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


Parallel Worlds: College time

I have a good friend whose main concern right now is determining the college her daughter will attend. Will College "A" give her the education she needs in order to acquire a job when she gets out? Will College "B" provide her with enough financial support? Will she enjoy living at College "C"? And then, of course, there's that overriding question--will she be accepted by these schools? If she's accepted by all of them, how will she make the choice? If College "A" offers her $20,000, can they bargain with Collegee "B" to give the same grant? Will she end up owing more money than she can make in 20 years of working? Will her parents, my friends, foot the bill? And if so, when will they be able to retire?

Meanwhile, I'm attempting to determine the best medical treatment plan for my teenager. Do we try IV antibiotics? If so, can my child get off of them by summertime so that he can swim at the beach? What are the complications of using a port vs. a PICC line? Who will insert it and will insurance cover this? Will the new neurologist we just saw ($$$) prescribe IVIG? Or will he require yet more tests? Are my son's immune scores rising or falling? 

For my friends, as for anyone, having a child accepted into college is significant. Their child has lettered in sports, played a musical instrument, received high grades. This child is healthy and has never experienced anything severely medical. That's normal, right? But this college experience is a first and it's tension-inducing and my friends have a right to vent. It's just a good thing that people cannot always read my mind.

My child, on the other hand, is sick. He has not been able to run with the football team for years, to join track this year or the soccer team. My brilliant child has trouble thinking because of brain fog from Lyme. He can't even attend school. 

If your child is ill, what do you say when you attend a party and someone asks you, "Does your child participate in sports? How does your child enjoy school?"

This is small-talk--conversation bent on forming connections between parents emerging from separate worlds who have nothing other than a child in common.

Do you answer with, "My child is horribly ill, has been hospitalized because of Lyme Disease--do you know that it can be transmitted congenitally, even sexually? Yes, that is shocking, isn't it? It's a spirochete, much like syphilis is...."

Ahh, such perfect dinner party conversation.

Or, "My child has PANDAS. Let me spell that our for you. P for.... And she's flaring. She's so immune compromised right now that she's on her third cold in a month and that results in increased tics and OCD and major separation anxiety...in fact, I was lucky to get out tonight. Yes, she's 18. And usually, I have no life." 

Way to pick up the party, yeah!

No, we can't share much. So we listen. And hear about the successes that normal kids enjoy. The colleges visited, the application process, the guidance counselors who show support. We don't mention the multitude of doctors and therapists and the hundreds of tests that our children must take (because they're blood tests.)

The question remains...what about our children's dreams? I cannot yet imagine my child leaving for college. He doesnt' even know what pills he takes, nor is he interested. When he's ill, he has difficulty managing stress. If he stays on a pass/fail system in high school, he won't be able to apply to a regular college but will be forced to attend a community college first. Which isn't a bad idea, as it would give him more freedom to grow, to treat, to improve and to live at home. 

Admittedly, when I was applying for colleges many years ago, the state school was my back-up. Community colleges weren't even in the picture. I applied early decision to a good school and stayed there until my parents' divorce forced me to a less expensive school. And guess what? The state school was stellar.

Snobbery will get me nowhere when it comes to my kids' educations. We will need to re-assess their dreams and needs as we progress. I'm not alone in this. For every friend whose kids are looking to leave home for college, I have yet another friend who has a child unable to attend at this time because of a medical disease. We want our children to have successful futures and happiness, as well as a fun job with health insurance someday. 

Fact: There are more good colleges and universities than there are good PANDAS/PANS and Lyme doctors.

Fact: It's as difficult to acquire an initial appointment with good PANDAS and Lyme doctors as it is to get accepted to a good university. Maybe even harder. 

Fact: It can be more challenging to find a treatment plan that works than it is to declare a major.

Fact: There's probably more financial aid for schools than there is for medical needs.

Fact: I can't brag about my son and our medical challenges the way my friends can brag about their kids. 

Fact: I must listen to friends as they stress about healthy, normal life events. Because if I can't listen, I won't be reciprocating. And they won't want me as a friend anymore. I like these friends. I want to be there for them. But I can't help comparing the enviable place their child is in with the unenviable place mine is in.

Fact: There are thousands of parents and children whose first priority is to deal with medical illnesses and for whom college will not be as integral in the near future.

Fact: My child might not go to college. Whereas he once wanted to be a scientist, school has become a breeding ground for anxiety and brain foggy-perceived failures (he's actually doing OK.) He has it set into his mind that if he cannot graduate in four years with his peers, that he will drop out of school. He has also determined that his band will become famous and successful and so he won't need college. I tell him he needs at least a business degree because too many musicians lose money to their managers. But he's a teenager, albeit an unhealthy one. He doesn't want to listen to Mama.

Fact: We have no money saved up for our children's colleges. All of our money has gone to treating the medical issues which plague each member of our family. There's a lot of love in our family but that doesn't pay the bills. 

Fact: My children would probably fare better when applying to college if they keep a blog or write a book about their experiences with Lyme Disease but they're Lyme'd out and want nothing to do with it. They won't write music about Lyme either, at this time. Teenagers.

So, our parallel lives continue. Our hidden one of dealing daily with medical woe is no less as stress-filled as the ones that are typical. Imagine. I once thought my parents' divorce and my subsequent transferring of schools was the worst ordeal ever. At 19, I had no idea what it would be like to have a sick child. But the ordeals of long ago have given me the strength to deal with the challenges today. I know that whatever the future brings, I'll have friends there to tell me that I'm not alone. Especially when I'm still working to pay off the loans we took out to cover our medical costs!

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