Posted by: kmtroupe | February 18, 2011

It is what you make it…

It is the middle of February, just two weeks removed from a record-setting snow storm that dumped 16 inches of snow in our corner of the world in West Michigan. Today we are experiencing unseasonable warm temperatures in the 50’s. For some, you would think that it is in the 80’s and time for a beach run. It is amazing how a little sunshine and a swing of nearly 40 degrees can change an attitude.

“A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes.”  Hugh Downs

I have to admit that sometimes I envy Matthew’s ability to be happy. He makes the best of most situations and improvises when needed. The photo at the left is Matthew trying to ride his Pretty Pony after some therapeutic horse back riding. He does have bad days but usually a bad day is an indicator of a physical problem, not a reflection of what is happening around him. He really does not have the ability to understand rejection, people staring at him or ridicule. He has no self-image issues and could really care less about what people think about him. Why is it so hard for us? Why do we get so caught up in how other people view us? I have seen this broken down into two areas…reputation – how others view us and character – how we really are.

“Character is like a tree and reputation like a shadow. The shadow is what we think of it; the tree is the real thing.”  Abraham Lincoln

As God led Samuel on his task of anointing a new king he cautioned Samuel on appearances as the sons of Jesse stood before him. As he came upon Eliab and Samuel looked him up and down, God had this to say:

But the Lord said to Samuel, “Do not consider his appearance or his height, for I have rejected him. The Lord does not look a the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart.”  1 Samuel 16:7

They passed seven men in front of Samuel and each were not up to par. The chosen one, the youngest, scrawny shepherd boy who was not even invited to the line-up.

Back to the attitude part…it doesn’t matter what others see. Our attitude and character should be shaped by who we are and the in the image of who created us. God sees us bigger, more powerful, more creative, more talented and more beautiful than we could ever imagine ourselves.

I will close this thought with the following quote made by the daughter of a family friend while baking:

“I love powdered sugar. It’s like eating sweet flour.” Savannah

Thank you, Matthew for showing us how to love ourselves and be happy…Thank you, Savannah for reminding us that life really is what you make it. Thank you, Lord for loving me and seeing me like David…as a warrior king, not just a shepherd boy.

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Posted by: kmtroupe | February 10, 2011

The fence…

Upon entering the living space of our home, the great room, one cannot help but notice the adaptation we have had to make to separate this open space for the sake of safety and sanity. Our great room consists of the living room, dining room and the kitchen as one large expanse with vaulted ceilings. Having known that we would be gifted with the opportunity to raise a special needs child we would have probably chosen a different home layout complete with concrete floors, walls that would absorb impact, countertops that double as chewable sensory imput devices, windows we can actually open without fear of Matthew throwing our possessions out of, radiant heat so the vents and ductwork would not become toy storage…you get my point. We never imagined the added value of the entertainment watching guests in our home try to negotiate the maze and figure out the gate latches.

Over the years the fence has moved and changed configuration and purpose. Once used to keep the dogs out of the living room and to keep Matthew out of the kitchen, it is now used to keep the dogs in the same area, to keep Sarah Anne out of the kitchen and to just slow Matt down. He learned to climb the wall a long time ago. When that happened we looked at our options…taller wall or razor wire? We finally decided on no changes and to take the stance of “high alert” at all times.

One thing we can always be assured of with Matthew…he will figure out just about any obstacle we put in front of his desire and drive to get what he is after. Just this past week we realized he has figured out how to open the gates. Apparently this has been going on for a while, we have just been blaming each other for leaving gates open…which often results in one or all of the following: Toys being chewed by dogs, a full-out wrestling match of the dogs on the living room floor, Matthew opening the slider and tossing puzzle pieces into the back yard (later to be chewed by dogs), Sarah Anne playing in the dog water bowls, Sarah Anne eating dog food, etc…It is just short of looting and rioting. Alright, so maybe it isn’t that bad…We were just getting comfortable in a sense of security.

I shared a few weeks ago (The right fit…) that the DVD case that I had made for Matthew needed some work…Another victory lap for Matthew this week was that he has found out that he is strong enough to open the latches on his case. This was discovered as he was about to throw the unprotected DVD player down the stairs. A quick interception by defensive back Theresa Troupe saved the new, one week old DVD player from an untimely death. The case now has a sporty combination lock added to the side. Please, do not share with Matthew our telephone area code.

