Can Brokeness be a Gift?

Posted on May 19, 2013 by

A week ago we were preparing and packing for our trip to Mott’s Children’s Hospital for Isaac’s stomach surgery. Today, we are all back home and very grateful for how things have turned out. Very nice, simple bookends wouldn’t you say? The rest of the story is how God works in and through us while we go through the dark moments of doubt, worry, anxiety, lack of sleep, driving back-and-forth across the state to attend to family and work needs and setbacks…just when you think things are progressing. Most of all, the pain of watching your precious little one go through pain and wanting to take it away, even for just a few hours.

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Isaac Post Op 5-13-13

I was looking back through the week this morning as I sat down to write a few words. What I could not get out of my head was a post I wrote exactly a year ago as we were fumbling through the first few weeks of Isaac’s life. I wrote a post about a few quotes in a book by Sheila Walsh called God Loves Broken People…here is an excerpt from that post…along with the quotes. I felt that it was worth repeating:

“I told her that I still take medication, and every morning I take that little pill with a prayer of thanksgiving that God made a way for those of us who suffer like this on such a broken planet. And, I told her that in the darkest moment of my life, I discovered that God lives very close to the floor, very near to those who are broken.”  Sheila Walsh, God Loves Broken People

While hanging in the abyss of time in a hospital NICU watching Isaac heal I have had the time to finish a few books I have been in the middle of. The quote above is from God Loves Broken People: And Those Who Pretend They’re Not by Sheila Walsh. This book is a great read and has been perfect for the life we have right now…broken and hurting but trusting and having hope for an abundant life to come for Isaac. There are many, including us, who are living close to the floor in prayer, right where God meets us.

We sit with him, touch him when we can, we beg God to fix him, make him whole and healthy and strong enough to come home. We already love him more than any words can speak. I have to pry Theresa away from that isolette, his little cocoon that has been all the life he has ever seen in his short life, each night to get the needed rest she needs. Afterall, she has had major surgery too.

I am being broken in ways too. It has nothing to do with healing, pumps, hoses, ventilators or with this hospital at all. I am struggling with surrendering and allowing people so serve us. Guys just don’t handle that well. I am the one who serves people, our family is the one who hangs around long after an event and picks up the pieces, resets the platform when everyone else has gone home. We are the ones who serve, fix things, talk to other parents who are struggling with the news of a not-so-perfect child. We are the ones who are creating the “manual” on how to effectively clean poo from a ceiling fan. We ( mainly “I”) have a hard time being served…Okay, I said it. “My name is Kevin and I have a hard time being served.”

While we are attending to Isaac, there are hosts of people who are arranging care for Sarah Anne and Matthew, helping with fundraising to help send Hannah to Mozambique, Africa and Megan to Marvel, Arkansas on missions trips this summer, people who are planning and plotting to enter our home and finish my painting project and tackle the huge mommy-is-nesting list that I still had 6 weeks to complete, until last Sunday changed our lives and “our” plan. My family is in shock (I think I even heard a gasp) that I am going to allow someone else to paint in our living room.

Another quote from Sheila’s book…more words I needed to hear today:

“What if the brokeness we ask god to fix is in fact a gift? What if the wounds we beg god to heal, the burdens we plead with him to remove, are the very things that make us fit for his service? Can our brokeness be a blessing?”

I, and the rest of the Troupe’s can answer that question. We are living proof and can testify that brokeness can be a blessing. I am learning, actually just starting to learn how to let go and allow people to serve. I was told a few times this week that if do not allow people to serve us, I am denying them their blessing of using their gifts, talents and wealth. I would be a stumbling block and deny our church family the opportunity to be a family…families care for one another, meet each other’s needs.

Almost a repeat of the emotions from a year ago. God still meets us very close to the floor as we beg for him to take this current pain away. But the floor gives us a perfect point to push-off from and get back up. We have found strength in being on the floor, strength to offer other people hope and encouragement to not stay there. Yes, our brokeness, our burdens, our hurt make us fit for His service.

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Isaac Going Home Day 5-17-13

Just a few “coincidences” this past week. I use that word in quotes with a little sarcasm…we know they were not just coincidences. A family we met 2 years ago when Matthew had open heart surgery just “happened” to be there for a third and final surgery for their little girl…a moment to lean on each other. On one trip home a fellow church member approached me and said “this has never happened to me before…but I felt like God told me to give this to you…” He handed me a $100 bill. He didn’t know that I needed to fill up the ITV (Isaac Transport Vehicle) the next day to return to Ann Arbor…the exact amount…yes, $100. At one point during the week I stepped out of Isaac’s room to stretch my legs. When I returned Isaac’s nurse had been replaced and Theresa was in a very deep discussion with the new nurse. She was sharing her experience of peace when she felt God was telling her that this child, this baby in her womb was a perfect fit for our family. That was the morning before we heard the news that Isaac was not going to be “perfect” according to this world. Theresa filled me in later that the nurse was pregnant with twins and one has been determined to have a genetic disorder that is “not compatible with life”…one of her babies will die in the womb or shortly after birth. They talked a lot about grief and pain and…all I can think about are the words “…are the very things that make us fit for His service”.

We do experience a lot of pain and suffering as we deal with each new challenge. We also have very strong arms as we have lifted ourselves up off the floor each day. Those strong arms have put us in a very unique position to be able to lift others up as God puts them in our lives. He is glorified each way…sometimes in the fall, sometimes in getting up and many times as we assist others who need lifting.

