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This is where I explore, record, and share the life that is my legacy - mine.

I Love You So Much {Mama & Me}

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She’s always said, “I love you so much!” It’s one of her signature statements those of us who love her back count on hearing. She has always said each word carefully. There is nothing “on the surface” about Mama’s love.

Sometimes, on her bad days, when I say them to her, Mama’s only response is a nod. I see she is trying to remember what to say back, but the words seem to have been devoured by the dementia.

Other days, like yesterday, she says, “I love you, I love you, I love you so much!” There is a tender urgency in her voice letting me she wants me to know what she can’t say on other days.

I believe that to be true, because all of my life Mama was a planner. She baked extra cookies, “just in case.” Many mornings she made coffee in the big pot because it was possible a friend or three might stop in. She taught me to get out my clothes for school the night before. Mama also tucked away small amounts of money and small, but meaningful “just because” gifts or for rainy days. If I was lacking in a hug, she’d give me two – one for now and one for later in the day.

That’s always been her way, and it still is.

Tucked inside the beauty of her words, she is still being herself; determined to give me the gift of her love – one for now and two for the other days she can’t.

Although I hate dementia, I am as determined as Mama. Every day I ask God to help me see the real woman she is. And he does, but first I have to shake off my self-pity, and look for His answer. When I do, (with His help), I see it in the way she looks at my dad or teases him, the way she says my name, the tone in her voice when she says, “my son” when she’s talking about my brother, or in the way she reverently closes her eyes as I read a favorite Psalm to her and see her lips moving as she recites the words to Him in a whisper only He can hear.

Maybe someday dementia will take her completely. She knows that and is concerned about it. I know this because yesterday she said, “Joy, I hate what’s happening to my brain.” I told her I did too. We both had tears in our eyes, and she said it again, “I love you, I love you, I love you so much.”

I’m storing them up in my heart to cherish because there are rainy days ahead when I will need them to comfort me.

In times like this, we will say . . . Your unfailing love is better than life itself; how I praise you! Psalm 63:3 (NLT)

This one of Mama’s favorite Psalms and when we get to this verse, she always nods her head in agreement with the words. It is then that I am aware of the priceless faith legacy Mama is giving us.

You might be wondering what I say back to her when she tells me how much she loves me.

“I love you too, Mama.”

She gets the last word in (because of the lump in my throat) when she says, “I know you do, honey.”

Until Next Time,

Joy

Remembered by Her ~ Bits & Pieces of Me

A Touch of Summer

It was yet another cold, blowy, snowy day. Sick of winter, I yearned for a touch of summer. A touch of something lovely and warm. I asked God for it. I had no idea He’d send a lovely and warm someone.

It happened in the Ladies Room at Perkins Restaurant.

I was ready to leave when the door opened. I stepped back to make room, and the first woman through the door said, “Oh! Hello – I remember you and I miss you!” She took me gently in her arms and patted my back. The woman with her said, “Do you know her?” The woman hugging me said, “Yes, I do. From when I worked here.” Her voice was quietly sure.

Her mental and physical challenges were written on her face, across her bent shoulders, and in the way she spoke. If I had left it there, I’d have missed the recognition in her eyes, the glad certainty in her voice, and her tender embrace that revealed her power to love.

Years ago, she and a team of others, worked at Perkins clearing off and washing tables. I loved talking with each one, but especially her. Sometimes, when they were waiting for their ride at the end of their shift, I’d sit on the bench with them or squeeze an out-stretched hand (or six!) as I left.

I am one of many she served quietly and with dignity. At first glance, some might have seen her job as menial. To her, it seemed to matter as much as oxygen. She literally loved her work.

Watching her work was pure joy, but others walked by her and others on the team with their heads down. They missed so much! And the team? Well, in spite of their challenges most of them knew that they made some people uncomfortable. She’d shake her head, a wistful longing in her eyes – she wanted to know everyone and to share the goodness of her heart with them, but they didn’t give her the chance.

In her kind way, she sometimes comforted the others who didn’t understand the rejection as well as she did.

Yes, sometimes people with these kinds of challenges look messy to those of us whose challenges are sometimes more easily hidden. Twisted bodies, twitches, guttural sounds that escape suddenly, almond-shaped eyes, and so on. But if we turn away we miss. . .

