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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Facing the storm…sunshine above the clouds

The disciples fought the storm for nine cold, skin drenching hours. And about 4:00 a.m. the unspeakable happened. They spotted someone coming on the water. “‘A ghost!’ they said, crying out in terror” (v.26 MSG). They didn’t expect Jesus to come to them this way. Neither do we. We expect him to come in the form of peaceful hymns or Easter Sundays or quiet retreats. We expect to find Jesus in morning devotionals, church suppers, and meditation. We never expect to see him in a bear market, pink slip, lawsuit, foreclosure, or war. We never expect to see him in a storm. But it is in storms that he does his finest work, for it is in storms that he has our keenest attention. Fearless: Imagine Your Life Without Fear Max Lucado

The storm…If you can picture the weather people who are laden down in all-weather gear, waves crashing in the background – barely able to stand with the whipping wind making the traffic signs wave back and forth to each other…yeah, that is kind of where we find ourselves this past week. It has been scary and wonderful all at the same time. It isn’t unlike marveling at the wonder of nature as a thunderstorm rolls in, wreaks it havoc, moves on and leaves a beautiful sunset behind. We have had days end with a beautiful sunset as well as days end with thunder still in the distance…hoping, praying the phone doesn’t ring with the delivery of bad news, another flash of lightning.

As Peter took that step of faith, one that Jesus asked him to do, he was fine…as long as his gaze was upon Jesus. We have found ourselves there too. One of the hardest things, among many this week, is to have to pull Theresa away and to take her home at night, torn between comforting, swaddling and just being there for every cry – and tending to the needs of a 2 year old who just wants to know “baby Isaac be okay?”, Matthew who just wants to stay home and to tend to her own healing of having surgery too. It is times like this when your gaze comes off the outstretched arm of a waiting Lord…and you begin to sink, become weak in your faith and in the bigger work that God is doing. You begin to think about nurses and will they check on our baby enough, will they comfort they way we do, will we miss a doctor’s update, a change in care. We have to drive Westward and trust. Trust that the Son is above the clouds of this current storm.

His call to courage is not a call to naiveté or ignorance. We aren’t oblivious to the overwhelming challenges that life brings. We’re to counterbalance them with long looks at God’s accomplishments. “We must pay much closer attention to what we have heard, so that we do not drift away from it” (Heb. 2:1 NASB). Do whatever it takes to keep your gaze on Jesus. Fearless: Imagine Your Life Without Fear Max Lucado

A call to courage…a call to keep our eyes upon the Healer as he heals through the healers and caregivers here at Devos Children’s Hospital. Keep our eyes on what God has already done in Isaac’s short life. Keep our eyes on all of the miracles we can shout out in the work he has done in Matthew’s life and in the rest of our family.

Isaac wearing his cool sunshades

We have much to be thankful for and to pray for as well. Although we loved Isaac’s sun shades, we are thankful his bad levels in his liver have evened out. No more spotlight and sunshades. Today he had some tests to take a look at his esophagus repair and the report was great…NO leaks! This means we should be able to try some small amounts of feeding in the next few days. There are other things to consider such as a very restricted esophagus and a deep concern for reflux but good news is good news. Also, on the good news side of things, Isaac should be able to have his chest tube removed tonight. A chest tube probably has to be the most uncomfortable things to have in all of a hospital experience.

For the prayer and our next hurdles…Isaac has a real problem with keeping an airway open. The only position he has been able to tolerate is the prone position…flat on his tummy, slightly inclined. Any other position makes him gasp for air and fill his little mouth with saliva. There are many theories and we will begin to do the process of elimination over the next few days. Theories include a weak swallow or a too-much restricted esophagus in that he cannot clear secretions, thus blocking air. Another theory is a “floppy” trachea…not able to hold the shape well enough. Yet another theory is the shape and form of his cleft which allows the tongue to flop back and obstruct the airway. There may be others but these are the most prominent ones on the table. It very well may mean that all of them are true. This is where the prayer and the trust come together.

You may share these prayer needs as you feel led by using the share buttons below. If you want updates you can subscribe to the blog by becoming part of Matthew’s and now Isaac’s prayer team. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!


  1. Tom

    Fixing my gaze with you and praying for you now! Such comfort and faith in your words. Praying God gives all of this abundantly.

  2. Pamela Ryan

    Hi Kevin….and everyone. Kisses for baby Isaac and only good thoughts coming your way.

  3. Jen McDonough "The Iron Jen"

    Kevin, Little Isaac is beautiful! It was so fun to see the recent picture of him and your beautiful family over at 48days.net.
    Prayers for little Isaac and your family that you continue on your journey with strength, courage, and joy.

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