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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His name is Faithful and True…

Posted on May 12, 2013 by

Planning, scheduling caregivers, paying bills, packing, more packing…and somehwere between all of that, some nervous anticipation and worry. No, it’s not a vacation…

isaac playingWe will be leaving in the wee hours of Monday morning (May 13) to arrive for Isaac’s scheduled surgery at 7:30 a.m. Ugh, that means a 3:00 a.m. wake up time for travel and pre-op! We are asking for you, our massive prayer team partners, to once again storm the gates of heaven with your prayer for this delicate surgery. Matthew had this same surgery, a nissen fundoplication, which is a procedure on the stomach that will eliminate the ability to burp, throw up and reflux. Matthew had this surgery at just a few months old. With Isaac we have had to wait until his esophagus was completely healed from his surgery at just a few days old and did not need constant dialting (stretching) to stay open. His small stomach was also something that played into the decision to delay this complicated prodedure.

Today has been an emotional and joy filled day. We spent some time this morning with the elders of our church as they anointed and prayed with Isaac before we leave for his surgery. They prayed not only for Isaac but for us as a family. Today happens to be Mother’s day…Theresa was overcome with emotion as she held Isaac tight, recalling that just a year ago she was not even able to hold him on this same day. Another memory came flooding back as we sang 10,000 Reasons (Bless the Lord) by Matt Redmond. We stood arm-in-arm a year ago this week in church and cried our eyes out as we left our vigil with Isaac, who was just a few days old, to worship and thank God for the journey we were about to begin.

As I was taking time this past week to pray another little hero through a surgery I came across these few paragraphs from John Elderidge’s book Beautiful Outlaw: Experiencing the Playful, Disruptive, Extravagant Personality of Jesus. I shared it with our friends as they sat through a long, third major heart surgery for Paislyn, a.k.a. Little Miss Miracle. After typing it out and sending it along to them I let it soak in and found that it was just as relevant to us.

Just as the suffering of Christ flows over into our lives, so also through Christ our comfort overflows. (2 Corinthians 1:5).

Your suffering is neither pointless nor isolated. Somehow, Jesus’ sufferings overflow into our lives; somehow ours are linked to his. This is a great honor. It grants our sorrows an incredible dignity; it invites us to know an intimacy and connection with Jesus in them, because of them. The sufferings of Jesus are the noblest part of his life story; the cross, the crown of thorns. What an unspeakable honor that he would share even this with us. This fellowship is a treasure we have not tapped into but one we will need.

When his suffering overflows into our lives, God’s promise is that his comfort will overflow to us as well. We can cry out for the comfort of God. Whatever your circumstances may be, he will heal your wounded heart; he will comfort. Cling to him.

My soul clings to you; your right hand upholds me. (Ps. 63:8).

He is with you now. For his name is Faithful and True.

His name is Faithful and True…Oh, have we found that to be true over the years! Hours upon hours suffering through surgery waiting rooms, bedside in a hospital room and even watching a chest rise and fall as our kids peacefully sleep. Breathing, for some of our kids we never have a second thought, for Matthew and Isaac each breath, each heartbeat has been monitored and recorded.

“Faith like Job’s cannot be shaken because it is the result of having been shaken.”   Rabbi Abraham Heshchel

We enter into this new surgery as we have the dozens past…with faith, knowing that God is Faithful and True. Please share our need for prayer as you feel led…for the surgery, for the people who we will share Isaac with over the next week and the opportunities to proclaim how good God is.

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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Where is my phone…!?

Posted on May 5, 2013 by

Matt TabAround the Troupe house we have a warped sense of humor. We have to…if we don’t laugh at the things we go through we would be crying. Both are healthy, but I prefer to laugh. I have mentioned many times before Matthew’s obsession with having a diaper tab in his hand. He will twiddle with it between his fingers constantly. When he wears one out he will toss that one aside and begin with another. Occasionally he will misplace the one he is currently using before he is done with it. He will whirl around in a frantic state until the lost has been found. What makes for good entertainment is when it becomes attached to something out of his sight, like maybe the back of his head as the picture shows. We allowed him to “panic” for a few minutes, while we laughed, and then we gave it back.

It’s all grins and giggles…until it happens to you, or me in this case. I was in the middle of a productive morning when I moved into the next project of changing rear brake pads on one of the cars. I couldn’t budge one of the wheels if my life depended on it. At a suggestion of a friend I loosened the lug nuts slightly and drove around my neighborhood at a slow pace hoping to jar it loose. When I returned home I backed the car in the driveway and reached for my phone. You know, that thing that is literally attached to our hips as many of us have grown accustomed to a “smart” phone being our second brain. “Where’s my phone?” I hope I am not the only one who had the reaction of the sick feeling when you have lost your phone. I frantically searched around the area I was working, I checked the car again, I checked the house…then I had a flash memory come to me. I had placed it on the bumper of the car when I loosened the lug nuts. I jumped in the car and traced my path three times with the car. Then I jumped on my bike and rode the whole route again, four times with Hannah at my side…no phone. This went on for nearly two hours. I was sick to my stomach thinking about all of the “things” on that phone that I had lost. Just before I was about to activate an older phone I dialed my number one last time and someone answered. My phone had been found at the intersection just down from our home and placed on their counter while they ran errands for a few hours.

I like to think that I was good entertainment for my Father above. He must have a sense of humor…along with the pain we most certainly cause him we also provide him much joy and entertainment as we deal with and work through the dumb things we do. He knew exactly where my phone was and he was tuned into what my reaction would be and how I dealt with it. Although God does not “make” things happen to us…he does allow us to go through certain trials to learn lessons. He has empathy for us and joins us in our pain and our sorrow. I think that is why we are able to laugh and cry together as a family…because of empathy. I love how it is empathy is explained in a book I just completed by Dr. Henry Cloud called Integrity: The Courage to Meet the Demands of Reality.

