Yesterday it Poured

As a general rule, I love rain.  Especially on days when I can curl up in my chair and read, guilt free.

Yesterday was not one of those days.

Let me preface this a bit by saying I have always hated raincoats and umbrellas.  I was always that gal doing the Gene Kelly impersonation, dancing through puddles with glee while snickering at all the people trying to stay dry with umbrellas that turned into sails.  I would laugh while looking out my window on campus at UMass at all the umbrella carcasses left by the poor fools who hoped they would stay dry and found out wrong.

Yesterday I had to work.  About 5 minutes before I had to go out the door, the heavens opened.  It was raining harder than I've seen it in ages.

My darling husband says to me, "wait, where's the umbrella"?  And foolishly, I opened the drawer and pulled it out.  

I open the umbrella, grab my purse and lunch bag and try to go out the door.  No good, the umbrella is too wide.  Dearest husband grabs the umbrella, opens the door, fits it out sideways and hands it to me.  Delightful.  I, now protected from the deluge with my umbrella, tiptoe to my car because, of course, I had decided to wear my new, adorable, blue leather flats.

I get to my car, open the door, throw my stuff in the passenger seat and now I am sitting in the driver's seat with my arm out the door, holding the open umbrella.  Rain is now being driven into the car from my open door and I realize I have absolutely no idea how to close the umbrella.  Water is now pouring down my arm as well as into my seat as I struggle with the mechanics of closing the umbrella.  I must have been loud, (though who knew over the sound of driving rain anyone could possibly hear me) because the next thing I know, my beloved husband is at the door, he grabs the umbrella telling me I sound like a crazy person and closes the umbrella, and walks away with it!

So, I close my door, trying to wring out my shirt and open the passenger side window at the same time so I can yell to him that I'll need the umbrella to get into my office!  So back he comes, opens the door, throws the umbrella in the car and leaves again.  Apparently, he still thinks I am being crazy.

Ok, so, I am a little on the damp side, no worries.  I start the car and head to work.  I can't make my morning phone calls because the rain is just that loud, put my wipers on ludicrous speed and drive.   As I adjust the defrost to try to clear the window, it turns out only one setting will do and it is somewhere around 110 degrees.  The perfect temperature when it is hot, humid and you are soaking wet.  Pretty sure some of the condensation on the windows at that point was from the steam now coming off my wet clothes.

Get to work, parking is scarce, pull into a spot, glare at the umbrella and said screw you to it.  Opened my door to get out of the car and land up to my calves in a puddle.  In my new, very cute shoes with my ankle length skirt.

Pretty sure I looked like this all day.

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Not normal

I have spent time every day for our entire homeschooling career on a message board that I love.  It has been a haven for me and I've made friends there, people I have never met in real life, but that I "know" and care about anyway.  But lately it's been strange. I feel distant and estranged from my "imaginary friends".  I can no longer relate to anyone there the way I used to do.  I can no longer chime in on posts about teenage behavior, sleep patterns, all the minutia that is part of everyone else's life.  Because our life is not normal.  Our goals are no longer the same.

Goals I used to have for my daughter, graduating, going to college, becoming the nurse she's wanted to be since she was five years old,  moving up and out in the world I no longer entertain.  Because our life is not normal.

I know I am not alone, that there are many parents of chronically ill kids, but I feel alone. And if this is how I am feeling, how much worse is it for my daughter? 
Life derailed.

Her life, our lives, revolve around pill schedules, iv medications, doctor appointments, sleepless nights, pain-filled days, exhaustion, anxiety, and heartache. And there seems to be no end to it, no timeline, no encouragement, no improvement. 

We are 11 months into treatment.  On one protocol, she had one good month, a month during which she felt almost normal and she was looking at getting her GED and going to college, she was excited and happy, all of which made the ensuing months into decline again that much more heartbreaking.

Last year, on her 18th birthday, she got a port put in for delivery of iv medications. Her 19th birthday is next month and her life remains at a standstill.

At the risk of sounding childlike, it's just not fair. It sucks and it is not normal, not the right way of things.

