But Your Kids Aren’t THAT Sick, Right?

I’m losing interest in answering this question. Today, I sat at the LLMD with my kids kids. The little guy was spinning on the doc’s chair in between attempts to catapult off the chiropractic table, which I think he likely busted. His Bartonella was RAGING. She is a good sport about the Quantum Healer we are working with. The testing gave her information she couldn’t have gotten from her Western Med world. She’s worried about the Bartonella storm. So am I. She thinks the push to treat the Babs in the little guy is making the Bartonella rage. So, we need to start yet another med.

“So, you kids aren’t that sick. They don’t look that sick.” Every week? At least. It might not be a straight out comment or question. It might be more of an inference, an energy, a touch of body language. But I hear it/imagine it/see it every week.

Anyone ever hear the story of how I took the big one in to the Doctor for years asking about the HUGE lymph nodes in his neck? Dozens of doctors. Lots of lymph nodes, NEVER changing. Always ignored. Always brushed off as “helicopter mom”.

How ’bout the story about the little guy? Age 23 months, when he woke up in the am with a dry diaper. By the time we got him to the ER and the shaky chain smoking nurse tried to catheterize him, he was nearly dead. That was a scary one. They put us in an isolation room, summoned the infectious diseases doctors and quizzed us on how our son could have gotten, “Cat Scratch Fever”. They gave him a hit of IV Ceftin and he came back to life. They released him, didn’t bother to do the test for Bartonella (Cat Scratch Fever) and three years later, with no other treatment, he tested positive on that test they never bothered with. The little bit of IV Ceftin took the fear of death away, but buried the infection into his nervous system. Yeah. Thanks for that.

Let’s go over this for the naysayers. Lyme Disease can kill you. Bartonella is nearly impossible to treat. It is a serious crapshoot. No protocol. Babesia? Fucking nightmare.

Yep. Crabby today. I had my first good cry since my diagnosis. I have lovely Bartonella tears often. Manic tears, random tears. I’ve gotten them on Minocycline, on Zithromax and on several herbs. They are pretty commonplace. I get them when I watch touching movies like, “Fred Claus” (no razzing me). But today, I had my first, “Oh my God. . my kids are really sick, cry.” The kind my mother used to have behind the shower curtain. The kind that makes my kids say, “Mom were you crying?” Bartonella tears are crazy tears, frightening tears, tears my kids are de-sensitized to. These were grief tears. Today I hit places in my heart that I didn’t want to touch.

So, to say it again: My kids are sick. They can play and jump and laugh and fight. They can do Kuk Sool Won, Circus, Boychoir and go to school. And some days, they can’t do much of anything. The little guy comes out of 2 1/2 hours of pre-school ready to kill one of us. Anxiety about missing life nearly destroys the big one. Their immune system function is like that of a kids with AIDS. Not the whole immune system, but the Natural Killer Function. The little guy has tonsils that are the size of walnuts on steroids. White spots reside there. And no, they aren’t those little tonsil stones. Best as we can tell they are unmoving, unrelenting markers of Bartonella. Lovely.

When the kids get bad, the little guy gets angry and aggressive and hard to deal with. The big guy gets extremely moody, anxious and/or completely flattened.

I have tried not to become my illness, but let’s face it. Right now, in truth, it is trying to swallow us whole. One day, the little guy drew a picture of the snake that swallowed our family. That kid has amazing insight. I feel as if this disease has swallowed us whole.

I have two ill children. I watch people bake cakes and go sledding and grocery shop. I can do one thing a day, and that takes all I’ve got. Sure, everybody has their “thing”, everyone has their life challenge, but today, I’m just really sad that mine has to involve these sweet boys.

Adrenal fatigue on the big one. Big. Stress doesn’t help. Pressure from school, not so helpful. Boychoir. Fundraising. Piano lessons. Homework. None of that starts to matter when your kids blood pressure is on the floor. “He can’t be getting enough blood to the brain with that pressure,” the doctor kindly says. And I just cry.

It isn’t that I don’t want to be here. This is where I am. This is our life. This is our truth. This is the challenge we were given to help us to become more fully who we are. But one day I’d like to have the energy to do something trivial. Something meaningless. Something light and full of fluff. I’d like to take my kids sledding. Sleep a night without worrying about whether or not my son will stop breathing because those tonsils block his breath.

So, just in case you haven’t figured it out yet, I’ll answer the question again. My kids are sick. Their illness may be invisible to you but the clinical psychologist, the neuropsych docs, the pediatricians, the Lyme Doctors, the Ear, Nose and Throat specialists? None of them are ignoring me anymore. They see it now. I am no longer the helicopter mom, no longer the mom who has Munchausen by Proxy. I am the mama bear. Fighting for her cubs.

So, I dry my tears. Pick up my tired body and fight. I won’t give up. Not now. Not when the fight has just begun.

The Snake that Swallowed us Whole

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8 responses to “But Your Kids Aren’t THAT Sick, Right?