Empathy is the ability to enter into another person’s experience and connect with it in such a way that you actually experience to some degree what the other person is experiencing. It is “as if” you are that other person, at least for a moment. Empathy comes from the Greek words meaning “in” and “feeling.” It is as if you are “in the feeling” of the other…When you empathize, you feel for the other person, but still know it is not your experience. In that way, you can be a bridge to a new and different experience from the one you are having, such as hope.

All of this talk about empathy is a perfect transition to talk about a very special day we will celebrate this week…May 6. One year ago our lives changed dramatically (again) when Isaac joined this world a full six weeks earlier than expected. Many of you have been a vital part of this past year. Your empathy, support and prayer support has been nothing short of the fingerprints of God in our lives. There is no Earthly way we could have and continue to walk this journey without all of you. What we have endured with your prayer support this past year: 112 days of in-patient hospitalization in either NICU or PICU, 23 surgeries/procedures that required sedation, some of them done in “bulk”, at least a dozen or more each of ultrasounds, x-rays, CT scans and MRI’s…and if we average out suctioning his trach 12 times per hour which would be on the very conservative side, we have done so over 105,000 times!

We covet your prayer as we again will be heading in to the operating room one week from now. On May 13 Isaac will have a nissen fundoplication, a surgical procedure on his stomach that will eliminate his severe reflux. We have been waiting until he grew a little more. While in there they will be fixing a small hernia as well. A full plate for sure. His surgeons shared that 90% of these surgeries can be done with a scope. Isaac falls in the 10% that will require them to open him up due to his complex little body. We need prayer not only for the obvious of the surgery but also for all of the details of busy schedules and juggling care of his other siblings. We will be having this surgery at the University of Michigan, Mott’s Children’s Hospital.

We are planning a celebration on June 15 to thank God for Isaac and Hannah. Hannah as she graduates from our homeschooled High School and for Isaac making it through his first year! Below is an invitation…please RSVP by emailing Theresa.

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If you were one of the thousands that shared our story and our need for prayer when Isaac was born would you share this blog again (instructions are below if you need help doing so)? We would like everyone who had a part of praying for us to at least know how Isaac is doing. We want to honor God by thanking him and all those who have prayed for us!

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

 

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They have a voice!

Posted on April 7, 2013 by

This year marks a full three years of blogging in Lessons from Matthew…now Lessons from Matthew & Isaac! Theresa has been one of my best editors and constructive critic of what I write. This week I am handing over the keys so-to-speak. I am letting Theresa take over the blog and get a glimpse of our lives from her perspective. Also, a little treat in the form of hearing from Isaac as well…I feel like I did when I let Hannah drive off in my car by herself for the first time…

Isaac chillin' while on mommy's lap in the hospital

Isaac chillin’ while on mommy’s lap in the hospital

The past couple of weeks has been very challenging for our family. We all shared a “cold”. Sarah Anne and Isaac were the most severely affected and Isaac ended up in the hospital for another week stay. If you have experienced a loved one in the hospital you know that this time is very trying on the whole family… financially, emotionally and physically. Hannah and Megan stepped up in amazing fashion, again. They helped maintain the household which included caring for Matthew and Sarah Anne the majority of the time…not easy with an already cling-to-mommy girl was not feeling well with a double ear infection. Kevin did not return home during that time. He would go straight from work to the hospital back to work. I was at the hospital when Kevin was at work then rushed home to take over for the girls. He and I would literally trade spots in the hospital turn around. Needless to say for many reasons there was great celebration in our home on Thursday. In more ways than one! It was Megan’s birthday!

This morning as I sat watching Calvary Church’s Palm Sunday service via the internet while home alone with our three youngest, I was reflecting on this past week and the Blessings God has bestowed upon us through Isaac’s first major illness. As I sang “Hosanna” along with the congregation I realized that during this past week I had not been full of fear, despite Isaac’s struggling to breath, being on the ventilator and all the circumstances.

Praise is rising, eyes are turning to You, we turn to You
Hope is stirring, hearts are yearning for You, we long for You
‘Cause when we see You, we find strength to face the day
In Your Pres- ence all our fears are washed away, washed away

CHORUS
Ho- san- na, ho- sanna
You are the God Who saves us, worthy of all our praises
Ho- san- na, ho- sanna
Come have Your way among us
We welcome You here, Lord Jesus

Hear the sound of hearts returning to You, we turn to You
In Your Kingdom broken lives are made new, You make us new
‘Cause when we see You, we find strength to face the day
In Your Pres- ence all our fears are washed away, washed away                 Paul Baloche, Hosanna

As I look back and think of how much worse it could have been I am so incredibly grateful. Isaac had RSV (respiratory syncytial virus). We have been warned that RSV is about the most dreaded of “colds” for little children, especially fragile trached ones such as Isaac. The “praise is rising” has to do with the fact that Isaac was only in the hospital for six days. Of those six days he spent four of them on a vent wich gave him a much-needed break. I think we had several factors in our favor, first: we caught it early, second: he had been receiving immunity rich antibodies from mommy’s milk which probably lessened the severity of it, and third and most importantly: God’s Grace was upon us.

If you ask a parent of a child with a trach I think many will tell you their greatest sadness they face is loss of their child’s ability to speak, coo and laugh. It is a loss we mourn greatly as a family…although Isaac’s eyes make up for his inability to “speak”. During this most recent trial we received the blessing of Isaac discovering his “voice” while on his last night on the CPAP machine (a stepped down ventilator). CPAP provides positive pressure to the lungs, but the pressure will take the path of least resistance. So, some of that pressure went up past his voice box instead of down to his lungs. He quickly learned to manipulate the air once he determined the noises were his noises. I admit the first night he was on the ventilator I sat holding him with tears streaming down my face filled with joy at hearing little noises coming from my otherwise “muted” baby. Kevin was able to catch about 40 seconds of video that did not have all of the vent’s alarms sounding.

