Behind Closed Doors

Would you voluntarily let a security camera run 24/7 in your home, to record every conversation, glance, sound? There was a time I would have said, “Never!” but recently I’ve been rethinking that. Can you imagine? Oh, there would be the embarrassing moments, the comment you wish you could take back, the dirty look you hope no one saw, but there would also then be the “proof.” Proof that Jenna has a disability, proof that she still deals with Lyme disease on a daily basis, proof that we’re not just exaggerating.
If I were to tell you that every night for the last two weeks I’ve removed door handles, duct taped my front door closed at several different heights, set a door alarm, and piled noisy items in front of it, you probably would think I’m crazy. But, if my camera were to reveal that Jenna’s Lyme psychosis has been flaring and that she has had several episodes of seizure-induced amnesia every night and tried to “escape” from the home she doesn’t recognize, you might then understand that there is a method to my madness. If I were to tell you that the bubbling almost 19 year old who recently earned her district manager title with Arbonne couldn’t read independently most of yesterday you would be skeptical, especially after she made numerous cold calls the same day, but if my camera were to show you one of the “silent” seizures that leave her in a post stroke-like fog for hours you would get it.
My very first blog entry so many months ago was titled “You Don’t Get it Until You Get It,” and I’ll continue to stand by that, but add to it that until you have a child that gets it, you’ll never get it. I could throw statistics and reports and medical records at you for years, but you won’t get it. You’ll never understand that when you see us out and about in public it’s only a snapshot, a brief moment in time. And yes, we do our absolute best to be “normal” when you see us — in fact, Jenna will go over and above to make sure that you have no idea she’s not well. You can bet that she’ll do her best to not let you see the whole body twitches that she holds in while smiling or that she climbs into the backseat of the car so that the child-safe locks protect her when she has a seizure. It’s what goes on behind closed doors that defines our lives on a daily basis and shapes Jenna’s world as she lives through it.

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I am the Bubble Popper

There are days I hate being a realist…Sometimes I wish I could just let go and sail through life believing that no matter what happens, everything will be okay. Being a realist makes it hard to surrender to my faith, which, in turn, makes me feel guilty. Well, more guilty, because the realist also gets to feel guilty about being the one who pops everyone else’s bubbles. I don’t pop bubbles out of meanness or jealousy and definitely not joy. It’s not a job I relish and certainly not one for which I ever applied.

Sometimes the bubbles I get to pop are quite small and are easily forgotten, others are pretty huge and leave messes behind, no matter how careful I try to be. We have a couple pretty large bubbles growing around here right now…Jen may have an opportunity to live in Italy for over a month this summer. Free. She’s also started working as an Arbonne Consultant to raise funds for the foundation she created for kids with invisible disabilities. I’m working really hard to keep these bubbles cushioned, and trying to figure out out to support them so that they eventually get unbreakable shells. I often fear that Jenna is afraid to let bubbles even begin to form. It’s easier than having them popped and feeling disappointment over and over again.

Yesterday I had to choose between lying and popping a bubble…talk about being stuck between a rock and a hard place. Jen wanted me to agree that she’s had a really good week. I wanted to, but I just couldn’t. You see, she has no recollection of the seizures that render her unconscious or cause the amnesia that have her trying to run away from me. Bless her heart, for her, a good week is one that she gets out of the house for a few hours here and there, that her pain level is manageable, that she is able to read/write/comprehend when she wants to, that she is able to talk on the phone and spend time making plans. A “good” week is all relative when you’re only used to having bad weeks.

Is keeping her grounded in reality fair to her? Should I keep reminding her that right now she’s no where close to being independent? I think deep down she knows it, but she wants so much to be done with this episode in her life and is so incredibly hopeful and determined. I am her mom and I want her to be happy and to see a life beyond the Lyme-colored nightmare that has already stolen so much from her. But, I am her mom and I have to look out for her and keep her safe. So what do you do?

Right now, I’m choosing to be the realist and I pray that someday she’ll forgive me for popping her bubbles. That doesn’t mean I won’t help her try to protect and save some bubbles or even try to form some new ones…After all, I am her mom, and realist or not, my most important job is making sure my kids are happy.

