Inspired by Brittany

It's true...I have Brittany to thank. As you know, I am running the Boston Marathon this year for Brittany. I am currently raising money that will go directly to NBIA's research lab in California.

I have been running a lot lately (okay, nothing new). But I have more importantly been running faster. When I start to tire, I think of Brittany, unable to walk, talk or even move (except for her arm a bit). I make myself go faster...because I am able.

Today I ran another 5k. I took 35 seconds off my fastest time, clocking a 20:24.

I am grateful for my ability to run...for Brittany.

Please make a donation (however small) for my neighbor (and friend).

And after you donate, be sure to guess an appropriately fast finishing time for me!

You Can Make A Difference....

THE STARFISH POEM

Once upon a time there was a wise man
who used to go to the ocean to do his writing.
He had a habit of walking on the beach before he began his work.

One day he was walking along the shore.
As he looked down the beach, he saw a human figure moving like a dancer.

He smiled to himself to think of someone who would
dance to the day. So he began to walk faster to catch up.

As he got closer, he saw that it was a young man
and the young man wasn't dancing, but instead he was reaching down to the shore,
picking up something and very gently throwing it into the ocean.

As he got closer he called out, "Good morning! What are you doing?"
The young man paused, looked up and replied, "Throwing starfish in the ocean."

"The wise man then asked, "Why are you throwing starfish in the ocean?"

"The sun is up and the tide is going out. And if I don't throw them in they'll die."

"But, young man, don't you realize that there are miles and miles of beach
and starfish all along it. You can't possibly make a difference!"

The young man listened politely. Then bent down, picked up another starfish
and threw it into the sea, past the breaking waves and said-

"It made a difference for that one."

Please donate as I run for Brittany at the Boston Marathon.  You Can Make A Difference!

Give Said the Little Stream

There is a children's song entitled, "Give Said the Little Stream," that I have loved since I was a child. I was sitting with Brittany today and thought of this song. It's message, though simple, teaches such an important message:

We are never too small to make a difference.

We can see how a simple little stream, although weak, can give so much life.

Listen to the song by clicking here.

“Give,” said the little stream,
“Give, oh! give, give, oh! give.”
“Give,” said the little stream,
As it hurried down the hill;
“I’m small, I know, but wherever I go
The fields grow greener still.”


Chorus
Singing, singing all the day,
“Give away, oh! give away.”
Singing, singing all the day,
“Give, oh! give away.”


2. “Give,” said the little rain,
“Give, oh! give, give, oh! give.”
“Give,” said the little rain,
As it fell upon the flow’rs;
“I’ll raise their drooping heads again,”
As it fell upon the flow’rs.


3. Give, then, as Jesus gives,
Give, oh! give, give, oh! give.
Give, then, as Jesus gives;
There is something all can give.
Do as the streams and blossoms do:
For God and others live.


Will you give, oh! give! And help make a difference in the lives of the NBIA children?

Girl's Night!

We don't mess around...when Brittany's parents leave for their Christmas work party, Brittany invites her friends over for a rockin' night!



A serious game of Flip Uno, munchies, boy talk and music! Whew...I am tired.

I love these girls. Thanks for letting me in on all of the fun.

Running BEE-CAUSE

You all know I love to run. I will run in any condition.

It can be pouring rain.

It can be totally hot and humid.

Snowing? No problem.
Windy? Bring it on.

I will run if I have a sniffle, a cough, even a fever.

I ran while pregnant.

I ran with a crack in my heel.

I run when my hamstring hurts.

I will run fast, slow...any pace if you will run with me.

Hills? I will do 'em.

Rocks? I will climb them.
I will run while on vacation.

I will run in the dark...before the sunrises or the sunsets.

I will run around a track.

I will run on a treadmill.

Tired? It doesn't matter.

Achy? I will pop an Advil.

I love to run.

I have always run for me. But this time I am honored to run for Brittany's Cause, our Queen Bee (to see the story of the Queen Bee read about it on the left).

You know, Brittany loves life. She will live in any condition.

Her ability to walk taken.

Her voice is gone.
Unable to swallow food.

Sleeping is difficult.

Stomach can ache.

Coughing a chore.
Breathing sometimes impossible.
Sight decreased.

Ongoing pain from muscles that tighten.

Her life totally dependant on her loving parents.

And yet Brittany lives...with joy...in any condition!

Feel joy this Christmas season by giving. Please make a generous donation to NBIA...they need you.

