MY DAUGHTER BECAME MY NURSE

- AND OTHER WARNINGS FOR THE CHRONICALLY ILL PATIENT

When I was dragged mercilessly into the night by Borrelia burgdorferi, Bartonella and Tickborne Encephalitis Virus, I was left with so much pain and suffering that I could not see past the confines of my own body.

Laying on the couch, a blanket over my head to keep out the blinding daylight, I missed the fact that my son had slept right through his alarm and was late for school.

Barely able to eat myself, I did not realize that my teenagers were eating macaroni and cheese or ramen four nights out of the week. And by month three they were pretty depressed about it.

Chronic Lyme overtakes every ounce of our being and blinds us from much of the world around us. We made grave mistakes, my husband and I. We did so out of survival, but they were mistakes, all the same.

I wish to share them with you, so that you can look around more closely at your home and not repeat those same mistakes.

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Illness sneaks up on us. It starts with a general malaise, but then a couple weeks or months later, we are missing work. We are skipping our kids school events, and going to bed long before the kids are tucked in.

It is only later when we come out of the fog for a spell that we realize just how much we have missed. And just how much our family misses us.

The first few months everyone rallied in my home.

My boys took their sister to school. My daughter took over the barn chores. Daddy cooked dinners. Everyone understands that they must pitch in. It's temporary, after all, they think. Mom will be well soon.

But we aren't well soon.

Finally we get brave enough to ask for help and friends drop off meals.

There is laughter at the dinner table again.

We are not able to join them at the table, but we hear them all talking, giggling and the mood is infinitely lighter.

Oh thank heavens.

For several months meals are brought. A friend even jumps in and helps with some yardwork. Neighbors are picking up our kids and taking them to school. Private school, so there is no bus option. What would we do without our neighbors?

During this time of course, the house is falling apart.

We are too sick to really notice, but our husbands have.

You hear your spouse trying to rally the kids to load and unload the dishwasher, mow the grass, wash their mountain of clothes, and walk the dogs.

"Wait. Kids. Has anyone even been feeding the dogs?" he asks.

I burrow deeper in the blankets, not wanting to hear the answer.

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There were months, many months, when I was unable to even get out of bed.

My husband had to go to work to keep us afloat financially. Our teen boys were at high school.

My daughter goes to a private school where she attends three days of classes and then does classwork/homework the rest of the week. Like college.

So without really thinking about it, she became my personal attendant.

She brought me food if I could eat, and walked me to the bathroom when necessary.

If I was well enough to brave the stairs, she made sure I had a grip on her.

She was my nurse.

"Mama, are you okay?" she would call to me, probably every waking hour.

I bet she loved it when I finally slept.

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It was 18 months into this illness before she finally opened up.

Told us that she deserved a break.

That her best friend was going to the beach for a week and she needed to get out of this house.

God bless her. 18 months.

The beach was amazing, by the way.

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During those months she was more than my nurse though.

She was my best friend.

We began a nightly routine we still do today.

Curling up on

the couch together at the end of the day, we watched Gilmore Girls first.

Then Criminal Minds.

She has a thing for Spencer. lol

I might not have ever learned that if I had been well enough to do mom chores.

So...

Number one, forgive yourself.

For being sick. For not making fancy dinners anymore. For missing the band performance.

Number two, ask for help.

Meal trains, yard work, housecleaning, laundry.

Hire out if you can afford it. Get that nurse even if your budget allows.

And lastly, for the love of God, let that messy house go sometimes.

They will not remember the messy house.

But they will remember Gilmore Girls, and that one time you DID get to the band concert, albeit in your pajamas.