God – Page 4 – beatingcowdens

Are you Santa?

Published on January 20, 2013 by beatingcowdens3 Comments

I can not take credit for the content of this letter. I found it on the internet, but it met my needs, as the questions started coming fast and furious. How can Santa…? How big is the tooth fairy…? All ways for her to let me know she “knew” and was ready for me to tell her. I on the other hand was not ready at all.

January, 2013

Dear Meghan,

You asked a very good question: “Are you and Dad Santa?”

I know you’ve wanted the answer to this question for a long time, and I’ve had to give it careful thought to know just what to say.

The answer is no. We are not Santa. There is no one Santa.

I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my mom did for me, and the same way her mom did for her. (And yes, Daddy helps, too.)

I imagine you will someday do this for your children, and I know you will love seeing them run down the stairs on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won’t make you Santa, though.

Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He teaches children how to have belief in something they can’t see or touch.

It’s a big job, and it’s an important one. Throughout your life, you will need this capacity to believe: in yourself, in your friends, in your talents and in your family. You’ll also need to believe in things you can’t measure or even hold in your hand. Here, I am talking about love, that great power that will light your life from the inside out, even during its darkest, coldest moments.

Santa is a teacher, and I have been his student, and now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he’s filled with joy.

With full hearts, people like Daddy and me take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is love and magic and hope and happiness. I’m on his team, and now you are, too.

I love you and I always will.

Mommy

I cried for at least an hour. She handled it with her normal grace and poise.

I hope she never loses her sense of wonder. Sometimes I wonder how broad the shoulders of a 9 year old should have to be. I know they all have to find out some time, but life is tough enough, escpecially when chronic illness fills your days. They should stay young as long as possible.

She already has plans to fill my stocking next year. She said I shouldn’t have to do my own – lol. ❤

And… Just in case I was worried – she said, “Don’t worry Mom, Disney is still the happiest place on earth!”

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…

No such thing as coincidence

Published on January 6, 2013January 6, 2013 by beatingcowdens2 Comments

I woke up this morning earlier than normal, and that is not like me. Worry had taken its toll on me through the night. I was up and showered with plenty of time to get Meghan to Sunday School.

She woke up sore and stiff – some combination of a difficult swim class, and her body’s realization that it had been two days without Celebrex. That is her “wonder drug,” the one that keeps her moving pain free. She needs to be off of it until it is determined if she will need thyroid surgery. The pain will progress.

Still, determined, she struggled through getting dressed and found her smile before heading out the door. She looks forward to church – the lessons, the children, the teachers. She adores them all.

As I headed home to wait out her class I heard a song on the radio that I have heard many times before, but today Matthew West‘s “Strong Enough” spoke to my heart.

If you don’t know the song, its worth listening to, but some of the words that spoke to me; “I know I’m not strong enough to be everything that I am supposed to be. I give up. I’m not strong enough… Hands of mercy won’t you cover me, Lord right now I’m askign you to be Strong Enough for the both of us…”

Tears streaming down my face I headed home. I am always thankful and amazed when the song I “need” hits at exactly the right time.

As Felix and I headed back for the 11 AM service I reflected on the week in front of us. The biopsy looms large. The results even larger. Sandwiched in between is an appointment for my spleen. Busy week for the Ortegas and their ever troubled organs.

I had Emailed the pastors to let them know of Meghan’s biopsy. They have done such a wonderful job helping us feel at home, even as we are technically “guests,” that they have made it known to us they appreciate being kept “in the loop.”

This morning during Church I was introduced to a Moravian Custom. Appranetly early in the year everyone chooses a scripture verse from a large basket. They called it, jokingly,” Fortune Cookies, Moravian style.”

We were told that this passage would be our “watchword” for the year, and that we would would see God’s work in our lives through the scripture.

I said a quick prayer to God to send us something good.

As usual, He did not disappoint.

For Meghan – Hebrews 11:1 – “Now faith is the assurance of things hoped for, the conviction of things not seen.” For my Meghan, a verse to define the abstract “faith” that yielded lots of good discussion today.

For Felix, a verse from Job 37:5 “God thunders wondrously with His voice. He does great things we can not comprehend.” A reminder to the strength of our family, from Job who suffered so.

For me, Psalm 116:2 – “What shall I return to the Lord for all His bounty to me?” The reminder to continue to “Pay it Forward,” and to remember even on the tough days, I am so blessed.

The prayers of the church lifted up my little girl, and she sighed. So pleased to know the larger community sees her needs. She has such a long prayer list of her own, that to be remembered and prayed for clearly touched her soul.

I left church to a hug from the pastor, who is also a mom. As I looked into her eyes no words were needed, and meaning was clearly conveyed.

Despite our rough times… God is good to us.

I heard the Matthew West song again today. I didn’t cry this time. I just took a deep breath. “I don’t have to be Strong Enough….”

There are no coincidences. Only the hand of God through the power of the Holy Spirit, ready with exactly what we need, when we need it. Truly amazing.

God’s got us covered.

By this time Tuesday we will be awaiting results.

Waiting…

Published on December 29, 2012December 29, 2012 by beatingcowdens2 Comments

Proverbs 3:5-6
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight

As my husband and I lay last night trying to fall asleep. We lamented over the fact that we are waiting. Waiting for a call for a biopsy time for Meghan. Waiting for a final decision on my spleen – still. Waiting… for all sorts of other less significant things.

The waiting is one of the worst parts of Cowden’s Syndrome. It is a blessing to have the warning to seek early detection, but the 6 month cycles of scans and tests, coupled with the waiting for results…. sometimes it’s just torture.

Meghan is nervous. Not about the threat of thyroid cancer. Bright as she is I doubt she grasps the full reality of that. She is waiting and worried about the biopsy. She already struggled to sleep last night.

As we spoke my husband said something that struck me. He said, “I am a little tired of being carried. I am glad God is there, but I want to walk a little too.” It only took me a moment to know he was referring to his favorite poem – the one we used as one of the readings in our wedding.

I guess we are waiting, for our feet to spend some time on the sand, knowing we are being held up – and incredibly grateful for the support…

Perspective… with a touch of fatigue and frustration

Published on December 20, 2012December 20, 2012 by beatingcowdens2 Comments

I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.

So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.

So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.

But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?

I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.

I think.

Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.

We are special. We are 1 in 200.000. There are 2 of us. And I am tired.

But, I haven’t lost my perspective. We are so blessed.

What’s in a name?

Published on December 9, 2012December 9, 2012 by beatingcowdensLeave a comment

It has definitely been a week, (ok – month…year) for reflection.

I started this blog in May of this year, after some encouragement from another Cowden’s sufferer. Once I realize how to do it, I was prompted to name the blog. I didn’t really give it much thought. I went with the first thing that popped into my head. And so, “beatingcowdens” was born.

The name seemed appropriate at the time, and I guess it still is. But because situations, and people are ever changing, I don’t think the name means the same thing to me as it did 7 months ago. Back then I had already had my double mastectomy, and I think I still was under the notion that if we got out in front of enough things we truly could “beat” Cowden’s Syndrome, the same way you “beat” a football team.

Well, I have come to realize to “beat” it would be to “defeat” it, and since I lack the power to change my genetic makeup, that simply can’t be. So now, I view it as a process. I spend each day, “beating” Cowden’s. Every time I get up. Every time I go to the doctor. Every time I fight to get better, and recover. Every time I explain to my daughter that it is all about HOPE and determination. This is all part of the process we call “beating” Cowden’s.

So really, what is in a name?

I guess it’s all about perspective – but then again, isn’t everything?

I had plenty of time to think about the whole “name” question today, as Felix, and Meghan and I took a trip to Bethlehem, Pennsylvania. We accompanied the Moravian Churches on a bus trip to tour Bethlehem, and to take in the Christmas Vespers at Central Moravian Church.

After a few hours in the bus, we got to tour the town. We walked up and down Main Street, enjoying the little shops, and a nice dinner. It was a welcome switch from the normal craziness of doctors, and illnesses, and therapy. It was better than filling out paperwork related to the car accident. It was, even through the chilly mist, a nice family day.

Although I must admit, as we gathered into the church for the service I still felt a bit odd. For so many years, and until so recently, I sharply defined myself as a Lutheran. Now, I was looking up at a Moravian star, marveling at the wonders God can work, and the sometimes unusual ways our prayers can be answered.

Personal issues with the Pastor at my home church left me unsettled and in many ways devastated earlier this year. So, I turned to God and asked for guidance as I looked for a new place to bring my family to worship. It was a long process, with lots of prayers, but some time in late August, I drove up Victory Blvd. I made a left and parked. I went into Castleton Hill Moravian Church on what I thought was a whim. I later thanked God for sending me the message I had been asking for. I brought my family the following week, and we have been attending faithfully as a family ever since.

So as I sat tonight in the Moravian Christmas Vespers service, I asked myself, “What’s in a name?”

I know a good deal of Lutheran theology, and I am learning the history of the Moravian church. There are countless similarities, and a few differences – all of which I like. Knowing that no place or person is perfect, and everyone has their shortcomings, I like the welcome feeling I get at each worship service.

