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!