Marcie's Journey with ALS and my journey with her and others.

Fall brought football games ~

2011-09-26T23:29:00.027-05:00

Fall brought high school football games but for us half time performance of the band was the only reason we went to the game !

Half time is about to start! The band is on the field and ready to preform!

Instruments UP

All Together -- March

Preforming their competition performance for 2011.

They all look alike - no way I can pick out my grandson except at the very beginning of the performance - but then I have learned his walk and can sometimes pick him out in the band. Sometimes!! I did go to practice when they were not wearing their uniforms and tried to watch some of his positioning during practice and that helped.

From Friday night football to Monday night football !

To the middle school football games - I can find my youngest grandson here but only because I know his number !!

Ready for that football !

Waiting his turn to go into the game.

End of school band concerts

2011-08-09T20:43:00.010-05:00

Spring band concerts !

Middle school Beginning band- so fuzzy I just turned it into a cartoon picture !

High school: Concert Band One

After the middle school concert I was walking behind my grandsons. I like this picture - they do like each other. 1st years band students wear band school T- shirts. Next year they will dress more appropriately for a band concert - tux shirt, cummerbund and bow tie.

Marcie's BIG Surprise ! Going to the Kenny Chesney Concert at Cowboy Stadium in Arlington, Tx - our home town !

2011-07-24T11:04:00.073-05:00

Back in January when I first learned Kenny Chesney was going to perform at Cowboy Stadium, which is only about 15 minutes down the road from us, I thought it would be so much fun if my whole family could go do something all together, something we never get to do. I called about tickets BUT when I talked to Marcie about going she said she would be afraid of the crowd noise since we would not to be able to hear if her vent was working properly and she, most likely, would not be able to take her computer so she would not be able to "talk to us" easily.
Then she typed, using her eyes on her eye gaze computer, "If I could only afford a suite?". I would have never thought of a suite - well we both knew that was out of the question.

BUT as I left her room I said to myself "why not try". She does she not ask for anything - especially to go somewhere - she did not ask for this but I knew she would so enjoy it and what fun to go to the Kenny Chesney concert right here in town. She has nearly all , if not all, of his CD's. Her brother gives them to her since she likes to listen to Kenny Chesney's music.
So I started to think about what company might donate the use of their suite to us for a day. I talked to our preacher to get some ideas from him as to who I should contact. I sent emails and letters - I bet I sent 20 or more asking who could help me surprise Marcie -I even sent Oprah an email and Kenny Chesney's management group in TN. Out of those 20 or more emails and letters I only heard back from Dale Hansen, Arlington's Mayer's office and Cowboy Stadium. All along I was in contact with Doug, our preacher, just keeping him in the loop.

And Marcie had No Idea I was doing this !

To make a long story short ----
Two weeks before the concert I had all but given up saying I would not give up till the day of the concert. On a Thursday night a week before the concert Doug called and said he was pretty sure Marcie's Big Surprise was going to happen. Which so surprised me. So many people at our church wanted to do something special for Marcie and up till now we really did not need anything but they wanted to make this happen for her. The next day Doug called and said he had a suite for Marcie the day of the concert, 18 tickets, 5 parking passes and food for us while we were in the suite -oh my goodness - so much more that I had ever dreamed of! And it was a gift from our friends.

The next day was Friday and he called and confirmed what he had told me the night before but this time he had the tickets and everything in his hands. So now that is was for sure confirmed that we were going it was time to tell Marcie of this wonderful gift she has been given. She was so surprised - never dreaming I had been working on this all these past months and now she would get to go to the concert and in a suite with just our family and friends. She would be safe from crowd noises and we would be right there by her side and she could take her computer so she could communicate.

What a Wonder Wonder gift our family had been given and I will for ever be grateful to the great friends at our church who love Marcie and our family so much !

So that was the short story of how Marcie's Big Surprise did happen !

And now here are the pictures from that day.

We were given 18 suite tickets for this concert - our immediate family along with an uncle and aunt from Waco. She gave the rest of the tickets to her friends. She ask if she could pick who used the extra tickets and I told her this was her Big Surprise she for sure could pick who went with us.

Parking lot sign - right at the door - unreal how close our parking spot was - it had a number on it which was the same as our parking lot pass so no one could park in "our spot" for that day.
The picture of our van was taken just before we lift after the concert but it shows you just how close we parked to the door of the stadium.
I almost laughed out laud when we pulled in to the parking lot and the security people had to check our van to find several back packs with medical needs that I might need and a rolling cart with batteries and extension cords (Now who takes batteries and extension cords to a concert? Anyone traveling inside a building to watch a concert for several hours who has a family member on a ventilator and who uses a computer to commentate that needs electricity and or batteries). After seeing all this stuff, the parking attendant ask my husband if we had a good trip (the attendant had no idea we only lived 15 minutes down the road from the stadium) and my husband said "we sure did".

We were shown the elevator and once on the 6th. floor someone was waiting for us to take us to "our suite" which was on about the 50 yard line so right in the middle of the side of the stadium. After we looked around the amazing suite we saw this on the big screen. We had made it!

We arrived at Cowboy Stadium just as it opened at 3:00 and by 3:15 we were in "our suite" for the day. People were already claiming their spot by the stage where they would stand till 11:00 that night when the 4 concerts were over. Since I had never been to a concert like this before I had never seen this and it was explained to me what they were doing by my daughter-in-law.

This is the kitchen in the suit with Cowboy colored M & M's for a snack.

And for eats !!! Look at the huge boiled shrimp !

Baked Beans, Ribs and Chicken fajitas -so good !

Popcorn and 2 desserts!

You can see where Marcie sat during the concert - you can see her shoes at the bottom of this picture. My daughter-in-law and son-in-law taking in the view from "our suite" for the day.

Such a neat picture of Marcie, her computer (this computer reads her eyes and that is how she communicates with us) and Cowboy Stadium filling up with people for the 4 different bands that will preform this day.

Marcie's friend Lashawn and Lashawn's sister as they arrived at the concert. They have been friends since being cheerleaders together in high school. Look at the sun coming in the west end of the Cowboy Stadium.

My Grandson's watching the crowd at it got bigger and bigger as the afternoon went on.

And at 8:30
Kenny Chesney came from out of no where above the crowd on some sort of swing singing as he hovered above the crowd and was put him down on the stage.
Look very closely to the right of the second white light in the picture below and you will see him above the crowd.

Wyatt Beard plays the key board and is from Arlington. He graduated from Sam Houston High School - the same high school my children went to school. Marcie know his name but did not know him. He is a year younger than she is. He has been with KC band since gradating from high school in maybe 1990.
The band is very active during the concert.

Zac Brown and his band played just before Kenny Chesney did.

The end of the concert these 2 bands played together

We were in no hurry to leave - we did not want to get in all the crowd of the cars so we stayed and watched the clean up crew clean up the stadium which was very interesting to watch. Every person had their job to do and they did it very quickly.

Grandsons had some stories to tell their friends at school the next week !

SO MARCIE'S BIG SURPRISE DID HAPPEN after all !

We had a GREAT time - Marcie's Big Surprise would never have happened without the wonderful gift from our church family - North Davis Church of Christ - and all our great friends there who love Marcie so much!
Marcie had one more surprise - Two weeks after the concert when I went to church to one of the classes who help send her to the concert to show them 50 of our 360 pictures - they gave to me for Marcie an 8 X 10 autographed picture of Kenny Chesney he had signed just for Marcie!

What a GREAT memory my family has now and all because our church sent us to this concert and helped me to surprise my very special daughter who is living with this monster of a disease called ALS (Lou Gehrig's Disease) for 17 1/2 years now ! She is so brave and trusts God so much that she just knows HE is using her to show her faith in HIM to others and HE will heal her in time.

This is all a part of HIS big plan for our life - we may not really like this plan for us but we have accepted it. We always pray to God for a miracle that Marcie will be healed!

MDA Muscle Walk at Cowboy Stadium - March 4, 2011

2011-07-24T10:49:00.003-05:00

Here is part of Marcie's walk team after the walk - we had taken a tour of Cowboy Stadium - visiting several spots in the stadium - we had our own special tour guide - Jim works at the stadium and also goes to our church so he gave us a very special tour and we appreciated it so much.

I especially was interested in looking a a suite for an event I was trying to take Marcie to in April at the stadium.

Huge screen ! This was taken from one of the many suites.
My long time friend Billie, the mom to Marcie's team captain, and me.The back of Jordan's stroller - Mandy's baby girl.

More Snow - Feb. 2011

2011-07-24T10:34:00.003-05:00

This may have been the week we stayed in for at least 4 day - did not need to get out so we did not since the streets were covered with ice and snow - Marcie could see the snow when we moved her to the window - it was really very beautiful - especially since we did not have to get out in it.

