Reality – tough to swallow

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

wheelchair

It was a purchase made out of necessity, not desire.  It sat in my online shopping cart for 2 months before I hit send last night.  It will arrive some day next week.  It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk.  And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

energy to be normal

My beautiful girl, as you know by now, has suffered with health issues her whole life.  They have ranged in severity, but they have been consistently problematic.  The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce.  The cancer risks associated with our PTEN mutation are real, and documented.  But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies.  The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain?  The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded?  Shame on me.  It’s undoubtedly necessary for her to survive.  Imagine if she thought of all that every day, and all her daily activities?  She would lose that magical smile.  And I don’t want that.

happiness is

The frustration is as palpable as the largest nodule in her neck.  She WANTS to do EVERYTHING the other kids can do.  She wants to run, and play, and participate with them.  She is TIRED of being different.  She is TIRED.

Swimming is a good idea, but it takes so much out of her.  Last night’s practice got in the way of tonight’s. School was tough.  Clammy, hot flashes, uncomfortable.  Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan.  Two became the goal.  This week it was one.  But somehow its worth it, for her to be able to say she is on a team.  To be able to say she swims competitively.  To feel somewhat “normal.”

When she was younger I could hide things from her.  Now she’s just too smart.

When she was younger I could convince her all the kids get tired.  I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now.  Wise beyond her years.  And I have been where she is, and I hated it.  She has it worse, and I know she hates it too.

She can swim – pretty fast.  Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too.  Until the pain in her legs, or her hip, or her knee wipes her out.  Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful.  You bet.  And sad too.  And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long.  Now SHE is extra long – adult sized at 10.  Time for adult sized reality.

swim overcome

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

5 thoughts on “Reality – tough to swallow

  1. I have a presumptive diagnosis of Cowden’s, as I have many of the signs but no detectable PTEN gene mutation. Currently, Prof Eng is analysing my DNA for other mutations known to be associated with CS. Unfortunately, I did develop breast cancer and pre-cancer of the uterus prior to my CS diagnosis. I have a multi-nodular thyroid, but have opted for a ‘watch and wait’ approach instead of surgery.

    Last week,I came across an study titled: PTEN deficiency in mast cells causes a mastocytosis-like proliferative disease that heightens allergic responses and vascular permeability. Although an animal study, this was of interest as I have a long history of food, chemical and drug sensitivities, and during my last surgery I had an adverse reaction to a histamine-releasing drug. I have put a link to the study on my Cowden’s Research board on Pinterest (http://www.pinterest.com/emmeili/cowdens-syndrome-research-genes-skin-mouth-brain-b/). I have also pinned information about mast cell disorders on http://www.pinterest.com/emmeili/health-food-allergysensitivity-resources/. The video: Mastocytosis with Theoharis C. Theoharides is particularly worth viewing. Associated with mast cell disorders are headaches and stomach pain.

    I asked Prof Eng if there was a link between CS and allergies. She was not aware that there was, but commented that she had a couple of patients who were allergic to everything. However, I have noted a few others with CS writing about their allergy problems.

    Kind regards.

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