I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Sunday
Oct252015

Just Keep Swimming

What a whirlwind of a weekend...or, it should have been. My birthday was Friday and after a fiasco last year, when my Lyme doctor "fired" me because I wasn't showing enough improvement (or so he said; I think I wasn't buying enough supplements from him,) I swore I would not make another doctor appointment on my birthday. 

I had two appointments on my birthday. Instead of bringing donuts to my class, I stayed home from work and my husband drove me around to doctors. I canceled/ postponed all birthday plans.

But my experience this year pales in comparison to one FB friend who suddenly lost his 20-something son this weekend. I've been following his postings, as he flew to his son's college. Lying on my bed, reading the outpouring of love flowing through messages for his family, I am filled with such sadness for him. As far as I knew (which was little,) he had a gorgeous, happy, successful family. This was not supposed to happen. For most of us (and perhaps for this friend as well,) this came as a total surprise.

I spoke with another friend this weekend, a PANDAS/Lyme mom. Both of us, as well as many others, have become too accustomed to fighting for our children's lives. I pray that my child grows up, happy, and does not decide to end life, as has been threatened. "I don't want to live anymore" is a way too-common PANDAS refrain. And every month, we see postings of adult Lyme victims who have taken their own lives.

This crazy Lyme experience wasn't supposed to happen either. We were supposed to have healthy, bright children, not kids who would be fighting their way to survive. I only hope that the child of mine who has PANDAS and Lyme can attend college, can master the symptoms and anxieties brought about by these conditions. I do worry at times that he won't make it. 

Meanwhile, other friends cheerfully ran a half-marathon this weekend. Pictures of smiling faces and postings of "Congratulations" highlight their FB walls. They deserve it; they've had their own struggles. Who hasn't?

If I drew a VENN diagram, where characteristics of our lives were contrasted, the unifying trait would be love and the endurance to prevail. None of us are giving up. We're all fighting for something, and with support, we will hopefully all make it.

I've been looking at the four walls of my bedroom for the last three days, but the fall foliage is glorious with its fire-reds and golden yellows; the trees parade their leaves as if rejoicing with pride.

And so our world goes on...a death, a marathon, my own child "disappointed" because I'm sick and not my usual self. He doesn't even remember my real usual self. My real usual self wasn't obsessed with kids taking their medicines on time, with planning for strenuous CSE meetings, with dodging dizziness and fatigue and no longer caring that my bedroom is a mess. My own real self was dancing with my children in my arms, singing, "Shall We Dance?" from The King and I. My own real self loved planning parties and having friends over. My own real self would be bicycling, rollerblading and playing guitar in the same day. 

My real self has grown more serious. What can I say? This is our new reality. Having an ill child will change your world. Being sick and in pain stinks in every way, but my physical pain, as much as I likened it this weekend to pure torture, has been nothing in comparison to the pain of the parents who must bury their child.

I make my gratitude lists. My friends and in-laws will wait to celebrate with me another day. My husband has been taking care of us all, despite being ill himself. My daughter has been happier this year than she has in a very long time. My son is better than he was three years ago. My dog is always happy to see me, even if I left the house for five minutes. (Yeah, he's a little like Dory from Finding Nemo in that way.)

We run our own marathon with PANDAS and Lyme. Many of us parents of chronically ill children are suffering from stress and weakened immune systems. Our journeys might not end with with happily-ever-afters. But we're still striving.

"Just keep swimming."

Note: Image borrowed from http://www.olivinthelife.com/uploads/5/3/2/8/53288721/5266301_orig.jpg.

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