Winter - Feb. 2011

2011-07-17T17:45:00.004-05:00

Snow A red bird

2 doves

And very cold outside
the pictures say it all

Wiggets for people with Cancer

2011-07-14T08:21:00.005-05:00

In October of '10 I learned to make Wiggets for people who have lost their hair due to Cancer treatment - I do this in honor of those many friends who had and have cancer - I started making them and donating them to The Cancer Center in Arlington. Marcie likes to sit outside and in Texas you can do that mostly all year round - so when we sit outside I crochet these hats and when I get 30 or so made I take them to The Cancer Center.

So many people have done for us over the years it makes me feel good to do for others by donating these crocheted Wiggets.

"Don't Ever Give Up"

When Marcie was first Diagnosed with ALS in 1994 we saw this picture hanging in one of the rooms of the doctors offices we visited - actually we saw it in the room where she had her breathing evaluated so I ask for a copy of it. Marcie colored it when she still had the use of her hands and fingers and then I shrunk it and I attach it too all the Wiggets I donate.

So in this way she is helping me send a message to others with a serious illness.Most of the Wiggets are made out of fun fur.

Rose Bowl Parade on New Years Day in Pasadena, California

2011-07-14T08:16:00.018-05:00

Building Dreams Friendships & Memories is truly what the All Birdville Marching Band did when they were in the Rose Bowl Parade on January 1, 2011 in Pasadena, California. The 3 high schools from North Richland Hills, Texas marched as one big band - 550 members strong. Spending a week in California seeing sights before the big parade the day before they came home - back to Texas. 9th. - 12th graders were in this band. Paula Deans with her husband was the Grand Marshall of the parade.
And here they come - I think they were #10 in the parade so they were right at the beginning of the parade.
Flying that TEXAS flag proudly as they marched down the parade route!

All the drum majors from the 3 high school bands lead this All Birdville Band in the parade with the trumpet players right behind them. The drums were in the middle of the band so the 550 members could keep in step. My grandson plays the trumpet - I know where he marched in the line up so I think I see him in this picture.
Thanks to Kimba who took these pictures for me - she and her family were in California for the TCU game - I ask her is she was going to the game which was a silly question knowing what huge fans they are of TCU then I ask her if they were going to the parade and if so would she take some pictures of this band for me . Thanks muchly my friend -

All their hard work for the months before the parade paid off - they had fun, a great experience and a safe trip to and form California. Thank you God for taking care of this group of young people and all the teachers, parents and brothers and sisters who went along on this trip.

Bandfest in California - as it was happening !

2011-07-14T07:51:00.006-05:00

One neat thing about the Internet -Marcie, my husband and I were able to watch Bandfest as it was happening in Pasadena California by way of our computer as we sat in our den in Texas. It was neat to know they were preforming at the exact same time were were watching them. Bandfest is where all the bands that are in the Rose Parade preform. They did not wear their hats this day so we could pick out our grandson since we knew exactly were he stood on the field as they preformed and where he was in the line up as they marched by - but we had to look fast~ The ALL Birdville Marching Band - as seen on my comptuer.

Then came Christmas!

2011-07-13T19:32:00.005-05:00

With the help of my grandson we got the Christmas tree decorated and ready for our family from Waco to come on Christmas Eve. We had about 25 people for Christmas Eve dinner. No I did not cook -everyone brought something and then deli trays for the most part.

Trying to catch up over this past year!

2011-07-13T18:55:00.014-05:00

The fall of 2010 brought high school football games ---and half time

We can watch the band from up high in a walk way out of the way of other people so Marcie can see very well as the bands preform at half time.

Rose Bowl Parade Practice
The three high school in Birdville ISD (Birdville High School, Haltom High School and Richland High School) were invited to march as one band in the Rose Bowl Parade in Pasadena California on New Years day -they worked very hard for this event raising money for their trip and 3 bands practicing to march as one band with 550 members strong.

On Thursday before Christmas Day the ALL BIRDVILLE TX Marching Band had a practice parade down Mid Cities Blvd. in North Richland Hills.
The next day the kids had to pack their simi (each band had a simi truck) truck with their suit cases and band instruments since they were not going to check any luggage on the airplane.

Band members and family members left for California the day after Christmas or maybe it was the Monday after Christmas - 18 buses took people filling 18 airplanes heading to California to DFW - all leaving at various times of the day - about 50 students and parents went on each bus and each airplane - this way they did not have to charter an airplane. About 1,00o band and family members made this fun filled weeks trip - every day they were busy once they landed in California.

They even marched in Disney's Parade I believe that Thursday before New Years Day.

Here is part of the trumpet section lined up like toy solders about to march down Mid Cites Blvd. in front of a crowd of well wishers. The days leading up to the parade had been warm but the day of the parade was cold, damp and windy so Marcie watched the parade from our van. But she was warm and out of the weather.
After the practice parade they marched into Birdville Stadium to preform what they would play at Band Fest in California the Wed. before New Years Day.

The school district bought all new uniform for this combined fantastic band.

And yes I had a grandson in this band.

Kenney Chesney Concert - we were there !

2011-04-18T09:23:00.003-05:00

My family of 11 and 6 friends of Marcie's went to the Kenny Chesney concert this past Satutday night - thanks to some wonderful friends from our church- North Davis Church of Christ - they gave us a a suite at Cowboy Stadium - that is the only way we could take Marcie to a concert - pictures to follow another day, hopefully !

Up date soon to come - maybe

2011-03-26T13:02:00.002-05:00

Where has the time gone - summer of 2010 is gone so has fall of that year, Thanksgiving, Christmas, football season (watching the high school band), New Years and the Rose Parade in CA (again watching the All Birdville TX band in the parade) and now spring of 2011. One day I will catch up this poor ol' blog.

107 degrees in Dallas / Ft. Worth today

2010-08-23T18:00:00.002-05:00

107 degrees today but the heat index was 109

Nothing more to say than it is HOT -

85 degrees in my house with air conditioner on and also fans turned on in every room!

Arlington's 4th. of July Parade

2010-07-03T16:35:00.004-05:00

Debbie Souder just sent this to me from the parade this morning -Jane and I walking behind the float - Thanks Debbie for this picture ! It was taken towards the end of the parade.

How Do You Read Your Bible?

2010-07-03T11:14:00.007-05:00

That was the question we ask on our float in this years Arlington 4th of July Parade - which was held on Sat. July 3rd.

The theme of the parade was Yesterday, Today and Tomorrow.

North Davis Church of Christ Children's Ministry

How Do You Read Your Bible?

On Stone Tablets

The traditional paper Bible

Or on an IPad

After walking a little over 3 miles this morning we finished the parade route at 10:30 - the parade started at 9:00 - it took us about an hour to walk the parade route - we puled out of UTA's parking lot between 9:30 and 9:45 this morning. Very over cast but no rain and no sun so it was not a bad walk -

Now what will be done for next years float?

Just an ordinary Saturday afternoon EXCEPT ...

2010-06-19T19:10:00.012-05:00

Would you believe ... this grandma was in a dance recital at Texas Hall on the

UTA campus today.

I have not done that since I was 5 or 6 years old living in Waco when I took tap and ballet

from the Hoffmanette's.

Last Sept. I started taking tap at the Dance Invasion Studio and it has been so much fun. Every Tuesday night I must make my brain, my feet and my arms all work together - - it is challenging but so much fun. At one time we had 15 in our class but several dropped out and we ended up with 8 of us. Three grandmothers are in this group.

We tapped to Michael Jackson's "I'm Bad" - note red jackets, short black pants and white socks.

Before Marcie was diagnosed with ALS in 1994, she danced on this very same stage - she was in the UTA Dance Ensemble. She is glad I am taking this tap class. And as a UTA cheerleader - she cheered at the basketball game at Texas Hall.

The last "act" is a Daddy/Daughter Dance - from age two up - I think 18 was the oldest daughter to dance with her Dad on stage. It was so cute to watch and the Dad's did great.

Here is the link to their web site:
http://www.danceinvasion.org/

Classes start up again in July - so if you are an adult and want to learn to tap - come join our class - it is really fun ! ! !

Jami McBroom is the owner and our teacher.

June 10th. Thanks MDA for our visit to the Dallas Arboretum

2010-06-19T18:28:00.005-05:00

Last Thursday our grandsons were here -- MDA had given us some tickets for the Dallas Arboretum and it was Marcie's idea to go when the boys were with us - so off we went - the day started out cloudy but ended out being hot but we had a good time anyway - we got some lunch at a QT near by and ate at the Arboretum.

