Every Little Breath She Doesn’t Take

Jenna stopped breathing last night – three times, for several seconds – but I think it was my heart that stopped. It was the second time this week it’s happened. This is just one of the nasty tricks the bacteria entrenched in her brain likes to play, but this was the worst incident so far. Air hunger. Nothing “wrong”–just the brain and the lungs experiencing a short circuit. Uh huh, yeah right. You watch your child’s eyes open in panic when they gasp and find they suddenly can’t breathe and then tell me nothing is wrong.

It’s been nearly a year since I started this blog to chronicle our experience with Lyme disease from a mom’s point of view. I’d love to be able to brag that soooo much has improved, but I’d be lying. Oh, Jenna is getting better, albeit slowly, too slowly for us. It seems like it’s taking a lifetime. Hers. I can’t even begin to imagine how it feels to be 18, unable to get a driver’s license, unable to work, unable to go away to school, and unable to live your life the way you want. And then, on top of that, feeling like she has to prove or apologize that she’s unable to do whatever because the illness she deals with is mostly invisible. I feel the same pressure at times.

As mom, I walk a fine line between trying to reassure Jenna that God just has a different plan and timeline for her and pushing her to stay as active and engaged as her health will allow. It’s tough and I’ve lost my balance on more than one occasion. I’ve also given in and let her push her limits, which means we both pay for it later…her with misery and me with worry. Should I call 911? How many seconds can she not breathe without it causing damage? When she mentions that she has chest pain should I call for an appointment with a cardiologist? What about all the neurological “stuff” that she deals with intermittently and unpredictably? What justifies a call to the doctor?

Talking to other Lymies and Mama Lymies gives me hope. They share their stories and solutions and it gives me reassurance to know that Jen is not alone in her suffering or her treatment path. My faith and my family and friends help me hold it together when it feels like everything is falling apart. This past week I turned down two job offers and started berating myself because I haven’t worked for over a year and the loss of income combined with the cost of treatment is tough to put it lightly. But then I look at Jenna and remember my promise to her that I would help her through this no matter what and I can’t do that if I’m not with her. So, I’ll just keep chugging along, working when it works out for us and being there for Jenna even on the days when it feels like I can’t keep my head above water, like I can’t catch my breath.


1 Response so far »

  1. 1

    Judy said,

    One only need know Jenna for five minutes to see how much she loves and appreciates her momma:)
    You are a blessing Lori…not just to Jenna…but to all mothers.
    As you are by Jenna’s side each day, we hold you all in our prayers.
    May God grant you strength, peace, and JOY as you persevere and travel this long and winding journey together.

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