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


the life of a bird

who does not love so much

that it hurts






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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


That Thing with Feathers

"Hope is a garden
Of seeds sown with tears,
Planted with love
Amidst present fears."

--Mattie J.T. Stepanek

My son is back in his bed tonight. We finally rolled up the sleeping bag that greedily stretched all over the floor of my room. Phew.

Phew? My 11 year old has claimed to have walked out of the house at night when he can't sleep. For real? Just in case, my husband places tape on the doors. So far, the tape has not been broken. Just in case, I've been leaning the plastic child/dog gates across the stairs. So far, the gates have not been moved. 

Our little guy was in such a great mood this afternoon and evening that I found myself tensing up, expecting the "break" to come any moment. And then, I thought, I wonder if this is how abused people feel--waiting for their partner or parent to suddenly snap.

Snap he did, when I was on a [rare] phone call with a dear friend while folding laundry (always multi-tasking. Guilt decreaser and Time increaser.) Thump, POUND, thump, POUND on my door. I opened it to find him making faces. Tic-ing mouth, stretching wide. Eyes jerking with anger and out-of-controlness.

Still on the phone, I pushed him away from my room and extricated my arm from his grabbing hands. I closed my daughter's bedroom door, then shut my door again. And continued talking with my friend while he threw the plastic gate down the stairs, terrifying the poor dog. 

Now sometimes this has not worked out so well. There was the time he climbed out of his 2nd floor window. Now his dresser stands in front of that window. Kinda weird to walk into a room and see a dresser in front of a window--one visitor actually moved it away--but our entire situation is out of the norm. So, what the hey.

Tonight, somehow, he calmed himself back down--a first--and 40 minutes later, after reading with my daughter, I found myself cuddling my son and reading to him as well. I introduced Mattie J.T. Stepanek's Hope Through Heartsongs to a very sick 11 year old in dire need of hope. Who better to give hope than another child who understood suffering and was able to turn it into poetry? 

I read aloud the introduction, which talks about listening for your Heartsong, your meaning in life. And I asked my little guy what his Heartsong is. He said that it is to persevere, to get better. My boy is fighting. My precious fighter.

Mattie writes that sometimes we lose sight of our Heartsong and need to "borrow" from someone else. I reminded my son that when he was four years old, he had a Heartsong. He wanted to be an animal scientist. I wondered aloud what he might do when he is recovered. How he will happily live his life.

I also think about the kind of person Mattie J.T. Stepanek must have been--kind-hearted, wordly in a close-knit family type of way and word-wise. And he was a boy himself. He died right before reaching his 14th birthday.

Yesterday, after a dreadful, lowest-of-the-low mornings, I spoke with two amazing moms who have been battling the Lyme monster that threatens their children. They are seeing results--recoveries. Slow. Painful. And now their daughters have come far. Both women have used many different methods, from traditional Western Medicine to homeopathic and/or integrative. Both women shared hope and strength. I think I caught some of their Heartsongs. I know I caught some of their hope.

When we're in the midst of the madness, it's sometimes difficult to remember that some children do recover from PANS, PANDAS, Lyme. My son may never again be "perfect." But perhaps his imperfections will help him create something even more special within himself. And I pray that my daughter gains more strength than hurt from this as well. As for me, I've had so many Heartsongs that it's hard to follow them all. But I am learning how to hold onto my hope, my trust in something as invisible as these diseases.

“Where there's hope, there's life. It fills us with fresh courage and makes us strong again.”--Anne Frank

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