Iron rusts from disuse, stagnant water loses its purity, and in cold weather becomes frozen, even so does inaction sap the vigor of the mind.  Leonardo Da Vinci

A great quote from Leonardo Da Vinci…We can relate in that we cannot remain still in dealing with Matthew’s resolve. We have to remain in constant movement and keep ahead of him.

Our spiritual life is not much different. We must always continue to move forward, keeping our eye on the goal. Paul worded it like this in a letter to the Philippians:

“Not that I have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”  Philippians 3:12-14

Press on Matthew, we are watching and ready to react…Press on brothers and sisters, He is watching and ready to help and ready to reward.

Posted by: kmtroupe | February 4, 2011

A matter of heart…

In the past few months we have looked at the four major “C’s” of CHARGE Syndrome. This week I am skipping to the “H” in CHARGE and talk about the Heart anomalies that are present in 60-80% of those who have CHARGE Syndrome and how they specifically effect Matthew.

Those of you who are close to Matthew notice right away that he is not as large as most kids his age. At age 9 he is still only about 40 pounds and only about 40″ in height. There are mainly three reasons for this…Feeding, growth hormone and heart issues.

At three months of age Matthew had surgery on one of two issues that his heart struggles with. He had surgery to repair PDA (Patent Ductus Arteriosus for those keeping score), which is a vessel that connects the two major arteries while in the womb. Within minutes to days after birth this vessel closes on its own and stops oxygen rich blood from entering the heart. For some, this vessel remains open (or patent) and causes strain on the heart in the form of high blood pressure in the lung arteries. This was the case for Matthew and was successful repaired.

The second issue is one that Matthew continues to deal with…a leaking mitral valve. As a carpenter and maintenance man I have put this in my terminology as an explanation. Think of the heart as your house. In your house there are two upper rooms, the Right Atrium and the Left Atrium. These rooms are divided by a wall called the Atrium Septum. There are also two rooms in the downstairs, the Right Ventricle and the Left Ventricle. These two rooms are divided by a wall called the Ventricular Septum. Now, between the upstairs and downstairs right and left there are stairways. In these stairways there are swinging doors, on the right this swinging door is called the Tricuspid Valve and on the left it is called the Mitral Valve. For Matthew, this swinging door is the one that is in need of some work.

Since birth we have been prepared for a replacement of this “door”. If one has ever been through a remodel, replacing a door and the frame is not a small task, especially fitting a new door in an older opening…A repair of a door is much less intrusive and disruptive. We are thrilled and thankful that as Matthew has grown the specialists on Matthew’s team have determined that there is enough of the door to make a repair. It may not be perfect, but much more functional than what is there now.

I have fast forwarded to the Heart part of CHARGE as this week we have accepted a surgery date for April 1 to have this repair on Matthew’s Mitral Valve (his swinging door) done. It is not without fear and second guessing. Any surgery, no matter how minor or major is without risk. As we have begun sharing this milestone date with friends and family, we are comforted with the reality that we will have an army of prayer warriors helping make this surgery a success. Immediately upon sharing this news with my co-workers I was sent this passage in return:

I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”  Psalm 91:2

Please pray for the Troupe’s as we go through this journey over the next few months of prep, the surgery, an extended stay in the hospital and the recovery. This journey will be painful physically for Matthew, emotionally and spiritually for the rest of us.

Posted by: kmtroupe | January 24, 2011

Maintenance and rest…

This past week I was able to take some much-needed time off from work and spend it at home having a little guy time with Matthew as Theresa and the girls went to the other side of the state for a dog show.

In between the books that I read to Matthew and the book I was reading Matthew and I took the time for an outing to do some errands. The last stop was to get a much-needed oil change on my vehicle. I have to admit, I was a little overdue for getting it done. It got me thinking about the whole “standard” of when to get the oil changed. The oil change places have engrained in us and are barking out the every 3,000 mile mantra…although it maybe a little self-serving. The actual manual for my vehicle says every 5,000 miles. After a search of experts and forums on the internet the result yielded was between 5,000 and 10,000 miles…but that is based on the type of driving you do and conditions in which you drive. While all of this was going through my head I look over at Matthew while the oil change is going on. He had this very focused look on his face, trying to take in all of the sounds that were happening under and around the car. Every so often he would smile after the sound of an air wrench in the background.