. . .the gentle beauty in her face now framed by salt and pepper-colored hair, and behind her glasses that are always slightly askew; eyes that recognize love and shine with a deep desire to serve literally for goodness sake.

I walked to the car deeply touched by God’s grace and the pureness in her heart. I savored the memory of the sincerity in her voice when she said, “I remember you and I miss you.” On the way home, I thanked God for her example, her servant’s heart, and the great privilege of being remembered by her. The feeling of being touched by God’s goodness through her has not left. I pray it never does.

But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. There is no law against these things! Galatians 5:22-23 NLT

Until Next Time,

Joy

JAM Walk [A Mile or More in My Shoes]

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Things haven’t gone so well on the health front since I wrote my first A Mile or More in My Shoes post.

It’s bad enough I almost didn’t write this one. I never thought I’d end up this way. Honestly, it’s just plain sad. I’ve dieted and grown fatter. I’ve walked and grown weaker. And, at times, I’ve lost hope.

However, something kind of cool is happening. . .on Saturday I’ll be at the Mall of America walking with some of my family to raise awareness, and money, to stop juvenile rheumatoid arthritis. (RA)

Because this matters so much to me, I’ve been doing some training. A month ago, I couldn’t walk more than five minutes on my treadmill with it set on the lowest setting. Now, I can walk forty-five minutes at a little higher setting. Not great, but better. I’m choosing to measure my progress in inches. It beats not measure it at all. Another part of my preparation has been the addition of a standing desk to my daily writing routine. I’m able to stand 45 minutes straight now too before breaking into a sweat. Who knew standing could be so hard?

Standing Desk

This means that, after the walk on March 1, 2014, I can choose to quit – sort of a mission accomplished thing – or I can choose to keep going because the mission is just getting started. My personal goal is to walk 60 minutes a day and stand for at least an hour. I’m close, and I like how this feels.

Weight-wise the doctor says I’m broken. It’s  called Metabolic Syndrome with type 2 diabetes and chronic inflammation.  This combination can make weight-loss nearly impossible. The only hopeful thing I’ve read is this thing called the Venus eating program. It’s a really big change – mostly single ingredient foods with very little gluten. The last part is easy – I’ve been eating mostly gluten free for over a year. Now I’m eating small amounts of protein with fruits and vegetables, tiny portions of rice or pasta, and a few nuts. Except for Saturday morning and all day Sunday. It’s not as hard as it sounds. I’m also trying some natural products. If all of this works, I’ll share the links.

The supplement that does work is called Alleviate. It doesn’t work for everyone, but has helped my bone on bone knee pain a great deal. I’m able to walk with less pain, and I take fewer doses of Advil.

In a few days, I’ll let you know how the walk goes. If you think about it, we could use your prayers. Grace has RA in many of her 12 year old joints. It’s a heart-breaking disease.

Bits & Pieces of Me,

Joy

Mama & Me {The Strength of Our Hearts}

Dad & Mom hug

This is one of my favorite pictures of my parents – in the kitchen sometime in the 1980s.

In ignorance I used to think people afflicted with dementia just slipped away in their minds – sort of like an endless daydream.

I was terribly wrong.

Watching Mama, I’ve seen suffering I never expected she’d encounter. On her good days, she knows she has bad days. On her bad days, we watch her slip helplessly into a black hole in her mind. She tries so hard to stop what she knows is coming then the disease mercilessly gives her shove.

The other day she was trying to tell me something important to her. She got several sentences out before looking at me with fear-filled eyes. “Here it comes. I can’t stop it. I’m sorry.”

I told her it was okay, and just before the mental shove came she said, “No, Joy – it is not.”

In moments like this I have to choose whether I will cry or go with the flow. “Mama, you are so right!” I said after I prayed the words wouldn’t sound like they’d traveled around a huge lump in my throat.

She smiled and agreed although the question in her eyes told me she had no idea what she was right about, because within a couple of seconds, the previous conversation was completely gone.

There are days she is angry, others terribly sad, and sometimes she is frightened because she knows she’s going, and worries she won’t get to come back. I’m as afraid as she is.

