"There's nothing my God cannot do!"

Friday afternoon, I got a phone call from Garrett's neurologist. He told me that I am not a carrier for Duchenne muscular dystrophy.

I had a difficult time keeping it together while he was on the phone, so I just held my breath until he hung up. I immediately dropped to the floor and cried. I had no words for God but "Thank You" that came between sobs. In the back of my mind, I kept playing the words to the kids' song "My God is so Big." How silly, I know.

I cannot tell you that I feel completely relieved: the Enemy will not let me. Instead, I feel a sense of guilt that I am thankful to have only 1 child who is desperately sick. I would almost rather have been a carrier so I could bear some of the burden on myself.

DMD is such a rare disease anyway, but me not being a carrier puts us in a more rare category still. Garrett's form of DMD is in a category of its own: around 5% of boys with the disease have his type of mutation and possibly no one has his exact mutation.

It was described to us this way: the DNA for Duchenne's is 2.5 million letters long...like a novel. Most boys are missing large chunks of the DNA, like chapters or long paragraphs. Garrett is missing 1 little letter in the middle of this long strand. 1 out of 2.5 million letters!

I love a God who deals in these odds!

"My God is so big,
So strong and so mighty,
There's nothing my God cannot do!"

End Duchenne

How much did you spend on coffee this morning?

How much for that sandwich you had for lunch?

What about that cute bag you just bought at Target?

How much would you spend to save your child's life?

We waste so much money on silly things that give us no lasting fulfillment.

Would you join us in giving to a worthy cause?

Would you join us in a fight for Garrett's life?

Click here and watch this video about this terrible disease and a great cause to fight it.

I've posted a link on the right of the blog where you can donate to an organization called Parent Project Muscular Dystrophy and their upcoming event called "Coach to Cure MD."

Coach To Cure MD is a partnership between the American Football Coaches Association (AFCA), a professional organization for over 10,000 college football coaches and staff, and Parent Project Muscular Dystrophy (PPMD), the largest national charity devoted exclusively to Duchenne muscular dystrophy.

In 2008 the AFCA adopted PPMD’s Coach To Cure MD program as one of their charity efforts. One reason the AFCA was drawn to Coach To Cure MD was because of the unique parallels between Duchenne, a disorder which robs young men of precious muscle strength and college football, a game where young men are at the peak of their muscle strength.

The goals of Coach To Cure MD are simple: raise national awareness of the disorder and raise money to fund research for a cure. The approach to reaching these goals is also simple. One football Saturday of each season (this year it will be on September 25, 2010) AFCA coaches nationwide agree to promote Coach To Cure MD. By wearing armbands, mentioning Coach To Cure MD during on and off-field interviews, and in some instances doing even more extensive media relations around the date, coaches are rolling up their sleeves and proudly getting involved.

Please donate...not just once...several times.

Please pass along this message to anyone you know.

Please watch football September 25, 2010 and think of my Garrett.

How much would you spend to save your child's life?

That Jadie Thomas!

She's done it again! She always "wows" us with her pictures! Despite the heat, despite the silly kiddos, despite the potty words...

Check out her site if you haven't already!




I don't know which one I like better...B&W or color!


It was sooo hot! Garrett was very sweaty!

Those eyes are gonna get us all in trouble one day!

Waiting

"But as for me, I will watch expectantly for the Lord:
I will wait for the God of my salvation.
My God will hear me.
Do not rejoice over me, O my enemy,
Though I fall I will rise;
Though I dwell in darkness, the Lord is a light for me."

Micah 7:7-8

Its just that kinda day!

Strength for Today

I live in the Psalms these days:

"The steps of a man are established by the Lord, and He delights in his way.

When he falls, he will not be hurled headlong, because the Lord is the One who holds his hand.

I have been young and now I am old, yet I have not seen the righteous forsaken or his descendants begging bread.

All day long he is gracious and lends, and his desendants are a blessing."

Psalms 37:23-26

First Day of School

School started today!

It began with a nutritious breakfast of Apple Jacks and fruit.


Followed by some posing in their backpacks! (Don't be fooled, Mom ended up carrying the backpacks in to school!)

We laughed! We cried! No one napped! But some fun was had by all!

Stretching

A few things about stretching are common knowledge among professionals in my field:

1.) to be effective, stretching must be done on a regular basis;
2.) the stretch must be held for a certain length of time (no one truly knows how long is best), but somewhere between 15 and 30 seconds; and
3.) static stretching is the best form, meaning a LOOONG, prolonged stretch; and some evidence suggests
4.) more than 1 stretch is needed (2-3 times for each particular muscle) at a time.

This is also what God is doing to me. He is stretching my faith in Him, stretching my patience, stretching my limits.

It is not a 1 time stretch, for evidence suggests that this has no lasting results. It is a long, prolonged stretch in order to create a lasting effect in my spiritual muscle which (as soon as I think I can take no more) He stretches a little further each time.

He holds me in this stretch for as long as He chooses, while all the time I think its too long, too hard, too much. But He knows what is best. He knows what it will take to make a permanent change.

I recently had a test to determine if I was the carrier for Duchenne's MD, and my test results came back that the CK levels were within normal limits. I thought that was good news, but as soon as I talked to Garrett's neurologist I was informed that that only lowered my chance of being a carrier to 15-20%. So, on Thursday I go for a DNA test (the same one Garrett had) to make a determination. When we get those results (Garrett's took 6 weeks), we will determine if Charlotte needs to be tested.

Garrett also has his first appointment at the MD Clinic on Thursday. He will have periodic visits to determine how his steroids are working, how his AFO's are going....a general check-up.

This will be the first visit of this type: It will be the first time we are surrounded by other boys with this horrible disease in its varying forms. It will be the first time Garrett comes face to face with others that share his diagnosis. It will the first time Randy and I see exactly what we may encounter in the future.

It will not, however, be the first time God holds our hand. It will not be the first time God realizes that we need Him. It will not be the first time it dawns on God that we are in the middle of this storm and we are desperate for Him.

And while I have a deep fear of the unknown for us, for Garrett; He will not be surprised by anything we encounter.