When Dreams Get Stripped Away

All of us dream and make plans in life. But not all of those dreams come to life. As if I need to explain that to you.

Last week, my son asked Daddy, “When you were young, what did you want to be when you grew up?”

“Well, when I was really little, around 5 years old, I wanted to be a doctor during the week and a preacher on the weekends.” The children thought this was such an awesome idea. My husband went on to say,” And when I got a little older, I wanted to be a magician.” This made everyone at the table smile or giggle a bit. Although I have full confidence that if he were to be a magician, he would be incredible. But the reality is that the most magic my husband has ever made has been his 7 kids. 

I’m a dreamer and always have been. As a child, I not only got lost in books because the characters came to life, but also because I could take the characters other places and make up my own stories. I would dream of flying with Amelia Earhart; Annie Oakley and I went on all sorts of adventures together. I was as good a shot as she was. In my dreams.

Yesterday one of my dreams died.

You see, my Taylor girl has been quite fragile since autumn. Between seizures and her continual loss of skills as the gradual neurological degeneration infiltrates her brain, she has stayed home from school day after day and we do our best to hold on to her mobility. She is still breathing on her own and eating by mouth; for this we are thankful and focus on making the most of each day. But her pace to life is much slower than the rest of the world. I’m learning to appreciate it.

When the diagnosis was issued that Taylor’s projected lifespan would be 10-15 years, I looked down at her little pigtails and I had this dream. The dream that one day she would walk across a platform and receive her high school diploma. Graduation day- isn’t it the pinnacle of the teen years? Doesn’t everyone have this dream for their child? And in spite of disease and in spite of diagnosis, my dream for my girl has been that she would graduate from high school. Not with honors or accolades or scholarships, but just the ability to walk and receive a piece of paper that signifies she lived her life to the fullest for the school years allotted to her. Each day she put one foot in front of the other and took one more step.

Since Taylor hasn’t been well enough to attend school, although she is 18 years old, at this point, we are forced to let a dream die. Due to state regulations and stipulations, today I have to make the choice to disenroll Taylor from school. And we will never see that dream of Taylor receiving a high school diploma. It’s a very hard mama place to be. To be honest, Taylor doesn’t care. She doesn’t know and it does not hurt her feelings because she doesn’t understand. It’s a strange feeling to be thankful that your child doesn’t have enough cognitive ability to know when she’s being deprived of a simple joy.

I really didn’t want to share all this with you, as it is deeply personal for me. But the Lord kept me awake last night because I felt him impressing on me that you too have big dreams and big goals for your life and your children. There’s nothing wrong with those big dreams and plans and goals, except that sometimes they are not a part of his plan. We can’t wrap our heads around it; we don’t understand all the details. But we can hold on to the promises of Isaiah:

For my thoughts are not your thoughts, neither are your ways my ways, declares the LORDFor as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:8&9

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For those of you with children graduating this year, be thankful and enjoy every moment to the fullest. Soak up extra moments on my behalf.

For those of you with dying or dead dreams, he is with you. His promises are true and his plan is always best. God is good and makes all things for our good. His plan is far greater than we could ever dream.

I doubt I’ll have a single thought of high school graduation when we stand before his throne in eternity. In fact, this morning I was thinking about what it will be like to see Taylor in heaven one day, without disease, fully healed and I thought:

Now that’s the ultimate graduation.

Rachel

 14 Bible Verses for when I can’t understand God’s plan

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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