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The Learning Curve and the Lymie Fastball

We’ve all heard those age-old riddles…”Which came first, the chicken or the egg?”…”If a tree falls in the woods and no one is there to hear it, does it make a sound?” Well, I have a new one for you: “If we don’t know how to accurately diagnose and treat a disease, how can we say that we truly cured it?” At this point in time, there is not one definitive or even highly accurate test to diagnose Lyme disease — if there were, then, shouldn’t we be able to use that same test to determine if someone is “cured?” But we can’t. There is not even one widely-accepted foolproof protocol that everyone is directed to use. In fact, it would seem that every doctor has their own idea about how to treat Lyme disease. And every patient has their own set of symptoms and problems – that changes, often and unpredictably.

I want a live medical feed hooked up to Jenna. I know that sounds odd,but I just wish there was a way to record all of her ups and downs throughout a day, like they do for stocks on Wall Street. Then at the end of the day we could look at her numbers and definitively say, “You finished the day strong, despite several early setbacks, and you are expected to remain strong through the end of the week,” or “It was a weak day but hopefully a major influx of meds will speed recovery.”

I’ve talked to so many people who are either dealing with Lyme disease themselves or have a loved one who is suffering. I’ve had to learn not to cringe when I hear of some of the treatments and statements made by doctors — and I’ve had to learn to qualify my opinions with , “Well, I’m not a doctor, but…” One friend was told that 30 days of antibiotic would “cure” the Lyme disease and that any symptoms/issues after that were just a part of the healing process. This same friend looked at me cluelessly when I asked if they had tested for co-infections. One friend has a daughter with pretty severe neurological issues and the only antibiotic their insurance will approve for treatment is Doxycycline, which can’t be taken orally in high enough doses to cross the blood-brain barrier to effectively kill the spirochetes now buried in her brain. So they have to resort to treating the effects of the disease: OCD, rages, insomnia, bone-deep fatigue, and more — often with much stronger meds than what would be used to actually treat the disease.

Detoxing is another huge topic of discussion among Lymies and their loved ones…I could just scream when I hear of people, kids especially, on treatment who are truly clueless about herxes and detoxing – not because they can’t learn about them, but because their doctor or nurse never told them what to expect during treatment and how to manage it. I thank God for other Lymies who have shared their experiences and knowledge with us and helped make our journey a little less rough.

Jenna is continuing to hold off on antibiotic treatment for now and is working to boost her immune system and treat herself with supplements, rifing, and reiki. Am I worried? Sure. I don’t want her to backslide. Should everyone do this? Couldn’t tell you; just know that it was tough call for this lady. It’s been an eye opener as well. My med school bound son and his girlfriend were talking last night about some of the “supplements” Jenna is taking; I had to smile (to myself) when they agreed with my analogy of big pharma to snake oil potion sellers of days gone by. When those potions didn’t do the job, what did people do? Head over to grannie’s for a natural poultice. When did we give up all of our authority to treat ourselves to insurance companies and big pharma?! Learn about Lyme!

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It’s not “What’s in Your Wallet?” – It’s What’s in Your Arsenal That Counts

Despite the rain outside my windows this morning, I’m hoping for another “blue sky day.” That’s the term we’ve adopted from our LLMD for those days when Lyme disease isn’t in charge. I’m still a bit afraid to be too hopeful, because I know from experience just how sneaky this terrible disease can be, but I am.

Jen is beginning to have more “blue sky days” and watching her face light up brings me joy. Seeing her make plans (albeit tentative) thrills me. Even having her argue with me and roll her eyes makes me smile. Because it means that even though she has a long long way to go, she’s winning the war.

Her arsenal these days is a bit more eclectic as this disease has forced us to open our minds and hearts to alternative protocols. I know there are some out there reading this who will think we’ve gone to the dark side, but there are many others asking “What took you so long?” I remember when the term detoxing brought to mind expensive spas with celebrity status…no more. There was a time I would have scoffed at therapies like reiki and rifing…no more. There was also a time when I put my full confidence and trust in mainstream medicine…no more (and this is huge considering my son is pre-med!).