So, once again this week we feel He most definitely is “the God Who saves us, worthy of all our praises”!

My parting thought is an exchange I had with our three year old, Sarah Anne as we participated and worshiped with our church family via the internet. As I was singing along (and crying a little with Joy and Thankfulness), Sarah came to sit with me. I told her I am so thankful to God for protecting Isaac, that he got better so fas,t and is home again. We were discussing that Isaac is a gift from God and she said “God knew he belonged with us”. Oh my goodness…She couldn’t be more right!

Thank you all for your prayers and support. You are most definitely a buoy in times of turbulent water and a reassuring point of reference during the calm seas.

You can connect with me (Theresa), via Facebook or at tktroupe@gmail.com

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

 

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What dog are you feeding…?

Posted on March 10, 2013 by

_MG_1743A constant question we are asked is “how are you guys doing?” I know the question is almost always referring to either Isaac and/or Matthew. There are varying degrees in which we answer that question. Isaac’s medical and Matthew’s “creativeness” would bog anyone down if we went in to all the details. Most of the time we keep it to the short version of good or we need prayer for a specific. There a few people who are in our tighter circle that the question is more directed to the rest of us…and uncomfortably, toward Theresa and me. I say uncomfortable because we are not always doing “fine”. It is a hard thing to admit that we don’t always have it all together. For those not close to having to directly care for a special needs child, a sibling or perhaps an ailing family member or parent, there is a common term called caregiver fatigue. Yep, we have it…a lot. Caregiver fatigue can consist of several things and can be quite varied in intensity. The best way to describe it is the feeling of being trapped. Theresa describes it as a feeling that everything ultimately defaults to her…medications, appointments, therapies, consultations, nursing schedules, etc., no matter how much we help with these things, she feels and absorbs the brunt of what doesn’t get done. I have the same feelings about being the primary provider for our family…neither one is more important (or easier) than the other. That is where the trouble can begin.

I am going to be vulnerable here. One struggle within me is that feeling of entitlement of taking a break when I have just finished a long day at work… I am the provider but that doesn’t mean my obligation ends when I leave work. I have those kind of days where I am physically and emotionally exhausted, where I have calculated and conserved just enough energy to make it to the recliner and am ready for my relaxation and break. When I get home there are times I am faced with the same look from Theresa, the same kind of look in her eyes and an unspoken scream of “I’m tagging out, it’s your turn”. At that point I am left, we are left, with the decision of doing the right thing and deciding who is going to be “tagging in”. We are both tempted to begin sharing our responsibility lists of the day and compare who has done more or who gets a break first. The competition of who is more deserving of wearing the serving crown. Yes, it is a battle of the flesh…

So I say, let the Holy Spirit guide your lives. Then you won’t be doing what your sinful nature craves. The sinful nature wants to do evil, which is just the opposite of what the Spirit wants. And the Spirit gives us desires that are the opposite of what the sinful nature desires. These two forces are constantly fighting each other, so you are not free to carry out your good intentions. but when you are directed by the Spirit, you are not under obligation to the law of Moses. Galatians 5:16-18 New Living Translation

Preach it Paul…I know exactly how that feels. I just finished a book by author and speaker Ken Mansfield titled Stumbling on Open Ground: Love, God, Cancer, and Rock ‘n’ Roll. The book is about Ken’s two bouts with cancer and the honest and open discussions he had with his God as he battled through the journey of the treatments. He said this about the struggle of doing the right thing:

I am like Paul in that I try to do what is right. I want to be obedient and pure, and yet I have these thoughts; I behave in ways that are outside God’s purpose, outside his ways, outside his pleasure. I want to be pleasing to him. I want to be good and godly, but then, like a fool I do the very things that he and I both do not want me to do. I go bonkers with my stupidity and he keeps loving me. What is wrong with this picture? Maybe I should ask myself, What is right with this picture?

“I go bonkers with my own stupidity” now there is a phrase I can relate to! I get that feeling as soon as I start the caregiver competition of who deserves a break more. And still, “He keeps loving me…”. I love the story Ken went on to share, a story he heard as he grew up near an American Indian Reservation. The story is about faith vs. fear…these two are always at odds. Just as doing the right thing or the wrong thing:

One of the elders from the nearby Nez Perce reservation used to tell the story about an old member of the tribe who had become a Christian. His name was So-bo-ta, and a few months after his conversion he asked the pastor who had brought him to the Lord if he could meet with him. He told the pastor that he was having a hard time dealing with a personal struggle in his Christian walk and that he felt like there were two dogs fighting inside of him. He said on dog’s name was Faith and the other Dog’s name was Fear. He said these two dogs were constantly battling inside him, and it was driving him crazy. The pastor looked at him intently, thought for a minute, and asked, “Well, So-bo-ta, which dog is winning?” The old Indian squinted his eyes, stared off into space as if watching a movie, and then answered in words so soft that they were almost inaudible: “I guess the one that I feed the most.”

What dog am I feeding the most? The dog of self centeredness or the dog of selfless service? I know that my struggle is that as soon as my focus turns to me I begin to implode unless I feed the dog of selfless service. Do I get it right all the time? Absolutely not.

