Now I Lay Me Down To Sleep

Adjusting to a new normal has become a regular occurrence around here. Four steps backward, one step forward, and a dozen steps sideways makes for an interesting dance on paper and it makes for chaos in real life. I try not to compare myself to others in similar situations, and yes, there are so many who are, but I stink at this some days. I get it, maybe we’d all stink at this, with a few outliers doing worse, so I can feel a little better. But still, I stink at this some days.

I don’t explode as much as I think I’m going to which becomes a win on those days. I haven’t grounded one of my kids from life for a month yet, or left my dog in his cage all day, all in a reaction to my anxiety. I can tell when my patience is out of gas and even know how to step away for a few minutes most of the time.

If only medicine worked the same way everyday. Some days I wonder if Tiffanni even needs it and others I want to crush the entire bottle up and mainline it into her carotid. Should she take it for her or for the rest of us?

The “science” behind getting the right medicine combination feels more like a cross between eenie-meenie-miney-mo and necromancy. Huntington’s affects movement, mood, and cognition, but we’ve yet to get the concoction that addresses all three in a positive way. We get one symptom right and the other two are worse for the wear.

Lately, movement is as good as I can remember it. We’ve gotten a mixture of pills that has somewhat stilled her erratic movement, so much so, that people have made mention of it. “She’s doing so much better!” So I smile and go along with the optimism. I’m not sure what my role is in those moments usually. Yes, her movement is better, but there’s a tradeoff. Mood and cognition have taken a hit and I’m stuck with the responsibility of making the decision- what’s right for this family? Is it better that she stumble through the house, falling and bruising daily while her mood strikes a balance, or do we still her stagger and allow her to cry all day, connecting events from an alternate reality that her brain lives in?

All of this has proven too much for my brain over the last couple of months. I feel a geyser rumbling on the inside conspiring with my emotions to explode at any moment. What used to settle the inevitable eruption, a jog or a shower, a movie or a book, lacks the alleviation it once had.

So, I’ve resorted to prayer. Every night after a trying bedtime routine, I feel like I’m a dad of a young child again that has to check for monsters in the closet and under the bed, retrieve a glass of water, read a bedtime story- anything to belabor the impending end of the day. We check each item off of the list and then I sit down beside her, lay my hand on her head, and pray. Nothing elaborate. Nothing revolutionary. In fact, it probably has more to do with the slowing process than the providential one. But in those brief moments, my soul smooths. The tempest’s waves of the day fade briefly, and regardless of what Tiffanni has done that day, that hour, the chaos quells, for a moment.

Does prayer change God or does prayer change me? I can’t answer for the creator of the universe and honestly feel presumptuous thinking about it. But I am certain of one thing. I know it changes me. At the end of a tough day, a challenging day, to say those few words- slowly, thoughtfully- shifts things. I don’t do everything right, but an open invitation into a partnership with God, His bidding, my answering provides a fresh start. Not from scratch, but back a few steps closer to the “I do”. Maybe it’s just another trial concoction, or maybe it’s just a long time coming.

16 Comments for “Now I Lay Me Down To Sleep”

says:

Jeremy Sims, you are her hero. Without you she would not be able to continue as well as she does. Hang on, you will miss the mark at times, but the rewards of the times that you do score the mark, are priceless. The medication balance is ever changing, if it worked today may not work next week.
Sending many prayers for your children, you and Tiff.
God bless you and yours

Susan Bethea

says:

His grace truly is sufficient. In my greatest storm I found that truth. You are doing it well. We can’t be perfect. Sending love and prayers your way.

Susan Kennedy

says:

I know I’m not in your shoes, but I think you’re doing the best you can, which is amazing. Tiff is lucky to have found someone who will not give up, no matter what. Like Ron Cox, God has chosen you to take care of your wife and family amidst terrible circumstances. And even if you don’t feel like it, you’re doing an amazing job. Thank you for sharing your struggles and your honesty with the rest of us. Your family is truly loved.

Ruth Ann Williams

says:

Love you and believe in you. I could make a lot of kind, encouraging comments, but you’ve heard them all so I will just keep praying.

Vonna

says:

Wow Jeremy. Powerful blog. Life really sucks sometimes but the Light is shining thru you and your family. My heart grieves with you.

Wanda Hendrix

says:

I am great full for men of God like you and Ron Cox. You are an awesome example to other men of what a GOD’S man is like. Day by day putting one foot in front of the other while God goes before you and is your rear guard. I grieve with you Jeremy. I come from a line of Huntington disease; grandfather, mother, aunts, uncle, brother and two sisters. I am praying for you and your family.

Morgan Dudley

says:

I was thinking about it the other day and My first memory of her was at a church retreat at springville. She seriously chewed me and some of the other girls out because we decided it was funny to attack the boys cabin with water guns after curfew. She was so mad I decided she hated me. Haha. I hate seeing bad things happen to such great people. I pray that God works some sort of miracle through this all. Even if God doesn’t heal her on earth this blog and your openness is touching so many people. It speaks to me each week. Thank you for sharing.

Cathy Jones

says:

All I can say is thanks for being “real” and honest and vulnerable! These are much needed in these days! And are very rare!

Paige Landry

says:

I can’t articulate how much you inspire me and our family. We are covering you in loving prayers and believing for a miracle. Love you

Melody

says:

If I lived closer I would offer some real hands on help. I wish I could do or say something to help relieve the pressure of the day to day for your family. I can just promise to stand with you in prayer.

Pat Dunkin

says:

Once again God is amazing how he is walking with you, Tiffinay and your children. The road is a long up and down hill walk, run and ride, but With God in control of Tiffinay, you and the sweet family you all will with Gods great grace and so many people praying make it, you are a child of his finding his GRACE, God is Good all the time! Praying PEACE and understanding in your sweet heart and mind!

Susie Gray

says:

How you do what you do and all you do I’m not sure I’ll ever know; it has to be God. You pour such good stuff into our kids, lead worship in ways that shut off all the stuff that we bring into church so we can get refueled until next time, then all you do for your beautiful family. So much for one man. There is such power to prayer and I can promise you as a wife with scary stuff going on, although none as scary as your sweet Tiffanni’s, there is nothing more calming that when your husband lays your hands on you and prays. We wives need that. Thanks for sharing. Appreciate your honesty and transparency and all you do for all the people of Kingwood.

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