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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

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 role is more of a caregiver than a sibling at times as Matthew rarely reciprocates in a typical sibling fashion. We all agreed that Sarah Anne would say that she never knows when she may get body slammed, but is getting better at picking up the clues and signs.

What have you learned that you may not have learned if Matthew did not have special needs? Hannah and Megan both mentioned sign language. Hannah went on to say that she has learned that computer mouse pads are indeed a snack/chew toy according to Matthew. Megan added that she has learned that she thinks that she looks at situations with a different perspective, more caring and sympathetically. Our conclusion with Sarah Anne is that she has learned that when Matthew makes a yodeling sound and is running past it is best to just “hit the deck” and lay flat on the floor until he passes by. Good advice Sarah Anne, good advice.

Why do you think God made Matthew, Matthew? Many people may have this same question and may even want to question God face-to-face. Hannah and Megan share a unique perspective, they both answered with just a few words and were almost the same…to inspire and to teach. We would think that Sarah Anne would say…what? Is there something wrong with Matthew?

“On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts we think are less honorable we treat with special honor. And the parts that are unrepresentable are treated with special modesty, while our presentable parts need no special treatment.”   1 Corinthians 12:22-24

From this very popular “One Body, Many Parts” (1 Corinthians 12:12-31) passage it is crystal clear why Matthew, and others very much like him, are who they are. They are critical parts of what we call the body of Christ. They enhance, inspire and help prioritize our lives…and many times prioritized means simpler.

This week our church family celebrates 25 years of the intentional act of ministry to those who have special needs and the families and care givers who are entrusted with their care. The Troupe’s are grateful that we have such a ministry to rely on…in more ways than one. There are many gifts that people could give back to their church…one of the most rewarding ones is to volunteer to work with individuals who have special needs. For some it can be intimidating at first, but I cannot think of any other type of ministry where the people who you are serving accept you for who you are, immediately, without conditions. They have a way of melting your heart with a smile or a hug and before too long one will wonder who is the one being ministered to.

“I can do things you cannot, you can do things I cannot; together we can do great things.”  Mother Teresa
Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer.