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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.” 

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“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

Make a joyful noise unto God, all ye lands.

            Psalms 66: 1 (KJV)

I will always remember the first time I realized Glenn was singing.

Music had always been important to him.  Because of his lack of vision, I think his early responses to music were much more noticeable than they might have been.  During the difficult period when he suffered from neurologic-based irritability, music was about the only thing that had any kind of calming effect on him. 

He always responded to singing and I found it an important tool in getting through the tasks or situations that Glenn did not enjoy.  We were getting ready for school one morning when he was about six.  He was really into bluegrass at the time, so I was singing “I’ll Fly Away” to get him through his dreaded soap and water routine.  That’s when it happened, Glenn started making a new noise — sort of a sustained hum.  I looked up, thinking he had found a new way to register his complaints.  But his face lit up in the biggest smile I had ever seen.  So much joy radiated from him, I actually cried.

Now at 14, Glenn  can say about 6 words that people outside of family can sometimes recognize, but few would realize his songs are singing.  But listening with my heart instead of my ears, I hear songs more exciting than any Top 10 hit.  I also know God hears him and hears beautiful music.

Lord, thank you that you have given each of us a voice that you love to hear. You always delight in our praises, even if we sing out of pitch or with no pitch at all.  So great is your love.  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 

 

Praise be to the God and Father of our Lord Jesus Christ, the father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
2 Cor. 1:3-4

For Glenn

I prayed
for you to be born
special-
forgetting all that
special
might mean.

Now it seems
Each day I’m given
new definitions
of your specialness.

Most interchange
special
with labels
that point to your differentness –

cruel connotations,

legal pigeonholes,

medical meanings.

But a mother’s heart
can’t set
such limits.
So I’ll wait
for you to define
your special self
for me.

Welcome. Special prayers is meant to be a place for support and fellowship. We all need it, even those of us who have spent quite a bit of time in the trenches. So if your child — whether newborn or adult — has special needs I hope you’ll join me here.   I hope to provide five devotions a week plus some tips and pointers.  Once I actually have readers, I hope to add discussion questions and polls.  Not sure how long it will take for me to get into the rhythm of this , so with God’s help and your patience, this will happen.

In his service,

KellyJo Houtz Griffin