I honestly do believe mainstream medicine saved Jenna’s life. And now, “alternative” medicine is giving it back to her, one day at a time. Essential oils, gluten-free natural foods and supplements, green smoothies, reiki, rifing…we’ll try just about anything. Jen was suffering from daily paralyzing vertigo attacks; since rifing – just one time – she has had only one minor episode in nearly two weeks that responded quickly to medication. Coincidence? I’ve watched her literally float off the table after a reiki session and the feeling of “feeling good” buoys her for days. Mind over matter? Could be. I don’t care if it is or not; it’s working and we’re learning.

Of course, the biggest factor in all of this has been faith. Despite being tested, our faith is deeper and stronger than ever. We know God has gotten us this far and that everything that has happened, good and bad, is because it is in his plan for us, a plan that will unfold when He knows we are ready.

Soon my Lyme Warrior Princess will awake from her slumber and within a fairly short amount of time we’ll know what kind of day is in store. Her arsenal is stocked and her troops ready to rally around her. This war has lasted a long time and many battles have been lost, but Jen will win. And, if the dreary rain this morning means her battle plan calls for lots of naps, I’m ready. We’ll just pray for another “blue sky” day tomorrow, because if there’s one thing we’ve learned over and over and over again, it’s that you have to just take life one day at a time.

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Grieving and Green Beans

I canned 10 quarts of tomatoes yesterday and plan on making homemade salsa today. Thursday brings a quick trip to DC and then laundry on Friday, again. If you had asked me what I’d be doing this particular week a couple years ago, I would have told you that it was going to be a very special week…the week our Jenna would leave for college. But that’s not happening, at least not this year, and probably not next.

Jen’s truly happy for all of her friends who are leaving on their first grand “off to college” adventures this week and next. And admittedly, she’s jealous – after all, she’s planned on attending college since she was old enough to understand what it was. I’m jealous, too, of the whole situation that so many just take for granted…the dorm room shopping, the sorting and packing, the heart-to-hearts and lectures about never going out alone at night and learning to live independently. It’s just not fair, but if there’s one thing I’ve learned over the years, it’s that life isn’t fair. And, yes, I’m whining, enough for both of us, because Jen is incommunicado for awhile, not just because it breaks her heart over and over again to keep up with Facebook posts, but because she’s also having a tough time on the new treatment protocol and getting out of bed without falling is an accomplishment.

Even though we’ve known for at least a year that Jen was going to be on a different track, I think this week has been the toughest for both of us. We knew it was coming and tried to prepare for it, but she’s grieving for a lost dream and I don’t have all the answers. So, we’re keeping busy, as best as we can…can…anyone have any extra green beans??

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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.

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My Unsung Heroes

Amount of time Jenna has received treatment: 14 months
Amount of time Jenna’s health has been affected: Over 5 years
Hours of support given by others: Priceless

When someone you love falls ill, you learn a lot about yourself and others. You can use challenges to strengthen your faith or let it fall by the wayside. You can choose to be grateful or you can choose to avoid dealing with life. I was praying for guidance and in thanksgiving this morning and was reminded of the “unsung heroes” that have supported Jenna and me for so long.

My husband, Chris, has been our foundation. Someone asked me once why he didn’t go to Jenna’s appointments. To put it simply, he works. He works so that we have health insurance, so that I can take care of Jenna, so that we can afford groceries. What many don’t know though, is that he works through excruciating pain…several doctors have told him that he needs a complete hip replacement but that they don’t want to do the procedure for at least another five years. So he deals with the pain the best he can and works for all of us.

If Chris is the foundation, then my son Joe is the stone wall built upon that foundation. It’s not easy being the brother who isn’t sick, but bless his heart, he’s been there every step of the way for all of us. He picks up where Chris or I can’t, takes care of himself, and is always looking out for Jenna and me. “What can I do to help, Mom?” Sometimes that simple phrase brings tears. He’s a good man and he could just as easily have made the choice to pull away, to live his own life the way he wanted, but instead he has chosen to stay close and to help take care of all of us…I’m so proud of him and know that some day a lucky girl is going to realize just how much you can tell about a man by the way he cares for his family.

