Monthly Archives: February 2017

February Mix: Winter’s Chill and Spring’s Warm Hope

The wind whipped cold around the corner of the bedroom where Certain Man and I sleep. It howled and complained and I could feel the cold that wanted inside around the window by our bed.  Out from our window, I caught the sound of our chimes, (named “Mozart” because of the chords that are able to be distinctly heard in the composer’s scores and had been recreated in these chimes) as they bravely withstood the onslaught.  The silvery notes hung in the darkness on the cold, cold wind and comforted me.

I thought about cold.  I thought about fear.  I thought about darkness and hope and silvery notes on the night air.  I thought about the things that hold us steady and give us joy when it feels as if we are buffeted by unexpected, icy blasts.  I thought about how beautiful the weather had been just a day before, and the daffodils that were nearly six inches high in my yard, and the tulips peaking through the cold ground on the sunny side of the barbecue pit.  Just yesterday I had noticed the crocuses poking through the mulch on the peony row by the front door and thought that they are late this year.  I thought about the incoming Spring.

The second week of February was a tough week for the family unit at Shady Acres.  Monday of that week was spent doing “prep” for a scheduled colonoscopy with our one handicapped individual, BL.  In a delightful surprise, it was way easier than I had anticipated.   Over the years, BL has honed her control issues to a very tight ship, and one of the things that she has controlled in almost unbelievable ways has been her bathroom habits. (As in holding everything until it is a most inopportune time or for someone that she doesn’t like.)  This habit that has been one of the hardest for me to be gracious about (particularly when she is giggling out loud over an “accident” that has me scrambling) actually worked in my favor in this particular situation.  Since she is non-verbal, I trucked her to the bathroom at timely intervals, and she never once made a mess for me to clean up. This gal really does have control!

Another thing that made this prep easier than it would have been with another individual is her ability to down large quantities of liquid with scarcely drawing a breath.  (She will actually chug 12 ounces of Pepsi without stopping for a breath if someone doesn’t intervene.) So getting her to drink her “Go Lightly” mixed into 16 ounces of water?  Piece of cake.  16 more ounces of water?  She was holding her hand out for it.  And 16 more?  Bring it on, she was ready!  Of course, I didn’t allow her to drink it all at once, but it was no problem at all getting her to drink all 48 ounces in an hour.  The second round of prep was likewise finished just as successfully, and we were finally ready for the visit to Milford Hospital’s Day Surgery department.

That day was long and hard.  BL’s veins are difficult and beyond the abilities of even the best phlebotomist.  Precious time was spent (and lost) as tech after tech tried technique after technique with no results, or minimal results at best.  We started at the Day Surgery Department at 7:30 a.m.  The clock on my dash read almost 4 p.m. when we headed home.  Dr. K had come in after completing the colonoscopy with the words, “We’ve got to talk.”  My heart sank as the import of the words settled into my brain.  “Mass, cecum, surgery, cancer and ASAP” swirled around in my brain as he gently tried to impress upon me the importance of his find.  The staff was terrific.   They made an appointment for the surgeon already the next morning, and scheduled two CT scans for yet that day, with and without contrast.  They poked and prodded poor BL until I was past being able to bear it.  Each department was sure that their vein finding prodigy could surely get a viable vein and until they were convinced otherwise, BL had another infiltration, another poke, another cry like a wounded animal.

Along about 3 p.m., I stood by her stretcher over in the Cancer Center, where they had sent us, hoping for a quicker and more efficient finish.  The techs had gone off, looking for supplies and assistance.  It was just her and me in that big, cold room, and she was huddled under a warm blanket that they had brought in for her.  I stroked her wounded arms and rubbed her purple blotches and in the quiet of the room, I started to quietly sing to her.  “Jesus Loves Me,” “Amazing Grace,” and “Be not dismayed.”   She seemed to relax a bit and her face wasn’t as contorted. How I wished that they could just get this over with!

The techs came bustling in, then,  to try on their own one more time.  Linda’s anguished squeal started my tears, even as they exalted that they had gotten it this time!  When the vein blew just as they started to push the contrast for the scan, I was done.  I had stayed with BL for almost the whole day, but now, through my tears, I asked, “When am I allowed to say that it is enough and that you have to call Vascular Medicine down to start the I.V.?”