Steece Quads are growing

2010-04-12T19:51:00.012-05:00

Benxxxxxxxxx Drewxxxxxxxxx Ethan

This was taken at the Tarrent twins first birthday party in Feb.

nDrew Savannah Ethan Ben

Kinley Madelyn

mmmmmmm

xxxxxxxxxxxxxxx,,,,,,xxx Me and Miss Savannah
xxxxxxxxxxxxxxxthe 3 picturers were taken by Suzanne xxxxxxx
*****************************************************
xxxxxxxxxxxxxxxxxxxxxxxxxxx And this was taken today

Taken in front of the room that was once my class room - the plaque on the door says:

This Classroom Equipped

In Honor Of

Linda Gibson
2 Cool!

Someone gave money to equip this class room and the center room in honor of me - what an honor to me and to know that my name will always be on my classroom door.

I taught at this preschool for 20 years.

I had to stop teaching 7 years ago in May 2003 to care for Marcie full time.

bbbbbbb bb Drewcc Suzanne ccBen ccSavannahcc Lindacc Ethan

xxxxxxxxxxx xx Thanks Ruth for taking this picture.

We are standing in front of the door that used to be my preschool class room. The kids are growing so - they will be 3 on Aug. 1st. I do not get to see them much but you cannot tell it -they are such loving and friendly kids and they are talking so much. How lucky I am to have this family in my life.

Happy Birthday Susan

2010-04-05T09:10:00.005-05:00

nnnnnnnnnnnnnnnnnnnnnnnnnnnnnn Susan and Linda

Today is Susan's birthday - our Mother's were friends since they were in the 2nd. grade in Waco - Susan's grandmother hand beaded the top to my wedding dress - which I still have and treasure since every bead was put on with so much love -

The piano in the back ground was a built in 1907 - it was a graduation gift to my Mom when she graduated from Waco High School in the early '30 - I learned to play on it and so did my brother - and so did my daughters and now my 2 grandson's take piano lessons and play on it - it is at their house now.

So Happy Birthday Susan Kay Moran Williams - and many more !

Sun in Texas today!

2010-02-18T11:59:00.006-06:00

this is our house today - one week after the BIG snow in Texas

all that is left of the snow from last week - taken this morning about 9:00

Feb. 18th

and it is 58 degrees now at 12:30

ggggg

Come On Spring!

10 inches of snow at our house - A Record Snow Fall

2010-02-18T11:07:00.011-06:00

our snow covered house

It started snowing early in the morning on Thursday Feb. 11, it was still dark outside - and it never stopped till late on Friday Feb. 12. It was beautiful - especially since we did have to go anywhere - we had all we needed - even if we lost power - which we never did - but the batteries were charged and the generator was read if we needed -

glad I had some rain boots !

looking to the south from our house

looking to the east on our street

across the street

looking north on our street

our mail box

trees in our back yard facing the west

looking down our street to the north - again

This was the last time I measured but it kept falling all Thursday night -

MDA's Stride and Ride

2010-02-18T11:00:00.004-06:00

We had 22 people walking at Cowboys Stadium and this team raised $3,573 for MDA and ALS research - thanks to all who donated and all who came to walk - the stadium was packed with walkers!

Marcie's Prayer Warriors are walking again !

2010-01-08T22:08:00.006-06:00

If you live in the Dallas Ft. Worth area and would like to help raise money and awareness for ALS come join our team and walk in the Stride and Ride walk for MDA -

Marcie has had a walk team for 10 years - lead by the same fearless leader - Mandy - all money raised by this team goes to MDA for ALS research -

The Stride and Ride walk will be at the new Cowboy's Stadium in Arlington, TX on Sat. Jan. 30th - if you would like more details just leave me a message and I will tell you more about this event -

www.strideandridedfw.com

Marcie's team was started by Mandy with most of the walkers from our church - North Davis Church of Christ -

Please continue to pray for a cure for ALS and thanks for praying for Marcie and all those with this and other life threatening diseases.

AND - Thanks for your time in stopping by my blog.

Today is Marcie's Birthday

2009-11-21T10:16:00.002-06:00

Today we celebrate Marcie's birthday - we are so thankful to be celebrating this day today - thank you for all the prayers that have been offered for her and our family to God over the past 15 years and 10 months since we learned she had ALS.

On the day she was born it was very cold and sleeting - today it is warm and sunny - the leaves are turning orange, yellow and brown - fall is here and winter is coming.

Oh No - our preacher went to jail ! ! !

2009-10-08T12:14:00.005-05:00

Two weeks ago - Sept. 24, - our preacher went to jail - he was picked up at church and taken to jail and had to stay there till he raised bail.

He went to jail in honor of Marcie for MDA -the Muscular Dystrophy Association - he raised $3,512.00 - so he did get out of jail.

Thanks Doug for going to jail for Marcie and others for a second time -

and

Thanks to all who bailed him out of jail !

middle school football game

2009-10-07T11:23:00.004-05:00

If I had only had my camera set on landscape and not on close up it would not have been blurry.
But I can see him -

Again we ventured out to a middle school football game this year. This is the only game we can go to this year -all other games are played at a middle school field but when his games are at the high school we get to go since the staduim is handicap accesable -where the middle school fields are not. And I found the elevator that can take us up higher in the staduim if he play in the high school band next year.

Storms were in our area but all had passed by game time - so off we went - the boys still some taller than others - it was a nice outing a little cool but not cold. I got to see both my grandsons -one playing football on the field and the other playing in the stands.

Sat. Sept. 19 was a nice day in Texas

2009-09-22T14:53:00.007-05:00

Linda K and Eileen came to Arlington this past Sat. Linda K is in a clogging group from Corsicana called the Corsicana Cloggers and they were clogging at Six Flags Over Texas. When Linda K and I were young (friends since the 2nd. grade) we roller skated a lot - having birthday parties and going to birthday parties at Pittman Roller Skating rink in Waco. When Linda K told me she was in a clogging group I thought that would be so much fun and I wanted to do it also but I could not find a group close to me. So I have started the next best thing - a few weeks ago I started taking tap classes - I love the class - most of the ladies are teachers or retired teachers or their children are taking a dance class at the same time in the room over from our tap class - and it is right down the street from my house.

Sat. was fun watching Linda K's goup as well as watching lots of other clogging groups. The weather was so nice - not like the Sat. before when it rained buckets of water from the skies.

Visit with the Steece quads, Suz and Joe

2009-08-16T19:22:00.004-05:00

Today I finally got to go see Drew, Savannah, Ethan and Ben, Suzanne and Joe also.

I had had their birthday gifts for a few weeks but I just had not been able to get over to their house. I went to day and took them their gifts which I had kinda made - you can look at the Aug. 1 posting to see what I made for them - I had had it written but published it just now.

Drew and Ethan are really talking - works, shapes, naming animals in the books I gave them - Savannah is right there also naming the animals and knowing the sounds they make - Ben just watches but Suzanne said he is talking some.

They love books - would go to the book shelf up above them and point saying "book book" - they were working puzzles with shapes and numbers - Drew counted for me -

I was not able to be there very long but it was a good visit - I saw Miss Savannah in her pink glasses and her pink eye patch with music notes and maybe bows on the eye patch - she left it along - Suzanne did keep her busy so Savannah would not think about it.

Savannah has another surgery in the morning- 2 loyal Diaper Darlings, Peggy and Tempe, will care for the boys at home while Suzanne and Joe are with Savannah at the hospital.

They are precious children - God gave them to just the right parents - the kiddos are growing and learning something new every day - I am so thankful they are a part of my life.

"People" enter your lives as strangers and leave as "Friends"

2009-08-13T20:39:00.019-05:00

People come into your lives for a reason and when they leave they have become your friends, even if they live on your street for only a few short months.

Last fall a family moved into a rent house on our street. They moved to Arlington from Utah, so the husband / dad could be trained for a new job and then they would be transferred somewhere else. About 2 weeks ago they learned they were being transferred to Missouri.

Yesterday, most of the family came to say goodbye.

Marcie invited them into her room as she always does. They like reading her computer screen where she "talks" to them. Every time they come - as they leave her room or if they are just on the front porch talking to me they look into her window and say : "Hi Marcie" and "I Love you Marcie" and they always say "By Marcie" when they leave. No prompting - Just: "I Love you Marcie", etc... and Marcie smiles at them with her eyes.

Today they moved - I was very very sad. Even thought I know it was to be.

We will truly miss this family - I knew from the beginning they would not be a part of our lives for very long but in the short time they lived on our street we became friends. Last November in the cold they all came down and stood on the front porch and sang Happy Birthday to Marcie. Earlier in the day their Dad had brought Marcie flowers from the bushes at their house tied with a ribbon that the children had made and they painted her pictures for her birthday. Preschool pictures but they were make by the children as a birthday gift to Marcie.

Marcie had filled an Easter Basket for the children - ordering things on line and having them sent to our house. They came and sang to Marcie at Easter.

They truly loved Marcie, such a sweet family. Sometimes when we were sitting outside they would come by to visit.

