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Win a copy of Cole…I Love You to the Moon and Back by Aaron Ruotsala.  Just leave a comment by March 9, 2010 to be entered into the drawing.

Cole…I Love You to the Moon and Back:  A family’s journey with childhood cancer    by Aaron Dean Ruotsala.  Xulon Press. 2009.

Every once in awhile, a book comes along that really grabs hold of your heart.   This is one of those books.  But then, during his short life, Cole Ruotsala was a very special boy. 

In June 2008, Cole celebrated his third birthday, a seemingly normal, happy, healthy little boy.  Less than three months later he was gone, but before his death he managed to touch the lives of thousands around the world.  During his 2 1/2 month battle with cancer, his CaringBridge website had over 600,000 hits — that averages out to over 7 hits a minute, every minute, 24 hours a day for over 60 days!!!  What’s more, visitor after visitor wrote on his site that his story truly changed their lives.

During my years as a librarian and a book reviewer for Library Journal, I read numerous books written by parents detailing their journey through their child’s illness or disability.  Never have I read one that held onto hope and promise on every  page like this book does.  Even through the pain of Cole’s death, his parents held onto the promise that  through their suffering God would work miracles in the lives of others.

A unique feature of this book is the inclusion of numerous notes from visitors to Cole’s CaringBridge site.  They give perspective to the effect this one little boy had on the world.

This book is a must read.  When you’ve finished it you’re likely to “hug a little tighter, love a little longer.” 

Now faith is being sure of what we hope for and certain of what we do not see.   

Hebrews 11:1                                                                       

 I read somewhere that our children make a habit of living down to our expectations.  If we believe our child is incapable of accomplishing this or that task and let our words or actions communicate that belief to our child, their expectations of themselves often mirror our expectations.  If a child believes he can’t do something, then he can’t.

While this principle is important for all parents to remember, it is particularly important for the parents  of a child with a disability or chronic medical condition.  It is easy to get caught up in the “can’ts.”  He is 14 months old and he can’t sit up yet.  She is 3 years old and can’t walk.  He can’t play tag with the other children without suffering an asthma attack.  No doubt most of us have encountered at least one physician or other professional(if not dozens) who has warned us, ” Your child will never be able to . . .” 

Our job is not to help our child to see his limits, but to help him see his potential. We need to be there to help them learn what they can  accomplish.  Only God truly knows what our child will or will not accomplish.

I will never forget going to a workshop and hearing another mother introduce herself by saying, “My son is death-blind and I’m glad.”  It seemed an odd statement at first until I heard her story.  When her son was first born, she was bombarded by professionals who all told her that her son would be a vegetable.  But they were all wrong and “he’s just deaf-blind!”  If she had listened to all the can’ts, she would have put him into the  institutional setting the professionals were recommending.  Instead she now has a son who enjoys school and playing with his friends in the neighborhood and all-in-all enjoying a pretty normal childhood.

Lord, use me to help my child reach his highest potential. Keep me from becoming a stumbling block to his progress. Thank you that you love him even more than I do and have a wonderful plan for his life.

Amen

“I have set the Lord continually before me; because He is at my right hand, I shall not be shaken.”

                   Psalm 16:8

Sometimes the tasks ahead of us as parents seem a little overwhelming.  Since Glenn is 14, this is the year we start planning with the school for his life after school. A task that, by itself,  makes me more than a little anxious.  But add to the mix, the fact that we are moving to a new school district as well.  Last time we moved, we moved from a large suburban district to a small, rural district.  We expected a reduction of service, but we really weren’t prepared for what  we found.  It seemed no one really knew what to do with Glenn.  It wasn’t until after we had been here for more than a year that we discovered that Glenn was the first  severely handicapped child (Glenn is physically, cognitively and visually impaired as well as being  nonverbal)to be kept in district.  All the others had been shipped off to larger districts.  Glenn became a trail blazer for students that followed, but I can’t say that I really want to go through that again.

Now we find ourselves moving to an even smaller district, in a county that is one of the most economically distressed in the state. There are many reasons why my husband and I are certain that God is leading us to this place. However, that does not keep me from losing sleep thinking about starting over with a new school.  I am putting together a packet of information (complete with video) to help introduce Glenn and his needs to the district.  Though he won’t start school until fall,  I plan to start working with the new district in February or March since I realize providing for Glenn will have an economic impact on the district budget. I have a definite plan of action.  Still, more often than I would like, I find myself scared and wishing that we could just stay where we are so Glenn and I wouldn’t have to go through all this.