They looked at me surprised, and said, “Oh, we’ve already called them and someone is on the way down.  Should be here any minute.”

I took a deep breath.  “Okay,” I said, “I’m sorry, but I cannot bear to watch any more.  I will do what I can to help to get her situated, but when it goes to another stick, I am going to excuse myself to the waiting room across the hall.”  They were understanding.  They were kind.  And after a while, they came and got me saying that, after two tries, Vascular Medicine was able to start a suitable thread, they had completed the scan, and that I could take BL home.

I got her bundled up and tucked her into the wheelchair.  I pushed her through the halls of Milford Memorial Hospital, and I wondered what she was thinking.  I had tried to explain as much as I could all day long, as well as when I was doing the prep, but she sat in the huge hospital wheel chair as I pushed her along and she had drawn herself into a small lump, looking miserable and confused.  I spoke quietly to her as I pushed her along the almost deserted halls, cheery words of comfort and hope.  And then I thought about one of her favorite songs, Bob Marley’s “Three Little Birds,” as sung by Elizabeth Mitchell on one of BL’s CDs at home.

“Woke up this morning,” I started to sing quietly, “Smiled at the rising sun.  Three little birds sat by my doorstep . . . ”  I could hear the notes sort of echo off the walls, but no one was in sight, so I kept on.  ” . . .singin’ a sweet song.  A melody pure and true.  Singin’ this is my message for you -ou – ou !”

Now there were a few people moving along the corridors, some of them glancing furtively at this singing spectacle, pushing a blind, handicapped scrap of a woman in a huge wheelchair.

“Singin’ don’t worry,” I warbled on, “about a thing.  ‘Cause every little thing’s gonna be alright.  Singin’ don’t worry, about a thing, ’cause every little thing’s gonna be alright.”  I got some sympathetic looks, and I thought about how embarrassed my kids would be if they were along, but I sang until I got her down to the entrance, where valet parking went to bring my mini van and I loaded her into her seat, buckled her seat belt and took her home to her chair.  She was hungry, and she bore almost a dozen bruises from her ordeal, but she was restive and quiet.

There would be time in the days ahead for me to sing other songs to her, (“God Will Take Care of You,” and “Why Worry When You Can Pray,” and “Whisper a Prayer in the Morning,” and “My Lord Knows the Way Through The Wilderness” and others) but for that moment it seemed like the right thing to be singing at the end of a terrible day, full of bad news, and needles and hard stretchers and cold rooms and great indignities.

Is “every little thing gonna be alright?”  I don’t know.  These days are filled with many unknowns, and I’m not at all sure how things will actually work out.  We are scheduling surgery, checking some other suspicious areas, signing papers, getting clearance, trying to cooperate in every way we can with recommendations and making a concerted effort to make things as normal and as cheerful as possible for both OGA and BL.  And the support and the words of comfort and encouragement have been freely given to and gratefully received by this Delaware Grammy who has been caring for handicapped individuals for over thirty years.

I am sometimes surprised at the people who imply that it’s time for me to quit.  I appreciate the concern, but I’m listening up to my Heavenly Father, talking to my family and doing a lot of praying, and this is not the time to bail.  Nor do I even want to.  We are BL’s “family.”  She has lived with us for over 17 years, and as I checked into her record, I realized that we passed, a LONG time ago, her longest placement before she came home to stay.  And just so no one worries unduly, I would like to say that the Delaware Department of Disabilities has been concerned, supportive, and more than generous in their offers of help.  I am not alone.  We are not alone.  God has a plan.  He loves BL, and He will do what is best.  By His Grace, we want to do our part, but health and healing are, ultimately, up to Him.

And in that, I not only rest, but offer here a sacrifice of grateful praise.

For those of you who would like to listen to Elizabeth Mitchell’s version of “Three Little Birds” you can find it here:

(And if you like Bob Marley’s version better, you can probably access it from that link.)

