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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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Wounds or Scars…

May 1…exactly 1 month since Matthew had his heart surgery to repair his leaking mitral valve. Interestingly, it has only been in the last week or maybe a little more that Matthew has allowed us to raise his shirt and look at his chest…He even posed for some pictures for me today. The wound, or incision has almost completely healed now…even though his chest may not be completely fused at this time. Of course, I am always looking for topics and lessons that I could write about for the blog, I started to think about why Matthew didn’t want us to look at his wound, but would allow us to now look at his scar? “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”  Harry Crews I started to recall the many scars on my body…as a carpenter I have many of them on my hands, some on my arms and legs and even a few on my head. Each one has a story that goes with it. Some of them I am not too proud of as they were the result of doing something stupid like shooting a nail through my finger with a nail gun or the improper use of a utility knife. Matthew has a few that were the result of carelessnes or simply caused by an unfortunate accident. Today I counted 7 larger scars on Matthew’s body that were intentional, a result of…
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Why is Matthew, Matthew…

As a continuation of last week’s topic He’s my brother, he might lick you , I wanted to give you the answers to some questions I asked to Matthew’s sisters, Hannah 16, Megan 15, and Sarah Anne 21 months. Sarah Anne’s answers are a compilation of all of what we thought Sarah Anne would say. The questions have to do with being a sibling of someone with special needs…joys and struggles, good times and the bad. What are some of the joys and good things that you have experienced with having Matthew as a brother?Both Hannah and Megan had similar answers that centered around always having a good parking spot and preferential treatment at theme parks and other public places. They have had travel experiences that they probably would not have had if not for special doctors appointments and conferences. They also feel that Matthew has enhanced their relationships by making them better listeners and more patient. We believe that Sarah Anne would say that it is cool to have a swing in the house that Matthew allows her to use…when he is not on it. What are some of the struggles and pain you have experienced with Matthew? Hannah and Megan agreed that the number one struggle is that many times they do not know what Matthew is trying to communicate, multiple times a day…which leads to behaviors like pinching, scratching and hair pulling. They also feel that they do not have a “normal” relationship with Matthew and that their…
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He’s my brother, he might lick you…

As I close the end of one full year of this journey of writing about our “Lesson’s from the Book of Matthew” I would like to take some time to talk about the important role of siblings to one who has special needs. This week I plan to share my viewpoint and insights…next week I would like to continue and give you the perspective from Matthew’s older sisters and I will have Theresa speak for Sarah Anne. When we began this journey with Matthew nearly ten years ago we had no idea what we were in for…neither did Hannah or Megan. They were excited about having a baby brother and the anticipation of his birth grew up until the due date and birth. That was when the whirlwind for us and them began. As we processed the complications and building prognosis of Matthew, Hannah and Megan just wanted to see their brother. For the first week they could only look through the glass door of the Neo Natal Intensive Care Unit at the hospital as they were not allowed in the room…about twenty feet from his bed. Matthew was transferred to a different hospital after the first week when they finally saw him…a mess of wires, tubes and machines, but still their brother. As Matthew spent a couple days shy of his first month in the hospital we tried to keep things somewhat normal for the girls. I remember one of them, when asked how Matthew was doing by a well-wisher,…
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Thermometer or thermostat?

Author, blogger and marketing guru Seth Godin published a book I read this past week called Tribes. It is a collection of daily blog entries for a one year period. One of the entries was titled Thermometer or Thermostat in which he likened the action and reaction of marketing to these two tools. Do you just record the temperature or do you make changes as needed? There was a lot more to it than that, but it made me recall the days we spent in the surgery and Cardiac Pediatric Intensive Care waiting rooms this past week and the different emotions that we experienced compared to the many others that were sharing in our same experience of a child facing cardiac surgery. Many of the faces of family were those of thermometers, directly showing the ups and downs of the news that came from the operating room, recovery room and from the days following from the Intensive Care Unit. I can’t go without saying that we experienced some of those same ups and downs. But, I can also say that we were prepared and equipped ahead of time with a thermostat to accompany the thermometer that could be adjusted. Our thermostat consisted of the thousands praying and with the passing of a tweet, a text, or a Facebook update, would go to the Father with the power of many voices. The thermostat also contained the power of peace, knowing that whatever the outcome would be, we would accept it as God’s…
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A shift in prayer…

Just a brief update on Matthew and his recovery at Home…Could someone please tell our son that he had major open heart surgery 6 days ago! We are having a hard time keeping this boy down! He had a good night the first night home. Many of you saw the picture of him happy lying in front of his television with his beloved letters. I have attached a link to a video we took as well and have uploaded to YouTube. Feel free to look at some of Matthew’s other videos while there. Matthew – Home from surgery on YouTube He woke up on Wednesday at 7:00 and began his day as normal. The only break he took was to spend some time in the wicker chair with the stuffed gorilla. We though he might take a nap…not to be. We thought he might go to bed early then…not to be. Matthew decided that he did not need to sleep at all last night. He continued to play, even having Theresa and I change posts on his watch at about 5:00 am. He finally gave in at 7:00 am, a full 24 hours later. He only slept for 3 hours and began his day again. So, our obvious prayer is for him to get some rest…and for us to get some rest. We are very grateful for his progress…just a little nervous that he is doing so well. To add to the “nervous” part, while I was taking things to…
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You have done marvelous things…