So as we settled into the top row of the balcony of Central Moravian Church, I stopped and prayed. I asked God for peace from the constant turmoil that seems to surround our lives. And, as I sat there with my husband and my daughter a deep peace settled on my soul. Here in this almost 300 year old building, I found peace and comfort in the fact that my family was now enjoying church with me.

What’s in a name? Lutheran, Moravian…. I don’t think God cares. He looks for a heart that is right and focused.

I couldn’t get through a day, especially not sharing this diagnosis with my daughter, without the firm belief that we are being watched over.

Seriously, a Snowstorm?

Published on November 7, 2012November 8, 2012 by beatingcowdensLeave a comment

I try not to make a practice of questioning God. He always somehow proves to me He has it all together. But sometimes, it is REALLY, REALLY hard…

Like tonight. I am tired. And I have some nerve saying it. But I am. Tired, and worried – about my family, both immdediate, (like Grandma, who is making physical improvements daily,) and my Staten Island family

We are a week, OK 9 days out from Hurricane Sandy. I STILL know people without power. Gas lines are no longer something you address on your lunch, and those are the minor concerns… the really minor ones.

We are, as I type, being pummelled by a Nor’Easter. There is snow frantically falling. As it falls the trees, shook by last week’s wind are getting heavier. It is only a matter of time before they begin to fall. We are expecting gusts of up to 50 mph tonight.

And all of this would be manageable. If it weren’t for the absolute raw devastation my hometown is trying to endure.

I stayed away from the beach for a week, but yesterday we had the opportunity to do some volunteer work as part of our workday. My trip to Midland Beach was life changing.

I posted the pictures. The ones I saw on the news – of the places I had been. And the streets I had walked. And I thought I had some level of understanding. I was so wrong.

As I drove down Hylan Blvd, and I saw the car windows open on the lot of the dealership, it occurred to me that they had been flooded out. Knowing that they were a good distance from the water my heart really sank. There was a smell of mold, and water in the air. There was dust on the street. There were mile long gas lines. Was this my hometown, or a something out of a war scene?

I turned down New Dorp Lane, towards Miller Field, where my girl played soccer with her friends for a few seasons. We always joked as parents about the chill in the air so close to the water, as we cheered on our “Ladybugs.”

Well it was still cold. And there was no cheering.

The parking lot held a Red Cross truck, with food donations, a warming bus, several other food sites, some insurance vans, and lots of people milling about. Maybe like a movie shoot – except this is real life.

I was looking for my colleagues, who I thought to be closer to the water, so I walked. As I walked I could not help but stare. I thought I had seen the devastation. It wasn’t until I saw – that I was even able to process a FRACTION of the scope of this tragedy. I had no one directly connected to me who lost a home. Friends of friends, sure. It’s Staten Island, and everybody knows someone, but my direct connection was minimal.

As I walked and absorbed what I was seeing. As I let it pierce my subconscious…I felt like I was walking through the middle of someone else’s really bad dream.

On the windows of the houses closest to the beach, were stickers. Red meaning uninhabitable, yellow meaning proceed with caution, and green meaning its ok to occupy. Mind you these were markers of structural soundness with no consideration of water damage. I saw very few green ones.

A few block farther back there were makeshift streetlights, because no one has power. There were police cars, checking ID at the corners to protect these devastated people from looters.

As I got back in my car to head home I took a left instead of a right. I ended up deeply imbedded in sights unlike any I had ever seen. People’s entire lives, on their front lawn. I had to photograph, simply because the reality needed to be shared – with my daughter, and others.

sandy 6 — The front lawn of someone’s home

It took a few minutes to get back to the main street. Moving slowly and respectfully as I passed a charging station, tents of water and food, people frantically roofing homes… I prayed.

When I got back to Hylan Boulevard, I crossed over, headed for home. I passed Meghan’s former endocrinologist’s office – supplies in the parking lot – seemingly gutted. The water had devastated far beyond its apparent reach.

There are collections everywhere. At my school, at the church of my youth, seemingly everywhere you turn. Yet I am not sure all the supplies are getting where they need to be. I am not sure who is going to help them. Really help them put their lives back together.

That is one small corner of the loss in my hometown. Had I continued to travel the coast I would have seen similar scenes replayed over and over. God Bless the Sanitation Department for this herculean task. God help us all as we have generated such an excessive amount of trash in such a short time period.

The work day ended then, and I headed to my other life. To pick up my beautiful girl. To visit with my grandma. To vote, and to prepare all things necessary for the next day. In our house we have some sense of normalcy.

Even though our own normal is peppered with Cowden’s Syndrome, illnesses, and scans, and growths, and regrowth – it is our normal. And once again, I would not wish to trade places with ANYONE.