She goes to one of the finest doctors in the field but I am starting to second guess everything.  He was our only hope, we trust him and he believes in her but why, why isn't she better?   I wish I knew for certain that we were doing the right thing.  If I feel so helpless, how much worse it it for her? 

It's been really hard on our youngest as well.  It can be difficult around here at times.  Although she was also ill and still has some lingering symptoms, her life is moving on.  She gets her braces off next week and she is going to high school in the fall and I have such high hopes and dreams for her.  Maybe because, with her, I am allowed to have goals and dreams?  She wants to work and travel the world and I want to see her do it all.

I am sitting here typing, broken, crying, hopeless, and I'm not even the one who is sick, so how much worse is it for my beautiful firstborn? I want, I need, to be strong, to be encouraging, to keep her going, to raise her up, to help her fight, to keep going.  Because it's my right, my privilege, my honor, to do so, even when it hurts.

My darling daughter, this one is for you.  Hang in there.  I love you. 
In case the video isn't there for some of you, it is here. Perfect

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Happy New Year!

“In this new year, may you have a deep understanding of your true value and worth, an absolute faith in your unlimited potential, peace of mind in the midst of uncertainty, the confidence to let go when you need to, acceptance to replace your resistance, gratitude to open your heart, the strength to meet your challenges, great love to replace your fear, forgiveness and compassion for those who offend you, clear sight to see your best and true path, hope to dispel obscurity, the conviction to make your dreams come true, meaningful and rewarding synchronicities, dear friends who truly know and love you, a childlike trust in the benevolence of the universe, the humility to remain teachable, the wisdom to fully embrace your life exactly as it is, the understanding that every soul has its own course to follow, the discernment to recognize your own unique inner voice of truth, and the courage to learn to be still.”
  ~Janet Rebhan

2014 was a long year and I am not sorry to see it gone.

I have hopes and dreams for the coming year, but I make no resolutions.  It matters not how resolute I am, the things I wish for are not within my own power to change, no matter how resolute I may be about them.

“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.”
  ~William Arthur Ward

Thus, for this year, I am a realist.  And there is nothing wrong with being pragmatic, even while holding on to faith, hopes and dreams.   Because this is life right now.

And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about.”
  ~Haruki Murakami, 

Happy New Year everyone, best wishes for you in 2015.  Oh, and this, because he wrote it first and few have said it better.

“May your coming year be filled with magic and dreams and good madness. I hope you read some fine books and kiss someone who thinks you're wonderful, and don't forget to make some art -- write or draw or build or sing or live as only you can. And I hope, somewhere in the next year, you surprise yourself.”
  ~Neil Gaiman

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I'm trying

 

It's the holiday season.  My very favorite time of the entire year.  Family, friends, joy, gratitude, are words that mean The Holidays to me.

But I am struggling this year.

As we sat last night, three of us, happily ensconced in Agents of Shield, someone was missing.  There were sightings of the fourth one of us.  She would come down for tea, or to grab something she needed, but then she would race back to the comfort and sanctuary of her room.

Then there was a thing while she was in the kitchen and everyone's heart got hurt and it just sucks so badly because no one was at fault.  And everyone was in tears and my heart just hurt. There is no blame but also no way to make it better.

After I fell asleep, I woke to sobbing.  Getting up, going in, knowing there was nothing I could do, nothing I could bring her, not even my presence, just sitting there with her would or could comfort her.  Nothing to provide solace.  And she said to me, "I will try to cry quieter, I am sorry I woke you".  And I went back to my bed, laying there, listening to her softly crying, my heart breaking in a gazillion pieces.

How are we going to have holiday joy when one of us can't even sit in the same room with the rest?  And how do I rationalize that the healthier child deserves to have all the fun and wonder of the holidays without the crushing guilt and heartbreak because the other can't?

Will she be able to go get the tree with us?  Decorate with us?  And if she is able to have a good day, how hard is she going to crash afterwards, and for how long?  Will enough meds bypass the symptoms long enough for her to enjoy the day with us? Will her legs hold her up that day, will her pain abate long enough so that she is able to enjoy tree day?

What about cookie day, a long beloved tradition?  And if she can't go, if she isn't up to it, how much more will the grief of not participating set her back? 