“O LORD, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.”  Isaiah 25:1 It is with great joy in our hearts and great joy of laughter and smiles from Matthew that he is now lying in front of his own television watching his beloved Signing Times videos from the comfort of his new healing place called our home. Although we know that the next few days and even weeks will be critical in keeping Matthew healthy, we rejoice that we have cleared one of the most challenging things we have faced on this road called life with Matthew. We now need to get with the business of sticking with the recommendations made that we have to limit our social lives in the next 30 days to keep the threat of sickness and infection from coming near as Matthew heals from this major surgery. Even though we were excited to leave and “hit the road” we were sad to leave some great friends we made behind. Please pray for Paislyn tonight and her parents as they look forward to going home tomorrow…if she can keep food and medicine down overnight. To read more about this incredible young family check out the link on the right Little Miss Miracle. We will be lifting up the Metzgers this night and the days ahead. We will spend the rest of this week getting much needed rest. We cannot thank…
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A busy day of healing…

I thought I would take a moment to update everyone who are diligently praying for our Matthew and to give you some direction for what to focus your prayer on at this time. highlighting the good, Matthew was moved to the regular pediatric cardiac area on Sunday after 2 days in the ICU. Today he has been weening off the heavy drugs and has has all of his “tethers” removed as in his chest tube, arterial line in his neck, his IV’s and his pulse/oxygen line. He is most excited about all of these things. Today he also had another heart echo to take a look at the work. The report was really good as far as the repair. A few of the bad things: Matthew has a partially collapsed lung due to some excess fluid in his chest cavity that could not find it’s way to the drainage tube. We continue to monitor this. The other prayer request is that although Theresa and I are extremely thrilled with everything that has taken place over the last 5 days and feel overwhelmed with God’s blessing and the outpouring of support in the form of your prayer, we are exhausted. I have been with Matthew through the night and Theresa has been with him during the day. I am not getting the rest I need and Theresa is doing double duty with Sarah Anne. Megan has been our “trooper” in that she is stepping up and giving up spending time with her…
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Sharing Matthew…

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 hand how many times I have been aroused from a sleep and felt the need to pray. I sat in bed and journaled the following thoughts that I believe God was using to show me that He is in control of this surgery…a surgery I believe the benefit is not just an improvement in Matthew’s health…the benefit extends to all who are praying for him. Matthew is a gift, a gift who God will use to build and strengthen faith, prayer and character. Here is what I am learning… M – Meek and humble of heart. I am learning that to be meek means knowing that I do not have all of the answers, knowing that I have limitations and that I…
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Post op recovery…

It has been a long day…Matthew has proved that the only thing predictable about him is that he continues to be un-predictable and defies most “norms” As of 10:30 pm he is resting comfortably (at least as much as possible). He continues to hold on to his squeaky toy dog and will not let go. They removed the ventilator tube about 7:30 after having turned it off an hour before. We are thrilled as they thought the “norm” would be to keep it in all night. He is breathing quite well and his lungs are keeping clear. It will be a long night as the plan is that I will stay with him all night and Theresa will relieve me in the morning. We cannot Thank Aly for the miles she put on walking Sarah Anne this afternoon while Theresa and I were with Matthew when he woke up. We look forward to having Meggan (not our Megan) come and do the same tomorrow. Both of these gals were care-givers for Matthew over the years while they attended Grand Valley State University. Aly is now a nurse at U of M and Meggan will be graduating from U of M dental school in a few weeks. We are thankful for the friendships we have made and continue with them. Speaking of friendships, we met an amazing family, of all places in a waiting room yesterday as we had pre-op appointments. The friendship has grown as they are on a similar…
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We wait, the night before…

The day of testing went well and we are now settled in the hotel for the night. We are thankful that the University of Michigan has a 30 bed hotel for guests wishing to stay right at the hospital. The cardiologist was encouraged with the echo and with the images made with a 3D imaging machine…pretty cool stuff. The plan is still to repair the valve. We are now scheduled to admit Matthew at 10:30 am…the surgery should last about 4 hours but we will have prep and recovery room time on either side of that. If you think of it, say a prayer when you take your lunch on Friday as Matthew will be in the early to middle stages of the surgery. Theresa and I thank all of you for the kind words of encouragement, the promise to pray and for the overwhelming response to sending the prayer request for Matthew to your friends and prayer partners. We are also very blessed by our own church community and fellow ministry co-workers back in Grand Rapids…you are literally “with us” every time we walk in the guest room you helped provide. Once again you have proved what it means to act like Christ. We look forward to reporting good news tomorrow afternoon/evening after Matthew is settled in to the Peds ICU. If you feel led to do so, we welcome you to “share” this prayer request with your friends and prayer partners…Kevin & Theresa