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This is the day the Lord has made;
let us rejoice and be glad in it.

Psalm 118:24

I had to get up with my son six different times last night.  I felt more exhausted when the alarm went off this morning than I did when I first crawled into bed. I was a grump and all I wanted to do was crawl back into bed.

But I’m a firm believer that joy is a choice, one that is closely tied to a heart of thankfulness.  This is the day the Lord has given me and I can choose to mope around feeling sorry for myself OR I can look for things to be thankful for.

There was a time when Glenn was younger when I would have said, “Wow, I only got up with Glenn six times last night. Thank you, Lord, for letting me get so much sleep.”  During that 18 month period, I survived on 20 minutes sleep here, 15 minutes there, night after night.  Let me assure you that I couldn’t have gotten through that period without choosing to be positive and joyful.  Granted, more often than not it seemed almost more than I could manage, but by choosing to count my blessings instead of my woes, I made it through.  And I could only have done that with prayer.

Lord, thank you for another day to praise you.  Help me to spend this day with joy and a thankful heart knowing you are there to take care of my burdens.  Amen

Though he brings grief, he will show compassion, so great is his unfailing love.  For he does not willingly bring affliction or grief to the children of men.

Lamentations 3:32-33

Pick up just about any book on parenting a child with special needs and you find a section or chapter dealing with grief.  That book is likely to tell you that grief is not only normal, but necessary. You had a dream for your child.  All parents do.  Your dream may have even been conceived years before your child.

  • My son will go to college.
  • My daughter will have the dance lessons I never had.
  • My child will take over the family business.

The dream is different for every parent, but you can bet no one’s wishes ever include, “My child will have a handicap or life threatening illness.”

And so your grieve the loss of your dream.  Strangely enough, however, I have met quite a few parents who feel guilty about this grief.  I have felt the guilt myself.  “My child is alive, ” we say. “I should be happy.”

Let me assure you that there is nothing wrong with grief.  God allows grief and promises to be there with us.  We need to go through this grief.  The problem comes when we grieve too long.  We wallow in grief and self-pity.  God wants us to pick ourselves up and get on with our lives.  Only in our moving forward can we truly be of us to the child who needs us.  Likewise, it is only in our moving forward that God can be glorified in our lives.  He is there to lift you up.  Just ask him.

Lord, thank you for being there in my grief.  Show me how to work through it.  Each day help me to find more to be thankful for and less to mourn.  Amen.

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.