The oil change, greasing the joints and topping off of fluids always seems to put a spring in the step of my ever-growing older car. Afterall, it is approaching a quarter of a million miles on it. This maintenance experience and taking a few days off started a thought process that made me look at my own maintenance schedule. What is the recommended “service” schedule for you and me? What is God asking of me when it comes to prayer and taking a break for a time of rest.

Prayer: Paul and Timothy in their letter the Thessalonians encouraged their brothers to “pray without ceasing” (1 Thessalonians 5:17). Does that mean they were to pray every second of the day? Probably not, but I take it to mean that they are to take on the very heart of God, seeking his wisdom and guidance in everything they say and do throughout the day…more like a conversation with a friend would be. Paul also mentioned this in his letter to the Philippians by telling them “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God” (Philippians 4:6).

Rest and Relaxation: “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth” (Psalm 46:10). “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls” (Matthew 11:28-29). I know that it isn’t always easy to take time to rest and sit in God’s presence. But, I also know that when I do take the time to be still and relax and share the things that I have allowed to burden me I come away from it refreshed.

Kevin patting Matthew, Sarah Anne patting Kevin

“When was the last time you spent a quiet moment just doing nothing – just sitting and looking at the sea, or watching the wind blowing the tree limbs, or waves rippling on a pond, a flickering candle or children playing in the park?”  Ralph Marston Author of The Daily Motivator

What is your service schedule…are you due for a change?

Posted by: kmtroupe | January 19, 2011

Born to be wild…

Expanding on the “four C’s” of CHARGE Syndrome this week, we will look at the Characteristic Ear, specifically the inner make-up of Matthew’s ears.

As I have shared before, Matthew lacks proper formation of his semicircular canals in his inner ear. For you and I, along with our eyes, they are the central function that gives us our balance and allows us to walk or even stand. The fact that Matthew can stand up or even be able to walk and run is nothing short of a miracle. Think of a time when you had a head cold and your head and ears were “stuffy” and just the act of standing up too fast or leaning forward caused you to be off-balance. It is believed that this is the feeling that Matthew has most of the time. Once the visual impairment is added to the vestibular anomalies mobility seems almost impossible.

Apparently nobody told Matthew how much difficulty he should have standing, walking or climbing…Matthew has given all of us heart palpitations showing us his ability and creativity to climb. I recall a few years back when I received a frantic phone call from Theresa with a play-by-play account of what “your son” had just accomplished; he opened the oven door, climbed on top of the oven, over the counter, used the mail sorter as a ladder to the top of the fridge, stepped from fridge to the top of the microwave above the oven, climbed from the microwave to the top of the upper cabinets to gain access to the puzzle piece he had thrown there. When Theresa found him he was lying down on top of the cabinets happily playing with his long-lost puzzle piece. As Theresa was regaining her normal breathing rythym…I was thinking to myself, that’s my boy.

Special needs aside, Matthew is still a boy and will still act like a boy. John Eldridge in his book Wild at Heart sums it up well:

“Little boys yearn to know they are powerful, they are dangerous, they are someone to be reckoned with. How many parents have tried in vain to prevent little Timmy from playing with guns? Give it up. If you do not supply a boy with weapons, he will make them from whatever materials are at hand. My boys chew their graham crackers into the shape of hand guns at the breakfast table. Every stick or fallen branch is a spear, or better, a bazooka. Despite what many modern educators would say, this is not a psychological disaster brought on by violent television or chemical imbalance. Aggression is part of the masculine design, we are hardwired for it. If we believe that man is made in the image if God, then we would do well to remember that ‘the LORD is a warrior; the LORD is his name’ Exodus 15:3

I was challenged further in Wild at Heart as John strengthened his argument:

“The problem with men, we are told, is that they don’t know how to keep their promises, be spiritual leaders, talk to their wives, or raise their children. But, if they will try really hard, they can reach the lofty summit of becoming…a nice guy….Now in all your boyhood dreams growing up, did you ever dream of becoming a nice guy? Ladies, was the Prince of your dreams dashing…or merely nice?…Deep in his heart, every man longs for a battle to fight, and adventure to live, and a beauty to rescue. That is how he bears the image of God; that is what God made him to be.”

When Matthew does something that makes our heart race I am reminded of the times I sled down our neighbors driveway when I was a boy. We couldn’t just slide down the long driveway for the thrill of the wind in our hair. No, we had to add the element of a person on our back, fighting the whole way down trying to knock each other off the side of the drive. I remember jumping bikes over creeks, climbing trees, building forts, making sprawling cities in the sandbox…those were the days.

