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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Surviving the “normal” in special needs parenting

Several conversations between my wife and myself and with other families who are caregivers of medically fragile children/special needs lately have been over the times in our lives that are referred to as “normal”. The consensus is that we tend to dread them. It sounds quite opposite of what one would expect doesn’t it? I hope to shed some light on this and maybe it will speak to you and your family as well.

Despite having multiple issues that would keep any of us in bed...Isaac greets most mornings with a smile. Appropriate message on our wall above his crib: Miracles, Believe in Them.

Despite having multiple issues that would keep any of us in bed…Isaac greets most mornings with a smile. Appropriate message on our wall above his crib: Miracles, Believe in Them.

As parents of a medically fragile child…actually, in our case, two with medical issues/special needs we become quite accustomed to the crisis times in our lives. We act with laser focus, God seems right at hand with an army of prayer warriors around us, and our support systems of family and friends kick in full force. Our vision becomes like a tunnel and the “normal” things around us seem to disappear. We are a witness to miracles and God’s healing power as we have spent time in a darkened hospital room lit only by the towers of pumps and monitors and the computer and phone screens that send encouraging words and prayer as we wait out the ups and downs of another healing. But, when we hit the “normal” patches with the common storms of life we seem to struggle the most. We can become overwhelmed with the “what could have happened” scenarios. We stress over if the other siblings will survive taking a back seat to the crisis. We begin our routines of constant doctor and therapy appointments all around trying to keep family time intact. Here is what our recent “normal” time has included just in the past few months…just to name a few we have struggled through a broken dishwasher, a broken washing machine, several costly car repairs, two cars needing tires, the flooding of the basement because of a backed up floor drain and a leaking pipe, drastic cutbacks in our county provided respite care budget and a failed test that predicts and uncertain future of Isaac ever possibly eating by mouth, and we are now going on 8 weeks of a “common” cold taking root in our home. Almost too much to overcome. In fact, Theresa recently spent a night in the hospital for what appeared to be heart issues…it turned out to be a stress related anxiety attack….what a shocker!. I struggle with storming the gates of heaven with prayer over a set of tires or a broken washing machine when, life and death, surgery successes and provisions of good health seem much more appropriate. I also know that I struggle with the doubts and questions like “Really God? Really…another breakdown of this car?. What? The basement is flooded?” I often wonder why I tend to forget about the miracles so soon after they occur and dwell on the small bumps and setbacks as if God has forgotten about us and turned his back on our “normal” problems.

I am a person who reads a lot but this year I have been lacking as I have spent a considerable amount of my reading time getting my book finished and published over the spring and summer. One book that I had started but has been sitting on the “to read” pile with only a few chapters read is a book by Max Lucado called In the Eye of the Storm . I picked this book up again and only read a few pages when the whole context of this blog post came into focus. We are not alone. In fact, the disciples of Jesus experienced what I have been explaining here in a very similar way…interestingly…right after participating in a miracle of feeding 5,000 people and just before Peter walking on water to greet Jesus.

22 Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd. 23 After he had dismissed them, he went up on a mountainside by himself to pray. Later that night, he was there alone, 24 and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it.

25 Shortly before dawn Jesus went out to them, walking on the lake. 26 When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear.

27 But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”

28 “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”

29 “Come,” he said.

Then Peter got down out of the boat, walked on the water and came toward Jesus. 30 But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”

31 Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Matthew 14:22-31

Max talks about the time that passed between verses 22 and 24. The time frame has been estimated between six to eight hours…for them and for us as we are tossed around by life’s waves it can seem like an eternity. Here are few of Max Lucado’s words:

The greatest storm that night was not in the sky; it was in the disciple’s hearts. The greatest fear was not from seeing the storm-driven waves; it came from seeing the back of their leader as he left them to face the night with only questions as companions.

I have had the same questions as we have been led into another storm.

Surely Jesus will help us, they thought. They’d seen him still storms like this before. On this same sea, they had awakened him during a storm, and he commanded the skies to be silent. They’d seen him quiet the wind and soothe the waves. Surely he will come off the mountain.

But he doesn’t. Their arms begin to ache from rowing. Still not sign of Jesus. Three hours. Four hours. The winds rage. The boat bounces. Still no Jesus. Midnight comes. Their eyes search for God – in vain…

As I have had our washing machine literally in pieces as I have swapped out a bad pump…literally in the middle of the night because of day long appointments for the boys and work commitments, but the laundry of 7 people does not take a break…I have cried out. As I have replaced brake pads and other car parts…I have cried out. As we make yet another trip to the ER, rode in the back of ambulance, vacuumed up water from carpet, cleaned poo off a wall, floor and ceiling, chased my naked son down the street…I have cried out. As we decline yet another invitation to a fun event…we have cried out.

Jesus came. he finally came. But, between verse 24, being buffeted by the waves, and verse 25, when Jesus appeared, a thousand questions are asked. Questions you have probably asked too. Perhaps you know the angst of being suspended between verses 24 and 25.

Sarah Anne, during a recent storm watching worms on the sidewalk

Sarah Anne, during a recent storm watching worms on the sidewalk

Jesus does come. And when he does it is often accompanied by another miracle…maybe not as dramatic as Peter’s walk across the water, but we experience miracles none the less. The disciples doubted many times…We have doubted many times if God would ever show up again. We are learning over and over again that the storm does clear. The waves calm and the skies will part again. If God will show up again, why is it so hard to remember. He knows my struggle, he knows each and every storm. Personally, I have cried privately on my commute, on the way to pick up more car parts and in the shower as I have cleaned away the sweat and the tears of another storm.

I think the reason we are given the opportunity to endure storms in the “normal” periods of or lives is that we are not sent into the storm alone. There was not just one person in the boat on the sea during the storm. The disciples celebrated the miracles and endured the storms together. At different times there is one, or two who can be the voice of comfort, who can remind us of sunnier days, who can wipe away the tears as we wait out the seemingly eternity of time between the verses of 24 and 25 from Matthew 14. At any given time…some of us are being beaten by the storm, while others are standing on the shore with a beacon of light to offer safe harbor.

Many of our recent storms still have the echo of thunder in the distance…some we can see the familiar flash of light in the distance heading our way…but, “normal” does bring with it more than storms. We have celebrated the small things this summer…a new play set in the back yard, Isaac taking his first steps, Matthew breakthroughs in communication and behavior issues, Sarah Anne carrying on the Troupe tradition of 4-H, Hannah successfully juggling a couple of jobs and school, and Megan being accepted as an intern and able to dance with a Christian ministry dance company. And, for the first time in over 3 years we took a small family vacation together for a few days in Chicago to attend a family CHARGE Conference.

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