 This minefield we are tiptoeing through is fraught with unknowns.  Currently, we have a new med protocol that we are fighting to get implemented and that hasn't happened before.  It came as a shock that all of a sudden, our primary is balking at the orders of our Lyme doctor, questioning his thought process.   I've emailed, called, and pushed and I will know more today after our trip to the doctor.

But we will try.  We are a family.  Through all of this, we are well and truly blessed, time and time again.   And no matter what, we stick together, all of us, and we will get through this.  There will be windows of joy, moments of festivity, and there will be love and compassion and there will be Christmas, ready or not.

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Thanksgiving

 

“Could it be — no one receives the peace of God without giving thanks to God? Is thankfulness really but the deep, contented breath of peacefulness? Is this why God asks us to give thanks even when things look a failure? When there doesn’t seem much to give thanks for?”
  ~Ann Voskamp

It isn't always easy, that's for certain.  But the truth of the matter is, in all our trials, we are well and truly blessed and I am incredibly thankful.

I am thankful for the warmth of the wood-stove and the winter's worth of wood, in the pile, in the driveway.

I am blessed by the cheery sight and scent of candles flickering and the thoughtfulness of my Mom who bought them for me.

I am thankful, as always, for coffee after a long night and my new-found ability to auto-program the coffeepot.

I am incredibly grateful for my family, my extended family and my church family.  Beyond blessed in our relationships and so deeply thankful for each and every one of them.

 “Lord, behold our family here assembled. We thank You for this place in which we dwell, for the love accorded us this day, for the hope with which we expect the morrow; for the health, the work, the food and the bright skies that make our lives delightful; for our friends in all parts of the earth. Give us courage and gaiety and the quiet mind. Spare us to our friends, soften us to our enemies. Bless us, if it may be, in all our innocent endeavors; if it may not, give us strength to endure that which is to come that we may be brave in peril, constant in tribulation, temperate in wrath and in all changes of fortune and down to the gates of death, loyal and loving to one another. We beseech of you this help and mercy for Christ's sake.”
~ Robert Louis Stevenson

It isn't always simple, remembering to be thankful these days. 

 It is rough when there is no change after months of medication and my daughter spends another sleepless, anxiety-filled night and there is nothing I can do to help.

It is hard when it seems so unfair that she suffers so much and there seems to be no light at the end of the tunnel.

It feels hopeless when all I can do is make more appointments, fill pill boxes, make tea for her and I am unable to comfort her, console her or offer her hope.

It sucks that my 14 year old is in pain, back pain, neck pain, headaches, shaking hands and wrist pain.  And her meds don't seem to be helping either.  Though I am grateful her knees seem to have stopped blowing up and hurting her.

It is insane that I too am now on Lyme meds, I have two sick kids, a home school and a household to run, I do NOT have time to be ill as well.

“

When I thought, "My foot slips," thy steadfast love, O Lord, held me up. When the cares of my heart are many, thy consolations cheer my soul.”

~ Psalm 94:18-19

I am thankful for bags of hand me down clothes and shoes that delight us all.  BOOTS for ME!

I am thankful for packages arriving of Christmas presents I was able to purchase and for the happiness I know they will bring.

I am thankful for my beautiful, new and improved kitchen with all it's storage space. And for my incredible handyman husband who did all the work himself.

I am thankful for crock pots, the greatest invention ever, for giving me peace of mind in the evening because I made dinner in the morning.   I hate the 5pm  "I thawed____, now what?" game.

I am blessed by our furry friends, their loyalty, silliness, love and steadfast companionship.

I am grateful for my Facebook friends, old and new, for keeping us in touch, for being able to share, uplift or laugh together on a daily basis in the virtual world when we can't see each other in the real world.

I am thankful for little silly things that make me happy, like a favorite sweatshirt, email, Amazon Prime, Netflix and books on my Kindle.  

I am thankful for my girls, their attitude, their humor, the gift of just being with them, even when things are difficult for them.

I am blessed that my Mom taught me how to knit so I can make things that make other people happy.

I am well and truly blessed and I am thankful.

 Happy Thanksgiving to one and all.

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