God Is Bigger

Update: 11/2/12 9:00 pm:

Through the wonderful outreach of Samaritan’s Purse (along with a few tweets, facebook messages, and phone calls), the Begs are sleeping warmly in their own home tonight!! GO God!!!

AND through one of the incredible blog readers of this blog, by tomorrow 30 gallons of gas will be delivered to them, allowing them to keep a warm home, cook on a stove, and have light when needed, hopefully until the electricity is back on.

Update: 11/2/12 Noon:

This is the most recent message from this family that needs urgent prayer in New York:

People standing in cold since 5am. So gas is truly valuable here. I was able to get online late last night but now I can’t. Guess more people using the net at day time. Next street from us, wires are all over laying on the ground and doesn’t seems it will be fix any time soon. It freezing here now. Ran out candles but stores open don’t have any left either. Its a disaster. Stores only taking cash for food items but no cash available at ATM machines. Keeping children warm is really hard.

11/1/12 Special Prayer Request:

Friends, one of the dear families we are associated with through Taylor’s disease,MPS, has been severely affected by the storm. The Begs need prayer for their family desperately. They have three girls with MPS- my Taylor’s disease. Not one, 3! The girls are severely affected by MPS, requiring oxygen, and such. They live in one of the worst areas hit by the storm and have been without power, etc. for several days. Staying warm is critical for families who have children with MPS. Truly this is a terrible situation- I need your help praying for this precious family!!

Lord, I pray for your awesome power to come down for this family today.  You created the storm and you can calm the aftereffects  with a single word.  I pray for the precious Beg girls and their family today. I pray that the girls would be able to maintain body temperature and their oxygen supply would sustain them.  I pray that the oxygen refills would arrive timely.  I pray that the electricity issues would resolve quickly and You would sustain them as only you can.

Will you continue to pray for this dear family with me today?

 

Tremendous Support from What’s In the Bible?

What’s In The Bible? is featuring the Carnival of Courage today on their blog.  How exciting is that!! Here’s a little glimpse of my writing there and thanks for clicking over to their site to read the rest!

What’s in the Bible? Supports Carnival of Courage

I’ll never forget two specific days in the life of my daughter’s journey with her disease.  The first was the day we received Taylor’s diagnosis of MPS.  After seeing over twenty-some doctors and relentlessly searching for an answer to her difficulties since birth, at four years of age, the test results were positive for the rare metabolic disorder of MPS, mucopolysaccharidosis.

The second day I’ll never forget was six months later when the doctor’s office called and told us they just diagnosed another patient and would our family like to meet theirs?  Would we ever!  The ins and outs of dealing with rare disorders, such as MPS, is tough.   Eleven years ago, it was even tougher.  Social media hardly existed. Facebook and Twitter weren’t options of connection like they are today.  We felt…

PS: You can download the coloring page for their latest DVD right here!! I can’t wait to get mine.

PSS: I decided to give away a What’s In The Bible? DVD and CD on the blog today! Woohoo! So here’s the rafflecopter, just follow instructions! :)

a Rafflecopter giveaway

Carnival of Courage Brings Fun & Joy

Months and weeks of planning and preparation all led towards one day, July 14, 2012.  The day 21 families who have children with the rare disease of MPS met together to celebrate life and enjoy one another.

The Carnival of Courage is designed to give MPS children and their families a wonderful day of encouragement and love.  We understand the toll the disease takes on the child…and the family.

This year, 21 children affected by MPS with family members attended and the total attendance fell close to 200. Quite the party!

A wonderful lunch of ChicFilA was enjoyed, along with an entire buffet of sides and desserts brought by the families to share together. Each family introduced their child, the type of MPS by which they are affected, family members present, and how many years they’ve attended the gathering.  Carnival games were played and prizes were chosen. Cotton candy and root beer floats were deliciously consumed. :)

A professional photographer volunteered her time to take a family photo of each family and a group picture, as well as many others. A caricature artist drew his heart out for 2 hours straight, capturing many great memories.

No party is complete without a massage therapist on hand to massage away neck and shoulder aches!

Canines for Companions were present again this year with five dogs petted and loved on by all the children. (ok, except for one of mine who was afraid and stayed in the kitchen. ;0) )

Truly a day of encouragement and fun, we are very thankful for the grant provided by the National MPS Society to assist in the cost of this monumental day.

Many thanks to the following donors:

Bill & Sharon Glasscock of Laurel Creek Hardwoods

Kevin & Stefani Harris of Tuttle Crossing ChickFilA

Northwest Bible Church

What’s in the Bible?

Tommy Nelson

The Chuppies

Author Tricia Goyer

Liz Flurry, Thirty-One Gifts Consultant

Deirdre Haman, Mary Kay Consultant

Diane Hartman, Massage Therapist

Kari MacKeverican, Photographer

Marty Marlatt & friends, Canines for Companions

Chris & Lou Slavik

Barb & Flossie Pryor

Ronee Burnside

Event Assistants:

Rich & Deirdre Haman & family

Jack Willer

Stacy Williams

The Perrine sisters & crew

My husband, Matt and awesome helpers, Tiffany, Michael, Tristina & Samuel

Zach Hayter

Jake Maynard

God is good and His provision was evident in multiple ways through this event. Can’t wait to share more stories with you, but for now, soak up the thought that life is a gift and we must remember to enjoy each day to the fullest!