I am a Lyme Mom. I am a Lyme victim by proxy. I am a Lyme activist. And, contrary to what some have said, I hate it.

No one ever asked me if it was okay with me that my daughter was going to suffer through years of misery, pain, and loss.
No one ever asked me if I wanted to change my title from working mom to caregiver mom, if I had an extra $50K sitting around, or if I wanted to spend hundreds upon hundreds of hours searching for answers and assistance that doctors couldn’t give us.
No one ever asked me if I would like to take up arms, join the battle, and share what I’ve learned or our experiences with others.

But you know as well as I do, you don’t always get what you want.

And that’s okay, because we all still have a choice in how we react when things don’t go our way or we don’t like our situation. Are there days I want to hide my head in the sand and pretend that it will all just go away? Sure! Are there days I want to march into the CDC offices and demand answers? Absolutely. There are days I pray that I don’t run into anyone who asks about Jenna because I’m already on the verge of tears and really can’t tell them the way it truly is without losing it. There are also many days when I just try to get through, make sure Jenna gets what she needs, that my husband and son are cared for, and thank God when bedtime rolls around.

Lori, the Lyme Activist, was on a roll the other night, when Jenna told me that she was so tired of our life being controlled by Lyme. I stopped writing instantly and thought, “She’s right.” There are days we talk Lyme nearly all day — symptoms,treatments,benefits of taking a break from treatments,downfalls of removing her power port,how to spread the word so that others don’t have to deal with this nightmare. When your life has been ruled by a disease for so long, it’s hard not to become one of those crazy Lyme people who remind complete strangers to check for ticks.

But, as tired and frustrated, angry and upset that I get, I’m not going to back down from this fight. I am compelled to share our story and the stories of others so that Lyme disease gets the attention it deserves. To not share the stories (good or bad), to not honor the dedication of other sufferers and their families for all they’ve been through, to not recognize the activists, researchers, and doctors who have put everything on on the line, would negate the incredible service they provide. Jenna often tells me that she’s glad that she was the one who got infected with Lyme disease, so that her experience can help other people. I wish I could find the “HAPPY in the crappy” like she does. But, I WILL continue to answer questions that come my way, post stories, and share information based on my experience and research so that others might avoid suffering. And even though I can’t fight this disease for Jenna, I will be there for her, to help her win this battle and the others to come. Because I am a Lyme Mom.


3 Responses so far »

  1. 1

    Janice said,

    Amen Lori “Lyme Mom” …
    Add to all of that…

    “I need to learn to IGNORE IGNORANCE!!”
    Hugs to you girls..from a girl who just happens to know where you are coming from…and going..

  2. 2

    Again, I’m crying. Because the last thing you need is someone judging you, which sounds like what may have happened. Really, how DARE they? And dare I say, “Let them walk a mile in your shoes!” Then, perhaps, they will have a better idea of what you are going through and how much EASIER it would be to just close the blinds and suffer through it alone. But, we know that Jenna, and you, are not the kind of people to let this happen to others, and so, I say — BELIEVE IN EVERY WORD AND EVERY STORY AND EVERY WARNING YOU GIVE. Lyme Disease is the evil monster it is today because it was allowed to ferment in the silence of the establishment. And for those people who choose to ignore your warnings? I say, “But for the Grace of God, go I.” For you, remember! God chooses people to fight certain battles for a reason — because you guys continue to STAND FIRM in the truth, undeterred by others’ ignorance and judgment.

    (The other) Janice

  3. 3

    I can only sympothize with your situation as I too am a Lyme Mom. My daughter, just 5 is fighting Lyme that is robbin gher of her sight as well as creating other issues. It isn’t easy any day but we must continue to fight for and with our children. Hang in there, we need you and other who do speak out. God bless you and Jenna.

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