JUNE!

It’s June.  It doesn’t feel like it.  At least the weather doesn’t.  It’s cool and rainy.  I guess that’s OK for now – while we are still wrapping up school.

It has been a long week.

I don’t usually leave my blog unattended for so long.  I am behind at writing.  I am behind even further at my reading.  It seems the days just blend together lately.

It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall.  There isn’t much time to be still.

schools out

Well – in another 2 weeks it is!

It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever.  You are grateful for the citizens, and politicians alike that fought relentlessly.  You are thrilled by speed bumps, but you still want that stop sign.  You celebrate with a glass of wine – or two.

crash

It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen.   You are the mother.  You will get by.

It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable.  Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90.  You balance those PT appointments with swimming lessons, all in preparation for the team she will join.  The team she is desperate to swim on successfully, and God willing – pain free.

competition_pools

It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician.  It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face.  And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine.  So, you take a chance and toss the Celebrex to the side.  Hoping maybe, just maybe she can get by without it.

celebrex100mg

It’s June and its raining.  You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain.  Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it.   Celebrex it is.

The war rages – all the months.  The battles are won and lost on a regular basis – but the war looms large.  I don my armor – a large binder of medical facts, bloodwork, and reports.  I gather my inner strength.

It’s June.  Summer vacation is coming, but there will be no camp in our house.  It doesn’t fit in with the schedule.

calendar

Every six months.  Every doctor.  Forever.  Mine, and hers.  Different doctors.  Different times.  Different facilities.

I am getting better at the scheduling.  I have learned to bunch them together.  So, we go in February and again in July.

For Meghan it’s the thyroid first.  That foreboding nemesis.  Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist.  That’s just the last week in June.

Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…

There will be 15 appointments before the 2nd week in July.  That’s if every one goes well.

This is how it has to be.  We have to work, she has school.  We can’t have the appointments all throughout the year, so we must endure them all at once.

It’s June.  I am already tired.  Wrapping up one full time job to focus on another. I feel my anxiety rising.

Getting all my rest.  Gathering my inner strength.  Armed and ready.  Kicking Cowden’s to the curb…

We can… WE WILL!

keep swimming

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