They will be so missed - it is hard for me to look towards the empty driveway knowing their big burgundy van will not return.

May they have a safe journey to their new home in Missouri.
I know they will touch other lives as they have touched ours.

The Cowboy's Stadium in Arlington, Tx

2009-08-11T13:51:00.009-05:00

This was taken from the upper level of the Cowboy's Stadium looking towards the Ballpark in Arlington and you can see part of Six Flags Over Texas to the left of this picture.

Inside the new Cowboys' Stadium

These are the light that hang -they are hanging - I am just up above them looking down onto field - over the stage, when they will put a stage, where concerts will be played in the stadium.

I think this is looking kinda north east

The BIG screen TV that hangs from the ceiling in the middle of the stadium.

Artists still finishing murals on the walls inside the stadium - this looked like it will be a rose when finished.

And this was lots of smaller flowers of some kind.

It was Open House for the new Cowboy's Stadium this past Sunday - for those of us who live in Arlington. We were not sure how the crowd would be nor how the parking would be. We went about 2:00 and drove right in the parking lot and parked on the front row right near the door. Once in, it was easy maneuvering - yes there were people but we had no trouble. We walked around the main level and then took the elevator up to the top level. Before we left we walked all around the inside of the stadium and when we left we walked all the way around the outside of the stadium. It was a very nice outing - the Stadium is very nice and very roomy - easy access for Marcie's power chair and the few doors we went through were also large enough to get through easily.

Last summer rain storm

2009-08-07T18:29:00.009-05:00

Abby, Hannah and Joey

Last Sat. we had a rain storm in Arlington - I saw something I have not seen in such a long time - I used to do it myself - the neighbor children were playing in the rain - getting soaking wet - running by the curb where the water was up to their ankles - I just stood on the front porch and watched them play - they were soaking wet and loving it - no lightening and warm so they were not in any danger and they were right in front of their house.

2009-08-01T09:39:00.015-05:00

Happy Birthday - Steece Quads - in their birth order:

Andrew (1), Savannah (2), Ethan (3) and Benjamin (4)

Miss Savannah's pink T-shirt.

I also gave them 2 book that my neighbor's neice had written. My neighbor, Ann had showed me the books a few months ago and I knew when I saw them I had to order them and give them to the Quads for their 2nd birthday.

The books are called: God Is with Me through the Day and God Is with Me through the Night by Julie cantrell. You can order these book from: http://www.amazon.com/s/ref=nb_ss_3_9?url=search-alias%3Dstripbooks&field-keywords=julie+cantrell&sprefix=Julie+can

Long time friends !

2009-07-25T22:00:00.023-05:00

Long time friends came to visit today -

I could not go to our high school runion so 3 of my friends came to me - we ate, shopped and looked at Arlington's newest attraction -the Cowboy's stadium.

me- Linda K - Eileen - Brenda

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This was taken Senior Day in Waco - a few years ago -

Me - Eileen - Brenda - Beverly

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Me - Eileen - Brenda today

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Taken not sure when this was taken - elementary school maybe

for a very special party.

Susan - Me

Linda K - Susie

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Linda K and me today

Now we are planning our next outing in Sept.

It was a very very fun day !

I had not seen these friends in several years -
they do not live in Arlington.

I met Linda K when we were in the 2nd. grade - I have always called her Linda K since we had 5 Linda's in our Blue Bird group so we all had to go by our first and middle names.

Eileen we met in junior high - North Jr. -

and Brenda we met in high school - Richfield High school.

2009-07-05T00:05:00.013-05:00

Our float -Noah's Ark - number 141 - was one of the last floates to pull out of the UTA's parking lot on a very hot but windy Saturday July 4th. in Arlington's 4th. of July parade - the largest 4th of July parade in Texas. The float was filled with children from North Davis Church of Christ - children from age 4 to 11. With parents and grandparents walking along side the float.

The fireman made an arch with their ladders for us to go under - however this is looking back after we had gone under the arch of the ladders.

This was the first year for North Davis to be in the parade - I think every one had a good time - I know I did - I walked with them.

What Is IT?

2009-07-03T22:17:00.003-05:00

Go to downtown Arlington, TX tomorrow, Sat. The 4th of July, at 9:00 and see just what this is!

But you will have to wait a while - out of 150 units we are 141.

Mr. Six and Bugs Bunny at Six Flags Over Texas

2009-06-04T20:31:00.012-05:00

Monday started out at a neighbor's swimming pool - we all went - my 2 grand boys, Marcie, her Dad and myself. Only the boys got in the water.

Later in the afternoon we went to play with the Steece quads - again we all went!

We started outside in their back yard but we were chased in the house by a wasp right where we were - - -

Drew was very fascinated with the wheels on Marcie's wheelchair - saying "wheel, wheel" over and over and pointing to the wheel on her chair. Then he discovered the letter board between Marcie and the side of her wheelchair - he then started moving it up and down and as doing so saying "up" "down" as he moved the board in that direction - he knew the difference between up and down! Smart little boy! And he is not even 2 years old yet.

On Tuesday after a rain shower in the morning my 2 "grand boys" and myself headed to Six Flags Over Texas for a few hours in the afternoon.

After ridding all the rides they wanted to ride not having to wait in any lines and ridding some rides twice - we saw Mr. Six and the Six Flags Characters dancing at the front gate by the Carousel. Since school was not out for everyone in our area Six Flags was not crowded at all

We had 2 very busy days - enjoying our "grand boys".

This video is not great - it was the first time I was trying to take videos using my new camera and then putting them on my blog - I did have to ask Suzanne for help. Thanks muchly girl - I did get this one to work ---

May is ALS Awareness month

2009-05-10T17:23:00.025-05:00

This article is taken from the MDA / ALS Magazine which is sent

to all those who are registered with MDA and have ALS.

mmm

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.

Watch CSI tonight - April 9th

2009-04-09T11:06:00.002-05:00

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

Check out the new Eye Response brochure !

2009-04-07T22:16:00.004-05:00

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/

IS IT SPRING YET ?

2009-03-27T18:13:00.000-05:00

Marcie's Prayer Warriors

2009-03-14T11:33:00.003-05:00

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.

Blog to Blog - connecting people

2009-03-06T19:47:00.010-06:00

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 -

Kinley and Madelyn are home

2009-03-03T21:29:00.008-06:00

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/

Twin girls - born last night

2009-02-08T10:00:00.003-06:00

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.

15 years with ALS

2009-02-07T09:51:00.005-06:00

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.

I need your help !

2009-01-28T18:23:00.005-06:00

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

Message to PALS & CALS

2009-01-15T22:27:00.005-06:00

15 years ago this month our lives changed forever!

vvv

In the months that followed Marcie would go monthly to UT Southwestern in Dallas for breathing tests since she was in two different drug trials in those first 3 yeas after diagnoses. In one of the rooms where the breathing test was done was a copy of a picture like this - but it was not colored in - a copy was given to Marcie and she colored it in -

xxx

All PALS and CALS must remember NEVER GIVE UP !

xxx

ALS is awful - for not only the person with ALS but their family members and friends but we all must NEVER GIVE UP - God has always been in our lives but especially during the past 15 years God has been with Marcie and our family - without God we never could have made it - we do not understand this but we have learned to accept it - it is all in God's plan for our life. We are praying for a cure and a miracle to put a stop to ALS forever.

In some ways the past 15 years have been so long but in other ways it was like yesterday -

So to all PALS and CALS - NEVER GIVE UP ! ! !

Ice for a day !

2009-01-05T22:31:00.004-06:00

Many of our trees were covered with ice today - Saturday it was 80 degrees - today it was freezing - BUT that is Texas for you - hot one day ice the next - or the next day ! Tomorrow it will be warm again - I bet!

It did look so pretty on the trees - it was not on the roads so that was OK!

Avon Calling !

2008-12-07T12:02:00.010-06:00

I got a call yesterday from my "Avon Lady" who is also my friend and a Diaper Darling.

She had been at my house last week and saw our "little TV" in the den. Our big TV "popped" this past summer and fearing it might catch on fire we trashed it.

Not ready go get a new one I took the "little TV" from the sun room/ play room - not very big but it works. You can not see it from the table so we would have to use TV trays if we were watching TV - about 3 ft. from the TV - and eating.

Anyway she called me yesterday to tell me she had a surprise for me - when I ask what it was - she said if she told me it would not be a surprise and could I come by and get it or she could give it to me at church today. Wondering what in the world it was - as soon as I could I headed to her house.

She was almost laughing with excitement when I got there - showing me into her den there on her couch was a TV - much bigger then the one we had in our den. It had a tiny purple bow on it - she said it was for us ! I was laughing - that was so funny!

I told her we were looking at flat screens but just had not decided on one yet - she said this would work until we had time to get our new TV and then I could " up grade" and use this bigger one in the sun room / play room - she did not want it back.