My mother. I don’t even know where to begin. She supports us in so many ways. Mom has the shoulders we know we can cry on, the ears that hear what we’re not saying, the words to boost us and a heart of gold. She has shared so much of herself and we know that we’d be lost without her. Mom has the power to take the foundation and walls and turn them from a house into a home filled with love and support.

My sisters and their families. Chris’ family. Our community of friends and my Facebook Support group. Jenna’s LLMD and his staff, our local family doctor, and others. Others who have shown kindness and compassion, understanding and acceptance, not just toward Jenna, but towards all of us – because we’re a team fighting to do what needs to be done. Without all of them, I know, in my heart, that we never could have made it this far. So today, just like every day before it, I gave special thanks to God for my unsung heroes because we would be lost without them.

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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.

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A Mother’s Nightmare

I’ve been holding my breath for hours now, waiting to see what will happen/not happen as a result of Jenna’s blog post yesterday afternoon. It took a lot of courage for her to lay it all out for people, not knowing what their reaction would be. Most who read it probably won’t react…it’s easier to say nothing and avoid the subject, or easier yet, just start avoiding Jenna. Of course, there will be some who think she made it up or that she’s only doing it for the attention. Seriously. We’re still dealing with some of that ignorance. She could have kept it all secret, but that’s not our Jenna…she’s determined to show people just how insidiously Lyme disease can take over one’s life in the hope that they will become more aware, more careful, and more compassionate.

Jenna’s been dealing with post-seizure amnesia for a while now. We work through it and usually she comes around pretty quickly when we can find a trigger that brings her back. Although she sometimes does get frightened when she wakes up confused, this irrational terror that she’s been experiencing lately goes so much deeper. We never really know when it’s going to strike, but it’s most often when Jen’s very tired or overly stressed or feeling really ill. The biggest and scariest difference between then and now, is that now she will act on the terrors. She voluntarily climbs into the backseat and insisted on child safety locks after we talked about how she tries to escape from the car while it’s moving. We’ve worked out a “No locked doors” policy after a few incidents that shook both of us. She’s never home alone or when out and about, more than a few minutes from an adult who understands her condition. You do what you have to do.

I didn’t see Wednesday night’s episode coming. I should have, I guess. Jenna was tired after having treatment in the morning and then going in to school, but she didn’t seem overly stressed or to feel that much worse than usual. We all sat down to dinner together, Jen helped clear the table, and we talked about making a sinfully rich delicious dessert. That was nixed in exchange for some “spa” stuff since prom is just days away. Around 7:30 I started gathering her night meds and that’s when the first flickers began…the white-outs (black-outs with open eyes that dart and roll back) were followed by some short black-outs that affected her speech and swallowing. I had to keep waking her and reminding her to swallow so that she could get all 30+ pills in before bedtime. Once the pills were in, she seemed a bit better and asked me to bring something out from my bedroom. I had no sooner walked into my room and closed the door when…SLAM…the front door closed. I came out of my room, calling Jenna but she was gone. I looked out the door and saw her at the edge of the yard; I called out to her but knew it was no use because it was obvious that she didn’t recognize me (a mom’s nightmare in itself), so I stepped back in, grabbed my shoes and car keys and watched as she ran down our rocky driveway in her pajamas and stocking feet.

I tried to keep the car back from her until I knew I could catch up to her quickly. She kept looking back at me, so scared, so I stopped the car and ran after her. Finally I was able to lunge and grab her from behind in a bear hug. “Don’t hurt me, don’t hurt me,” she cried, between “Let me go!” and “I don’t know you.” I held on for dear life, and never felt the punches, kicks, and scratches. After a few minutes I just couldn’t stand up anymore and I put us both on the ground, with me laying on top of her, holding her down. At one point, she finally grasped (I think) that I wasn’t going to hurt her, and she started begging me to let her go home. I offered to take her home and she said, “No, then you’ll know where I live and you’ll come back for me.” I tried bringing her out of it with one of our stand-by triggers, her puppy Kara — “No, no” she argued, “That’s what bad people tell little kids when they want to take them.” My husband noticed the car when he returned from visiting with his parents across town and drove down to where we were sitting, now in the dark; his calm voice reassured Jenna and she allowed us to take her home. The “realness” of her experience was still with her though. She told us about the bad lady who kidnapped her, how she had escaped, how she had hurt the lady to get away but felt bad about it. When her legs started hurting more, she insisted that the bad lady had poisoned her. When she wanted to watch Criminal Minds on TV and I suggested something else, she said that it would be good for her to watch it in case she got kidnapped again, because she might learn how she could escape. Panic swept through her off and on for the rest of the night and I just prayed that she wouldn’t remember what happened in the morning.

