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Wonderbaby.org is giving away a terrific I-pad package designed for special needs kids.  Besides an Ipad there’s a bluetooth switch and some switch ready apps.  Take a look and enter your special child.  But hurry the deadline is May 15.

http://www.wonderbaby.org/articles/ipad-giveaway

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

A glad heart is excellent medicine,

a spirit depressed wastes the bones away.

Proverbs 17:22

You’ve heard it a million times : “Laughter is the best medicine.” But we all have times when those words sound pretty hollow.  It sounds too easy.  Surely, that advise is not meant for me.  But several medical studies now demonstrate that there is some scientific basis for this prescription.

I can testify that the days I spend dwelling on the things my son can’t do are certainly a great deal darker than the days I celebrate the things he can.  Our children need us to acknowledge — no, they need us to praise their accomplishments.  They need our encouragement.  They need to hear us give our thanks in prayer.  Their view of themselves and their abilities is largely shaped by what they see in their parents.

We can choose to fill our world with self-pity and resentment, risking depression in ourselves and in our child.  OR we can choose to fill our hearts with thanksgiving and gladness.

Lord, I thank you for your many gifts to myself and my child.  Help me to see the beauty in each day and in each accomplishment and to communicate that beauty to my child.  Let me model gladness and joy to my child today.  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.

I’m between 2 homes, with rooms full of boxes at both places. And there’s the older son graduating June 12. Working on securing proper educational plan for Glenn at the new school. By July 1, I’ll be back and with regular entries. Promise.

This week on Different Dream for my child ( http://www.differentdream.com/ ) Jolene Philo discusses praying for your special needs child.  Take a look.

The Foundation was founded by Aaron and Moireen Ruotsala to honor their son Cole by establishing an organization to provide prayer and support for families battling pediatric cancer or other life-threatening illness.   The acronym, which is also their son’s name, stands for Caring Openly, Loving Eternally.  The website can be found at :  http://www.colesfoundation.com/ or by clicking the link on the left.

The website, which boasts over 1,500 active members, offers family stories and links to the CaringBridge website for each member child.  Adopting one of these families to support with prayer and messages of encouragement is a great way to provide Christian service.  If you are like me, caring for a special needs child often makes it hard to find opportunities to serve without struggling to find childcare.  This is a great opportunity to serve from home Check out the website and prayerfully consider serving in this way.

Aaron Ruotsala offers 5 ways to help support a family facing illness on a daily basis:

1.  Post a note of encouragement on the family’s CaringBridge, Cole’s Pages, or Carepages site.  Or better yet, mail a card.  Families in the hospital love receiving mail.  It can sometimes be the one hightlight of a difficult day.

2. Put together a care package of small toys, games, books or other gifts appropriate for the family.  Hospital stays are often long and tiring with a lot of time to pass.

3. Consider adopting a family that you can pray for, send messages to, and encourage on a regular basis.

4. Donate gift items to a nonprofit organization to be given to the families of patients in a children’s hospital.

5. Above all else, pray for the families.

The Ruotsala Family

Aaron, in September of 2008, your three-year-old son, Cole, passed away. Share with us about Cole.

Cole was a beautiful, blonde-haired, blue-eyed little boy who always loved to be by our side. He was the kid that would “Be There” when you cleaned the garage, mowed the lawn, sat on the steps, or when you would need someone to hug. Never in your wildest dreams would you expect a child to get cancer, especially your child. Then it happened, July 24th 2008, Cole was diagnosed. We watched him go through endless rounds of chemotherapy, surgery after surgery, and container after container of pain medications. He was battling a monster called Adreno-Cortical Carcinoma, a cancer which proved to develop a tumor the size of a gallon ice cream jug and which quickly spread to his liver, lungs, spleen, and inferior vena cava. However despite his battle his heart proved to display a greater amount of “Love” than I think I could ever give.

 You received a groundswell amount of support during those eight weeks when Cole was sick, many stories of which you include in your book. What happened when word of his diagnosis spread?

The word of an innocent child battling for his life quickly spread from Cole’s family, to his community, and ultimately around the nation and world. The messages began pouring in…messages of hope, encouragement and prayers. Cole’s life and story began to be a living testament of the true values of life. Displaying what truly is important…with everyone realizing that through this child we are all able to search our hearts and lives and determine what truly is important. To understand that no one is guaranteed another day, as in Cole’s life he was only 3.

Cole, sadly, lost his fight against cancer. How has his death changed you and your family’s life?

Death- The word in itself is scary. The word with understanding is something that removes fear. 

Through the death of Cole I can no longer fear death. In fact I look forward to it, because of this… Our pastor mentioned at Cole’s funeral, ”you can’t loose someone or something if you know where that someone or something is.” Because of Jesus Christ and God’s love for me, I now am able to rest knowing that this life is not our home! One day we will be together again! We didn’t lose Cole in September of 2008.  

After Cole died, you and your wife, Moireen, started a foundation in memory of Cole that now provides support to other families facing similar crises. Can you tell us a bit about COLE’s Foundation?

The mission of the COLE Foundation is simple: To provide outreach and support to the families of children facing cancer and create a public awareness of the needs and challenges faced by those families. The foundation focuses on developing programs of support services to provide families facing medical challenges. These programs include our Adopt- A- Family program which currently sponsors over 1200 children across the United States and abroad. It also includes individual programs like Send-A-Smile that focuses on bring a smile to a child through gifts and care packages.

You work with thousands of families who are battling life-threatening illnesses with their children, primarily cancer. What are some practical ways that people can support a family who is going through something of this magnitude?

The Internet provides a perfect and marvelous vehicle for individuals to send hope and encouragement through messages. It is absolutely amazing how much support a typed message can leave for families. Simply log on to Cole’s Foundation (www.colesfoundation.com) and visit the children’s Web sites who are facing unbelievable circumstances. On their Web sites, you are able to leave messages and prayers for families.

Through your minisone?try, you probably see a lot of death. How can we reach out to a family who might have recently lost a child or another loved

One of the programs we focus on is called Healing Hearts. It is specifically designed to minister to families who have lost children. Volunteers are always needed and your monetary support is welcomed in order to continue to send them baskets of love.

You and your wife know the Lord, and found your faith to be a great source of support when Cole was sick. What hope can you offer others going through a crisis, whether it’s a health crisis, a financial crisis or a devastating death?

Trust in the promises of God! He tells us that He will never leave us nor forsake us! That’s a promise He has given to everyone of us. We can completely trust in that and know that regardless of what circumstance we are in He will always be there for us. We just need to do our part! If we seek Him we will find Him, if we knock the door will be opened unto us! Trust in Him and keep your eyes focused on the Lord!

Is there anything else you would like to share?

Without the hope that is given to us in Jesus Christ this would have been almost too much to bear. I’m not saying it was easy but what I am saying is that with the knowledge of Jesus Christ we are able to live day to day!

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