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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Can Brokeness be a Gift?

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.


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.


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.

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