Bible Reading Challenge Check-In

 

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Hey Friends! Monday is here and so is the Bible Reading Challenge check-in! After being so excited to have caught up on the reading, I got a day behind this week.

My time was filled with party preparations for the annual Ohio MPS family gathering that my husband and I host each year and I had a hard time adjusting and balancing my time throughout the whole week. This is the 12th year we have hosted this event. The first year we had about 27 people. Last year we had around 180 And this year, my approximate number at this point was 160. This number includes children affected by MPS and their families.

In the picture below, you will see 16 children affected by MPS. Just toconnect the dot s for you, my daughter, Taylor, has MPS and remember that Team Lift Your Voice on American Bible Challenge was playing for the National MPS Society?

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I’m hoping to catch up quickly on the Bible Reading Challenge this week. And how is the reading going for you? I’d love to hear from you!

Have a marvelous Monday!

Rachel

 

A Prayer for Special Needs Moms & Whimsical Wednesday Blogger Linkup

As mama to a special needs girl with a rare metabolic disorder, MPS, the road of special needs parenting can be a lonely one. Sometimes I want to tell God that he chose the wrong mama for Taylor. But he didn’t- his plan for Taylor included me- so I’m giving you the best advice I have for those times when you just don’t have answers, or you are frustrated beyond yourself. Or you just feel like you can’t keep going. Pray. Just pray. Because as CS Lewis tells us, “Prayer doesn’t change God. It changes me.” This is how I began to see the one God chose for the job- me. And maybe you will too. Mamas to the one with special needs? Let’s pray together.

A Prayer for Special Needs Moms

Dear Heavenly Father:
Before the world could ever know,
You created my precious girl and
Crafted a beautiful blueprint for her life.
Having special needs and even disabilities
Provides a different kind of normal for our family,
But we are determined to praise you in the storm.
While I’m so blessed to be her mama,
We have our good days and our bad;
Yet you guide us through each one,
Providing mercy and grace in exact measure.
Now we come before You, simply asking,
That you measure out for us once more.
That you who calms storms with your voice
Would calm the storms of our hearts with your presence.
Amen.

prayer for special needs moms

Rachel

Bloggers- so pleased you are stopping by to link up to Whimsical Wednesday this week! Join the blogger linkup party and find 100% Christian encouragement!
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Rare Disease Day

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Today is Rare Disease Day. As many of you know, my daughter, Taylor, has a rare genetic metabolic disorder, MPS. Her subtype is known as Sanfilippo Syndrome. Her disease is neurologically degenerative and the average lifespan for her type of MPS is 10-15 years. Taylor is 17 and God has graciously blessed us all with her health. While we have our ups and downs, each day we live is by faith, trusting God’s plan for our lives on a daily basis.

For more information on MPS, check out the MPS Society website and for more information on Rare Disease Day, check out www.GlobalGenes.org.

I hope you’ll wear jeans in her honor today. And if you think of it, purple is the MPS color, as well as Taylor’s favorite color.

Have a fantastic Friday!

Rachel