But then I remember that God is leading us to this place, so He will take care of everything.  I just need to handle the process with prayer and let Him be in charge.

Lord, you know how much this all worries me.  Help me to focus on following you and you will take care of the rest. I know that you are even more concerned about my child’s welfare than I am, help me to trust you with him. Thank you for taking care of us.  Amen

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

When my son was little, my worries tended to be short term, often very immediate and day-to-day type worries.  But now that Glenn is 14,  I seem to find myself pondering his adulthood and worrying about what it might hold.  How will we insure he has a meaningful and enjoyable life?  What if something happens and I can not physically take care of him anymore?

It would be easy to let myself be overwhelmed with these worries. But when I find myself sinking into despair, I remember that God holds my son’s future.  He already has a plan that is just right for Glenn.  He also has the perfect plan for your child. Now, I’m not advocating that you neglect planning or considering your child’s future options.  On the contrary, I believe it is of great importance.  But I suggest handling such planning with prayer, remembering that God will reveal his plan at just the right time.

Lord, thank you that even before he was born, you had a plan for my child’s life, a plan far better than anything I could create myself.  Lead me in the decisions I make for my child and reassure me when I am anxious.

Amen

Trust the Lord with all your heart, and lean not on your own understanding.  In all your ways acknowledge Him and He shall direct your paths.

                                          Proverbs 3:5,6

 

My pregnancy had been uncomplicated, but I was overdue.  Then the day before my doctor’s appointment (two days before we were set to induce if he didn’t show up on his own) the baby stopped moving.  I  couldn’t get anyone else excited about it, they all insisted I was worrying about nothing.  When my husband arrived home from work, he placed his hand on my belly and the baby moved for the first time in hours.  But the movement was different.  It felt wrong, but I couldn’t articulate the difference to anyone.  At the doctor’s appointment and again at the hospital when they went to induce labor, everything seemed fine.

The delivery was a little rough.  After four hours of pushing, Glenn arrived with his fist pressed against his cheek.  Still, his initial apgar score was nine.   Nine!! Wow!  I didn’t know anyone who’s initial score was that high. “Thank you, Lord, for a healthy baby,” I prayed.

Then things started falling apart. He was so lethargic.  He stopped eating. He had this unexplained tremor. Then the seizures started.  We couldn’t believe it when we were told our son had suffered a stroke while still inside the womb.

I went over and over in my mind every detail of my pregnancy, trying to understand how his could happen.  I kept coming up with more questions, but no answers.  I had made my living as a medical librarian, so I naturally turned to medical texts to find answers.  Yet I was no closer to understanding. 

Then I turned to The Book.  Finally, the pages of God’s Word helped me to realize it wasn’t necessary for me to understand the whys.  I was tearing myself up looking for answers that weren’t there for me to see.  But God knows the answers and he’s in control.   He’s there for us to lean on, if we will only trust him.

Lord, you know how independent I am.  You know how hard it is for me to lean on anyone. You also know how hard it is for me to stop looking for answers after I’ve exhausted all my resources.  I need to trust you to take care of my child and my family.  Thank you for being there to lean on.  Help me trust in You.

“Go down to the potter’s house, and there I will give you my message.”  So I went down to the potter’s house, and saw him working at the wheel.  But the pot he was shaping from the clay was marred in his hands, so the potter formed it into another pot, shaping it as it seemed best to him.                                                          Jeremiah 18: 2-4  (NIV)

 

I was never very good with clay.  I never could shape it the way I wanted, or even so it looked like more than just a glob of clay.  But even in grade school, my friend Hank could turn a lump of clay into sellable art.  I remember him sitting and staring at some clay one day in art class, carefully planning before he started working on it.  Then slowly, meticulously, he began shaping.  But that day the clay wouldn’t do what he wanted.  Frustrated, he sat back, crossed his arms and glared at it.  After a few moments, a smile spread across his face.  He picked up his clay, turning it first this way and then that way.  He hummed as he began work again.  In the end, his creation was not at all what he planned — it was better!

Life is like that.  I’m great at making plans.  But often, when my plans seem fool-proof, God steps in and reshapes them.  He has something better planned.  I had wonderful plans for my son, but God didn’t shape him that way.  He shaped him “as seemed best to him.”  A beautiful creation.

Lord,

I am so thankful your are the artist, not me.  Other may see my child with his defects as a marred piece of clay.  But in your skilled and loving hands he was created as a work of art, just as he was meant to be.

Amen