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A Day in the Life . . .

23 Dec

It was a rough morning. I woke up and as has become my practice of late, rolled over hugging my pillow tight to my chest to offset the ache that is forever present in my heart. I lay there thinking, thinking, thinking. Torn between wanting to find a life for myself and simply wanting to melt into my mattress and quietly fade away.

A phone call from the speech therapist interrupted my musings. Therapy to learn how to control Gracen’s respiration is recommended. Apparently, speaking is far more complicated than the general public, myself included, realizes. As the therapist explained to me, we all control our respiration in order to make our speech smooth. When your breath is either limited or comes out in bursts, your speech is adversely affected. The inability to control respiration will likely result in incompressible speech necessitating the use of a communication device. We can start respiration therapy now or wait until the communication device arrives. I’d prefer to start now but it will depend on Gracen’s availability based upon next semester’s class schedule. Still, I ask probing, unanswerable questions about what we can expect vacillating back and forth in my mind between the bliss of ignorance and the power of knowledge. Can I afford not to know? I envy the days long past where that was not a question I need entertain because the future was simply unknowable – there was no prognosis – dread wasn’t my constant companion.

I drag myself from the comfort of my bed in order to get ready to have lunch with my best friend in Northwest Arkansas. I’m looking forward to seeing her, yet dragging at the same time. I’m constantly tired, morose and melancholy, even as I prepare for enjoyable activities.

I decide to call the funeral home to follow-up on the request to get my daughters’ fingerprints in order to have them made into a necklace for me and a keychain for David. I’d really like to have it for Christmas but decided to look into it far too late to have a reasonable expectation of seeing that happen. I called two weeks ago and never heard back. It’s hard to make calls like this and I’ve not been able to muster the motivation to call back before today.

So I place the call once again and am once again told that a Funeral Director will return my call. Today I get a quick call back informing me that they don’t take fingerprints unless the family requests them and of course, we had not requested them. Even if we had not been busy taking care of Gracen, I would never have thought to make such a request. And my heart is broken yet again. The tears flow freely as David tries to comfort me.

When will I learn not to hope? Everyone thinks hope is such a good thing, but it seems to be my nemesis – setting me up for repeated disappointment I can little afford to endure.

Why does God withhold such a small consolation from a grieving mother? What possible harm could come from being able to wrap my hands around the proof of my daughters existence and their importance in my life?

Do I dare call the funeral home the girls were initially transported to following the accident or am I simply setting myself up for yet another disappointment. I want to hope but am not sure I can endure hearing “No” once again. What to choose, ignorance or knowledge? Bliss or power? Hope or hope deferred?

Where there is hope, there is life, I’m told. Hope grows like a weed, in darkness and drought; tenaciously it grows. I know, I know if I call the funeral home in Anderson, Missouri, they will tell me that, no, they do not have the girls fingerprints and yet my broken heart wants so much for the miraculous to occur. Do I subject myself to more disappointment just to be absolutely sure that there is no hope for a positive response?

So following my lunch out, I send David and Gracen off to see the newest Hunger Games movie and crawl back in bed, pulling my pillow into my chest and curling into a self-protective fetal position instead of wrapping the Christmas gifts I need ready to transport come Wednesday. Not making a decision is in fact choosing to do nothing. By default, at least for now, a phone call won’t be made. And hours later I’m second guessing my decision to refrain from making a decision. At least if I’d called, all the disappointment would be confined to one days time. Well, that’s not strictly true as every day I face the disappointing loss of my daughters and the discouragement of progressive disease follows quickly on its heals.

I’ve learned to anticipate the next blow – it prepares my heart for the inevitable pain that follows much like a boxer who tightens his abs when he sees the next punch coming. It just hurts a little less when the blow lands. So I guess living in a state of hyper awareness is actually good for me. There’s the silver lining, the positive to negate the negative for the choose joy contingent. What’s one more hard day in a string of hard days? As it’s been said by some anonymous source, my track record for surviving bad days is 100% thus far, and that’s pretty good.

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1 Comment

Posted by on December 23, 2015 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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One response to “A Day in the Life . . .

  1. Melanie

    December 23, 2015 at 5:20 pm

    Janet,
    I didn’t get the fingerprint either and it haunts me. I am so very sorry. My heart hurts for you. I wish I could hug you in person but know I am praying for you.

    Like

     

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