_mg_9114 cWe both shared a rare moment this past week. A moment where Theresa stepped away from her world of schedules and lists and made a spur of the moment decision. I was working a food event at church for 400 women who were attending a retreat weekend. Megan was asked to dance a ballet number during the worship time of the evening. Theresa made the decision to load up the three little ones at home (Hannah was at a 4-H event) along with the needed equipment for Isaac, complete with a nurse, and make it in time to see, video and take photos of Megan. She did it all with about 5 minutes to spare. Matthew was content in the car, Sarah Anne fell asleep and Isaac had a nurse with him as they waited it out in the car.

There we stood, arm and arm nearing the end of Megan dancing before the Lord, my face had a smile from ear to ear and Theresa had tears running down hers. At that moment, a brief moment in our crazy lives we rested in our Father’s arms…and all the dogs were silent.

Not all days are like the struggle I have described above…it all depends on which dog we are feeding at the time. Do you have the same struggle of what dog to feed? My prayer this week is that God would give me the strength and desire to choose wisely.

This is the last full week to vote for Lessons from Matthew & Isaac for the About.com Reader’s Choice Award for Best Special Needs Parenting Blog. You may vote once per day until March 19. You may vote by clicking here. Thanks for sharing this blog with your friends and for voting…all is appreciated to promote CHARGE Syndrome awareness and to share how good God is, even in times of struggle.

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“There’s a hole in his lip…?”

Posted on February 24, 2013 by

Before I begin the blog this week I want to thank all of you who recommended Lessons from Matthew & Isaac for the About.com 2013 Readers Choice Awards for Best Parenting Blog. You now have until March 19 to vote Lessons from Matthew & Isaac alongside four other wonderful blogs. You may vote once per day. After seeing the results from the first week it appears that I may be a small fish in a very big pond! I am not as concerned about the votes as I am bringing awareness to CHARGE Syndrome and praise to the one who deserves it! May God continue to be glorified. Vote early and vote often! The link appears just to the right of this post in the right-hand column.

iWe had a very tender moment this week that reminded us that our entire life, everything we experience and our subsequent response is entirely influenced by our perspective. What we see with eyes is not always how we interpret was is before us. Very early on as we embraced the fact that Isaac was likely going to be as challenging if not more than Matthew, we tried to prepare Sarah Anne for the birth of Isaac and how he may look a little different from her little babies. We explained what a cleft was and showed her pictures and shared that Isaac may have to spend some time in the hospital after he was born. None of that really mattered as Isaac joined us almost 10 months ago. To her he was “Isaac, my baby brother.” Her most used comment: “He’s soooo cuuuute!”

We have been waiting and preparing for when Isaac’s complex little body, with his many issues, would be healthy enough to begin the process of repairing his cleft lip and palate. We were informed that he is indeed healthy enough to proceed but the first available opening was not until the end of May or June. Well, this week we received a call that Isaac’s case was being bumped up. He is now scheduled for March 26. The first surgery will be to have a “nose job” to repair his flat nose and to re-align some his facial muscles. This will be the first of 3 or maybe 4 as they move from the nose to the palate and then to the lip.

We were sharing this news with Sarah Anne a few days ago and when we excitedly shared that Isaac was going to have the hole in his lip repaired, Sarah Anne’s puzzled response was: “Isaac has a hole in his lip?” Then came the tears moment as we explained that fixing his lip (and palate) will help him eat and breathe better, she added as she started to sob: “But, he’s so cute the way he is, I don’t want you to fix him!”

“If you think of this world as a place intended simply for our happiness, you find it quite intolerable: think of it as a place for correction and it’s not so bad. Imagine a set of people all living in the same building. Half of them think it is a hotel, the other half think it is a prison. Those who think it a hotel might regard it as quite intolerable, and those who thought it was a prison might decide that it was really surprisingly comfortable.” C.S. Lewis, God in the Dock

Do you see a set-back, a disability, a disfigurement, etc. as a hotel or a prison? I think we are comfortable in saying that our family has the perspective, according to the C.S. Lewis quote above, as coming from the “prison” side. We do not think of this place as intended for our happiness…if we did, we would be pretty disappointed as if expecting a glorious hotel. No, we accept that this current state is a prison and find many opportunities and moments when it can be surprisingly comfortable than expected. It is not always easy to see at first, but God’s fingerprints are all over the events in our lives…even though it may seem as if we are in a “prison”, His light permeates those walls if we make those walls transparent.

“There are only three types of people; those who have found God and serve him; those who have not found God and seek him, and those who live not seeking, or finding him. The first are rational and happy; the second unhappy and rational, and the third foolish and unhappy.” Blaise Pascal

My prayer this week is that I will see through different eyes. I pray that I would see beyond blemishes and see the beauty that you have created. I pray that I see beyond sins of others and love as I am commanded. I pray that my will is conformed to God’s will, not the other way around…May my prayer be of that of Blaise Pascal:

“I ask you neither for health nor for sickness, for life nor for death; but that you may dispose of my health and my sickness, my life and my death, for your glory … You alone know what is expedient for me; you are the sovereign master, do with me according to your will. Give to me, or take away from me, only conform my will to yours. I know but one thing, Lord, that it is good to follow you, and bad to offend you. Apart from that, I know not what is good or bad in anything. I know not which is most profitable to me, health or sickness, wealth or poverty, nor anything else in the world. That discernment is beyond the power of men or angels, and is hidden among the secrets of your providence, which I adore, but do not seek to fathom.” Blaise Pascal

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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Life is sacred…where are your anchor points?

Posted on February 10, 2013 by

gYes, there will be storms in our lives. Some are small, some are so strong they are epic and life changing. I just finished a book that is a re-release by author John Maxwell, Six Hours One Friday: Living in the Power of the Cross. I liked how he used the following excerpt at the end of a personal story about the time he and a friend bought a boat on a whim and shortly after had to protect that boat from an oncoming hurricane…with no experience, guidance or a plan. It was the sage advice from a seasoned sailor that gave them crucial instructions about the important use of anchor points…deep anchor points. He associated the importance of having such anchor points in our own lives:

Six hours. One Friday.

