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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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What do you see?

Now to him who is able to do immeasurably more than all we ask for or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. Ephesians 3:20-21 Paul, in a prayer for the Ephesians sums up the prayer with words about not limiting what God can do and that His work continues until the very end. When you look at the picture on the left what do you see? A bunch of scribbles and lines? At first glance I thought the same thing. What I see now after knowing “the rest of the story” is countless hours of work and determination to express oneself. I see, with the help of the right people put in place, I see expectations blown away, more accomplished than what could ever be hoped for. Look closely again…What do you see? I will give you a hint…look for the faint formations of letters. Can you see them now? M-A-T-T-H-E-W We were blessed this week with Matthew taking a piece of chalk, and with a little prodding and help from Tracey, one of the right people in Matthew’s life, began writing words on his chalk board. This is just another example of not placing someone in the proverbial “box” and just accepting the prognosis of what the “normal” expectations of people “just like him” will amount to and be able to do. I know there are many more examples out there…
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It's in the Details

As this week ends our family is winding down the activities of our involvement with one of our county’s community Fairs. It is great to see the 4H kids in the show rings showing their animals, but it was the flurry of activity that I observed in and around the barns that left an image in my mind. The many bales of hay, water buckets, washing and scrubbing of animals, scooping poop and the endless highway of wheelbarrows exchanging one cargo (poop) with another cargo (bedding). The Fair for many of these kids is a chance to show their animals and have a little bit of competition with their friends. It is also a chance for family and friends to see them compete in the show ring. It made me think of the milestones that have been reached with Matthew…crawling, walking, communication with sign, reading, spelling, etc. We can now look at these as accomplishments, but they are not the end. If we limit what the possibilities can be, we stop living. A great quote I read and I am reminded of often is from author and Newsweek columnist Anna Quindlen (A Short Guide to a Happy Life); “Life is made up of moments, small pieces of glittering mica in a long stretch of gray cement. It would be wonderful if they came to us unsummoned, but particularly in lives as busy as the ones most of us lead now, that won’t happen. We have to teach ourselves how to make room for them, to love…
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Can You Lie Down?

He maketh me lie down in green pastures… Psalm 23:2a Most of us throughout our lifetime have heard this memorable psalm. There has been much written about this epic psalm but the best commentary, or explanation of it that I have read is by author Phillip Keller who has a unique perspective of actually attending to and shepherding his own flock of sheep. Mr. Keller has taken the 23rd Psalm line by line, each line making up a chapter of the book entitled A Shepherd Looks at Psalm 23 (Zondervan). He writes in chapter 3: The strange thing about sheep is that because of their very make-up it is almost impossible for them to be made to lie down unless four requirments are met. Owing to their timidity they refuse to lie down unless they are free from all fear. Because of their social behavior within a flock of sheep will not lie down unless they are free from friction with the others if their kind. If tormented by flies or parasites, sheep will not lie down. Only when free of these pests can they relax. Lastly, sheep will not lie down as long as they feel in need of finding food. They must be free from hunger. Later in the same chapter he talks about the role of the shepherd: The unique aspect of this picture is that it is only the sheepman himslelf who can provide release from these anxieties… …It is acutally he who makes it possible for them to…
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What’s in a Kiss?

We will celebrate with Matthew on Monday (June 28) his 9 year birthday. We can truly say that we have been blessed beyond words with all of the things we have learned, both good and bad with having someone like Matthew in our family. He has given us very unique chances to feel the fingertips of God in many ways. A few days after this event we will celebrate the July 4th holiday. For the past 9 years this holiday has brought a totally different emotion for Theresa and I. Matthew was placed in the NeoNatal intensive Care Unit and Theresa was trying to maintain her bedside vigil and recover from an emergency C-section. We agreed to have her spend one night at home. We will always remember the morning of July 4, 2001 when we received the phone call that informed us that our little bundle of joy was hooked up to a ventilator, life support, during the night. Our hearts sank and our spirits were crushed as we were informed that Matthew was beginning to give up his fight to breath and process oxygen effectively. We were told that the ventilator would provide him relief. We visited and hung out with him most of the day. We wanted to provide some “normal time” to Hannah and Megan, and decided to take them to our small town fireworks. As our girls frolicked in the grass with sparklers, Theresa and I sat in the car, crying and praying for our little boy. Praying that the…
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A Healthy Deposit

You may have noticed that I have skipped a few postings. The weeks leading up to a week vacation can get so filled with last-minute things and lists that need to be done. I gave myself the permission to take a break from writing as well to be able to reflect and focus on where this blog and book are going and what direction to take to get there. Thanks to all of you who have submitted feedback. I hope to include the ideas in upcoming entries. Check out the prayer list in the tag lines under the picture of Matthew in the car. If you have a comment please feel free to speak up. While returning from a week of fishing I had the opportunity to drive through my old neighborhood. It is amazing how a flood of memories can come rushing through your head just looking at the familiar surroundings. Everything seems so much smaller, the yards, the houses, the sand lot where we played baseball, the hill we use to slide on, the skating rink, the walk to school. The only things bigger where the trees I used to climb as a kid. I sat there for a few moments recalling the time my bare foot got caught in the spokes of my brothers bicycle while I rode double on the handle bars. The times my brother would use me as a crash test dummy with a new design for a go-cart. The time I was Evel Knievel and tried…
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Where's Matt?

