eSpecially Ben

Many of you know this poem and some may even say it saved your life at the time someone gave it to you to read. Others who do not know it, get ready to read something that will open your mind to a new way of thinking. WELCOME TO HOLLAND by Emily Perl Kingsley c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and s...

Athletes sit in a sled balancing on two blades. Last Saturday, we saw the U.S. Paralympic Sled Hockey Team practice at a nearby ice rink. Afterward, we ate dinner with them and were able to ask questions about their training schedule, at what age they got involved with hockey and if being on the team was a full-time gig. Watching these athletes practice was amazing. To overcome whatever they experienced in life to be on this team and be in the physical shape to move their bodies and equipment was a lot for me to comprehend. These young men exemplify the idea that all people have the ability to forge ahead no matter what conflict they have faced. A good lesson for most of us to learn. I felt privileged to be a part of this event, being able to sit with these athletes, allowing us to enter their very special world. Children and adults with special needs were able to try out the sleds. The team members taught them how to move and shoot. One precocious little girl bragged that sh...

Check this blog entry out from the Huffington Post . It reminds me that we are constantly learning, sharing and giving, especially when we allow our hearts and minds to be open.

My mom sent this link to me recently. It is pretty wonderful and really unbelievable. Take the time to watch the video and then check out the blog: Carlys Voice .

Ben had an MRI recently as a follow-up to the seizures he started having in late April. The hospital receptionist started a conversation with me by mentioning that she had a grown daughter with cerebral palsy. She highly recommended the camp Joni and Friends. She, her daughter and 12 year old son attended the camp last August and plan to go again this year as their family vacation. She said that the activities offered were so wonderful for all of them. If they could use her as a spokesperson, they would certainly attract even more families. Here's one of the counselor's reaction to working at the Joni and Friends Camp: About Face Blog As our children get older we will certainly research a few of the camps they offer for families - Victory Junction is another that offers great opportunities. I am under the weather this week, so bare with me.

This week we are considering ordering a new walker for Ben because the one he has is too advanced for him. His school and private physical therapists are concerned that the pressure he is placing on his shoulders will cause serious side effects in the future. Ben also walks in a crouched position using this Kaye walker and his endurance is very low. The problem is that insurance will only pay for a new walker every three years. The decision made last February was a poor one. I have learned from this mistake - ask questions and get more people involved in the process before ordering an expensive piece of equipment. In an effort to outline all our options, I spoke with one of the representatives from the company who ordered the walker and she introduced me to an incredible organization:   Suzie's Closet I think I have mentioned before how amazed I am when parents raising special needs children start an agency or organization, write a book or open a business to help other...

I am always amazed to hear about parents, in the middle of caring for a child with medical or other special needs, who are able to pull together something so wonderful like an amusement park, a signing program or raise money to cure a disease. Rather than wallow in their own issues, they find ways to reach out to others and make a difference in not just their own child's life, but many others as well. They face the challenges of life head on - helping us all gain perspective on our lives and develop confidence in what we do. This is a lovely story about a family: I Love Lucy Project . Please check it out. This is also a link to a "sneak peak" from their book, "A Mother's Book of Secrets."

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h...

At Christmas I received a card from one of Ryan's cousins. Inside the card was a 4x6" magnet with the title, "101 Ways to Praise A Child." It lists those 101 ways beginning with "Wow" and ending with "I Love You" with 99 more in the middle. In my mind, I thought, "What a wonderful gift to add to your holiday cards." Praise was a very important part of my growing up - my parents were heavy on the praise and I understand the value and impact of the special words parents can share with their children. Then I read the card. This exact magnet had been on her fridge while her boys were growing up. Now that they were mostly grown, she decided to pass it on to me. Talk about "Wow!" Let me add that this cousin and I have met just a few times at family reunions and funerals. It has only been through Facebook and this blog that we have developed a relationship. The support from her is wonderful. I feel like I have an extra cheerleade...

For what seemed like eternity, our neighbor's RV was parked outside our bedroom window. When I looked out, the dad from the Walton's and a bald boy with a knit hat stared back at me. The RV is wrapped to advertise the movie, Letters to God , which comes out on April 9. My neighbor promotes films and thought this might be a good way to get the word out. We certainly got the message. Last week, my neighbor asked if I wanted to see a sneak preview of the movie. Curiosity and a night out ensured my acceptance. The film is based on a true story - and to the credit of the writer, producer and director - they deliver a message of hope and prayer. In addition, they share resources and information about cancer organizations available to help families and individuals affected by this disease. A number of national and international organizations support the movie. The movie is about a boy, Tyler, who has brain cancer. As a coping mechanism, he writes letters to God explaining wha...