Matthew, every time you do something that makes you every bit a boy…you make be want to be more than just a nice guy. You make me, all the more, want to …”bear the image of God.”

Posted by: kmtroupe | January 9, 2011

The 4 “C’s” of CHARGE

After receiving some feedback and comments from those of you who faithfully read “Lesson’s” I though I would take some time now and then to give you a little information about the little known genetic disorder called CHARGE Syndrome that Matthew carries as a diagnosis.

CHARGE Syndrome is very complex and has many layers…Matthew’s diagnosis was not immediate and was a little complicated to put the pieces together for the geneticist. It took months to finally arrive at this “CHARGE” thing that Theresa and I immediately started to research and gain information. There are tiers to the diagnosis consisting of the “Major”, “Minor” and “Other” features and characteristics of what CHARGE Syndrome really is.

The major features, the four “C’s” refer to Colobomas of the eyes, Choanal atresia or stenosis, Cranial Nerve abnormality and Characteristic ear problems that include the outer, the middle, the inner or all three combined. At this point I will refer you to the CHARGE Syndrome Foundation webpage that describes each of the tiers and a little information about each condition as you scroll down the page.    About CHARGE Page (link)    Be sure to click on the link in the information section for colobomas…The picture on the site is of Matthew’s eyes!

The grouping of these 4 “C’s” are very common to CHARGE and relatively rare in other conditions. What can be tricky about diagnosis and treatment is the severity…it can range from very mild to severe. These four “C’s” are the root cause Matthew’s vision and hearing impairment, the reason Matthew is tube-fed as a result of a weak swallow from the cranial nerve issues, and why Matthew has had surgery on his nose/sinuses.

After all of the medical tidal waves that come and go settle down we are left with the core of what we believe troubles Matthew the most…His vision and hearing loss which contribute greatly to his ability to gather, process and therefore return communication. If we were to look day-by-day at Matthew, I think we would have been frustrated and seemingly hopeless. We wondered how we would “break” through to crack open this puzzle called Matthew. I have to admit, we did have those times of frustration and hoplessness…but if we look at the cumulative progress…Matthew has come a long way. I read recently this quote from Hellen Keller who mentions these little miracles that add up to progress:

“I am just as deaf as I am blind. The problems of deafness are deeper and more complex, if not more important than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus– the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man.

Blindness separates us from things but deafness separates us from people.

Children who hear acquire language without any particular effort; the words that fall from others’ lips they catch on the wing, as it were, delightedly, while the little deaf child must trap them by a slow and often painful process. But whatever the process, the result is wonderful. Gradually from naming an object we advance step by step until we have traversed the vast distance between our first stammered syllable and the sweep of thought in a line of Shakespeare.”  Hellen Keller

With Sarah Anne, now 17 months old, we can relate to the hearing child acquiring language without any particular effort and are reminded that a deaf or hearing impaired child must trap words in a slow and often painful process. We would also wholeheartedly agree that whatever the process, the result is wonderful.

As I was reflecting on this post and wondering how I was going to add a “Lesson” for this week. I quickly was reminded of how, even though I have sight (with corrective lenses and bi-focals) and hearing…I am just as blind and deaf at times as Matthew.

Once again I will put myself into the same shoes as the disciples…who, after witnessing several miracles, still could not see past the end of thier noses. Jesus had these words for them:

The disciples had forgotten to bring bread, except for one loaf they had with them in the boat. “Be careful,” Jesus warned them. “Watch out for the yeast of the Pharisees and that of Herod.”

They discussed this with one another and said, “It is because we have no bread.”

Aware of their discussion, Jesus asked them: “Why are you talking about having no bread? Do you still not see or understand? Are your hearts hardened? Do you have eyes but fail to see, and ears but fail to hear? And don’t you remember? When I broke the five loaves for the five thousand, how many basketfuls of pieces did you pick up?”

“Twelve,” they replied.

“And when I broke the seven loaves for the four thousand, how many basketfuls of pieces did you pick up?”

They answered, “Seven.”

He said to them, “Do you still not understand?”

Mark 8:14-21

My prayer this week is to have eyes to see and ears to hear the miracles that are happening all around me and to see and hear the needs of others. What are you seeing and hearing around you?

Posted by: kmtroupe | January 3, 2011

Can’t sleep?

