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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

It’s your move…what will be your response?

A quick note before I dive into the latest blog post. Our book, Strength to Care: Reflections for Parents of Children with Complex Medical and Special Needs is available for free on Amazon in the Kindle version on May 16 & 17. Please share this blog with anyone who you think may benefit from this collection of blog posts that deal with a hospital stay, a surgery or just plain old life is hard right now.

It’s your move…what will be your response?

A trusted mentor friend of mine, Kent Julian, who has spent his life teaching, writing and speaking often uses an equation to get a point across. That equation is E+R=O, or the Events plus the Response will equal the Outcome. In a recent podcast (Live it Forward podcast) he took time to lay out how this equation played out in his own life as he struggled with some learning challenges early on in school and into college. It reminded me of why I write and speak often about our experiences in this special needs journey with our family.

Isaac recently celebrated his 4th birthday! He loves the camera and usually will give us a smile.

Isaac recently celebrated his 4th birthday! He loves the camera and usually will give us a smile.

Why does the Troupe family lay it all “out there” by sharing our experiences, both the good and the bad? I hope to answer this question and maybe inspire you to change your conditioned responses to events to change the outcomes in your lives.

I have been blogging now for seven years sharing our ups and downs, joys and sorrows as we have raised one, now two boys with a rare genetic condition called CHARGE Syndrome. We also have three other children who have blessed our lives. Along with blogging, we have shared our family by publishing a book and are working on more. We have also shared our journey by sharing with multiple groups. But, the main reason for sharing our story is that we have chosen to be an encouragement to others on the same journey. Many of the events that occur in our lives are beyond our control. The only control we have is how we choose to respond. That response will shape and determine the outcome. It is such a comfort and a blessing to be able to use the events, even the ones that are most painful, to do something good…if only we choose to.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  2 Corinthians 1:3-4

We know that Matthew and Isaac are not an accident or just a random mutation of a gene. Yes, that is how CHARGE Syndrome happens, but there was no mistake about the plan God had for each of them…and for us. The real test was how we responded to these challenges and the struggles we face each and every day. We share some of our struggles and joys on this blog and through social media but it would be impossible to share them all as each day has it’s own set of hurdles and triumphs. It is the sum of all of these experiences that God is the father of compassion and the God of all comfort that we are most equipped to be able to comfort those who need it at the right time…only if we respond accordingly.

We could share multiple stories of how we have been in the right place at the right time to be able to offer encouragement to another family or and individual who had been put in our path. What I want to share here is a recent Facebook post from a family who have chosen to take in, love and give a home to several foster kids over the years who have special needs. What isn’t shared here is that they were at the hospital dealing with their own issues, their own pain as they cared for another foster care case:

Tonight I met a crying lady in the chapel, who’s son is being discharged tomorrow or weds to adult care. When I saw her crying I just went up to her and said need a hug? We cried over her choice of what to do, and my telling her of our boys. It was like God put us both in the chapel to connect. My boys are so happy and content and we have the ability to do more without fears of behavior or aggression. My kids love to go see them and the staff is fantastic!

I gave her my phone number and she promised to call when sky’s are dark. I will also call her to remind her light comes after storms.

I Hate being here again for a kiddo but was grateful God could use our struggles to help another mom.

This is how the equation of E+R=O works. This is how 2 Corinthians 1:3-4 is played out in real life. This is how our response, the only thing we have complete control of, ends up determining the outcome.

As we have received comfort from those who have chosen to respond positively, and as God has extended compassion and comfort to us…we will continue to respond with the same compassion and comfort we have received. We will still struggle, we will still experience pain and discomfort but it will better equip us for the journey that God has placed before us. This is our assignment…our response is vital to the outcome. That is why we share our struggles and our joys on this journey. This is our response to the hand we have been dealt. By the way…although our hand is painful, stressful, can harbor anger, tiresome, etc. It can also bring us tremendous joy, the opportunity to see the unique fingerprints of God and for that reason we would not trade one moment or our response.

What is going to be your response? How will you choose to use your experiences, good or bad to determine the outcome?

Kevin is available for speaking to groups of any size. Click on the “Want Kevin to speak at your event?” tab above for more information. 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.

2 Comments

  1. Kent Julian

    Kevin…you and your family continue to bless me! You are living it forward in the truest sense of the phrase! Honored to know you // #E+R=O

  2. kmtroupe (Post author)

    Kent, thank you for continuing to invest in people, encouraging us and giving practical ways to Live it Forward.

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