God, seriously though? As I pray for the hearts, and the minds, and the bodies, and the souls, of my fellow Staten Islanders – a snowstorm? Please… help them Lord, to stay safe and warm and dry. Wrap them in a blanket of Your love, and let them be warmed by the power of our prayers, unceasing.

It’s trickier in the overlap

Published on October 6, 2012October 6, 2012 by beatingcowdens1 Comment

Sometimes I think maybe if we were just battling one thing at a time… it might be a little easier. Maybe I am wrong, just wishful thinking. I guess I won’t know because apparently we are tasked with completing multiple battles simultaneously.

Last night we spent hours full of uninterrupted discussion with the pastors of the church where we will be spending our time. It is hard to know what to call it. I am not in any way prepared to give up my membership to my home church, and they know and respect that. Yet, it was so nice, so warm and comfortable to sit with my husband, and these pastors, and have discussions, both personal and theological. No one was judged. Everyone was comfortable. Mixed emotions 2 and a half hours later, past everyone’s bed time. Our children finished playing, and we left – tired but peaceful. It’s nice to know where we will be every week for a while. Its kind of like finding that first permanent job after years of subbing. It is also nice to have my husband by my side. God works in very strange ways.

We had planned to be out of the house at 9 to go apple and pumpkin picking this morning. We were a bit delayed by the late night, but we made it. It was so nice to see Meghan happy. She doesn’t ask for much, but had specifically asked for this.

We made her walk, and she did well for a while. Only towards the end did the pain in the legs start in. Cowden’s Syndrome always nipping at your heels as you try to kick it to the curb.

apple picking 1 — When in doubt – Daddy is the safest ladder!

pumpkin picking 2 — My PATIENT husband! 🙂

So after such a nice morning – with only minimal pain, a bit of fatigue and a lot of happy, we headed home.

I had missed my standard Friday night grocery shopping at our meeting last night, so we decided to stop by Wegman’s on the way home.

I think we made it about three aisles before a look of horror crossed Meghan’s face. Then there were the tears.

She opened her mouth and again, for the second time in the two weeks since she has had her braces, a bracket popped off. Now I know this isn’t totally uncommon, but twice already seems excessive for a kid who doesn’t eat ANYTHING she shouldn’t, and who is so attentive to these braces your would never imagine she was 9.

So, as we begin to reassure her that we will take her to get it fixed, SHE reminds US that it is a holiday weekend, and with sheer frustration on her face, she realized – half to herself – and half out loud – that it would be Tuesday before she could have it fixed.

braces - not meg — These aren’t Meghan’s braces, but they give you an idea of how hers are set. While they wait for the rest of her teeth, the wire doesn’t terminate at a band on the molar, like I remember, it ends right on a bracket. When that bracket pops off – the wire flies free.

I really was stunned. There in the middle of the grocery store, with a cart half full, our peaceful couple of hours was starting to crumble – again. Daddy took Meghan to some neighboring stores. I quickly finished the shopping, and we headed home.

The car ride was quiet. I was twisted. This kid has had enough. More than enough. A break for one WHOLE day would be nice. As I sat, I shed a few tears of frustration. I left a message on the answering machine at the orthodontist, trying to decide if this was a “true” emergency. My husband decided it was and called the cell phone number soon after we got home.

He called us within an hour. He is a good man. But, he was away. “Clip it,” he told my husband. “Take the wire and the bracket off. I will fix it next week.” And so the electrician turned orthodontist, and off came the bracket.

Peace.

And yet as I looked in her mouth, the mouth I help her brush and floss, and I see the swollen gums, enveloping her braces, my stomach turns at the conversation next week. We will both be told her oral hygiene is poor. I am sure of it.

Cowden’s means overgrowth. The gums are supersensitive. Reacting to the braces. Trying to swallow them up. We floss, we brush, we poke and prod. No success. Certainly we are trying out best.

Nothing is simple. Every battle is crowded by another. It’s not just the Cowden’s Syndrome. And it’s not just the regular growing up stuff, like changing bodies, and braces, and homework, and after school activities. It’s the overlap. That’s where things somehow always seem to get tricky. Right there in the overlap.

Daddy made a tasty dinner. Chicken wrap with fresh guacamole. Things were looking up. Then, they started to decorate the BIG pumpkin.

Sleeping peacefully. Potentially a dreadful weekend, salvaged by a clipped wire. Emotions all across the spectrum. Another day in the life. Another day of sorting through the overlap.

And, believe it or not – since I share it with the two I love the most – at the end of the day I wouldn’t have it any other way!-

The New Normal

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Worry -it’s what’s for dinner.

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

Random Reflections – nothing profound today!

Published on September 2, 2012 by beatingcowdens3 Comments

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

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

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

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

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

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

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

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

I am about done with all these doctors!

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

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

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

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

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

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