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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Tag Archive: TEF Repair

Using a pivot point…

How good are you at handling change? Do you form plan B situations? Plan C? One thing the Troupe’s have become good at is reacting to things that come our way. Our lives have become quite scripted since Isaac joined us almost 3 years ago. We have to set a nursing care schedule a month and a half ahead. We plan for work schedules, activities, events and even for socializing. Yes, it is rigid but very necessary for us to get sleep and to be able to still be a family and do regular family things. Even the best formulated plans will develop roadblocks and bumps along the way. The challenge is how we deal with a sudden change. It seems as though God is always at work allowing certain bumps and roadblocks in our paths. These are not there to intentionally frustrate us…I believe they are there to help steer us in a direction that will be better for us, even if we do not see the benefit at the time. Commit to the Lord whatever you do, and he will establish your plans. In Their hearts humans plan their course, but the Lord establishes their steps. Proverbs 16:3,9 (NIV) Over the years we have had many chances to change the course of what we were doing. Many different trips to the Emergency room. Surgeries or procedures that didn’t go as expected and resulted in a lengthy hospital stay. In hindsight we have always been able to see the…
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Would our life be different without “special” needs?

I heard a question this past week that has made me look within several times and ponder the same question as it relates to my life. The question was: “if your life didn’t include (insert trauma, life changing event, illness, etc.) how would you think your life would be different”? For me and my family it made me ask myself the question “if we didn’t have Matthew or Isaac or both, how would our life be different”? This brought up a great conversation between Theresa and me as I asked her the same question. We both had the same answer. We both have never really thought of how it would be different. We have never really dwelled on what could have been. We both agreed though that we would not be the people we are today without the experiences we have had, good or bad over the past 14 years since Matthew was born. We both agreed that our life looked quite different from the “norm” when we had just four kids. With the addition of Isaac…it is now on a whole new level of different. Before, we dealt early on with some medical, mostly though with Matthew it has been behavior issues and a feeling of vigilant guarding for his safety. Isaac has added a whole new level with acute medical needs. I guess you would say we are well rounded now! In preparing some text for my upcoming book for editing I was reviewing some past posts. I…
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Does God give us more than we can handle…

One of the most often used phrases spoken to people who are in the middle of a crisis, struggle or burden…”God will never give us more than we can handle”. Usually followed by…”You must be really strong”. Those of us who are in the special needs community are often handed this one too “You must be really special if God has given you a such a special one to care for”. These comments are well intended and we do take them as a compliment even though sometimes they can be irritating. It guess it is better than being told “you had it coming” or “you deserved it”. Actually, in not so many words from some well-meaning people we have been questioned with why we had more kids after Matthew was born. These thoughts entered our world even more when Isaac was born…as if we were playing some kind of lottery, balancing between healthy, no problem children and CHARGE boys. By the way, we had no better chance to have two CHARGE Syndrome children than any other father and mother the first or second time. Is it really more than we can handle?….Yes, if we choose to handle it on our own. The reference to God not giving us more than we can handle comes from 1 Corinthians 10:13: No temptation has over taken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a…
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Heart Babies…Congenital Heart Defect Awareness Month

February is Congenital Heart Defect Awareness Month so I thought we would revisit this post from 2011. Almost exactly 4 years ago when Matthew had a cleft repair done on a leaking mitral valve. I wrote the following post the night after this major surgery…a little more relieved after the restless night before. This feels so long ago but still stirs emotions of wondering if Matthew would even survive the surgery. Would you take some time this week to pray for all of those families who have or will face major heart surgeries. Ours, as many have happy endings…others face the pain everyday of a child that never made it to a life saving surgery or healing. From March 4, 2011: As I sit next to Matthew’s bed, experiencing the sounds of a pediatric cardiac intensive care unit while Saturday becomes Sunday, I am overwhelmed with the goodness and faithfulness of a God who keeps his word. I am humbled by the overwhelming response of family and friends who have spread our gift of Matthew around the globe through social media and email to create an incredible chain of prayer warriors. Theresa and I are witness to the fact that prayer is powerful. We both have had an undeniable trust and peace as we go through this, yet another, opportunity to show God’s abundant power. As one can imagine, on the eve of Matthew’s surgery I was a little restless. Something about this night was different. I can count on one…
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Do we know His voice?

It never gets easy. Isaac is scheduled for a third cleft repair surgery this week, one that will focus on his lip and nose, with a slight touch-up on his palate. It will never get easy to plant that last kiss and that last squeeze of the hand as the anesthesiologist team wheels them down the hall. Speaking of wheels, check out Isaac’s new walker! He loves his new freedom! As we prepare for another surgery you would think that our nearly 40, yes 40 combined surgeries/procedures between Matthew and Isaac we would be on cruise control…but, they never get easier…in fact, they get harder. Harder because as they get older they also get wiser and it hurts more. Hurts them more and hurts us more as we sign the next consent form. Although we enter this new experience with a healthy respect and aware that there are risks we also go with a firm belief that this is all in God’s hands. You see, we are in tune with a certain voice. A voice that leads us through tough valleys AND beside restful waters. It is not easy to be tuned to that voice. There are much louder, much fancier and even sometimes seemingly more logical voices to listen to. We are surrounded by voices that pull us in many directions…unfortunately in the direction of stress, being anxious, fearful and not at peace. My sheep hear my voice and I know them, and they follow Me. John 10:27 I am sure it is no coincidence that…
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Our magic clothes dryer…

