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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Tag Archive: Inspriational

All lined up…

Next to July and August, our county fair season, November and December are probably our busiest months of the year. Mainly for my responsibilities at my work and our involvement with our church’s Christmas production each year. For me, both go hand-in-hand. This truly becomes a family affair each year…even Sarah Anne has become involved, last year as “baby Jesus” and this year a part of the overture number at the beginning of the show. Matthew enjoyed a front row seat for the final dress rehearsal…this rehearsal is open to all special needs persons and their families, free of charge. We take the time to remove several pews and make adaptations such as close captioning the show on the big screen for this special night. We were honored with an audience of nearly 800 guests. What we appreciate about this unique performance is the sight of Matthew lying on the floor enjoying the lights hanging from the ceiling is not out of the ordinary…nor is the occasional need for someone in the audience to sing along with the cast and choir. In fact, a few years ago, our choir and orchestra director had a guest stand along beside him and help conduct. One special moment I recall this past week is one I had with Matthew at Megan’s orchestra concert. I enjoyed the concert from the narthex of the church due to Matthew feeling the need to sing along to the music. We were playing his game of him signing a random…
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Resolutions…

We are fast approaching the season of the “New Year’s Resolution”…the time of year most people reflect on the past year and make grand plans of making a change in their lives. It is healthy after all to take an inventory of the bad and the good and make adjustments accordingly. Take Matthew for example. For no known trigger or timing, he randomly decides to “clean house” in his room. Everything that he has access to and is small enough to fit through the door gets tossed out into the hall. Some items make the further trip down the hall and down the stairs. I guess some of those items need to get further away from him. One day, an hour or so after purging his room I heard his door open and witnessed his beloved Molly doll (from The Big Comfy Couch series) flying through the air, hitting the wall and landing on the heap. They must have had a disagreement. I have moments in my life that I need to “clean house.” Those of you who are close to me know that I am an artistic, creative person who thrives in having the pressure of a deadline. Also, I mostly work in a very messy environment…My desk would be living proof of that statement. Furthermore, when starting a new project, I have a tendency to empty out the tool box on the floor where I can see all the tools I have to work with. I know that I drive some people to the edge with…
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The right fit…

I have written before about how Matthew has used videos to learn sign. He enjoys many other learning videos, 60 or more, with which we us to interact with him. We have what most of you may have at home in a DVD player that is attached to a television. Matthew has learned to operate on his own after we insert the DVD he has requested. What has become our nearly 6 year challenge is to find the appropriate portable DVD player. Currently we are on number 10 in the portable DVD category. You see, Matthew is not the most gentle with his most prized possession. He has not fully comprehended that when he is done with a session of viewing DVD’s the player does not need to go down the stairs to be turned off. Also, the term “portable” to him may mean something different to us. His definition of portable includes dragging it from room to room by the charging cord.   I have searched the entire market looking for the perfect rugged, portable DVD player. Folks, there are none out there. The only one that I found that referred to the construction as rugged only had rubber corners on it. The only thing rugged about it was that the rubber corners made it a very expensive, soothing sensory input chew toy for Matthew. We needed a DVD player that would stand up to the following…all of which either did a DVD player in, or aided in ending the life…
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Thankful

When we hold on too hard to the past we hinder our ability to accept the future and all the possibilities that could be

Slow down, spell it out…

We sometimes wonder in our home who is teaching whom. Just this last week Theresa was sitting on the floor with Matthew playing word games as he likes to do. He was signing words and phrases and we were saying them out loud with speech. As often is the case, Matthew was signing phrases, in order from one of his DVD’s of Signing Times. Signing Times is a series of very well done DVD’s where learning sign is done with music and fun graphics. Matthew has almost exclusively learned to sign by watching them. The phrase that he was trying to have Theresa say was “make the bed.” The sign is a compound sign of a few different motions. Matthew was signing it by placing his two hands together like to pray and laying his head on them as if they were a pillow, then taking his two hands as if he was pulling at the bed sheets to flatten. Theresa could make out the bed part, but couldn’t understand what else he was doing with his hands. Usually in a situation such as this, no matter how many times we sign that we don’t understand, he will get upset, occasionally throw in the sign “pay attention” (smarty pants) and then give up. This time, however, he was patient. He did the sign several times, then stopped. He then signed two distinct signs, having Theresa say both words. First the word “bed”…then he signed “make.” I know it may not sound like much to most people…
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Words can cut…