  1. This has brought me to tears! As I read this it’s as if I could have written it myself about my own 2 boys. I so understand what you are feeling and I have had those cries too many times myself. We try to take it one day at a time so we don’t overwhelm ourselves. But sometimes you are forced to stop and and look at the big picture and it scares the shit out of you! And yes it makes it that much harder when people don’t understand. I feel like we are living this nightmare in our house and none of our family and friends truely know what we are going through. I thank God that I have my lyme support on line or I don’t think I would have made it this far. Every day it’s a struggle to just make it through that day. To take care of 3 chronically ill people, 1 of which is yourself. To watch your children struggle with normal every day tasks like school, homework, sleep, having energy to do what he should be able to do. I applaud you for doing this blog. I really should do this myself and I honestly don’t know where to start. I just wanted to tell you that I am here for you and wish we lived closer so we could fight this together. (HUGS) Amy

  2. Yes, that would be me ….been there, living this, times ten some days…better others….feel pretty numb to all of it some days….completely engulfed by it other days, like the snake eating us….but we ARE Mama bears and we DO go on….fighting, crying, picking ourselves up off the bed or shower floor to fight some more. The crazy thing about it is that we have won in so many ways….we KNOW what is wrong with our children…with ourselves….with our husbands in some cases like mine….with the stupid , ignorant medical community out there….my heart breaks for all those so called “Munchhausin by Proxy” (sorry, don`t know the spelling and dont really care) Mamas out there….the ones that think just *maybe* they ARE going insane….just *maybe* they ARE imagining all this….is it a nightmare and maybe they will wake up from it ??…is it something that they have caused, did wrong, overlooked ??? I was there for WAY too many years watching my seven…yes seven children, my husband and I dieing, slowly, physically, mentally, emotionally…and being told we were just stressed, tired (DUH) ,depressed (DUH again!), not eating well enough, imagining it ..blah, blah, blah….At LEAST I`ve won that battle….I TRY to hang onto that….but then comes all the naysayers…”Chronic Lyme ?? Just take a pill and get on with life….WHY do you always look thru Lyme colored glasses ?? Don`t you WANT your kids to have a normal life ? ….Aren`t you better YET ???… I thought you had treated that already ??? ” blah, blah, blah…..and so we go on. We are Mama bears and we will fight to the death. We WILL survive and I TRUELY beleive it will be US Mama`s that figure it all out one day and prayerfully save future mama`s from ever having to go thru this.

  3. Wow. What a powerful article. I’m so sorry your family has to deal with this. But I wanted to tell you how incredibly lucky your kids are. You refused to settle, and kept looking until you figured out what was wrong with them. You fight to help them get treatment and get better. It sounds like Hell to live through, but when I read storied like this, I thank God for mothers like you. They are blessings, and literal lifesavers for their kids. You (and other Lyme parents) fight through your own pain and sickness to do absolutely everything you can for your kids. You don’t give up.

    So thank you- for this blog, and for what you do for your kids. I hate hearing about children with Lyme, but hearing about parents like you makes it a little easier.

  4. This was a terrific post. Each time you tell more of your story, it gets across to more people, myself included. (That movie, “Under our Skin” (?) also comes to mind – please remind me/us when/how to see it when you can.)
    That quote form Gandhi (?) comes to mind about the experience of those who challenge the establishment orthodoxy. I think it’s something like: Step 1, you’re ignored, called crazy, etc; Step 2, the establishment fights you tooth and nail; Step 3, what you’ve been saying is accepted as self-evident. I love that you all are seeing yourselves as you are, courageous mama bears. Marianne Williamson has been talking lately online about the power of U.S. women to fight with the same power all other mother mammals fight with to protect their children, and including every child on the planet in that. (She uses the phrase “Sister Giant.” Powerful stuff.)

    Anyway, peace, healing, and power to you all. I do hope I can be part of your team, Ms. Jeanne Marie, once I’m less busy. Right now I’m one of 5 “offspring bear” siblings who are fighting for our own 86-year-old parents’ well-being. And we have a relatively easy task compared to many with aging parents. May God bless us, every One!

  5. Thank you for saying the things I can’t say. Saying them would remove the blinders I need to get through this mess…But reading them puts me in touch with a lot I have, knowingly and unknowingly, cut myself off from. You speak for me, another sick Mama Bear, and many others, I’m sure. Love to you and your boys and your husband.

  6. My wife and I are very touched by your blog. My wife has Lyme and Bartonela. She was diagnosed with both in 1996 at the age of 14. We would really like to speak with you through email regarding some of the treatments you have tried. We have two year old twin girls who are fine and Lyme free but as you can imagine they absolutly exhaust my wife and would love to crack her code and get her feeling better. After reading your blog, I must speak with you because you and my wife sound so similar. She is a fighter and I am determined to help her get better. We have access to good doctors who have no idea what to do next. Please, please, please contact me.

    Thanks,

    Mike

    • Hi Mike,

      It is getting late, but I will email you tomorrow. Hang in there. You and my husband might have a lot to talk about as well! Living with a wife with Lyme & Bartonella is no walk in the park.

  7. hmm yes… I know that cry…
    a few steps behind you in the walk
    with a few more kids..
    all together
    it’s still a wash..
    just overwhelming..
    Great post.. transparent and honest… raw, so glad to have found your blog πŸ™‚ (((hugs))) and hope that tomorrow is a better day…

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