Those six hours were no normal six hours. They were the most critical hours in history. For during those six hours on that Friday, God embedded in the earth three anchor points sturdy enough to withstand any hurricane.

Anchor point #1 – My life is not futile. This rock secures the hull of your heart. Its sole function is to give you something which you can grip when facing the surging tides of futility and relativism. It’s a firm grasp on the conviction that there is truth. Someone is in control and you have a purpose.

Anchor point #2 – My failures are not fatal. It’s not that he loves what you did, but he loves who you are. You are his. The one who has the right to condemn you provided the way to acquit you. You make mistakes. God doesn’t. And he made you.

Anchor point #3 – My death is not final. There is one more stone to which you should tie. It’s large. It’s round. And it’s heavy. It blocked the door of a grave. It wasn’t big enough, though. The tomb that it sealed was the tomb of a transient. He only went in to prove he could come out. And on the way out he took the stone with him and turned it into an anchor point. He dropped it deep into the uncharted waters of death. Tie to his rock and the typhoon of the tomb becomes a spring breeze on Easter Sunday.

There they are. Three anchor points. The anchor points of the cross.

Take the sailor’s advice, “Anchor deep, say a prayer, and hold on.”

And don’t be surprised if someone walks across the water to give you a hand.

0It has been a somber few months in the CHARGE Syndrome community. There have been several CHARGE’rs who have “received their wings” and have completed the task that had been placed before them here in this place. The CHARGE community is a tight one. We lean on each other when we need advice, rejoice with one another when small and large steps are made and we also grieve with each other when it is tough to understand why we were only allowed a short time with these little angels who enter our lives like a raging hurricane, but tend to calm our lives and show us what is really important…that life is precious, no matter how short or long life will be.

13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
15 You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
16 You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed. Psalm 139:13-16 New Living Translation

A few weeks ago many churches around our nation recognized and reflected on the sanctity of life. Although a fair share of the attention is focused on the abortion debate side of the equation, there is another side that does not get as much attention…euthenasia of the elderly and those who may be deemed to have disabilities and other special needs. As a family we can speak directly to the disability and special needs side. I came across a popular “think tank” forum and a discussion that was being debated after this question was posted: Should special needs children be euthanized? I was speechless and had tears in my eyes as I read through several responses to this question and have included some excerpts. Many were so disturbing I couldn’t bear to include them. Warning, you may want to tighten your anchor ropes and batten down the hatches…

Should special needs children be euthanized?

The initial opening comment: …I am talking about the extreme cases of the kids…like they are so autistic they scream 20 hours a day…when I see some single mothers faces with these children it looks like they would rather have them put down than to live with the shame and burden of caring for them every day. All their lives the “special” kid will never contribute to society…they will never find a 9-5 job since they would rather play with the buttons on a cash register than help a fellow human being with their order…the euthanization would be liken to a very late-term abortion…if families in society are ok with abortions then they would be ok with euthanizing their handicapped child…

…People dont breed animals that have bad genes, they let them die out. Can’t we do the same for humans?…

…I don’t understand why you people expect everyone else to help and support your own failing.  If you can’t afford to raise one, then abort them or implement a mercy kill option…

…It’s different these days though. I sure as hell wouldn’t want someone to depend on me their entire life. That is a burden from hell. If I knew something was wrong with my kid before it was born I would get an abortion…

I have to stop there. Again, I am stunned. I do have to include that there were many who chimed in and offered an anchor line…something to hold on to…but the waves got bigger and the tempest grew as the truth of God’s word was introduced. It was spit upon with such vile I cannot repeat it. These are the people I can imagine who sit in a safe harbor their entire lives, ignoring the watch, then warning of a coming storm, then wonder why their boat is being tossed back-and-forth and being slammed into the rocks until it sinks…Then blame God for the storm and the damage it has caused.

I shared what I have shared not to debate or politicize. I shared only to say that life is sacred. A gift that we are given for an amount of time that God chooses, not us. Most, if not all of the responses I read, whether abortion or euthanasia were focused only on themselves. They were filled with words like inconvenience, suffering, burden…not for the “subject” but for the caregiver.

We gladly accept the inconvenience, the suffering and the burden. Phillip Yancey, in his book Where Is God When It Hurts?, wrote “happiness will come upon me unexpectedly as a by-product, a surprising bonus for something I have invested myself in. And, most likely, that investment will include pain. It is hard to imagine pleasure without it”.

I too liken our journey as an investement…an investment requires that one give and contribute with the faith and expectation that there will be rewards later. We can assure you that the rewards of investment in one of these gifts of “burden” begin immediately with no limit on the amount of withdrawals.

The outcome to any event, or storm, no matter how small or large is determined by your response. Your response has everything to do with where your anchor points are tied, the strength of the rope and how tight you are willing to hang on.

____________________________________

Logo courtesy of About.com If you like Lessons from Matthew & Isaac I would appreciate your nomination in the About.com 2013 Reader’s Choice Awards in the category of Best Special Needs Parenting Blog. Your nomination of this blog would continue to grow awareness of CHARGE Syndrome and share our family faith story of raising 5 kids, two with special needs. You may nominate by clicking on the link below. The only required line is Lessons from Matthew & Isaac…but very helpful to add the web address: lessonsfrommatthew.com – I will have more information on voting later…first we have to be nominated! You will have to log-in to nominate. Email log-in is the most efficient and easiest. Then “write in” (type in) your nomination both with the name, then the address.