While traveling recently on my way home from an extended trip I experienced one of those dreaded delays that inevitably come when you travel. I missed a connecting flight, the very last flight of my journey home from the other side of the world due to our plane landing late. You can imagine that there were many emotions going through my body and mind after almost 45 hours of being awake with little sleep. By the time my travel companion and I made it to the counter to the people who handle re-connecting you with another flight, there were several people already in line…people from our own flight and one that occurred just before us. As we made our way toward the front of the line the associates at the counter were dealing with each case. One gentleman, who apparently was not being appeased, tossed his tickets on the counter, said a few choice words about where they could park their plane, and stormed off. I know that at times I have had this same emotion…I have never acted upon it, but have experienced it. I would assume that the people behind the counter who are there to specifically deal with “heated” moments like these have specialized training in dealing with people who’s travel plans have been interrupted. What happened next is the topic of this week’s Blog. I am not going to point out the airline, nor specifically the person…I won’t because I know that I have been faced with…
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Home

What do you think about when you hear the word “home”? Is home a physical place for you, or is it more than that? For me it is not the walls, but what happens in them. “Love begins at home, and it is not how much we do… but how much love we put in that action.”  Mother Teresa For Matthew, home is wherever his mat is. Let me explain…Three years ago in the spring Theresa borrowed and then purchased a NIKKEN seat pad from a friend who raved of the benefit that the rare earth magnets housed inside of the pad in easing the pain of a hurting back while traveling in the car. Theresa was experiencing the same pain and thought she would give it a try. surprisingly it did help and for the next few months the pad resided on an office chair in front of our computer. That summer we attended the Bi-Annual CHARGE Conference in Costa Mesa, California. Upon arrival at the first hotel we placed the pad on Matt’s wheelchair with the only intent of not having to carry it with the rest of the luggage to the room. That was all it took for Matthew to gain ownership of that mat. Ever since that day, Matthew has taken that mat with him whenever we have gone on a trip. It even gets carted from room to room in our home. When Matthew needs a break and some time to “re-boot”, he lyes on his mat. He…
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The Holy City

As I sit down to put together some words for this week’s “Lessons from the Book of Matthew” I do so from around the other side of the globe. Two weeks into a three week journey I find myself looking out a hotel room window at the city of Jerusalem, Israel. My journeys have taken me from the Southern region of Europe in Greece, Crete, Turkey, Cypress and now Israel. I hope to share more over the next several months in future “Lessons”. I will not fully be able to digest everything I have seen and experienced until I get home and let it all sink in. I have visited the places that Paul visited during the early stages of the church, walked in the footsteps of Jesus in the cities of Bethlehem, Nazareth, Galilee and Jerusalem. I have stood and prayed at the place where Jesus started his public ministry, where he gave us the Beatitudes, where he ate the Last Supper, where he prayed his last night, where he was crucified, died and was buried. What I want to share with you today is the thought that occurred to me as we were taking a boat ride on the Sea of Galilee where Jesus approached four fishermen. As Jesus walked along the shore of the Lake Galilee, he saw two brothers who were fishermen, Simon (called Peter) and his brother Andrew, catching fish in the lake with a net. Jesus said to them, “Come with me, and I will teach…
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The Journey

As I send this out this evening I am sitting in a hotel room in New York City on the eve of leaving for a long, 21 day journey. The last few days have been full of last minute details and packing. The though occurred to me over the last few days about the stark difference the packing list is between whether or not you are taking children with you. On Tuesday I leave with a friend to travel to the Holy Land on a tour of Greece, Israel and Petra. I am sad that I will be leaving my family at home but am encouraged by all of our friends who have offered to help out if Theresa needs it. It is truly a miracle in how this trip came about…through the generosity of the friend I am traveling with, his wife and the answer to prayer that they both received and felt that I was supposed to accompany him as a travel companion on this trip in her absence. I am excited about the trip. I really do not know what to expect but those who have gone have told me that I will never be the same and it is an incredible growing experience. Back to the packing topic…I recall several years ago when we made a trip to California to attend a CHARGE Conference and spend a little time sight seeing…we nearly loaded down the plane. Just the things for Matthew was almost enough to fill our van. Feeding supplies, diapers, clothes, extra stomach buttons,…
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A Player or a Fan?

As a young boy growing up in a small college town I was like most other boys in that I participated in t-ball, then minor league, then little league until I was old enough for pony league baseball. I was never very good at it, but I did enjoy being part of a team who did well once in a while. I even pitched an inning in an All Star game and did surprising well. Well in that I didn’t hit anyone and struck a few people out. This next week we will enter into the 107th post season of what we know as Major League Baseball. If you are a baseball fan, or even a fan of any sports, nothing is more engaging than the World Series. Over the years we have seen hallmark stadium names being replaced with corporate names, there have been drug and gambling scandals that have scared the game, even for a brief time ladies played the game while the boys were off to war…but the game itself has not changed. Even though it has been a while since I have actually played the game there is nothing like the feel of a brand new baseball and smell of the leather cover. The feel of a perfectly broken in glove or the solid feel of a bat when a baseball hits it in the sweet spot and the ball launches into the outfield between two fielders. Watching my own kids play the game brings back a flood of memories of…
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