Pepsi Shepsi..just be a Giver.

Don't get me wrong, I love me some Pepsi. I am just mad at them right now. Each year Pepsi picks charities to donate large sums of money to...and after much effort, NBIA didn't get picked! Boo!

But why do we need Pepsi anyway...(besides the fact they have millions of dollars to give)?

I mean, can't we all be givers?

I know we all want to be givers.

What's our hang up?

1. Too busy?

2. Too lazy?

3. Too Scroogy (I made that word up...Garth is in the Christmas Carol so it just popped in my mind)?

Why not start the giving now?

'Tis the season...to give and all.

If we all give a little...it can make a huge difference!

Stitches

Brittany gave her parents a really cool present last year from Christmas. After getting Sandy out of the house to run an errand, we had a "modeling" session with Garth behind the camera, taking pictures of Brittany. She picked her favorite one and her gift was underway. We sent the picture to a company that stitch together a blanket that looks exactly like the photo. Pretty amazing right? By taking multiple colors of thread, Brittany's image was placed perfectly on a cozy blanket. For years to come, it would make it possible to have Brittany wrapped up, together with mom and dad.

I have been thinking about this seemingly impossible task...taking random pieces of colored thread and making something beautiful. I have some red yarn I purchased years ago upstairs in my craft drawer. Once in awhile I pull some out for random projects or simply to tie something together. But that is pretty much the only use that lonely ball of yarn gets...you see I don't have a craft gene.

But I have some pretty crafty neighbors on my street that do.

One talented friend, Suzi, started a "Knit Night," bringing hosts of woman together to create the most amazing things...out of simple balls of yarn. They come together to share ideas, teach one another new techniques, and create what I think would be impossible (with just one ball of yarn) into things quite miraculous.

When we come together, we have the ability to make simple pieces of thread, into masterpieces. Right now, NBIA is a simple thread. It is so rare, most of us haven't even heard of this debilitating disease, including doctors! By coming together, we can create a miracle in Brittany's life and those other children who suffer with NBIA and help lead to a cure.

It is a simple stitch, followed by another and another that leads to the perfect cozy blanket.

Add your simple donation and together we can find a cure....one stitch at a time!

...for Brittany.

"Faith makes things possible but not easy."

I love being with Sandy when she is talking with one of Brittany's many doctors (and there are a lot of them...just add "gists" or "pists" to something like, pulma, neuro or thera and they have been there). She tells them what is what...

...for Brittany.

She is the best mom for Brittany and fighter of NBIA. She keeps lists of medications, lists of surgeries, lists of symptoms, takes pictures, records coughing, breathing, sleeping patterns. She gives oxygen to Brittany when needed, suctions, lifts her to use the bathroom...and if you can believe it...her house is spotless! All this organization...

...for Brittany.

She is a fundraiser for NBIA. She attends meetings, events, seminars. She is on the phone fighting the fight...

...for Brittany.

But what I love best about Sandy is she is Brittany's mom first and foremost. She is with her at night when she cannot sleep. She is at her side 24-7 to give Brittany her many long feedings, to wipe her chin, to keep her from "biting (her dysontia causes her jaw muscles to clamp down on her tongue)", to make her laugh, to keep her happy, and to even tell Brittany to stop being so sassy (and Brittany still has sass)...

...for Brittany.

Both she and Rich continue to give Brittany experiences such as trips to Disneyworld, California, visits to Texas to see her Grandparents, and cruises. They are not sitting idling by waiting...they are living.

...for Brittany.

And with their faith, they know anything is possible. No, not easy. Not one bit. But worth every bit of hard...

...for Brittany

Candyland...Brittany Style

When I come over to Brittany's house, we love to play Candyland. I think we both know it is a game for youngins'.

But we love it so...Brittany and me.

It's our game.

It will always be our game.

We have a ritual you know. I push her wheelchair into the living room where all of the games are stored. I place the game right under her arm so she can keep hold as we walk back together to the kitchen table. I set up her wheelchair so I am always sitting on the side where her neck bends over due to her scoliosis...she can see better that way (and she can watch me to be sure I don't cheat).

I do all of the game piece moving, card flipping, exciting play by play conversation and such.

Brittany picks what color gingerbread piece we will each be and who goes first (she always lets me go first).

Then we start some serious game playing.

And we make bets.