Her husband put it in the van and I was laughing all the way to Target - where I was headed from her house.

Living with a family member having ALS - I just do not have much to laugh about. But living with a family member with ALS I have learned to accept what people do for us from their heart. People always ask us what we need but when people see what we need - and just give it or do it it means so much more. We can buy a new TV - but finding the time to go shop for it is hard but we will get a new TV at some point. We are so blessed by the many people who have helped us in one way or the other over the past 15 years that Marcie has been DX with ALS.

So yesterday I had a good laugh and now we have a TV we can actually see from the dinning room and the kitchen - - - and my grandsons can have their TV back in the play room to play their games on - and my Avon Lady did something from her heart !

So thanks Avon Lady for your friendship and your love !

It was so warm in Texas on Thanksgiving Day...

2008-11-28T09:02:00.010-06:00

we ate dinner outside with family and friends - only bothered by one bumble bee that must have liked the sweet potatoes !

We even had a fire going just for fun !

A visit with Ben, Savannah, Ethan, Drew and Suzanne

2008-11-10T20:59:00.003-06:00

I went to see the kiddo's today- I can no longer call them babeis - I had not seen them in such a long time but as I told Suzanne - it is like I see them very often since I read her blog after every new posting -

Ethan is walking, Drew and Ben are trying to walk taking a few steps now and then. Miss Savannah is talking -saying works and making MOO noises like a cow and meaning it to be MOO like the sound a cow makes.

They are the friendless little people - they had not seen me in who knows how long but they gave me hugs like I had seen them yesterday -

So much fun to just sit back and watch them play -

They are such sweet, happy and healthy children to have started out so small - good parenting from Suzanne and Joe and as Suzanne said also with the help of the Diaper Darlings who obey the strict rules of when not to go love on those babies -

A true sign of fall in Texas!

2008-11-07T22:30:00.009-06:00

The leaves on the trees in my back yard are all turning red, orange, yellow and brown mixed with a few green leaves - the leaves are so colorful - soon they will all turn brown and fall to the ground.
When I was a child, growing up in Waco Texas, my parents had a huge pyracantha bush in the front yard - the berries were orange and red so a few years ago I got one and put in my back yard. It reminds me of my child hood.
The berries are so heavy on some of the branches they are pulling the branches down.

Jr. High Football game

2008-10-14T17:13:00.009-05:00

It has been several years since I attended a Junior High football game. When my oldest daughter was in the 9th. grade, which was still Jr. high then, she was in the pep squad so we attended every game that year. When Marcie was in the 9th grade she was a Cheerleader so we attended every game that year. And when my son was in the 7th, 8th and 9th grades we attended every game during these 3 years - but that was a long time ago - since my kids graduated from high school in 1986, 1989 and 1994.

But last night we all attended a junior high football game to watch my oldest grandson play football. I had forgotten how 7th. grade boys could be so different in height - - - note 73 and 69 are both 7th. graders and standing on flat ground.

We ventured to this same football field a few weeks ago to watch my grandson as he played his trumpet with his Jr. High band when they play at half time with the High School band - the stadium was very handicap accessible so we ventured to the stadium again last night and we hope to go one more time before football season is over.

I learned - actually from Suzanne since she caries all her 4 babies stuff in a back pack - to get a back pack. So I got a back pack with lots of zippers and put labels on all the different compartments so I would not forget what was where. So I had all the medical supplies I would need just in case I needed something while we were there. The backpack worked great so I highly recommend it it you deal with a wheelchair and medical supplies you just might need while away from your home or van.
xxxxxxxxxxxxxxxxxxxxxxxxxxxMy Backpack

This is the Bible God's written word!

2008-10-11T08:46:00.005-05:00

Savannah xxxxDrew xxxxBen xxxxEthan Steece

The "Diaper Darling", and as my grandson said "Diaper Dudes" meaning the grandpa's who go, are back on a regular basis. We did not go on a regular basis this past summer since the Stacee's were traveling and they had company in to visit them.

So now the Diaper Darling and Diaper Dudes are getting to love on these kids a couple of days a week for a few hours and some even go on Sunday mornings. Even thought we did not go on a regular basis this past summer some did go over just for fun.

I wanted the kids to have a Sunday school class on Sunday morning while Joe and Suzanne were able go to church so the Diaper Darlings will have Cradle Roll class for the kids on Sunday since they are unable to leave their home from now till April because of RSV - a respiratory disease that could effect the kids since they were born 2 months early.

They are looking at Bibles in these picture - or in the case of Ben he is eating his Bible - during the lesson the Diaper Darlings sing songs about Jesus and show them objects that go along with the songs and the lessons.

Ben

Ethan

Savannah

Drew

Thanks to Jody and her husband Lee for going on this first Sunday morning in October and for taking these neat pictures.

And thanks to Leslie and Sue W. for getting the songs and the props to be used in the lessons -

Suzanne's blog: http://thelifeofsuz.blogspot.com/

Where was this picture taken?

2008-09-27T20:45:00.005-05:00

For the past 15 seasons I have been here - I have done so many different things here -I worked 5 days a week, 15 years ago, in the summer, Monday - Friday, when school was out for the summer-then as the years went by I cut back my hours - a little more each year - now I only work one afternoon a week for a few hours on Saturday.

I take tickets at the Picnic Pavilion on Sat. afternoons just for fun.

This is my team + 2 others who were not there today -

The weather was a little hot today - no wind at all - but it was nice being outside with my friends.

Thanks for visiting my blog?

2008-09-25T22:20:00.006-05:00

This is what some of the trees in my back yard look like today in Texas but in a few weeks they will start changing colors - I love the fall when all the leaves turn different colors.

And this is one of the trees in the front yard.

Helping to form yet another team to Share the Care for Quads

2008-09-22T22:48:00.004-05:00

Today I talked to the coordinator of Tina's Share the Care team - helping her to get all the forms in order, talking about having the main meeting to organize the team, to have back ground checks run on all the volunteers, etc... It is always a good idea when you are having people into your home you do not really know to have back ground checks run - it is done at many church for those teaching the children.

And you must have very strict rules about hand washing and sickness being brought into a home with one new baby let alone 4 new babies. And only people coming in who are on the scheduled.

Tina and her coordinator will have their group meeting soon to start her team - so all will be in place when Tina gets to start bringing her babies home.

If anyone reading this needs to start a Share the Care team for multiples or for a single person needing help for medical needs just ask and I will be glad to help you get started.

It is very easy - but it does take some coordinating at first -

Check out Tina's blog about her quads:
http://mcleanpartyofeight.blogspot.com/

Another team of "Diaper Darlings" to Share the Care

2008-09-20T14:54:00.005-05:00

Three of the Lemonovich quads are home - John & Carrie's team - also named the "Diaper Darling" are helping care for 3 or their 4 quads - Elizabeth, John and Claire- as well as their young son Luke - they live in PA. They hope Kate will be home with them soon.

Read more about John & Carrie and their quads on Carrie's blog: http://www.alotoflemons.blogspot.com/

Carrie's sister, Susie, who I have been in contact with by email and phone is coordinating her team of "Diaper Darlings".

"Guests" from the hurricanes

2008-09-08T22:46:00.006-05:00

On Monday Sept. 1, 2008 the Family Life Center at North Davis was all set up and ready to receive 140 "guests" from Louisiana as they arrived needing shelter from the hurricane. We were one of 3 shelters opened in Arlington to care for these people who had to leave their homes since the hurricane was headed their way. Three years ago to the day our church opened its doors to welcome our "guest" when Katrina hit. That time our "guests" stayed several weeks - this time our "guests" only had to stay from Monday afternoon till Wed. morning.

But now we may be doing it all over again with this next hurricane coming - we were told Sunday morning to be ready - we will be opening our doors again if people need our help this time from the Galveston and Houston areas -

Both times I helped - it is so nice to be a member of such a giving church -

More Quads !

2008-08-27T18:56:00.008-05:00

Another set of Quads were born on Monday August the 18th. in Ft. Worth - three boys and a girl.

Check out McLean, Party of Eight blog:
http://mcleanpartyofeight.blogspot.com/

Suzanne S. and I went to visit Tina a few weeks ago to talk to her about setting up her Share the Care team for her new babies.

Carrie's quads born in PA. June 24, also at 26 week, will start going home soon -

See her blog for more information about her babies: http://www.alotoflemons.blogspot.com/

I have talked to Carrie's sister by phone and email about setting up her Share the Care team for their quads -

Diaper Darlings Party

2008-08-12T13:36:00.018-05:00

Sunday Aug. 3, 2008

Ben knew to get rid of that tissue paper fast. Savannah started chewing on her bear as soon as she got it out of the sack. Yes - they are washable !

Drew - Savannah - Ethan - Ben
I sewed their names on their bears when I made them.