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Filed under disabilities, Family, Handicapped Adults, Praise, Stories from the Household of CM & CMW

Holy Fire and Human Flailings

Lord Jesus, please hear the heart of Your Handmaiden.

I read this morning in Leviticus 10 of the death of Aaron’s sons, Nadab and Abihu.  As is the case every. single. time. I. read. it, my heart aches for Aaron and his wife and his family.  Here is Aaron, in his mid eighties at least, and his sons — were they reckless youths?  We know they had no children according to the scriptures.

It seems so harsh, Lord Jesus, so final, so – well, so without warning.  I always struggle when I plow my way through this passage and read of a father who “said nothing,” when it happened.  A father who wasn’t allowed the “comfort of mourning,” wasn’t given any time off from his job, all under the thread of death.  “And Aaron . . . obeyed.” (Lev.10:7)

What must he have felt, though, and how could he have dealt with it?  There was no arguing about who had passed the severe judgement, no arguing with this God who had, always had, the final say, the trump card, the final word, supreme power , ultimate authority . . . This morning I feel like this fuzzy, rebel brain is at the very edge of an answer that can help this aching heart.

First of all, Lord Jesus, I do not know the whole of the circumstances that let up to this.  From what it says, the boys, (young men) were duly warned, thoroughly instructed and well aware of what the protocol was.  And because you are GOD (who has the final say, ultimate authority, etc.) what you did was right – and (though I choke when I say this) GOOD.

Father-God, in this whole nitter-natter about “Why?” and seeking to come to acceptance and peace, I feel like I am missing something important.  Something to do with your Holiness.  Something about the God-Fire Purity that is the essence of this “I AM” God, whom I’ve chosen as my God, but whose very essence I do not begin to comprehend. I cannot capture the depth, the intensity, the incomprehensible HOLINESS that is God.  Awesome, Powerful, and Eternal — and yet, You love me like a protective Father; care (infinitely more than I can imagine !) what is going on in my heart and call me to reflect that Holiness with purity.  And it occurs to me that when I offer anything else back to you except “Holy Fire,” it spells DEATH.

But why?  Lord Jesus, Why?

Is it because that what is at the root of the “strange fire” is an attempt to appear right before you, and before those watching?  That is not only prideful and deceitful, but an affront and a contradiction of WHO you are, and WHAT you are.  And this strange fire cannot help but be swallowed up, consumed by the intensity of your Holiness and Purity.  It’s not as much a  judgement call by a Holy God as it is a very natural consequence.  It’s almost like a tiny flame, inching up a glowing wick to a stick of dynamite, assuming he is the victor because he burned the wick all the way to the end. None of us would say it was the dynamite’s fault for totally encompassing and extinguishing the flame.  We would think it ridiculously ostentatious for other flames, looking on to accuse the dynamite of wrong doing, or hasty judgement or of unfeelingly, arbitrarily “making rules” that explode with deafening brilliance and force and destruction and death.

Oh, Holy God, our God!  Passionate and pure and intense and full of fire.  Not because you decide to be, but rather it is because You ARE.  Somehow you decided to use poor, wretched humans to reflect your perfect Holiness — elevating us to sons and daughters (Family!) and we accuse you of being unfeeling or unfair when we fall victims of our own foolish, selfish, and prideful plans that cannot begin to stand before you- Glorious, Awesome, Righteous, Burning Holiness and Purity.

And it is just that, Heavenly Father.  I cannot stand before you, pretending to have any fire that matters to you at all.  I feel exposed, weak and useless in my wretched reasoning and the offerings I bring.  I want to cower in the darkness, away from your throne, wondering what to do next.  But I hear words of hope, ringing in this head that I want to cover.

“For we have not an high priest that cannot be touched by the feelings of our infirmities . . .  in all points, tempted like as we are . . . ”

Ah, Lord Jesus!  My Brother, My Redeemer!  The one whose fire is the only fire I can offer back to the Father – I eagerly and frantically and deliberately and with nothing to repay you, choose you!

The fear melts away, the bitterness running off my heart in rivulets as You become Righteousness in me; rekindling the Only Fire that is acceptable to God The Father.

And my heart gives grateful, humble praise.

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