Sunday, May 10, 2009

May is ALS Awareness month

This article is taken from the MDA / ALS Magazine which is sent
to all those who are registered with MDA and have ALS.
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Since May is ALS Awareness month -the magazine is featuring
families of long term ALS survivors -
Marcie being one such survivor-
and myself, her mother.
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’It’s What I Do’



It’s all about family and faith, says Linda Gibson of Arlington, Texas, a full-time caregiver to her daughter Marcie, who has lived with ALS for more than 15 years.
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Linda Gibson has been her daughter’s full-time caregiver for 15 years.
A preschool teacher for 25 years prior to Marcie’s illness, Gibson sometimes misses her career, but says, “taking care of Marcie is what I’m meant to do now, and I’m so glad I get to do it.” To this end, she has become an expert in Marcie’s high-tech care and also has learned to take time to care for herself.
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A grandmother of two, Gibson says her mother-friend-caregiver relationship with Marcie, now 38, has evolved since Marcie received her diagnosis at age 23, just as she prepared to graduate from college.
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“I had to learn how to stop treating her as a child and start treating and listening to her as an adult,” admits Gibson, who prides herself on being able to read Marcie’s eyes. “I always try very hard to respect her wishes, and Marcie always makes her own decisions.”
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Gibson finds ways to take some time for herself. While Marcie’s using her eye-tracking communication device, Gibson surfs the Internet and communicates with other parents of children with ALS. She also enjoys gardening, crocheting and scrapbooking in free moments here and there. In the evenings, while Marcie’s father is at home, Gibson goes out for a 45-minute to an hour walk, or runs errands.
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She advises other parents/caregivers to try to live as normal a life as possible.
“Your child is always your child no matter what their age. I’m very proud of my daughter and the way she’s fighting ALS. I just do anything she needs. It’s just what I do."

You can view the entire magazine at:

http://www.als-mda.org/publications/als/als-curr.html

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In the picture, which was staged and taken by me of myself using a try pod and my new digital camera. I even had to lean how to set the self timer on the camera. That is Marcie's ventilator -her vent -for those reading this and you do not know what that is - that is the machine that breaths for her.

And featured on MDA's web site: http://www.als-mda.org/anyone/2009series/May_6.html
are the story's of 30 PALS (people with ALS) - A different story each day during the month of May. Featured on Wed. May 6th was Alex's story - Alex's Mom and I are "Internet" friends. He is a 19 year old young man DX last year with ALS.

Please read his story - - -

Anyone can be DX with ALS - no matter their age - Marcie was 23 when she was DX in 1994 and Alex was 18 (DX in 2008) - Libby was 23 (DX in 1994)- Amber was 23 (DX in 2008) and Haley was only 16 (DX in 2008) - we as mother of these "kids" stick together on the Internet encouraging each other -


And on Sat. May 16 you will read about another of my Internet friends Mary - Mary's sister-in-law, Faith, goes to my church. Faith connected Mary and I soon after Mary was DX with ALS. Mary and I communicate a lot by way of e-mail. We are about the same age.

Clink on the link below to read about Mary and all the 30 PALS featured in May on

Anyone's Life Story:

http://www.als-mda.org/anyone/2009series/

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And I hope everyone had a Happy Mother's Day -I did - my other daughter, her husband and my 2 grandsons came by this afternoon for an hour - Marcie had just ask to go outside when they got here so we sat outside in the sunshine. Soon after, my son and his wife came for supper - it was a very nice day -

Thank You God for this nice Mother's Day for me and I hope many other mothers also.

Thursday, April 9, 2009

Watch CSI tonight - April 9th

Watch CSI tonight to see the computer that Marcie uses by Eye Response in action - it will be featured on this TV show tonight April 9th

Tuesday, April 7, 2009

Check out the new Eye Response brochure !

You might want to look at this new Eye Response brochure. I have the paper copy but I just found it on their site last night. As you will see - this is the computer Marcie uses daily !
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Be sure to let the site change pictures at least 3 or 4 times if you do not see someone you recognize at first.

http://www.eyeresponse.com/

Saturday, March 14, 2009

Marcie's Prayer Warriors


Here is the youngest member of Marcie's Prayer Warriors - Nate was 3 months old in Jan.
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The team walked in the MDA Walk held this past Jan. at Grapevine Mills Mall. Mandy, Nate's mom, has been heading up this team for Marcie, raising money for ALS research, for 9 years now. This year the team raised $3,000 for ALS research. The team is made up mostly of members from our church. We appreciate all they do for us so much ! ! ! This year Mandy was ask to tell the entire group at MDA's Stride and Ride Walk just why she started this team and for whom !
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Note the #4 on Nate's cap - this was Lou Gehrig's number when he played for the New York Yankee's baseball team.