We have an occurrence every few minutes of every day of our lives in our family that can be refered to as the “where’s Matt?” check. This can be either conscious or subconscious, verbal or non-verbal. Even though Matthew will soon be nine years old his actions and curiosity are much like having a perpetual “terrible two’s” child scenario in our lives. As Matthew has increased his passion and knowledge of hardware such as privacy locks, hasps, dead bolts, barrel bolts, etc., It has become increasingly difficult to confine him within the walls of our home. The thought of barbed wire and chain link has come to mind but finding the balance between function and the rules and art of home decor has to be put into the equation. About a week ago Matthew tested the Emergency Broadcast System in our home once again. To set the stage for this event I need to tell you a little bit of information about an obsessive compulsive trait that Matthew has in the area of stashing objects. He is particularly fond of plastic puzzle pieces and enjoys placing them in obscure hiding spots like under the stove, behind the stove, behind the fridge, behind dressers out the windows, off the deck and his most favorite spot, down the register vents. I have since taken steps of installing hardware cloth to the inside of the vents along with screwing them to the floors and walls, but he still finds ways to pry them away. I have had to disassemble our duct work on a few occasions to…
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Busy, busy, busy…

Have you ever been at the point in your job or family that you are so busy that you feel like you are just spinning your wheels? There have been times in my own life where I have put so many things into my schedule and filled the in-between-time with other distractions like radio, tv or the internet that little things, then bigger start to slip. We have forgotten the art of relaxing, even if it is only 15 minutes or so to remove the distractions around us. One thing that I have implemented in my own life is to start each day with quiet time for reading and reflection. This is before I check emails, news or the weather. To borrow a book title from one of my favorite authors, Dan Miller, it sets “The Rudder for the Day” for me. I have found that by hitting the “refresh” button each day in the morning, I can react to problems better, be more creative, and see things more clearly. There was a time last summer when Theresa and I were pulling double duty. We were with a daughter, two towns apart, at softball games. Matthew was with me and we were hanging out in the car watching the game from right field. One of the girls had placed some posters purchased at a garage sale in the visor of my car and gave me explicit instructions to not let Matthew get them. We know in our family that Matthew could be…
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Are you listening?

Are you tuned into the people around you? Really? It seems that face-to-face communication can almost be eliminated today. With the use of email, Facebook, Twitter and texting, human interaction is becoming a lost art. There are just some things that are missed in communication when it is not done through the “human” interface. Emails, tweets, Facebook posts and texts cannot compare to the warmth of a smile, the ire of a frown or the “tone” of a voice. Facial expressions and body language sometimes can give more information than the words themselves. St. Francis of Assisi was quoted as saying “Preach the Gospel at all times and when necessary use words.” As the saying goes; actions speak louder than words. A few years ago as my co-workers in ministry and I arrived at a host church to begin a day of planning and prayer. We were all geared to do the usual, predictable routine. Some opening remarks, some prayer and songs, then proceed with the agenda for the day. Things took a dramatic turn when it was announced that the day was going to be a silent day of reflection. Silent, meaning no words at all among 50 people, even during lunch. It was awkward to say the least. We were presented with no means of communication other than facial expressions, animated gestures and pointing. The great thing about the experience was that we all compensated by sharpening our other senses and we survived the day. Little did I know at the time that…
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Lick for input

We have had the pleasure of attending many different workshops, seminars and conferences over the years that have dealt with everything from legal, behavior, feeding, respite care, speech and a host of other issues that come with the territory of dealing with the special needs. One session at a conference that struck a nerve with me was one that had to do with sensory input and sensory needs. It opened up a whole new world to me about further understanding some of Matthew’s behaviors and how they may seem odd to other people. The speaker was David Brown who is a specialist who works with special needs children in California. He is a gentle person who has a unique gift of communicating and connecting with kids, especially those who have disabilities. His presentation was about listening to the “behaviors” that our kids exhibit, whether they have learning disabilities or not. He commented that while he was presenting, he noticed that most of the people in the room were showing signs of “self-stimulation” or self-stim. That made everyone squirm a little wondering what they may have done and caused some to look around to see who he may have been talking about. He went on to inform that one person, if not several were twirling their pen in their hand, others were tapping fingers on the tables, others were bouncing their knees up and down, some doodling, still others were yawning. His point was that our bodies have a constant need for stimulation, some are just…
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