Nominate your favorite special needs blog here

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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God is on the phone…

Posted on January 13, 2013 by

A reminder…last one! If you happen to be in the Grand Rapids, Michigan area I will be speaking at Calvary Church on Wednesday night, January 16, 2013 at 7:00 P.M. I will be sharing about our family and the joys and sorrows of raising one, now two children with special needs…here is a link for further information: Kevin speaking at Calvary Church

IMG_20130113_094555_815Have you ever had one of those moments that God is so present you could touch him? We have had many of those over the years, especially in the past one. We had one this week that was like a 2 x 4 to head with the message of “I am in control here, I’ve got this!” It was in the form of a phone call early on Thursday morning…It very well could have been God, or an angel. In reality it was a surgeon from U of M.

We have this verse on the highest part of our family room wall. A Christmas gift from Hannah to mom. It is a great verse for our family:

“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you. Plans to give you Hope and a Future.”  Jeremiah 29:11

Theresa is probably the best advocate for care and support for our family I could ever imagine or even come close to duplicating. She has a gift for negotiating through the system of medical care for each of us…especially the more difficult cases in our family. Together we are still learing how to compliment what God is doing instead of working to do this all on our own.

Here is what happened this week…

This is the longest period where Isaac has gone without a dilation (stretching) of the repair site of his esophagus. The plan was to see if the current course of treatment was effective at controlling and keeping ahead of the scar tissue forming at the repair site. Theresa had her reservations about going so long but we were trusting the advice. It all came to a thunderous moment during the middle of the night with the comments of Isaac’s nurse. The comments only confirmed the feelings and Theresa’s intuition…It was pretty clear that his esophagus had either closed up or was about to.

This story really started a few days before in a message heard on Sunday about the question of our willingness to really allow God to be in control of things and, more importantly, are we willing to stop doing and saying things that would alter the outcome. The outcome of what we say we are allowing God to have complete control of. In simple terms: do we say “God I trust you, I trust your plan” and then try to control everything on our end? We are pretty good at saying that God is in control…our biggest problem is that while we say we are allowing God complete control we are full of fear, are anxious, wondering if we should have done something more, said something we forgot to say.

Isaac showing off his new Christmas tooth!

Isaac showing off his new Christmas tooth!

During the early morning hours of Thursday while Theresa was up, during her many times during the night, the nurse made a comment that Isaac was not refluxing and he had more secretions than the last time she was with him. This all confirmed the uneasiness and suspicions that Theresa was feeling. A new plan had to come together! But, it was 4:00 A.M.! Who to call first in the morning, his surgeon here, the new surgical team in Ann Arbor? We have a history here…the fears and doubts are not unfounded. The last time we faced this Isaac spent more than a week in the hospital from complications from trying to open up the esophagus and a resulting collapsed lung.

We lay in bed and talked about the situation. We prayed separately (we aren’t perfect, yet) as we thought about what “plans” to make in the morning. I knew that Theresa would not be able to sleep…I prayed for her to get rest. I prayed for the situation to become clear as we woke up in the morning. Theresa prayed that his esophagus would be open, that they would be able to find a path. We both fell asleep with this heavy on our minds. Another emergency in the morning that would change our plans.

As I woke up and headed down the hall to relieve the nurse the phone rang. It was one of the two new surgeons (the one we hadn’t met) from U of M. He just “happened” to be catching up with cases after being gone and had just reviewed Isaac’s case. He called to see how Isaac was doing and to ask if we had any questions. I handed to phone to Theresa and wanted to say “It’s God on the phone.” It’s quite amazing how God wipes away all of the questions on what to do in a single phone call. We just needed to sleep on it. All the plans we struggled with the night before? Gone. A new plan, a new peace and understanding. He is in control, He’s got this!

That new plan starts tomorrow…we could use some prayer over the next two days. Monday and Tuesday, January 14 and 15. We have one day of appointments and are waiting for the operating room schedule for Tuesday. Isaac will have a dilation, and a scope to get a good look at his esophagus and stomach. The plan is to schedule surgery (a nissen fundoplication, for those keeping score) and a repair of a hernia as soon as possible to relieve the constant reflux. Pray that the dilation and the scope go without complication and that we can keep it as an outpatient procedure this time around! Also pray as we consult with these surgeons who are specialized in dealing with difficult cases such as Isaac’s. They continually remind us that his issues are not easy, but are possible to fix.

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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A blessing, not a curse?

Posted on January 6, 2013 by

Okay, enough emails and messages have come my way…”WE WANT AND UPDATE!” Thank you for your interest and your prayer for the Troupe’s. December is such a busy month for our family as I am sure it is for yours as well. Taking a break is good. So is getting back to work and writing!

All of our Happy Elves at Christmas time

All of our Happy Elves at Christmas time

Today was a banner day in the Troupe household. Tears were shed today (tears of joy) as Hannah and Megan proclaimed their public profession of faith along with being baptized in front of nearly 2,000 congregation members, family and friends. I cannot think of any other event, short of their births that has brought as many tears and joy as listening to your children tell of their love for Jesus and their strong desire to follow in his footsteps. Awesome. No award, ribbon, trophy, diploma, certificate or plaque will ever match up…ever.

I think the words they both spoke of their journey to this point were full of knowing what pain, sacrifice and hard work feels like and what it means to die to self. I think this especially rings true having two siblings who have special needs. They both talked of missions trips they had been a part of where they were stretched in their faith. There is great rewards when we abandon things that give us comfort…it leads us to being broken. Sadly, most people are afraid of brokeness and avoid moving away from comfort at all costs.