Friday, March 6, 2009

Blog to Blog - connecting people

Elizabeth had twins -I signed in on her blog - someone saw my comment and checked out my blog - not unusually - except when this person started thinking back to her childhood something clicked.
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When Marcie was first diagnosed with ALS - somehow we met a lady named Brenda who also had ALS - I remember like yesterday -Brenda and her Mom, Marcie and I met for lunch at Grandy's in Richland Hills -I have hardly passed that place in years but when I do I always remember the day I met Brenda and her Mom there.

Brenda had lost her arm strength when we first met - Marcie could still carry her tray but her arms were weak. Brenda could not carry her tray -her mom carried her tray for her. In the months that followed I was caring Marcie's tray as Brenda's Mom had carried hers.

I kept up with Brenda talking to her and her parents on the phone - the somehow - I kinda think her Dad called me to tell me when Brenda lost her battle with ALS. I remember talking to Brenda's daughter at times - just because she answered the phone.

I may have talked to her Mom & Dad - Brenda's Mom & Dad - a couple of times after that and then we lost touch -till this week -

Brenda's daughter Corrie, had gone to ACU with Elizabeth so she was reading Elizabeth's blog - after reading my comment on Elizabeth blog and her checking out my blog Corrie put two and two together and sent me an email saying " This might be the strangest email you will ever receive" explaining just who she was - we have been "talking" ever since by way of email.

Corrie wrote a very sweet posting on her blog today (March 6th) about us reconnecting:
http://mommyloftin.blogspot.com/

God did this - I just know it - for some reason only known to HIM - HE put us back in touch with each other after all these years.

God does everything for a reason -

Tuesday, March 3, 2009

Kinley and Madelyn are home

The Tarrant twins got home from the NICU last week - being loved by their parent in their home! I have not been to see them yet but I plan on going very soon.

Check out their blog to see pictures of the twins: http://etarrant.blogspot.com/

Sunday, February 8, 2009

Twin girls - born last night

The youngest of the Diaper Darlings is now a Mom to twin girls -Kinley Margaret and Madelyn Clare were born last night close to 9:00 to Chris and Elizabeth. Suzanne sent me a text and soon after I headed to the hospital. I have know Elizabeth since she was born and it seamed fitting that I was at the hospital when her girls were born.

Here is Elizabeth's blog where Suzanne is keeping everyone posted on the twins.
http://etarrant.blogspot.com/

Picturers are up with more to follow I am sure- - -

Elizabeth was OK when I saw her for just a second last night after the delivery and Chris was on cloud 9 - camera in hand - when I left the hospital at 10:00 he was in the waiting room surrounded by family and friends already down loading pictures on his lap top for all to see.

So check her blog to watch these precious "Gifts from God" grow.

I can not wait to really see the girl in person - I got a tiny glimpse of one in the NICU through a crack in the door last night.

Thank you God for keeping this family safe and for giving them 2 precious little girls.

Saturday, February 7, 2009

15 years with ALS

It has now been 15 years since our lives were changed forever - first diagnosed in Dallas and then a trip to Houston to confirm that our daughter - only 23 years old at that time - had ALS(Lou Gehrig's Disease). A disease that strikes the average age of a person 55 years old - more men than women - however since I have been learning more and more about this "monster" disease it strikes ALL AGES. It has no treatment or cure. If you do not know - it is a progressive degenerative muscle disease - killing the motor neurons in your body which makes you muscles work.

Here is the site for MDA /ALS division on line: http://www.als-mda.org/
and ALSA national web site: http://www.alsa.org/

However my daughter has "Beaten the Odds" - fighting to live well past what the doctors told us to expect which just goes to show God is in control of our live. HE still has plans for Marcie and our family. She has touched so many lives in her lifetime.

I am so very proud of my daughter - she has NEVER GIVEN UP !

Going from a very active person to a wonderful adult. She is so smart and can communicate so fast on her Eye Response computer called ERICA. http://www.eyeresponse.com/

I could go on and on about her but I will not.

The children from down the street come by to see her - they came on her birthday - a very cold night in Nov. and sang Happy Birthday to her from the porch as she sat inside the house. The other day they came down and stood at her window saying "Hi Marcie" "Hi Marcie" and as Hannah left - she is 5 - she said "I love you Marcie".

We pray for a miracle everyday - maybe it will happen soon.

Wednesday, January 28, 2009

I need your help !

For those of you who know my email address - please send me an email so I can have your email address again - I lost just about all my email addresses and need to rebuild my address back up - my computer had to be cleaned out - I lost so much - should know better then to always count on a machine - thank you - Linda