And now on to the Diaper Darlings party !

xxxxxxxxxxxxxJoyce xxSuexx Libbyxx Tempexx Lacyxx Linda

The first four are 4 of the 6 Captains for this team. Lacy is Suzanne's best friend from childhood and then me - the coordinator for this team of Mom's, Grandma's, Grandpa, and Great Grandma. Just think of all the "adopted" grandparents these kid's have! And one Diaper Darling will have her first child in March.

Below the pictures you will find the story of the Diaper Darlings with links to the Share The Care web site. It was so much fun having all of us together at one time and loving on those kiddo's. And yes I made the cake for this party also.

You did not have to worry about stepping on a child - they were never put down !

I like to I write about my daughter Marcie and how ALS has affected her life and my life - I also write about Share the Care – a wonderful way to share the care to others who may need a few extra helping hands at one time or another. It could be helping a family who has sickness in their family as my family does or helping a family who has been blessed with multiple babies all born at the same time. In both cases the families can do without the extra help but to those who lend the helping hands – they are the one so blessed.
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I have helped a lot of families form Share the Care teams – for people who have a family member with ALS (Lou Gehrig’s disease) or as I have done in the past few months - help families of multiples form care teams for their new babies.
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I like giving back to others that which was given to me!
xxxxxx
I did not understand this until I had the opportunity to coordinate the Diaper Darling.
xxxxxxx
Ten years ago I was teaching preschool and a group of people gave me some extra helping hand for 5 years – you can read all about this on the Share the Care web site http://www.sharethecare.org/
and read about Marcie’s Guardian Angel Team at http://www.sharethecare.org/pages/yourstories/stories/ystories_marcie_gibson.html - or look to the right of the page and you will also find the link: Share the Care for Marcie / Steece Quads.
xxxx
I finally understood 9 years later what people had told me for the 5 years they help me – they were the ones blessed by helping me and Marcie.
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The Diaper Darling – the “friends” who give Suzanne extra helping hands – are all Volunteers – mostly grandma and grandpa – some even great grandma – a few young mothers. The Steece quads have given the Diaper Darlings such great joy! Going to the Steece’s house is so much fun. I do not get to go nearly as often as I would like since I do care for Marcie at home - but all the Diaper Darling have told me many time what a joy it is lending extra hands to love on those babies and get loved back. And the Diaper Darling are so appreciated by Suzanne, Joe and their families – most living out of town so we are their “in town” family.
xxxxxxxxxxxxx
I say all this so everyone reading this understands being a part of this team is so neat. God gave Suzanne and Joe 4 babies all at one time because HE knew they could care for them alone – but HE gave the Diaper Darlings to the Steece’s because HE knew the Steece quads had so much love to give to others !
xxxxxxxxxx
If you want to know more about how to form a Share the Care team just ask me - leave me your email address I'll be glad to help you.
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We had a GREAT party on Aug. 3 – to celebrate us as Christians being able to share the care – and isn’t that what God’s people do!

Visit Suzanne's blog for more info and pictures:

http://thelifeofsuz.blogspot.com/

Drew, Savannah, Ethan and Ben Steece are now ONE year old !

2008-08-08T22:11:00.009-05:00

The Steece quads had a birthday last Friday - not one but two parties - one on Sat. for family and friends and another on Sunday afternoon for the Diaper Darlings - all the Volunteers and their families who have helped Suzanne and Joe since the kiddos all got home from the hospital last October -

I have pictures from both parties but I am waiting for Suzanne to post more picture's of the birthday party first -

http://thelifeofsuz.blogspot.com/

I did go with her and the kiddos last Wed. to Ft. Worth to go visit Tina - she is in the hospital now on bed rest waiting the arrival of her quads - it was very interesting as we maneuvered our way from the parking garage to the Dr. office who delivered her quads last year, to the floor of the hospital where Suzanne spent maybe 6 weeks before her babies were born - that is where were found Tina - that is where I first met Suzanne - and then as we were leaving - we stopped by NICU were her kiddos spent the first few weeks of their lives.

As Suzanne said - I am used to this but you are not -everyone we passed said "four" or fell over each other getting out the door of a room to see FOUR kids in a very long stroller -

One little boy announced - "that is to many babies" -

It was a very interesting outing for me - I loved it - the kids were great ! And we were gone about 3 hours.

My husband was at home with Marcie or I could never have gone.

We will help Tina set up a Share The Care team for her quads.

posted Sunday Aug. 10

2008-08-08T07:55:00.041-05:00

Happy 1st. Birthday to

Drew, Savannah, Ethan and Ben Steece!

I made the caterpillar using jumbo cup cake pans.

The theme of the birthday party was "bugs"!
I used regular and mini size cup cake pans and made them into bumble bees and lady bugs.

Lots of mini bumble bees and lady bugs!

Ben xxEthanxx Savannahxxxxxx Drew
Suzanne and Joe

Suzanne is taking a big #1 candle out to each cup cake before giving them to the kids to eat.

Drew was born first

Then Savannah

Then Ethan

m
mmmmmxxmmm

Then Ben --- all born only a minute apart

The kiddos were striped down to their diapers and taken outside for their birthday cake - we sang Happy Birthday 4 time. Each child is an individual and deserves his/ her own Happy Birthday song to be sung to them. Singing first to Drew, Savannah, Ethan and then Ben in their birth order.

I think it was about 105 degrees in Texas or more on the day of their birthday party so we were not outside for very long - just long enough to watch the kids "play" in their birthday cup cake, lick their fingers and then we all went back inside to the air conditioning.

See her blog for more pictures.

http://thelifeofsuz.blogspot.com/

Happy Birthday Danielle and Deanna

2008-07-18T17:23:00.025-05:00

posted: July 19, 2008

These little girls - now young ladies - were so much a part of our lives for so many years -even though they do not live on our same street nor in our same city any more they will remain a part of our lives forever.

Sitting in the same rocking chairs in the same house (mine) just taken 17 years apart.

xxxxxx

xxxxxxx

xxxxxxSummer 1990xxxxxxxxxxxDanielle and DeannaxxxxxxxxxxSummer 2007

xxxxxxxxxxxxxx

So you are having a birthday - and you will be 20 years old.

Happy Birthday Danielle and Deanna !

xxxxxxxxxxxxxxxxxx
Deanna and Danielle - we kinda adopted them when they were born - their grandparents lived in Ft. Worth and Lubbock but there was only one house between their and ours so we saw them just about every day- they stayed with us, they slept with us, they ate with us. Such fun to watch them grow. They were in my daughter's wedding when they are 3 years old and one day and they did great walking down the aisle.

xxxxx

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxJuly 1991
xxxxxxxxxxxxxxxxxxxDrewxxxxDaniellexxx Deanna

xDeanna will be going out of state in the fall to attend an art school while Danielle will remain in Texas. Thank goodness for computers and free calling on cell phones - this will be the first time they have been separated.

xxxxxxxxxxxxxxxx
For their graduation from high school - but I gave it to them a year late - I made them each a scrapbook of all the pictures I had taken of them since they were born till last summer when they came for a visit.
xxxxxxxxxxxxxxxxx
Here are 3 of my favorite pictures I found of my kids and the girls when I was making the scrapbooks:
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My older daughter and her now husband going to a Halloween part at the Bible Chair at UTA in Oct. 1989. xx

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Marcie and the girls at Six Flags - a place I took them ever year from the time they were about 4 till they move when they were in - I think - the 6th. grade - This was Dec. 1992
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My son and the girls after Arlington's 4th. of July parade - the BIG SAM Bell with them in July 1993. The girls were on the float for the "Mothers of Multiples" and my son was a bell guard for his high school.

And by the way - their Mothers birthday is today also SOOOO Happy Birthday

to all 3 of you!

In Memory of my friend Terry

2008-07-18T15:28:00.006-05:00

I wrote this 3 months ago - I did post it but then I took it off for some reason - I have seen Janice a couple of times since the service for Terry and talked to her more than I have seen her - but we do have a trip planned to go to Six Flags when it get cooler - say Sept. when the crafters are there. I think of Terry and Janice so often.

Terry and Janice and their dog Josie -

at the Walk to D'feet ALS

in Oct. '03in Waco, Texas -

my home town.

Terry and myself in Lubbock, Texas at the Walk to D'feet ALS in Oct. '01.

xxxxxx

My friend Terry died Saturday night, April 19, 2008 from ALS. I was called 5 minutes after Terry passed away. I had talked to Janice that morning and she told me not to come - she would need me more later so I did as I wished and stayed home - not going to the hospital.

