Heart Wanted....

In Acts, David is referred to as a "man after God's own heart". David was a king, a poet, a murderer, a warrior and a child-victor over Golliath. David was far from perfect. But more than anything, David was after God's heart. He didn't want God's power or His favor for his own gain. David wanted God's heart. In Psalm 139:23 David writes "Search me, O God, and know my heart." It is no coincidence that those words were followed by a plea for God to reveal to him any "wicked way[s]" and for God to lead him "in the way everlasting."


I started a Bible Study this morning about David. At the conclusion of the lesson, we were given a sheet of paper, blank save for a giant heart drawn on it. The assignment: examine your heart right now and depict it in some way (words, drawings, colors). There were many heavy hearts at our table. A mother who's son has turned his back on God and his family, a woman who's husband died abruptly from cancer this summer, another friend who is separated from her spouse, and Amy and I, dealing with the weight of autism, Fragile X and ALS.

I glanced around the room while the women were working on their "hearts" and I saw many tears. Sometimes it is easy, when your heart is heavy, to think that yours is the only one. That "everyone else" has a rosy life. Some of us even pretend that it is rosy when, in fact, it isn't. Sound familiar?

Some days I feel as if my heart is a pulverized, unrecognizable mess. Yuck. Got a visual? I do. The thing God told me today is that he still wants it...desires it...is passionate about it...all of it. So, today I pictured myself holding a tattered piece of blood-dripping meat, nearly unrecognizable as the organ it was created to be, out to my Father God, who lovingly cradled it in his outstretched hands and smiled as a child would when they are reunited with a loving parent: unmitigated joy.

Father, help me to remember that while, like David, I'm far from perfect, that what you want is all of my heart. Help me to remember that, like Abraham, who believed and it was "credited to him as righteousness," you look not on my brokenness or my sin but on the righteousness of Your Son who died to gain that righteousness for me. Thank you, Father, for that most wonderful gift! Lord, search my heart and renew a right spirit within me. Lead me in the way everlasting. Amen.

~Claudia

It's Reality TV...for dogs

Stitch loves looking out my window. Earlier this summer, he REALLY liked it. It's like reality TV...for dogs:

Feast or Famine

This winter I pretty much did nothing since cold turns me into the tin man without an oil can. This summer I've had so many wonderful visitors that I haven't had time to blog. The summer rush is over and so I want to share some of what we did this summer.

Stitch got a bath. A great excuse to play with the hose! More of our summer activities to follow. Stay tuned.

What A Wonderful World

This month's Good Housekeeping has a poignant article about a family affected by Fragile X Syndrome. For the first time since my kids were diagnosed (the first in 1989 before the gene was even discovered), I found an article that accurately captures the life we live. I've told people for years how blessed I am by my children, and it's obvious to see that it is sometimes a challenge. What people don't always see is the connection between the two extremes.

Take a few minutes to read the Good Houskeeping article. Then let me know what you think.

"Then I think to myself, 'What a wonderful world...'"

You're kidding, right?

 

A while back I made an appointment to get resting hand splints.  Common in ALS paraphernalia, they are just what they sound like...splints for your hands while you rest (in this case, sleep).  The intention of the splints is to keep your hands from becoming contractured, like this:

I knew I might be in trouble when, at the "fitting" appointment, the clinician brought in a splint similar to this:

  

See the problem with that????

After returning home and finding what I needed online, I emailed the tech to have him order some resting hand splints, which he did.  Today I went in to have them "fitted" and they were obviously too large.  After watching him fumble with the velcro (including trying to attach the "fuzzy" side of a strap attachment to a non-velcro part of the splint) and try to convince me that they weren't really too large (they extended  well over an inch beyond my longest finger and were a good 1/2 inch wider than the widest part of my palm), I finally politely asked that he order the next-smaller size.  Now, this is a certified orthotist, professional, presumably college-educated person... but when he went to put the splints back in their respective (right, left) boxes he held up the splints, looking at them, turning them around and upside down, trying to tell which was which.

Not a huge confidence builder.  Hopefully, I'll get the smaller size and be all set next visit.  Amy and I got a good laugh out of the whole thing!  Just another day-in-the-life.........

UPDATE: TWICE IN ONE DAY!

I need a particular piece of equipment to adapt my surroundings.  I know what I need.  I asked a "patient services/equipment" specialist at a national organization about where/how to get it (loan closet).  They referred me to a therapist who deals in that sort of equipment.  NEITHER of them had any clue what to tell me to do/what I needed specifically.  I went online and found PART NUMBERS and photographs for what I needed.  Took me 20 minutes...tops.  Moral of the story:  you're on your own.  I'll be pleasantly surprised if the loan closet has what I need.

I wonder why I don't participate in the national organization's fundraising activities??? Hummm.