The secret is out. The Troupe’s have a magic clothes dryer in our laundry room. It is a normal one, just like the one you may have but it has, according the Matthew, one feature yours may not. Ours makes and is the source of all new pajamas. He checks it several times a day just to see what may have appeared since the last time he checked…ten minutes ago. You see, we have a rule in the Troupe house: All clothes purchased or donated new or used have to be washed first. Matthew figured out a long time ago as his obsession with clothes and fabric grew into this pajama phase…if you tear up your favorite pair, no problem…there will always be a new pair “magically” being created in the dryer. When returning home from an outing and shedding the mandatory street clothes…check the dryer. Wake up in the morning…check the dryer. Diaper change…check the dryer. So our lives go at home. All the more reason we are so thankful for our new house with main floor laundry. Of course, we all know pajamas just don’t appear out of nowhere, right? One of us has to always scour garage sales, second-hand and thrift stores to score pajamas (he is especially fond of the footed blanket sleepers). On a side note, big boys are not especially fond of the footed pajamas, hence Matthew is primarily decked out in pink or purple ones adorned with princesses, puppies, hearts or kitty’s. Matthew doesn’t care, he will…
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Preparing the way for extraordinary destiny…

Yes, it has been a long time, and yes, I am still blogging! As you know life has a way of getting so busy and out of control. I am hoping I still have your ear and that you are still willing to partner with us as we live out this extraordinary life…I love that phrase. It comes from C.S. Lewis. “Hardships often prepare ordinary people for an extraordinary destiny” C.S. Lewis Let’s see, since the last glimpse into our lives we have moved and have been working non-stop to bring our new home into “safe” and “functional” status. We have celebrated Matthew’s 13th and Sarah Anne’s 5th birthdays. We have participated in 2 county fairs (with one more to go). We just finished an illness outbreak in our home with Isaac lingering the longest (with a short hospital stay). We have just sent our two oldest on a 10 day missions trip to Guyana, Central America. And, we have an abundance of appointments/procedures lined up for Isaac and Matthew and a re-surgery of the stomach surgery Isaac had last a year ago in May that did not stay intact and needs to be redone. Many of you have been asking and are curious about our move. Here are the details! We are still in Ottawa County, about as Southwest as one can get in the city of Hudsonville, MI. There are far too many things to list and talk about in a short post…but, Theresa uses one word to describe the feeling of…
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May peace today be within…

The Troupe’s have been busy…surgeries, hospital stays, illnesses, busy work and school schedules…not unlike your own lives. Thank you for your faithfulness in praying us through the many trials and triumphs we face! We have great news to report! After an 8 month search for a safe, usable floor plan and conveniently located home…We feel we have found and have an accepted offer on a new home for the Troupe’s! More details to come after we clear all of the inspections, approvals, etc. The short is that we have found a new home (to us) in Hudsonville just 20 minutes from our church family which also happens to be where Kevin works. Quicker than the 30 minute drive we have now. We are still in Ottawa County which was important for the relationships and services we have had for the past 12 years for Matthew and now Isaac. We love the current home we live, our neighbors and the community…but, we have outgrown it in size, in safety and in function. The search was monumental and seemingly impossible to find the exact fit, all within a timely manner. We can’t deny that we were getting nervous and doubting the sale of our current home without having a new one in sight. We were down to the last 36 official days left to be able to stay in our current home which we had sold at the end of February. The countless hours of perusing homes online as well as going through,…
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Be Blessed. Be Grateful….Give Thanks

As we have completed the holiday season and launch ourselves into 2014 there are two words that would give an accurate description of the pulse of our household…Blessed and Grateful. Even before Isaac joined our family God had already taken us on a path of complete reliance and surrender when we were blessed with Matthew. As we look back a the year before Matthew was born it is clear that God had a plan in mind when we experienced some financial difficulties and Kevin took a “responsible” job, stepping aside from self-employment for what we thought would be a brief time. That was 14 years ago. What began as a job, God used to move us from an already strong faith into a transformation of being broken and being rebuilt…it is clear to us now that he was preparing us for a special journey of faith, a journey that would include our church family and beyond. Many of you reading this blog post have been a part of our journey of being broken and rebuilt. Whether through prayer, helping with caregiving, financial help, providing transportation (literally, in giving us a car), helping with yard work, house work or just sitting with us as we waited out a surgery or hospital stay. I wish I could say that we have been diligent in thanking each of you personally. We are learning that it is a progression of being blessed, feeling grateful and then giving thanks. As we have gone from one…
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Do you have a praying mattress?

I just love the innocence of life through the eyes of a 4-year-old. This summer a praying mantis has taken a liking to our front porch. Many times while entering and leaving our front door it is relaxing on a brick capped wall next to the door. The first time Sarah Anne encountered this new friend was on the sidewalk along our garage. She came in the house loudly exclaiming “there is a praying mattress on our sidewalk!”. We have certainly had our moments of needing prayer over the past 17 months with Isaac…and over the past 12 years with Matthew. Many long, sleepless nights of prayer on our own king sized Sleep Number “praying mattress” as we prayed those boys and our girls through life. As we have seen a break in between the medical crisis in our lives we have been busy praying other families in our CHARGE Syndrome family through their crisis. Theresa and I have been both touched and burdened with crying and praying for losses, surgeries, procedures and therapies for our other CHARGE friends. The “praying mattress” gets a lot of use. We know very well the fragility of life. Is prayer your steering wheel or your spare tire? Corrie ten Boom We have learned over time that we do not pray for God to fix everything and take away all of our struggles. We learn that prayer is not the final resort, what we do after all else fails. Prayer should be our steering wheel,…
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