I met Terry and Janice about 10 years ago - soon after Terry was diagnosed with ALS - Lou Gehrig's disease. We met at an ALS support group meeting in Arlington and quickly became friend. Both Terry and Janice had a great out look on life, always joking. Janice tried to raffle Terry off at several fund raiser for ALS but no one would take him. Although she never really would give him away.

xxxxxxxxxxxxxxxxx

One weekend she gave Terry to me for a day - Janice and Terry picked my up and she took Terry and I to DFW airport and we flew to Lubbock for the Walk to D'feet ALS which we were on the committee for - being on the newly formed board of the ALS Association North Texas Chapter. I had friends who met us at the airport and took us to the walk site and at the end of a vary long and tiring but fun day my son, Brad, picked us up at DFW airport on our return trip. On our return trip Terry pointed out the land below -- describing the different things we could see from the air and why they were that way.

For two years Janice and Terry went to Waco with me, monthly, as we organized the Walk to D'feet ALS in Waco. If Janice could not go Terry would go with me. Such great friends. Always there when I needed them. Terry was my computer buddy - coming over to help me with my computer when needed. Making DVD's to be used at our Kick Off events for the Walks and helping me with all sorts of computer problems. Terry was the only person with ALS Marcie ever wanted to meet - which she did - several time as he helped me with my computer at my house. (well, come to think of it she may have met Dave - another friends with ALS who had been to our house). I will miss his great smile and his laugh.

xxxxxxxxxxxxxxxxxx

Last time I saw them they were eating ice cream at Costco - when I bent down to give him a hug I hit the controls of his power chair and moved his chair - he said that happens all the time and we had a good laugh from that.

xxxxxxxxxxxxxxxxxxxxxx

My dear friend will be missed by many people but especially his sweet wife Janice and myself. But he is smiling now and walking and his fingers are straight and always will be.

Written Monday April 20, 2008

Terry's service was today - Wed. April 23.

It was said at his service that ALS is not only Lou Gehrig's disease - it is Terry's disease , Marcie's disease, Janice's disease and Linda's disease (myself) etc... meaning ALS not only effects the person whose body ALS takes over but every member of the family - and this is so true. ALS is a monster disease with no cause, no cure and not even a treatment!

The Steece quads are almost a year old.

2008-07-12T21:04:00.006-05:00

Savannah, Ethan (solid blue), Drew, (stripes), and Ben are almost one year old - I got to spend the afternoon with them today - they are so precious - each has his/her own personality -and they love every one -this was taken just before they sat at their table to have their supper - real food - real baby food that is - Ben could not get enough and Drew - he ate since I offered it to him - Joyce was feeding Savannah and Ethan -

The boys are crawling and Savannah scoots on her tummy. They are trying to pull up - Ethan is very close to doing so with Drew right behind him. I am so blesses to have these 4 Gifts from God in my life and to know and love their parents, Joe and Suzanne, like my own kids.

Another set of quads.

2008-07-10T15:20:00.003-05:00

I am connected with yet another family who just had quads - Carrie and John live in PA. I am working with Carrie and her sister to form another team called "Diaper Darlings". The same name we called Suzanne's team.

Their quads were born on June 24th. at 26 weeks - Please pray for these babies as they continue to gain weight. The smallest is Kate, she now weighs 1 lb, 11 oz. as of this posting today.

http://www.alotoflemons.blogspot.com/

Gas Prices in Texas

2008-06-27T22:40:00.004-05:00

I had to fill our mini van tonight with gas -it was very empty- at $3.86 cents a gallon it cost $77.00 to fill it - I do not usually fill the van my husband dose but it was so empty and we try to keep it filled if we need a fast trip to the hospital or the like - so tonight he was busy and Marcie as sitting outside with him - when I got back home I showed her the ticket - her eyes got so big.

So that was my adventure for today -

Marcie's computer

2008-06-09T12:37:00.003-05:00

Here is the web site about Marcie's computer that reads the retina of her eye - the computer she uses is called ERICA and made by Eye Response Technologies. It will speak and she can control things in her room like her TV, VCR, DVD, radio, she can email and send Instant Messages - You can see her computer and how it is attached to her power chair in this picture to the right of this post.

http://www.eyeresponse.com/Disabilities/

Story written for "Banding Together for PALS" - wanting to raise awareness for ALS -

2008-05-30T16:32:00.023-05:00

Written Sunday, March 16, 2008
Marcie was diagnosed with ALS when she was only 23 years old

xxxxxxxxThis is when it first started...

xxxxxxxxxxxxxxxxFall of 1992
xxxxxxxxxxxMarcie was a junior in college.
xxxxxxxShe had just turned 22 in November
Her arms were failing her as she cheered and tumbled.
-----------------------
What if your daughter was 23 years old, a senior in college, about to be out on her own for the first time?

Looking forward to try outs for the Dallas Cowboy Cheerleaders and she learned she had ALS (Lou Gehrig’s disease).

A disease which has no treatment or cure and only 10% of people diagnosed with ALS live more than 3 to 5 years.

Marcie’s life and the life of her family came to a dead stop!

That is what happened to my family and to my daughter, Marcie. A school leader and cheerleader in junior high, high school and the 2 colleges she attended. She had a very active life – running track, being a cheerleader and gymnast herself and then teaching young children gymnastics and coaching young cheerleaders in Arlington.

xxxxxxxxxxxxxxxxxxxxxAugust 1994 xxxxxxSummer of Marcie's diagnosis

Her elbows started hurting and her arms would not hold her up as she tumbled – something was wrong. Fourteen months later in January of 1994 we got the diagnoses - our 23 year old daughter had ALS – a disease which usually strikes in mid life – 55 is the average age for ALS – not 23. Yet we are learning more and more of young people being stricken with ALS. God has blessed Marcie and our family since we have been taking this journey for 14 years.

Marcie is paralyzed and she cannot talk and has not been able to talk clearly for maybe 3 years. On her 36th birthday she gave herself life by having a tracheostomy – on the true day of her birth - and being connected to a ventilator which breaths for her in order for her to live. We use a letter board and a computer to communicate with her. ALS takes everything but your mind and your spirit to live.

We use a letter board when she is not using to her computer. We must point to one letter at a time and she will blink at each letter until a word is formed. The computer has a camera mounted under the screen which is mounted to her wheelchair – this computer reads the retina of her eyes. This computer has opened her world to a little independence.

I stopped teaching 5 years ago to be at home with Marcie. She has not been left alone in 10 years – a friend, her Dad or I are always with her. Her dad is here at night and on the weekends so I do not do this alone. And friends do come by to visit but for the past four years her Dad or I are always here with her, even if she has a friend here. Emergencies happen and we do not want her friends to be responsible – at this point usually it is an equipment failure we are dealing with. But equipment is helping her to live (the ventilator).

Marcie is now 37 years old and living with ALS for 14 years. In her room she can control her TV, VCR, DVD and her radio. She can do Instant Messenger and send e-mail – she can communicate with her friends and family using her computer which she has had less than a year. She found, ordered and paid for all Christmas gifts for her family using her computer.

So that is her life and ours. I often wonder what her life and ours would have been without ALS in our life. But that was just not in God's plan for our life.

I think she would have been married, maybe had children and a perfect house with lots of hand made things inside. Marcie used to sew; making her own clothes, and did all kinds of crafts. Painting a little before ALS took the use of her arms and fingers.

ALS does not only affect the person with ALS but the entire family and all her friends. She told someone once she was “stuck between my parents” and she is. ALS has taken away a normal life as she should have had it. Our life is caring for our sweet girl, Marcie, and we are glad we have the ability to do that at home.

We have no idea why Marcie has ALS – but we do know it is all in God’s plan and with Him we live.

xx December 2003

March 2008 / Written by Linda / Marcie 's mom / Arlington, Tx

"Banding together for PALS" blog for stories of others living with ALS:

http://bandingtogether.blogspot.com/

Lou Gehrig's Disease book

2008-05-26T12:21:00.004-05:00

If you want to buy the Lou Gehrig's Disease book with Marcie, Lou Gehrig and Stephen Hawkins on the cover here is the web site - a very easy to read book about ALS (Lou Gehrig's Disease) which should be in most public school library's on the junior high and high school level.

http://www.hardcoverdeals.com/rel/v2_viewupc.php?storenr=334&upc=0766015947&affnr=-1

JOURNEYS WITH ALS - the book written in 1998

2008-05-25T21:14:00.016-05:00

This story was written in March of 1998 for a book called Journeys With ALS written by PALS (People with ALS) and CALS (caregivers to people living with ALS) living with ALS - the book was put together by David Feigenbaum and his family.

This is Marcie's Story - written by me - her Mom -

Arlington, Texas - In the spring of 1991, Marcie tried out for the Dallas Cowboy Cheerleaders at Texas Stadium. After several weeks of tryouts she made it through three cuts. For the fourth and final segment, she had to makeup her own dance and costume. Unfortunately, she did not make the team. On the critique sheet the judges told her she needed more dance lessons and to try again in a year or two.