When we abandon the things that give us comfort, God brings us to brokeness, which allows us to unpack the baggage others have saddled on us. We begin to discover our true self. Brokeness finishes abandonment’s job; it strips away the false self. It allows God to transform us into a new creation. Many people are offended by brokeness. “God wants to bless, not curse us,” they say. “He wants us to be joyful, not despairing. If you’re doing the Christian life right, then you should be happy and faith filled. If you are hurt and full of doubt, then you are doing something wrong.” unfortunately, this is not how God works, but it’s often how we think.  Seth Barnes: Kingdom Journeys: Rediscovering the Lost Spiritual Discipline

That portion of Seth’s book really hit home with our family. We have many well-intentioned people say to us that we must be really special to have God trust us with not only one, but two special needs kids. I can assure you, we are not all that special. We argue, we fight, we get mad when Matthew decides to “paint” our bedroom door with something not even close to paint (while I am writing this post), we question why, we shed tears when we see a “normal” baby doing normal things at half Isaac’s age. When we abandon our own lives brokeness moves in and then we have the opportunity to allow God to transform us into a new creation.

If you cling to your life, you will lose it; but if you give up your life for me, you will find it. Matthew 10:39 (New Living Translation)

This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun! 2 Corinthians 5:7 (New Living Translation)

Each of us have been at the point of brokeness many times as we have grown as a family. The difference for us…what makes us special and can make you special too is that we allow the brokeness to transform us into a new creation…each time. Each time we are faced with another ER visit, another hospital stay, another therapy or appointment, another broken down car, a parking ticket (sorry Hannah)…it is an opportunity to be responded to as a blessing or a curse. I have to admit, it doesn’t always happen in an instant. Sometimes it takes time to realize the blessing.

Hannah and Megan, mom and dad are very humbled and proud that you have chosen to give up your own lives and become a new creation in Christ. And, Sarah Anne was not happy that she could not wear the red polka dot swimsuit she picked out to swim with you in the Calvary Church “pool” today.

ISAAC UPDATE: November and December were good months! A few trips to ER and an emergency surgery to remove his central line that was beginning to show signs of infection…but all-in-all not too bad. He is growing and developing quite a personality. The near future will be full of appointments both here in Grand Rapids and at Mott’s Children’s Hospital at the University of Michigan. Three out of the four weeks in January we travel to Ann Arbor and it is looking like February is shaping up to be the same. We may be looking at a surgery at Mott’s in the near future as well. All of this is to address Isaac’s hiatal hernia and his severe reflux due to his tricky TEF repair. Most of his pulmonary issues (increased oxygen needs) and frequent scarring of the repaired part of his esophagus may be fixed by working in his abdomen. Only when we can settle the stomach and esophagus issue can we look at starting the process to repair his cleft lip and palate.

If you happen to be in the Grand Rapids, Michigan area I will be speaking at Calvary Church on Wednesday night, January 16, 2013. I will be sharing about our family and the joys and sorrows of raising one, now two children with special needs…here is a link for further information:

Kevin speaking at Calvary Church

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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Give thanks…with a grateful heart

Posted on November 18, 2012 by

Matthew trying to fit into one of Isaac’s preemie onesie

A new buzzword that has cropped up this year is the term “black Friday creep.” We barely made it in to the month of November and the holiday ads began to bombard our screens and speakers. I, for one, have never understood the concept of black Friday. I hate to shop…I am a buyer, not a shopper. If I am in need of something that I actually have to pay retail for instead of finding it at a garage sale or a second-hand store I will research the item then go buy it. the only exception is that I like to grocery shop. I let Theresa, who loves a good bargain do most of our other shopping. Most of my retail purchases have to do with car parts and home repair, the former to keep our vehicles with a combined mileage of nearly 750,000 miles running, and the latter to fix and keep ahead of our little home wrecker named Matthew.

As we approach this week and count our blessings I cannot think of any “thing” I would want so bad that I would willingly put myself in the arena of black Friday. There is just too much to be grateful for what we as a family already have.

“To be grateful is to recognize the Love of God in everything He has given us – and He has given us everything. Every breath we draw is a gift of His love, every moment of existence is a grace, for it brings with it immense graces from Him.
Gratitude therefore takes nothing for granted, is never unresponsive, is constantly awakening to new wonder and to praise of the goodness of God. For the grateful person knows that God is good, not by hearsay but by experience. And that is what makes all the difference.”   Thomas Merton

Sarah Anne reading a book to Isaac in his bed

We know that God is good, not by hearsay but by experience. How could I want anything more than to have seen the miracles of God working in our family…especially over the past 6 months? Theresa and I celebrated 21 years of marriage. A marriage that started with the turmoil of the very weekend of our marriage engagement, I lost my dad. We celebrated our precious first-born, Hannah, turning 18. Our sweet Megan turned sweet 16. Matthew celebrated his 11th birthday along with other milestones. Sarah Anne turned 3 in the midst of her baby brother being in the hospital. She continues to be at his side most of the time providing therapy no therapist could give him. She is the one who can make him smile just with her presence while the rest of us have to make sounds and gestures that would make others outside our home suspect our sanity. And then there is Isaac. He has completely rocked our already crazy world. In the past six months we have experienced the miracle of his birth, the miracle of skilled doctors and nurses who have cared for him, came too close for comfort to losing him and have learned what endurance of strength and faith means. We have felt what “the church” really can be beyond bricks and mortar…what it means for a community of believers to stretch themselves beyond the pews they sit in and serve others along with the needs we have had and still have as we negotiate life with two special needs kids.

Yes, a grateful heart about sums it up…how could we ask for anything more? As you give thanks this week and as you make plans for your holiday season, don’t get too wrapped up in presents that need to be wrapped in paper.

You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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