The reality of it didn’t fully come to light until almost noon the next day…the panic kept squeezing in and she eventually realized that what she thought was a bad dream had indeed happened. Jen apologized over and over, and I reassured her that I was fine and I am. The young lady who ran away from me, fought me, and thought I poisoned her was not my Jenna. It was a Lyme victim. She has no control over when the Lyme victim will take over and so I can’t hold her accountable for her actions when she is under the influence of Lyme. There are more details I could share, but you get the picture. Yes, it was a terrible nightmare and I was an emotional mess. Yes, I hurt – but not for me, for Jenna and for the nightmare she’s been living through that has changed her life forever.

Do daily tick checks and learn about Lyme disease.

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Just When You Start to Believe…

You would think that after everything Jenna and I have been through with this Lyme-colored nightmare, there wouldn’t be much that could shake us. Last night proved both of us wrong. Last night, we were both more scared; Jenna says more than she’s ever been — for me, I was more scared than I’ve been for a long time, but for very different reasons.

It takes an awful lot to scare Jenna…new IV med? Okay. Changing oral meds again? No Problem. Need another five vials of blood? Which arm? Need another picc line? When? Unpredictable, painful symptoms? It’s all good. She’s one tough cookie, even though many people don’t know that she has a soft, gooey filling. Jenna has been receiving IV treatment for over a year now (already four months longer than we anticipated) and we expect that it will go on for at least a couple more months before she switches to an all oral medication protocol that could last years. We had hoped that she would be finished with the IV treatments by now, but the Lyme disease has damaged her brain so deeply, that her seizures are worsening and becoming even more unpredictable and having longer lasting effects.

Over the last couple weeks it’s become increasingly difficult for Jenna and I to go places on our own. I’ve handled the seizures and narcolepsy-like attacks okay up until now, but recently, when she comes out of the fog, it’s not just the loss of speech and amnesia she feels, it’s terror. Terror that she’s in a car with a complete stranger and she has no idea where she’s going; terror that takes over and has her trying to escape by opening the car door while we’re still moving, terror that has her thinking about running away and makes her fight against anyone trying to help her. It’s that kind of terror I see in my daughter’s eyes that breaks my heart and leaves me feeling helpless and completely incompetent. Sometimes it only lasts for a few minutes and doesn’t earn any space in her memory. I thank God for those times she has no memory of an episode.

Last night her post-seizure terror lasted over an hour and I honestly believe that today she was having some post-traumatic stress…almost as if she was in shock. She didn’t say much to me when she first got up this morning, but as the hours passed, she relaxed and relived the episode for me, from her point of view. She remembered everything, because she said it kept replaying in her head all night and then continued to flashback throughout the day. I’ve caught her several times today, upset over remembering how she felt last night.

Imagine waking up from a quick doze and finding that you have no idea where you are, who any of the people are around you, and no way of communicating. Then the strangers, who keep talking to you in a language you can’t process, firmly take your hands and lead you away from where you’re sitting outside, into the dark night, and help you into a car. One of the strangers continues talking to you and touching your face and hands and you feel helpless to do anything about it. Then the stranger drives you away and won’t let go of your hand. You’re frightened and confused, frustrated and upset and so many other feelings that just keep rushing in. Imagine the trauma of being kidnapped by strangers and not being able to communicate…that was Jenna’s experience.

My fears from the experience were different, of course. I had the Mom worries: How can I get her to wake up out of this nightmare? How can I get her to recognize and trust me? How am I going to get her home safely? Did I do/not do something that triggered this? What if, what if, what if…

So, we have Lyme (and it’s buddies, Babs and Bart) to thank for yet another unforgettable experience. One of these days we’ll probably look back and say, “Wow, we really did make it through!” but right now I’m beginning to think that just when you start to believe things can’t get worse, the universe proves to you that it can.

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