At that time, Marcie was a sophomore and a cheerleader at Abilene Christian University. She decided to wait two years before trying out again. Her goal was to improve her dance skills. She worked very hard, taking dance lessons as she completed her college classes, now at the University of Texas in Arlington. She continued cheer leading. Marcie was 20 years old.

In the fall of 1992, Marcie was teaching gymnastics to young girls. Her elbows began to hurt but she figured it was because she was having to "spot" the girls as they tried to tumble. She was also in the UTA Dance Ensemble. During practice her arms would shake when she held them up and then they would "float down". Her left are floated down a little faster than her right. And her back would quiver along her spine.

The following summer, Marcie, now 22, could not perform any tumbling tricks while attending cheerleading camp in San Marcos, near Austin. She just kept falling on her head. She had been a competitive gymnast since she was about 9 and a cheerleader in junior high, high school and college. She did not understand her weakness: her arms were simply not working for her.

First Diagnosis: myasthenia gravis
In August of 1993 we took Marcie to a family doctor who told us that, for one thing, she was not eating correctly. Over the next month he ran all sorts of tests and ruled out the "bad" diseases. But she still didn't know why she could not hold up her arms; he could not pinpoint the problem. We were sent to a neurologist who performed more tests and concluded that Marcie has myasthenia gravis. He put her on some medication, but this made her feel worse and she took herself off in within a month.

In the fall we went to a seminar sponsored by the Muscular Dystrophy Association (MDA). There we talked to Dr. B about myasthenia gravis. He told us he would like to see Marcie in his office in Dallas. Since the holidays were upon us and we thought she had treatable disease, we waited until after the holidays.
Marcie, her dad and I arrived at the Dallas MDA clinic in January 1994. A medical history was taken and, within 30 minutes, six doctors were in this little room with us looking at Marcie. Dr. B talked to us a little while longer and wanted to run some more tests. He had some free time in the afternoon ans ask us calmly if we could go have lunch at the medical school and came back at 1:00. Sure we could. We wanted to find a answer that day and be done with it.

After lunch Dr. B conducted an EMG, including a nerve conduction test. We were all in the room watching the tests, listening through the computer to Marcie's nerves firing as he pushed the needle into her muscles. Around 4:00 or so he told us he had an idea what it might be, but needed to do a muscle biopsy and a spinal tap to rule out all the other possibilities. He didn't offer a clue as to the illness he thought our daughter had. I was not familiar with a muscle biopsy, but I knew I did not want her to have to go through a spinal tap. However, he explained it was necessary to rule out several things, so in a week we returned for these. He said we would get the results in two weeks.

One week later the doctor's office called for us to come in that afternoon. Since Marcie and I were working, we decided to wait until another day. His office said if we could come in the next day the doctor would wait for us even if we could not get there before 5:00. This should have been my first clue! We were so unaware of the bomb that was about to be dropped on our family.

The next day, with difficult, Dr. B told us that our 23-year-old daughter had ALS. (The night before, her dad told us he had a bad feeling about the upcoming doctor's visit because everything had been going so well in our lives.) The doctor pulled out a diagram of the brain and started telling us about the brain stem and motor neurons and how they worked. Then he told us he felt Marcie has amyotrophic lateral sclerosis, which meant nothing to me. But when he wrote ALS on the top of the diagram, I know what he was saying.

Dr. B told us there was no true test to diagnose ALS; that doctors must first rule out all the other things and what is left is ALS. HE said there was no treatment or cure and asked if we were familiar with it. I looked at Harold and we both said yes. Then her dad started hitting the chair arm and I grabbed Marcie and started to cry. My sweet child just sat there. She had no idea what we had just been told. She did not realize until about 8:00 that evening that she had such a grave illness. Though we had heard of ALS, we didn't realize that was no treatment or cure.

We left the doctor's office in a daze. We had already ask about a second opinion and planned to call Dr. A in Houston in the morning. We called our older daughter and told her to find our son and meet us at our home. That is all we said. They know we had been to the doctor and would not have called them from the car to meet us if the news has not been bad.

That first night at home is still so clear in my mind. I know where we all sat, staring at each other, crying now and then; my older daughter explaining to my 18 year old son about ALS, that there was no cure for it. The phone kept ringing because friends knew we were going to the doctor, but we did not answer it. We let the machine pick up. Finally our neighbor called again. He knew something was happening since so many cares were at the house at 10:00 at night. Harold and I walked over to his house and broke the news. We ask him to call some other friends. We couldn't call them ourselves. They has lost a child at 16 to a brain tumor. In 15 minutes they were at our house.

Ten days later we were in Houston to see Dr. A. After four days of tests he came up with the same diagnosis: ALS at age 23.

A special bouquet for the bridesmaid
We have learned a lot over the past four year. We have learned to never give up! Someday a cure will be found. It could come tomorrow or many years off, but we hold on to hope from God that He will always take care of us as He said He would. In the meantime we live one day at a time.

A neat thing happened last summer when Marcie's friend Lisa got married. For the past three years Marcie has been a bridesmaid in three different weddings. Marcie and Lisa have cheered together in junior high and high school.

At the reception, Lisa talked Marcie into joining the other single young ladies to catch the bride's bouquet. Marcie had not been able to use her arms for three years. Each time she was in a wedding, the flowers were tied to her arm since she couldn't hold them. She didn't want to join the others but Lise talked her into it for the picture. The photographer was ready, Lisa was ready and the girls were ready. Lisa raised her arm to throw the bridal bouquet, looked back and, with a quick turn to her left, walked to Marcie and carefully placed the bouquet between her fingers.

It was a small, light version of the bride's bouquet and the way Lisa gently placed it in Marcie's hand, which was hanging at her side, she was able to hold it. This was the sweetest gesture I had ever seen. I almost cried, Marcie did cry and everyone gave a large collective sigh. All had know Marcie over eight years, since high school and before. They had known her as an active gymnast, popular cheerleader and school leader. And they now saw how the disease was attacking her body.

In November '97, I had a surprise birthday party for Marcie. It was her 27th. I sent out some invitations and told other to invite whomever they wanted. First her cousins came over for supper and then my house was filled with friends and other family members. I counted about 90. The people just kept coming in - children holding balloons that Marcie's sister and brother-in-law had hidden in the car, her doctor and research nurse, Debbie as well as friends from high school and new friends from her Bible study group. Even her college roommate cam. The party really took Marcie by surprise.

Marcie has a 2-year-old nephew named Trent. When he first learned to walk he was told his Aunt Marcie could not hold his hand, and he must hold hers. So now when anyone walk with him he must hold their hand also. Trent loves to sit in his aunt's lap, when someone puts him there, and he sits very still, knowing she can't catch him if he falls. He loves his Aunt Marcie, she was one of the first people he smiles at. He is good for her. Trent brings life into our house and every time he comes over he heads for her room first to give her "a big ol' hug".

Working for ALS awareness
Marcie was in tow drug trials - for CNTF in 1004 and BDNF in 1995. In both she was given the actual drug, but neither proved effective. She as taken extra vitamins since the day she was diagnosed and is currently taking Rilutek, Neurontin and Alloburinol. She also has done water exercises and I do range of motion stretches on her arms and fingers almost every day.

During 1997 Marcie helped promote ALS in several ways: There were stories about her in the Dallas Morning News in May and the Fort Worth Star Telegram in August. About the same time, the ALS Association carried her story in fund-raising letter, trying to make people aware of how this disease strikes even young adults. She was also on the TV news several times in the Dallas/Ft. Worth areas, including an interview at the Ballpark in Arlington during the Jerry Lewis MDA Telethon. In October she was the MDA ambassador at a golf tournament in Arlington, with all money going for ALS research. Marcie also did the TV commercial with Micky Mantel Jr. for the same event. Her story was told again in the ALSA newsletter and her picture appears on the ALS March of Faces Banner.

ALS has affected Marcie's fingers, hands, arms, and shoulders. Her legs are also weak, but she can walk if she is careful. Of course, she can no longer run races or jump hurdles, as she did when she was on the track team, or do back handsprings, as she did for cheerleading. But she can laugh and she is a very loving, caring person.

Marcie has influenced many people. Allie, a 7-year-old in our area, entered a city wide contest called "It Could Happen". Allie told about Marcie and the things she had done before ALS, when she was well. Allie ended the story with how a cure for ALS "could happen".

We truly believe in miracles and that everything happens for a reason. We completely trust in God for guidance and a way to conquer ALS. Now, at 27, Marcie hope to continue to speak out for those who cannot, teaching the world about ALS and that it can happen to anyone, even a healthy young woman of 23 - her age when she was diagnosed in January of '94.

Marcie is one of the youngest people diagnosed with this terrible illness. She is a fighter and she always has been, a very determined and headstrong young lady. And with the help of God, she hopes to be a winner in this battle.

March 1998