If you are like me…an interrupted night of sleep can have consequences that last a few days. Recently, after an overseas flight which included crossing many time zones, I spent several days catching up and to get my internal clock in line with the one on the wall. For some unknown reason, CHARGE kids and others with certain diagnosis, develop and show some strange habits in the area sleep.

Most of the time Matthew sleeps just fine…he will go to bed around 10:00 p.m. with no or just a little prompting from us. occasionally we get a whine out of him as we have and still do from our other children. His awake time, with little exception is alway around 7:30 a.m. where he will rock back-and-forth or start to play in his room on his own. But, ever so often he will start a pattern of not going to sleep, or will wake up at an odd hour as if it were morning. The worst is when he only manages a few hours of sleep in a night. The oddest thing about these episodes is that he still manages to wake up at his normal time. We have experienced with other children that the lack of sleep or a missed nap causes them to be cranky. In Matthew’s case he becomes obnoxiously happy and giddy. Often running up and down the hallway flapping his arms like a bird and slapping his legs as he goes. It can be quite humorous…for the first hour. We have no choice but to have one of us remain awake to do damage control.

It is usually quite different for me if I cannot sleep…sometimes it is an ill-timed coffee or a certain food that can keep me up. More often though it is worry or anxiousness that can keep me awake. I can usually correspond the worry with lack of quiet time and prayer. An old saying I can relate to is; “seven days without prayer makes one weak.”

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?…But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  Matthew 6 25-27, 33-34

These words ring in the new year for me. My motto and prayer for this year is to continually echo the words of the Gospel of Matthew…”Seek first his kingdom and his righteousness, and all these things will be given to you as well.” I will try to think like Matthew as he is much like the birds of the air, he does not sow or reap but we would never think about not providing for him and his needs. I can only imagine how my Heavenly Father wants to provide for me if I would only stop trying to do it all by myself and allow him to take control.

Worry is interest paid on trouble before it comes due.  William Ralph Inge

Can’t sleep…How much interest have you paid in the last week?

Posted by: kmtroupe | December 26, 2010

The perfect gift…

For Matthew there are two things that would form the definition of the perfect gift. Discovery Toys Place and Trace puzzles and Signing Times books or DVD’s. This year Matthew received a few of both. Theresa even capped off the perfect Christmas for him with his very own elf jammies.

And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An Angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, “Do not be afraid. I bring you good news that will be for all the people. Today in the town of David a savior has been born to you; he is Christ the Lord.”   Luke 2:8-11

Matthew opening a new Signing Time book

After reading this passage more than a few times over the past several weeks something occurred to me while reading it on Christmas day…Many are acutely aware of the significance of this moment in history and what series of events that took place over the next 30 or so years after. What hit me was the incredible gift of sacrifice that was given as the result of this birth.

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. John 3:16

I was overwhelmed with what the thoughts may have been from our Heavenly Father. The thoughts of joy, but also the pain of knowing what his fate would be. He knew, if Jesus was obedient, that ultimately he would die a cruel and shameful death…a sacrificial death on behalf of you and me. Our heavenly Father took a gamble. There was risk involved. Jesus was human in every way possible and could have made the decision not to fulfill what was foretold. Mary and Joseph took a risk and believed what an angel spoke to them in person and in a dream. Jesus took a risk and stepped into his public ministry by taking that step into the Jordan River and be baptized not only with water but by the Holy Spirit.

I read a book recently by adventurer and mountain climber Eric Weihenmayer. He has, among other challenges in life, climbed the “Seven Summits”…the tallest summits on every continent in the world, including Mt. Everest. A demanding and challenging feat for any climber. Years of conditioning, training, sacrifice and failed attempts were all a part of this journey to tame these mountians…what I haven’t mentioned yet is that Eric is blind…blind since his teenage years when an eye condition claimed his vision. Eric has to rely on other senses and on a fellow climber or two who are his “eyes” at times during the climb. This excerpt particularly struck me;

While facing the challenge of jumping across a river that had cut a path through the ice and scree path 10 feet deep and 9 feet across…”You just have to trust it” he was told by his climbing partner. Eric later wrote about this experience…”There are moments in our lives when we can move forward in small increments, increasing the challenge bit by bit, but there are other times when security is merely an illusion, when we must summon our courage, gather up our past skill, and proceed by the power of sheer faith.”  from the book Touch the Top of the World

As parents Theresa and I were thrust into this journey of raising a special needs child without any warning or experience. The joy of birth and new life was quickly replaced for a short time with worry, fear, pain and a short bleak future as his medical conditions were given to us in list form. But, just as Eric wrote, we moved forward in small increments and as we gained strength and courage we were able to take larger steps. Even take leaps of faith when called to do so. It was a faith community of people who we only knew a little and some we didn’t even know at all who came forward and helped with our immediate needs. This faith community has become our church that has lifted us up when we were down, given us encouragement when we needed it, has allowed Matthew to bless them and have even extended a  hand to meet financial needs as God has prompted.

