone BEFORE they ever tell me its malignant, I do understand the doctors reasons for waiting.

So, with a renewed appreciation for the power of prayer, and a belief that we have MANY guardian angels watching over us… I say THANK YOU ALL.

Blessings… and patience

Published on January 10, 2013 by beatingcowdens2 Comments

We try to stay focused, and distracted at the same time. Even Meghan knows this is important news. We laugh, we pray. We hold each other up. We wait…

One step at a time

Published on January 9, 2013 by beatingcowdens14 Comments

Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)

The surgeon said that the hamartomas are there. They are large, but they are stable. Stable is a nice word. So, because they are stable it implies they are benign. This is another nice word. The game becomes seeing if they remain stable. So, in 6 months I will have another MRI. If they have changed – it comes out. If they haven’t we can continue to talk about keeping it.

Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s. Is it by coming through with the most organs still intact and cancer free? This is such a strange, relentless disease. It’s research, while still in its infancy is coming. But, I have to wonder how much more they will know a year, or 10 years from now. And, whether I will like any of it.

We are waiting. And we know that we are not alone. We are waiting for Meghan’s results, and its nail biting, agonizing waiting. But, Felix and I talked tonight and wondered what news would make us happy. There was no easy answer.

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous. They had scored a 3 out of 5 on some scale they use. He told us they would turn. We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious. But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later. Tomorrow will mark an agonizing 2 weeks since we went for this sonogram. Waiting. Worrying. Wondering.

When they tell you its “when,” not “if,” it changes things. No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome. It’s almost like a time warp. A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.

Six months seems to be all you really get. Well, now what I have lost a few organs, I get a year on those follow ups. But everything else is 6 months. For both of us.

I tried to sync them up. So that maybe the worry wouldn’t seem continuous. But it hasn’t worked yet.

I try not to think too far ahead. You know what Mom says about planning anyway.

And to think about this in constant 6 month cycles, well… forever. It’s a little too much to manage sometimes.

So, we take it one day at a time. Sometimes one hour. Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

Prayer Circle

Published on January 7, 2013January 7, 2013 by beatingcowdens14 Comments

There are a lot of people who pray for Meghan. And we are grateful for every single one of them. But, there are a special group of ladies…

Well, between them they have 9 children – 3 each. They all have incredibly busy lives, and all of our lives connected some years ago. We don’t see each other all that often, and rarely in the same place, but they are my prayer group of sorts. Our children are connected, in a bunch of different ways. Our lives are intertwined, and we have vowed to support each other.

We all seem to share the belief that –

And, with that belief comes responsibility.

So, they were among the first people I shared my blog with in its infancy last year. They are the ones I turn to and say… lift this up… PLEASE, and without fail it is done. And they do the same for me. We all pray fervently for each other. For friends, and family. For people we know well, and for people we haven’t met, and for people we may never meet.

We pray because we believe it works.

We pray because we have seen it work.

Last spring when my sister’s dear niece was knocking on death’s door – felled by a virus of unimaginable strength, we (along with countless others) prayed. And we witnessed nothing short of a miracle.

The day of my mastectomy, wracked with fear – terror actually – my cell phone rang as I was checking into the hospital. My brother-in-law, a Lutheran minister was on the phone at 6AM, ready to pray with me. As the tears rushed down my face I felt the calm envelop me.

Prayer is powerful.

But, it doesn’t always take worry away.

So tonight, as I struggle to sleep, I will think of them with gratitude. I will also think of the countless others – those we know and those we don’t, who are lifting my little girl up in prayer.

Tomorrow we go for the biopsy. Then we wait. I am not sure which part we will need your prayers for most. But, please – whatever you believe, remember us this week…