Sunday, March 29, 2009

The Black Hole

I'm there….

The Black Hole
TGIF Today God Is First Volume 2, by Os Hillman

"My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9).

On February 20, 1962, at 9:47 A.M., the spacecraft Friendship 7 rose on a pillar of fire, piloted by lone astronaut John Glenn. Leaving the coast of Florida far behind, the space capsule orbited the earth three times, traveling 81,000 miles in less than four hours. As the craft began its descent from space, mission controllers in Houston received a warning signal. A sensor indicated that the capsule's heat shield was in danger of detaching. If the heat shield came loose during reentry, the capsule would burn like a meteor--and John Glenn would die.

Because radio waves cannot penetrate plasma, the spacecraft experienced a total communications blackout--what astronauts and mission controllers call a "black hole".

The minutes crawled by and the suspense mounted in the Houston control room. NASA engineers felt totally helpless. Finally, after five minutes of silence, mission controllers heard Glenn's voice crackling over the radio: "Friendship 7 to Houston?"

Shouts of joy shook the control room. John Glenn was coming home. Although neither Glenn nor the mission controllers knew it at the time, the heat shield was absolutely firm and reliable. The fears for John Glenn's safety during his black hole experience were unfounded.

If you've ever been through a major crisis, you probably know what a communications "black hole" feels like. While you are in the pit of adversity, you feel that your world is collapsing, that your life is out of control--and that God is silent. The silence of a black hole is deafening. You feel isolated and alone. You question God's love, His care for you, and even His existence.

But even when it seems that God is distant and silent, your "heat shield" is still there, firm and reliable. In your black hole experience, God is teaching you to go deeper into your relationship with Him. You may think that your life is out of control and burning like a meteor, but in reality God, your heat shield, still protects you from the fiery forces that surround you.

Wednesday, March 25, 2009

Mass email from "Margie's Daughter"

I just received a mass email.  Nice way to find out your mother is in a nursing home, but hey, at least she's apparently happy:

To all of Margie's "Presto" friends and family, just to let you know the latest news...
We recently disconnected the Presto service at Margie's request, and we are now unable to provide the service since Marge has moved into a skilled nursing facility in the ****** area this past Monday, March 16th.  If you would like to correspond with Margie, I'm sure she would LOVE to hear from you - so please feel free to send her cards or letters via U.S. Mail care of my address which is as follows:
Margie ****
c/o [my sister]

I will be sure to deliver Margie's mail to her ASAP at her new home since we visit daily.

Margie is doing GREAT - and she's adjusting to her new home amazingly well!!!  She's loving the specialized attention - and she's enjoying such things as being personally served three hot meals a day!  I've had lunch and dinner with Margie several times now, and we both think their food has been really good!  I personally think their dinner rolls taste like King's Hawaiian bread!  And would you believe the nurses have even asked if she would like coffee or hot cocoa when she's finished her meal! 
Perhaps as a "sign" or a positive twist of fate, when we visited on Saturday, March 14th to have Margie pick out her room, she even enjoyed three of her favorites at lunch - a hamburger, MILK, and ice cream!!!!   (For those of you who may not know...Margie sometimes calls herself "Wimpy" as seen in the old Popeye cartoons...and she loves milk so much she's been know to drink 2 1/2 gallons in one week!!!!  According to Margie, "It's the best drink in the World!")  :-)

We're getting to know Margie's sweet, new roomie, Willie - and her wonderful family members as well.  They even came into the dining room to introduce themselves to us before we'd even finished our lunch the first day Margie visited!  They heard Margie might be Willie's new roomie - and they wanted to come say "hi"!  A warm welcome, indeed!
Margie has started daily physical therapy and enjoys getting "out" and even referred to coming back to her room as coming back "home".  She's adjusting well - and was even laughing as we reminisced and talked about old times at dinner in the dining room the other evening.

Each day Margie has been happy - and as each day passes, her room is taking on her personality as we decorate it with her personal decor items, photos and belongings.

As Margie's hearing has deteriorated over the last couple of years, telephone usage has become quite difficult.  So please write to Margie - and I'm sure she'll be thrilled to hear from you.

All the best,

***** ******
Margie's Daughter


Tuesday, March 17, 2009


My gmail account has been hacked so I apologize if you got email "from me" that is spam. I've taken steps to re-secure my account and hopefully that will be then end of it.

