I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery. It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that. Why is it OK to treat yours that way?”

It isn’t my dear. And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system. It lingered. So, yesterday, off it went. I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30. There’s a post it on my desk. To be continued.

Just Do Your Job.

When I finished that letter, I wrote one to my health insurance carrier. We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017. When we went to the appointment there was no one to collect a co-pay. I figured they would bill it. Then, I forgot. The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier. This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling. All of which will need to be watched. I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM. That was a Thursday. On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees. My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company. They later admitted never billing me. No apology. The insurance company never reached out to me. Never told me the check had been stopped. I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail. My insurance company had no explanation as to why they never afforded me the same courtesy. My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her. She said she’d expedite it. It’s been 10 business days. The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order. My insurance has denied payment of the drug until it goes to mail order. Thank goodness it’s affordable. I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

Tomorrow, I will make a few calls on our newest denial. I suspect it will take a few weeks to sort out, but I will win this appeal. Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.” Nope. Not working for me.

Apparently they weren’t at the swim meet last weekend. The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times. At that meet I had proof that further improvement IS EXPECTED. Because it is happening.

Just Do Your Job.

That swim meet last weekend was 6 hard months in the making. There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks. She had to make sacrifices and step away from her commitment to a local theater program. I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming. Parenting is about making tough choices. She’ll be at all the rest of the theater practices. She had to KNOW she could get through this meet.

This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived. You see there is never a moment when you are not waiting for the other shoe to drop, right on your head. So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend. I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book. But, I know that is not meant to be. Not right now.

For now, at this point my life, weekends are about putting out the fires that creep into the world all week. It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard. But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up. There is always going to be a fire, a battle, an appointment, or a medical drama. ALWAYS.

This weekend, I had dinner with my husband. I took a walk, AND I went to one store for fun. It’s not much, but it’s a start. It’s a process.

The battles rage on.

Vigilance is required. This journey is not for the faint of heart.

But we are establishing support from afar. We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens

And that is how the day began.

Anxiety in full swing before 7 AM. Never a good sign. Especially when the panic attack is coming from your 9 year old.

See, I have a problem with this. And maybe it is where some of my anger comes from. I don’t have a problem with Meghan. I am not upset with her, or her anxiety. I am really just PISSED OFF at the cause of her ceaseless worry. It is against the balance of nature that a nine year old should have to have this much to be concerned about. It is absolutely unnatural that I have to soothe her fears while desperately making sure my words don’t form any type of lie. She is too smart. And her memory is way too good.

Sometimes, on mornings like this one. I have precious little to say. So, I hold her, as my stomach lands somewhere around my ankles, and I have a tremendous desire to (as an online support group friend suggests) lay on the floor and throw a massive fit.

And while she is crying about the huge overgrowth that on her gums where she lost her last tooth. I am trying to convince her that maybe, if we brush like the orthodontist said, it will go away. (“LIAR” I hear my inner voice scream..)

Once, a few months ago, soon after the braces were on and the gums were flaring in the full on overgrowth of Cowden’s Syndrome, the kind orthodontist made a general statement in the room where Meghan and I were. He said he was not familiar with Cowden’s, but (thankfully) he believed Meghan to be carefully caring for her teeth. However, if the overgrowth continued she would need to see an oral surgeon to have her gums cut back.

Yep. He is a nice man. But, he obviously doesn’t know my daughter doesn’t miss a beat. She was all over that comment for weeks on end. We already had her gums cut once in 2008 for an odd thing that grew over her front tooth. She may not have a solid memory of the day… but she remembers enough to know she never EVER wants to do that again.

So, what is a Mom to say, at 7:15 AM when the anxiety is impossible to manage? I need to soothe her AND get her in the car (as the NYC School Bus Strike continues) in the next 15 minutes.

At least she laughed. It’s nice to have a smart kid. One who can respect that there just isn’t anything else for me to say. Some days we have to push on. Even when we are worried and scared. Even when we don’t want to. Even when it’s not fair.

Doesn’t change the fact that she is scared, and I am mad, and the permanence of this whole Cowden’s Syndrome thing really just stinks.

So she got to school and I kissed her and wished her luck on her math test, and she took her aches and pains, and her heavy heart, and her big brave smile, and headed off into school.

They are nice to her there. Really they are. But I cried on the way to my school, just a few minutes away. I am in a rut. I have to get past this anger… for both of our sakes. But lately I just feel mad.

Of course that’s not who you see when you meet us. You don’t see worried, and mad. You see our smiles. See we get life. Both of us do. On different levels of course, but we get it. We know there are so many people who suffer. We know how blessed we are. Our prayer list is endless. But some days we just “keep swimming…” and…(we)

I got the message at about 12:45. Meghan’s school nurse had called. I called her back to hear the familiar voice that I have come to trust tell me that Meghan “didn’t look right.” She was complaining of lights in her eyes. She was “off.” After 5 years in that school, I have received limited phone calls. When they call – I answer. So, with permission I headed out early.

I got my girl home. We sat in the dark room. I rubbed her eyes. She had a bit to eat. Eventually she tarted to perk up…the anxiety had gotten the best of her. All the makings of a migrane at 9. DAMN this syndrome. Leave her ALONE!

And as we wrapped up for the day. Much calmer than when we had started, there was happy chatter of girl things, and talk of sleep overs and normalcy. With a kiss and a smile she headed to bed. God, I love that little girl.

I got in the car to check in on my grandparents. The phone was off the hook. This is an ongoing event, and one we share lots of laughs about. I arrived to find them in their recliners, watching TV. The phone was in Pop‘s pocket – on.

I asked about their night and Pop told me the story of how he “pulled over a mat and snaked the toilet, a little bit at a time.”

“How old are you?” I asked.

He winked and smiled, and told me he forgot.

I guess it didn’t matter because everything was working just fine. But some days I feel like I might as well be 93 and he, 39.

As I drove home I thought about genetics, and environment and all those biology classes I hated in high school. I may not have inherited their PTEN gene, but I grew, and learned, and was taught in their environment. I grew up in a climate of a “can do” attitude. We did… because that is what needed to be done.

Still, at 92 and 93 my grandparents do what needs to be done.

I decided while I did not gain all their good genes, I gained their drive and determination. Their faith,stamina, and hopefully some of their wisdom.

I will get out of this rut. Cowden’s Syndrome will not own us. It will not win. We can do it, and we will.