Today I Cried

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I cried today.

A lot.

I hate it when that happens.

It wasn’t the loud sobbing kind of crying.  It was the kind where the tears just run down your cheeks.

And if they’ve been held in there a long time, it’s really, really hard to make them stop.

I cried first when I saw the office, of the Long Island Surgeon, 30 miles, and 2 or more HOURS away from home.  As I approached the room my heart sank and a tear fell.  It was empty.  That’s never a good sign.

Then when I spoke to the less than sensitive receptionist, she said, “The doctor isn’t here today.”  Which I had figured out all by myself.  But, I checked the schedule on my phone to be sure I was right, and I was.  2:30 June 25th.  I left work early.  Rushed to let the dogs out.  Got Meghan. Braved the Belt Parkway.  And, made it in just on time.

“Look,”  I showed her the schedule on my phone.

She was grossly unimpressed and contacted the doctors direct secretary.  She said she called my cell phone on May 18th and left a message.  Clearly the message never got to me, likely the result of a simple dialing error.  I even flashed the less than sensitive one, my voicemail log on my phone.  “See, no call on the 18th.”  She was still unimpressed, and now annoyed as well.

Meghan told me this morning her knee hurt.  I haven’t heard that with regularity in a few weeks.  She told me on the way to the appointment that she was glad to see the doctor today.  She said she feels like her kneecap is shifting again.  This was a primary cause of her preoperative pain.  I could see the swelling.  I just wanted some reassurance.

But, it was not to be.  Because to argue about a phone call would have no real helpful answer, because the bottom line was, there was no doctor.

And the tears just started to fall.  At first I worked to wipe them away.  Then I just let them go.

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I was offered a PA, and initially said no.  Then I asked Meghan.  She said she’d try one.

“The mother asked the patient, and it’s ok to send a PA down,” mocked the less than sensitive one.

YES!  I wanted to scream.  YES!  The MOTHER, asked the PATIENT, because the PATIENT knows her body better than ANYONE.  Her age is irrelevant.  Her experience wins.

So we waited for the PA.

He examined her knee, and spoke about the swelling, which he said was likely due to “irritation.”  REALLY?  I was told her right quad has a good deal of muscle atrophy (something our PT noted BEFORE the surgery,)  and that she should suspend all activities for a week, ice and elevate, and return in 7 days to see the surgeon.  We scheduled for 9:30 AM, so she can miss the second day of camp, only to travel from Long Island to Sloan Kettering for an endocrinology visit, and back home for PT.  (Summer vacation?  Anyone?)

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He saw my tears, and saw a weak, unstable woman.  I know he did.  And for the first time ever I stopped myself from justifying my tears.  I simply told him there were many things involved in my frustration that he did not comprehend.  The end.

I am done apologizing for my feelings.  And I am done trying to explain sometimes, although not often, I cry out of sheer frustration for the madness that is our lives.

And as we got 2 cups of green tea to go, I cried some more.

I cried for the stupidity of mis-dialed numbers, and for the 4 and a half hours of our lives wasted, again.

I cried because no one really cares.  Not really.

I cried as I watched the teen bald from chemo get out of the car.  I shed tears of gratitude that it could always be worse.

I shed tears of sadness, for my girl, growing up too fast.  Advocating for herself.  Standing her ground with doctors.  Because she just shouldn’t have to.  And I cried for the doctors, who are missing out on a valuable opportunity.  They could listen to my young, articulate, “in touch with her body” daughter, and they could learn a lot.  Then I cried in desperation at the reality that they don’t want to.

I cried angry tears for the ones who have no regard for Cowden’s Syndrome.  Those who don’t understand it, so they ignore it.  They skip over it like a child trying to read a story above grade level.  Because they have never seen it, they deem it irrelevant, or unnecessary.  They don’t know that our ENTIRE treatment plan ALWAYS need to be grounded in the reality that there is Cowden’s Syndrome, and nothing is as it seems to be.

I cried about the summer that should be free of, or light on schedules, polluted by these doctor’s appointments.  Necessary to complete in the summer so I can keep my job, and she doesn’t miss too much school.  I thought about the week to come, Monday- Manhattan, Tuesday- Long Island, and PT, Thursday Long Island again, then Manhattan from there, and back to Staten Island for PT.  And the following week, appointments for me Monday and Tuesday, 5 in 2 days.  Meghan on Wednesday, and the dentist… as soon as we can get a Thursday afternoon free.

I cried about HOURS of our lives we will never get back.  Ridiculous trips that take 5 times as long as they should.

I cried because I am wasting her childhood with necessary evils.  And I hate it.  I hate it a lot.

I cried for the isolation and loneliness created by a disease that keeps us both busier than we want to be.

I cried for our friends with this stupid disease and their physical, emotional, medical, family, and life struggles.

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Eventually the tears dried into a scream or two.  My girl had no idea I have those lungs.

And, as we arrived LATE for PT, I breathed a sigh of relief.  Behind the doors of Leaps and Bounds PT, they “get it.”  So Meghan works on getting better, physically and emotionally in a place she feels safe.

I booked PT through the summer.  I had hoped we wouldn’t need to.  Not for any other reason than it adds to a schedule we’d rather not have.  So that “doctorless month”  we’ve been trying to plan for three years isn’t happening this summer.

“I’m over it Meghan.”  I told her as we were driving.   “I’m over the whole Cowden’s Syndrome thing.”

And in her infinite wisdom again, “I guess, but without it I wouldn’t be the person I am.  I’ve learned a lot…”

And the teacher is the student again.

Tomorrow I will have the tears back in their proper place.  Tomorrow.  But this is today’s reality, and sometimes that’s OK too.  Because regardless – we are

BEATING COWDENS!

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8 thoughts on “Today I Cried

  1. You don’t ever have to justify your tears…anyone who reads your words is shedding them too…but no one really knows what you both go through on a daily basis..imagining it is painful and heartbreaking..it’s hard to be strong but you are and you continue to be..Meghan is an amazing kid..but you know that..and my one wish would be for you both to have a dr free summer..and a respite from this everyday struggle…xo

  2. My heart hurts for you. You and Meg but especially you are constantly strained with a juggling act that would be reason for anyone to cry. Doesn’t make it easier but so many people hold you and Felix and Meghan in their hearts, you are all remarkable.
    Always prayers. And lots of love.

  3. This happened to me earlier this year only it was me and not my child. Complete with the 3 hour drive, I was told “oh we want to see you next week.” I said it wasn’t happening–it was my neurosurgeon visit and MRI–they weren’t booked at the same time because the hospital took the liberty of changing the appointment. Anyway in my case, the neurosurgeon came in and talked with me and called early because I as much as demanded it. It is so tiring and exhausting and frustrating. I know what it feels like to think they don’t care. Some don’t but I truly think a lot of them are terrified.
    Cowden’s is complex and a mess up makes for a nasty law suit. I think it’s the problem in most medical care right now–not just us. It doesn’t help when you are the one in the shoes though and I feel for you—I really do. The act of juggling this with one person is bad much less when it’s you and your child(ren). Last week I was asked when I see a doctor for a certain problem and I could not tell her (this was the sick call APN). She looked at me quizzically and it struck me—most people aren’t juggling this much stuff medically and coupled with reactions to having undergone stuff medically traumatizing in the past–it’s too much sometimes. You are human–we all are and so don’t feel bad for the tears. Meghan is an incredible kid–she makes me hopeful my two will be o.k. Thinking of you guys.

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