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
Sep162012

A New Day

"It's a new dawn

It's a new day

It's a new life

For me" -- Michael Buble

It's Erev Rosh Hashanah (Rosh Hashanah eve.) I've made a celebratory meal of matza ball soup, roast chicken, candied carrots, sweet potatoes, berries, apples, honey and challah and I'm feeling good, that is, like a good Jewish wife and mom. I usually leave dinner to the better cook in the house--my husband. But I often orchestrate the holiday meals. This dinner has taken a lot of effort, especially since I whipped up most of it after my daughter's afternoon soccer game (they won!) And no, I did not put spinach in the cherry pie. Or anywhere, for that matter.

September is always a starting-over point for me. As a student who kept going back for more and now as a teacher, September remains the start of the calendar. It corresponds with the beginning of the Jewish calendar. And it evokes the calendar in my mind, which appears as an infinite oval, with the months spaced next to one another in different colors like gameboard pieces.

I have hope for this year. I think we have finally motored through the stages of grief. It began with denial, "This isn't happening to my baby!" It moved onto anger--at one another, at the doctors who threw up their hands in frustation, at G-d who could let this happen to an innocent child (and let the Holocaust happen to millions of children and adults.)

I think our bargaining was in the form of searching for diagnoses and cures...if we figure out what's going on, then can't we figure out a way to make everything OK? And my bargaining: I no longer believed in a higher power. After all, how could some powerful being allow so much suffering? I wasn't brought up to believe in devils or hell. Life began to take a hellish flavor. I already had doubts. What kind of G-d would allow the Holocaust? The murders in Rwanda? and elsewhere? But when my son was terribly ill from the Lyme and PANS, I automatically prayed.

The 4th stage of grief is depression, but that was here all along--my son had enough for all of us. We did everything to fight the depression. I remember crying through a 30 mile bike ride once, thinking that by mile 15, the tears would go away. Some of this was caused by doctors not believing us, or blaming us, as parents. And some of this was pure sadness over the fact that my baby was so sick and that I could do nothing to save him. On top of that, his illness was affecting my other small child and for a short period of time, our marriage. 

And finally, we are at the stage of acceptance. My boy is sick. He has Lyme Disease and PANS. He has probably had Lyme since he was at least two years old. His PANS (PANDAS or PITANDS--who knows) onset came when he was about to turn 9.

We get our son now. We know how to calm him when he's in angst, how to help him, how to ask doctors for help. My husband and I are partners, each taking over for the other in times of stress, each carrying the burdens of the day. I've never known of a man who does so much, cares for his family in such a way.

We cannot go back in time. We don't live in a fantasy book that includes time travel. I can't save him from what, perhaps, was meant to happen, if there indeed is a great plan. Conversely, I can't save him from something that should never have happened. We can only live in the today. And today, my boy has a medical disease and a medical diagnosis. 

Today, my boy gave me a hug and thanked me for making a great matza ball soup.

Today is a good day. It's about 4 weeks post IVIG--not even--and his tics have greatly decreased. His odd OCD moments still abound; he still must use a plastic spoon unless there aren't any, in which case he'll settle for metal. He's raging every night but the rages are smaller and his awareness of his own self is growing. So he's able to tell me, "I feel weird," or "I came inside because I felt a rage coming on." And we can put on the TV, which helps, or hold him, or scratch his every-itchy back. Or go for lemon-water, epsom salt baths, activated charcoal.

Today is a good day. We have a team of doctors in whom we trust. Dr. Trifiletti, PANDAS neurologist. Dr. Bouboulis, PANDAS immunologist. Dr. Charles Ray Jones, Lyme Literate pediatrician, Dr. Bransfield, Lyme Literate psychiatrist. (See the Resource page for links.) We have begun antibiotics once again. We might add cognitive meds. 

My husband and I are extremely happy with our son's schools. His guidance counselor and his teachers are genuine, caring and professional. Our son is HAPPY to go to school for once. He says he likes all of his teachers! I was so worried about him starting middle school, but it is the best possible place for him. If and when he falls apart, this school will be able to work with him, I believe.

For now, he's able to do some homework--yay! He's able to THINK. His processing is slow--far slower than where it should be, slower than it was when he was a little guy, but he is learning. He understands math that gave him trouble just a few months ago. His vocabulary is better than it was a month ago (again, the IVIG.) This kid will go places when we get him fixed up.

As for his sister, she is achieving in her own activities and interests--she has many passions--and we won't let her fall off this year. Last year, homework was sloppy. We had no energy to demand more. We were fortunate in finding a not-quite-teenager to tutor her in math (because me, the teacher, according to my daughter, wasn't good enough to help her!) And this began a wonderful friendship between the two girls, as well as getting her out of the house--so crucial last year. This year, the motto is to succeed despite the challenges. 

I'm tired constantly. Having hope and handling everything doesn't preclude me from fatigue. This was an especially difficult week. From my son breaking his arm to my root canal the following day, to our two-hour-each-way trek to an LLMD to my son's back-to-school-night and a subsequent meeting with his teachers, to evening soccer practices, evening football practices (despite my son's broken arm--which was not injured from football but from colliding with an 8 year old on a bicycle,) to teaching every day and dealing with mild behavior explosions at night...way too many doctors and the ER visit...I guess I have a right to lie in bed all weekend with a good book. I haven't bicycled in a few weeks and I'm too tired to miss it. But I don't have time to lie around.

Our challenges have not dissipated. From past experience, I know that my son will not remain at this halfway point of a good place. The tides will sweep back out. This time, we need to refrain from being tossed and carried along with these tides. We need to burrow our feet into the sand and stand firm.

That's my goal for us this year. Stability. Recovery. Hope. 

I don't look for miracles, just for incremental changes. And we are going to get there. We can choose to wallow in the anger and depression of grief, or to plod on forward. We choose to plod. And if G-d is truly somewhere out there and listening, please note that we are helping ourselves.

 

 

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