I am stunned by the crazy people in this world. Be safe out there. Love, Claudia

Sunday, March 15, 2009

Counting Blessings

I appreciate all the words of support that I've received since my last post. I know that some things are ugly but true and I've found that some things are toxic to keep bottled up.

I am continually amazed at the grace and love that people show me. I am far from perfect and, like the rest of us sinners, deserve nothing but punishment from a just God, but He is also merciful, and for that, this sinner is grateful.

I am so blessed to see my little boy and his "bwak wab" lay their heads down next to one another each night. Stitch is truly an angel with fur on. His gifts to us are God's gifts to him: his patience, love, energy and intelligence. Thank you to those of you who actively helped bring him home and to those of you who continue to support us as we strive to give him the care he needs.

I am blessed to have friends, old and new, who will stand beside me and say "I love you" even when I am unlovable.

I am blessed to have the vision that people come into our lives for a reason, a season or a lifetime. And that whichever it is, that person's presence is a part of the bigger picture.

I am blessed to have wonderful children who love me unconditionally.

I am blessed to live in a free country, where I can speak my mind (as I often do), and worship freely.

Count your blessings… I'm still counting mine. Love, Claudia

Monday, March 9, 2009

Warning: Dirty Laundry Ahead

WARNING: Dirty laundry ahead. Continue at your own risk. Please skip this if you are wearing rose-colored glasses.

I've had a pretty significant surge in progression since the first of the year. No new symptoms, but the old ones are definitely worse. Although the "experts" say that ALS has a "linear progression" I see myself having plateaus and 'spurts'.

I have no doubt that the stress of the past few months has made my symptoms worse. I'm not sleeping well, which I know makes things worse. To top that off, my sister decided to inform me last September that she is "too stressed" (taking care of my 82-year-old mother with Alzheimer's) to hear about "[my] problems" and she doesn't have "time or energy" to update me on Mom, so communication has been severed. Both she and my mother live more than 1000 miles away, and the only news I have gotten since September has been FROM my mother via voicemail (I can't speak on the phone). Unfortunately, it is difficult to know what is really going on due to my mother's confusion and memory-lapses. Without my sister being willing to "fill in the gaps" I've been left to speculate about exactly what is going on. My mother lives in an apartment for senior citizens, but it is not "assisted living" so it is hard for me to know if she is eating adequately, getting her medicine, etc. Is she REALLY out of food or has she FORGOTTEN that it's there?...stuff like that. The last time I got any information on my mom's condition (other than from my mother who has difficulty knowing what day it is) was in SEPTEMBER.

The KICKER here is what happened recently. My mother called and said she had to move to a motel "for a while" because there was a leak in her apartment. Come to find out (and this was substantiated by a call to the apartment manager) that she was in La Quinta for one week and that, according to her, she was left there with a 4 lb. jar of peanut butter, a loaf of bread and NO MONEY. THEN she told me that on day "5" my sister left for HAWAII! At that point I had no idea how long my mother would be in a motel (nor did the apartment manager). My sister never contacted me to let me know what was going on with mom.

This week, my sister shut off my mother's "Presto" system (an email receiving/printing device) that I used to send email to Mom AND cut off Mom's long distance privileges. My sister glibly stated, "Mom's long distance has also been blocked… so to talk to her you will need to call her." AS IF my sister isn't aware that I cannot talk on the phone!

I emailed and asked my sister to reinstate mom's long distance phone service. I have been able to reach my mother once since then.

All of this is just a perpetuation of the dysfunction of my family of origin. I've repeatedly asked my mother to move to Indiana over the past 20 years (and again as recently as 2 weeks ago) but she refuses.

I have no other family…so FRIENDS, you're IT. I refuse to "play the game" and I'm outcast and frankly, it's just as well I guess. It is just hard to know that I'm on my own, without a spouse or family support, facing ALS. I pray for the grace to keep my head high and live life to the fullest of my ability.

If you've made it this far, thanks for letting me "vent". I have bottled up the ugly parts of my life and tried to be "all-happy, all-singing" for decades but I'm realizing that I am who I am, and if you love me, you'll love me. For those of you who still do……..thank you. I love you too!