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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Where is my phone…!?

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.

gradinvite

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!

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