We have much to be thankful for and celebrate this holiday season. My prayer for you and your family is that you have been able to take some time to focus on the real gift that this season represents. The gift of God’s own son, Jesus.

As we move into the new year…what path of ice and scree has been cut through in front of you? What river is in front of you that you are being asked to take that leap of faith over?

Posted by: kmtroupe | December 19, 2010

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 sign and me copying the sign…when he was getting bored with this I took out my phone and started looking at picture with him. We came across a video I shot of one of the songs from the Christmas production…one with Megan dancing. When I pressed play and he saw and heard the first few notes he turned around and looked from the phone to the stage several times while laughing. I was overwhelmed with the fact that he associated the two things…the song from the performance and the stage where it should be happening.

We are becoming acutely aware of Matthew’s unquenchable thirst for sign language. Lately we have “sessions” with him for an hour or more at a time where he will take a puzzle piece out of a box or point to a puzzle board and want us to sign the picture. The funny thing about this arrangement is that he signs it before we do and corrects us if we are wrong. I have to admit, I am a little slower than most at learning all of the signs he knows…which total in the hundreds. I am grateful that he has patience with me and even takes my fingers and places them in the right position. I am learning more than sign during these sessions…I am learning that these times are not an interruption to my busy life. I have to remind myself that these times are not something trivial and something just to pass the time for Matthew. These times are our version of sitting in the sandbox and playing, or playing catch in the yard with a ball and glove, or throwing the football back and forth on a fall afternoon. These are relationship building times.

On Friday night, Matthew and I were going through the puzzle boards. In his own way he was keeping track of our progress. As we completed a board he would disappear and come back with another one. It wasn’t until I got up from the sofa and looked on the other side that I realized what he was doing with them. He aligned them in a straight line down the hall, adding them as we completed each one. I counted 21 boards when we finished.

As we enter this next week when most of us will be spending time with family and extended family don’t forget that the small stuff is the most meaningful. For many this is the most stressful time of the year as we try to impress those around us. Yes, the gifts are nice but they will wear out, be consumed or will lose their luster and interest. What we will be left with is the memories of the time we spent together.

“I’ve learned that people will forget what you said, people will forget what you did but people will never forget how you made them feel.”   Maya Angelou

Matthew, let’s go for 22 boards next time…

Posted by: kmtroupe | December 12, 2010

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.

Purging of Matthew's room

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 my messy environment, but it is where I thrive. When I create things like scenery for productions or props for sermon illustrations, I do so with no plans or blueprints. If a plan is needed, I will take the time and draw it out so other people helping have a clearer picture…but I can already see the finished product in my head.

“In every block of marble I see a statue as plain as though it stood before me, shaped and perfect in attitude and action. I have only to hew away the rough walls that imprison the lovely apparition to reveal it to the other eyes as mine see it…”

“…I saw and angel in the marble and I set him free.”

Michelangelo

My "creation station" at work (loathed by many)

I can relate. But, there is one thing that I need to do first. Start with a clean slate. I have to clean my desk, clean the workbench or organize the toolbox before I move on. I think that maybe Matthew does the same. Too much stimuli and too much clutter.

I get the same thing with my spiritual life. I see who I want to be but have a hard time releasing the statue, the thing of beauty from the marble. I need to take time the clear my head of the clutter of television, email, texts and everything else that is screaming for my attention and reflect on what is happening in my heart.

“Create in me a pure heart, O God, and renew a steadfast spirit within me.”  Psalm 51:10

As we approach this holiday season and the end of 2010 what is it that you need to throw out into the hall? I have been eyeing a few things of my own that I am sizing up to fit through the door.

A side note this week. If you are looking for a year end giving opportunity…would you consider a donation to the CHARGE Syndrome Foundation in Matthew’s name? Look under “Links” on the right…Charge it for CHARGE is the title.

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