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Helping Special Families

I can still remember walking out of Children’s Hospital on a September afternoon in 1998. My brain struggled to process the geneticist’s diagnosis that my 22-month-old daughter had Cornelia de Lange Syndrome (CdLS). Caused by a rare and random genetic mutation, CdLS affects growth and development resulting in small stature, (often) limb differences, developmental delays, autistic-like behavior, and many other issues. On one hand, I felt relieved to know it wasn’t my fault that Anna was

Mentoring

To be successful in life, you need a little help. Especially in the form of an advisor or mentor. Someone to train you in the best way to do your job or show you the best way to live life. Someone to point out the pitfalls along the way. Someone to springboard you into the future so you can accomplish more in a shorter period of time … and therefore have the opportunity to move on to

Not From Concentrate

When it comes to making lemonade, I’ll admit I’m the first to reach for the can of frozen concentrate. Just add water. As my seven-year-old son says, “Easy-Peasy-Lemon-Squeezy.” But to make old-fashioned, fresh-squeezed lemonade, we have to get messy. Find the juicer and a knife. Cut the lemons in half, turn them upside down and ram them onto the point. Then press down and twist until all the juice drains out, leaving only an empty lemon

Making Lemonade – FREE for a Limited Time

When life gives you lemons, how you approach, process, and transform them makes all the difference. Especially for parents facing the sour experiences of raising a child with developmental, behavioral, and/or health needs. Making Lemonade: Parents Transforming Special Needs incorporates practical strategies from a Christian worldview and the emotional stories of parents (including me!) busy in the kitchen of life to offer readers hope and encouragement as they face their own lemons. Mirroring the steps

Overcoming Obstacles

Imagine facing a mountain over 19,000 feet high. Do you think you could make it to the top? Now imagine facing the same mountain without your legs.   That’s what happened recently, when three American veterans from three different wars scaled Africa’s Mount Kilimanjaro. With only one human leg between the three of them. They did it as an example to other amputees to send the message that whatever your disability, you can still find

Leaning Towers

Leaning Towers

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An estimated one million visitors flock annually to view a bell tower on the coast of Italy. Constructed from 1173 to 1370, it is just one of many examples of ancient architecture. But there’s something different about this tower in the oceanside village of Pisa. It’s leaning. The foundation of the building was placed on unstable soil (a future blog post topic). Three stories of construction later, it began to sink on one side. Now,

What’s in a Label? Autism

As I’ve shared before, my 13-year-old daughter has Cornelia de Lange syndrome. It’s a rare genetic syndrome resulting in growth delays, developmental delays and autistic-like behaviors. At least, that’s the way I used to describe it. Now, I may be changing labels and “upgrading” her diagnosis. Why? Because we just got the test results back from a study we participated in through Children’s Hospital of Philadelphia looking into behavior and autism in CdLS. Was there

Celebrating Differences

This past weekend, my special-needs daughter was special for another reason. Anna was the center of attention, courtesy of the Special Olympics. The party started with the Law Enforcement Torch Run. As part of a fundraiser for the Special Olympics program, members of local police and sheriff’s departments ran with the torch. This year, the local television channel and newspaper both turned out with cameras to document the event. My 13-year-old got to carry the

Friday Focus – Patrick Henry Hughes

What if you were born without eyes or the ability to straighten your legs and walk? How would you describe your disabilities? Well, if you were Patrick Hughes, you’d say, “Not disabilities at all. More … ability.” He began playing the piano by ear before his first birthday and was taking requests by his 2nd. To see the rest of his journey, click here. (Caution: tissues may be necessary) Did you hear what his dad