Today the bets were as follows:

Game 1- Winner receives Brittany's entire DVD collection (Brittany won)

Game 2- Winner receives Sommer (Brittany won...I will miss you sweet daughter)

Game 3: Winner must go around house doing the chicken dance..with the door open so neighbors can see (Brittany won...and she was actually laughing at me).

Game 4: Winner will receive Rich's (Brittany's Dad), favorite office chair (I won! And then proceeded to move the chair to our game table and started spinning around. Brittany then insisted I put it back).

Game 5: Winner will receive Joey the Dog (Hey Sandy, I will bring him over later...Brittany won).

And then with my Candyland voice, I lulled Brittany into a deep sleep.

It was a great day.

Please consider making a donation to the Boston for Brittany fund. It will benefit one amazing girl (and all of her friends fighting NBIA!)

If Ye Know These Things, Happy are Ye If Ye Do Them

I had a wonderful experience while with Brittany a few weeks ago. Earlier that morning she had to have a bone scan requiring her to remain completely still. Brittany's Dystonia doesn't allow her to do that. Her mother had to administer a medicine to aide in relaxing her...

When I arrived, she was fast asleep in her chair, looking amazingly peaceful.

After chatting with Sandy and catching up on our week, she headed out to run a few errands. I pulled a chair up next to Brittany as she slept waiting until 11 when it was time to feed her. As I fed her, she stirred just a bit but continued to go in and out of her sleepy state.

When I finished giving her the most deliciously prepared meal (consisting of a rich vanilla like formula), I began talking with her. As I talked (and she was forced to listen to me...love ya Britt), I glanced down at her feet. In her thick cozy socks were two crippled suppenated feet. I remembered her mom telling me how she received the most amazing massage a few days earlier, relaxing Brittany.

I immediately went to my car and grabbed my lovely smelling lotion. I sat in front of Brittany and asked her if I could give her a little foot massage. She lifted her little hand to her right knee, her way of saying yes.

I took off her sock and began to rub her foot. As I did so, I started thinking about our Savior and how he taught his disciples in John 13 about love and serving one another. I envisioned his healing power and that one day, Brittany would be made whole again. Her feet would return to their perfect form, she would walk, she would run, she would be whole.

It gave me pause as I thought about my daughter, the same age, hustling and bustling around the halls of High School. And Brittany sitting here with me (an old mom), listening to me talk about who knows what...hoping she will laugh at my silly jokes.

As I massaged the other foot, she looked so relaxed. She feel back to sleep. I gently put her socks back on...

...and tears came to my eyes. I felt so much love as I sat there looking at this perfect child. And even though her body isn't perfect, she is. As I served her, I felt great love...and joy.

Jesus taught in this same chapter of John (verse 34-35):

"A new commandment I give unto to you, That ye love one another; as I have loved you, that ye also love one another.
By this shall all men know that ye are my disciples, if ye have love one to another."

When we serve our fellow man, we are happy...guaranteed.

I know I was that day.

Please consider donating to the NBIA research fund!

I Heart Brittany

I really love Brittany. I get to watch her every Tuesday. She has NBIA, a rare genetic disorder. In only a few short years, she went from a normal child to one that is fed through a feeding tube, can't walk or talk. I have learned how to feed her, drive her wheelchair (haven't crashed yet), give her breathing treatments and in an emergency, give her oxygen. She even has her own elevator. She is a beautiful 15 year old girl who loves the Jonas Brothers (this week I found all of their music videos on YouTube, and we watched each one while I feed her).

She thought it was really funny when she accidentally knocked off her feeding tube and it went zipping around spraying us with her formula. And she laughed even louder when I didn't mix up her pills enough in her tube and it clogged the whole thing. I was there holding her syringe full of formula calling out to one of her parents (who had just got home from a walk and were upstairs getting dressed). I said loudly, "Sandy?" "Rich?" "Anyone hear me?" Help?! Brittany started giggling. I then shushed her and said I was going to get in trouble. She laughed more. After no answer, I ended up having to hold the full syringe while maneuvering her electric wheelchair to the base of the stairs in hopes of getting her parents attention. She laughed the whole time...even while I bumped her a few times in the process.

It has given me pause seeing this little girl with so much joy! She can't speak but yet she communicates. She can't walk, but through her loving parents, is able to see the world. She depends on help 24-7 and she gives those that serve her, so much.
I have a tendency to rush through life. When I am with Brittany, my life slows for a moment and I am reminded to hush the rush. I look forward to my time with Brittany.

Please make a donation to the Boston For Brittany NBIA Fundraiser.