web analytics

kmtroupe@gmail.com

Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Latest Posts

Pray and expect…

“In the morning, O Lord, you hear my voice. In the morning I lay my requests before you and wait in expectation”  Psalm 5:3 NIV After nearly 10 years of knowing that this day would come, Matthew will be having surgery this week to repair his heart. It has been with much consultation with specialists, prayer and discernment that we have made the decision to go forward with this procedure. If you want to read more about what the surgery involves you may read a previous post: A matter of heart and to read about the decisions we have faced read the previous post: The pain passes We can do nothing more at this point than to take God and the Psalmist at His word and to trust that He will hear our request and guide the surgical team, the other specialists and the nursing team as they care for Matthew. Our prayer is that they will find something similar to the experience we had when Matthew had surgery to repair his sinus a few years ago. The exact words from the surgeon were “I can’t explain it, but when we got in there, it looked nothing like the MRI showed…” They ended up “cleaning up” some cartilage, doing it all through his nose instead of having to do the planned procedure of opening up the roof of his mouth to make the repairs. We knew right away how to explain it…prayer with expectant faith. I know for some people, especially those…
Read more

The pain passes…

This past week has been one of the most trying for us as a family in a long time. Over the duration of 10 days all six of us have had the flu in some degree…mild to strong. We even had to cancel a trip to the University of Michigan for some pre-testing for Matthew’s heart surgery coming on the first of April. I can’t help but note that Matthew was the quickest to rebound and become himself again…even a brief moment of what we like to call “obnoxiously happy” where he runs up and down our hallway flapping his arms, shrieking and laughing along the way. I think that I speak for all parents that it is amazing how a glassy-eyed, fever rich and I will add a child with “fever breath” as Theresa calls it (must be a mom thing) can go from these symptoms to up and playing with just a little fever reducer and about an hour. We have even noticed with Matthew that sometimes he has even worked through the pain and still played after a surgery or immediately after a procedure. French painter Auguste Renoir in his last 14 years of his life battled with crippling arthritis. The last ten years he was alive he became good friends with Henri Matisse, another artist who was nearly 28 years younger, who visited him everyday. The arthritis in Renoir’s hands was so crippling and painful that he could not pick up a brush on his own…only after…
Read more

In good times and in bad…

Before I begin with the topic this week I ask for your prayers for a successful Echocardiogram of Matthew’s heart on Monday, March 14. He will be having this done on at the University of Michigan Childrens Hospital as a final look at what the mitral valve looks like before his heart surgery on April 1…thanks! As Theresa and I entered the arena of raising a child with special needs we were cautioned about protecting our marriage. “The marriage failure rate of parents of children with special needs is around 80-90%…” we were warned “…these are cold, hard statistics”. I think at the time we catalogued that in our memory and pressed on with the business of raising our children. Matthew will be turning ten this year in late June and Theresa and I will be celebrating our 20th year of marriage in October. I guess you could say that we have gone against the odds according to what the statistics say. As I have been thinking about this 20 year milestone it made me think about what kind of trust I have in statistics. I began a search of where that 80-90% “statistic” came from…frankly, I found much written about this mythical number but not much evidence to back it up. Many have heard it but I couldn’t find anyone who could quote the source…in fact, many of the studies I found actually showed that the numbers were less than the national average of marriage failures. Theresa and I know first-hand…
Read more

I need a hug…

A sincere thank you to those who regularly read this weekly blog…I hope it has been as encouraging to you to read as it has been to me to write and put together. You may have noticed a few changes, mainly in the colors and backgrounds. What you may not have noticed is that Lessons from the Book of Matthew now has it’s own hosted web-site:  lessonsfrommatthew.com  By moving in this direction I will be able to add more features to this site such as the opportunity in the upper right corner to become part of Matthew’s Prayer Team. Some of you are already involved and have been involved for many years. Matthew’s Prayer Team receives a notice when a new blog is posted along with a prayer list specific to that week. Thank you for your interest in this beautiful gift from God…our Matthew. I finished a book recently about a single mother who was abandoned by her husband after not being able to handle the pressure of raising a special needs son. In this case it was a child with autism. The title of the book was Dancing with Max and the author was Emily Colson, daughter of Charles Colson, founder and president of Prison Fellowship and former aide to President Nixon. This book was filled with many stories and experiences that resonated with our family. Emily’s insights and vivid honesty to those who challenged her intuition and heart concerning the best interest of her son Max was very engaging and powerful. One…
Read more

Suction Please!

Here in Western Michigan we have just made it through yet another snow storm. Another clearing of the driveway, another clearing of the end of the driveway after the snowplow guy deposits half of the snow from our road there, another repositioning of the mailbox on the post after the plow guy knocked it off (I swear those guys tally points for that)…makes me think of warmer days and thoughts of summer and vacations. As my thoughts wandered off and finally settled I found myself recalling a vacation a few years ago that accompanied a conference we attended in Costa Mesa California. With the help of some friends we were able to stick around for a few days and make some stops at some of the local attractions…one of those stops included the San Diego Zoo. That day the place was packed and people were shoulder-to-shoulder everywhere we went. Add to the crowd two wheelchairs, one belonging to Matthew, the other to the son of a fellow CHARGE family, Keegan, made for an extra obstacle course challenge. All was going well at the zoo…our feeding schedules were synced, our other kids where having fun together and us adults were enjoying our time of relaxing. A postcard moment…until Keegan decided to shove one of the m&m candies he was enjoying up his nose. If you are not around those with special needs you may have never experienced the sensation and visual awe of how the parting of the Red Sea may have been. The “parting” we…
Read more

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…
Read more

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…
Read more

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…
Read more

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…
Read more

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…
Read more