She’ll say, “I hate this!” Other times she looks at me with eyes begging and asks, “Can you help me?” I’ll ask her with what and she points to her head and says, “With this.” We both know I can’t, but for a second, she hopes. Or she’ll shrug her shoulders and say, “Here I go.” She’s not at the point of total vacancy yet, but for a few minutes now and then she feels so very gone.

One day not long ago I asked her, “It’s hard isn’t it, Mama?” She said, “It’s horrible.” Then she said, “It’s bad, but not as bad as I thought it would be.” Then she patted my hand and said, “But, it is bad.” Her loving touch and her honesty made me smile because that’s my Mama.

In Times Like This We Will Say. . .

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. Psalm 73:26 (NLT)

Because without faith in God – without knowing He is ours forever, we would be hopeless. With Him, He truly is the strength of our hearts – even now in the valley of dementia.

In Times Like This We Will Say. . .

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. Psalm 73:26 (NLT)

Mama & Me {I Wish You Could Have Known Her Then}

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Mama and a brand new me.

She doesn’t want to meet new people these days. Some days she doesn’t want to talk to people she’s known most of her life. She won’t let me take her picture. I think she is still beautiful, but she doesn’t. So, I honor her.

I wish you could have known her when kids from all over our neighborhood came to hang out with us and our mom. Or when she wore a mini-skirt and my white go-go boots on a dare from a friend to my brother’s Cub Scout to Boy Scout ceremony and they invited her up to pin him. Then there was the time she drove us up and down Broadway in her new Chevy and the Rochester police department had the same cars and kids thought she was a cop; until they saw her, and she ended up leading dozens of cars “bombing Broadway.”

Or even cooler yet when I believed in Jesus, and she turned back to Him too. Or times when boys broke my heart and she held me telling me my prince would come.

And then there was the time I’d been babysitting a little boy who was only a couple of months old, and the house grew colder and colder and smelled strange too. It was winter and the little one in my care needed to stay warm. I did something I’d never done – I called his parents and asked them to come home. They asked me to turn up the thermostat, but I told them I’d done that and was uncomfortable doing it again. It just wasn’t working.

They’d left dressed up really nice to celebrate a big event in their lives, but something was wrong and they needed to know. They came and sent me home, but seemed angry at me. I walked the lonely block to our house suddenly unsure of my decision. Mom listened and told me she loved me. I’m pretty sure there was buttered toast and hot chocolate involved.

The next morning the phone rang (we had one in the whole house at the time and it was connected to the wall) and after talking for a little while, Mama called me down. The lady on the phone was weeping and grateful – there had been a serious gas leak in their home. The guy who fixed it told her we were lucky there hadn’t been an explosion.

What did my way cool mom do? She knelt down weeping, held my hands and thanked God for keeping me safe.

I wish you could have known her before she was wheelchair bound and a prisoner of dementia.

If it’s true that 44 million people in the world today are afflicted with this illness of the brain, there are at least that many people with the same cry in their hearts – I wish you could have known him or her when. . .

When I was a kid I’d say, “I hate (whatever) with a passion!” These days that’s the way I hate dementia.

But I love my mom even more than ever.

As her illness progresses, I am often helpless, but I am never hopeless for a couple of reasons:

  • Mama still has these moments when she is almost who she was. Even if it’s only for a few seconds, I’m grateful.
  • Mama believes in and loves Jesus so while our moments are limited here, we have forever. (See her testimony here.)

Welcome to the world of Mama & Me – where she and I do our best to trust – even when it’s chaotic, frustrating, sad, and we don’t understand.

In Times Like This We Will . . .

Trust in the Lord with all your heart and lean not on your own understanding;
in all your ways submit to him, and he will make your paths straight. –Proverbs 3:5-6 (NIV)

I really wish you could have known her then. Instead, each Monday, I will share who she is now with you. Because she matters and so do you. And this way you can know that tucked into the pain is something greater – even on our darkest days. If one snippet of our journey helps you walk yours, I will be grateful. That combined with each moment I get with her, will be enough. Most of the time. And when it’s not, God always will be.

Believing,

Joy