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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Tragedy, then trust…Don’t be afraid

As Jairus and Jesus were going to Jairus’s home ” a messeger arrived from the home of Jairus, the leader of the synagogue. He told him, ‘your daughter is dead. There’s no use troubling the Teacher now.’ But when Jesus heard what had happened, he said to Jairus, ‘Don’t be afraid, Just have faith, and she will be healed'” (Luke 8:49-50 NLT). Jairus was whipsawed between the contrasting messages. The first, from the servants: “Your daughter is dead.” the second, from Jesus: “Don’t be afraid.” Horror called from one side. Hope compelled from the other. Tragedy, then trust. Jairus heard two voices and had to choose which one he would heed. Don’t we all? Fearless: Imagine Your Life Without Fear Max Lucado

I couldn’t agree more with Max Lucado in this snapshot of trust. “Jairus was whipsawed between the two contrasting messages.” A great description of  the events of two weeks ago today…in the early morning hours of May 6, we “whipsawed” back and forth between the messages like “you are having a baby today!”, “airlift to Ann Arbor, mom and baby or just baby?”, “will there be an airway to work with?”, “surgery may be necessary immediately”…all of these contrasted with the same calming words that Jesus spoke to Jairus “Don’t be afraid”. All the plans we were making, all of the minute details of what June 8 would look like and the following weeks of care, family planning, dog sitting, school and other commitments being attended to. Instead, we were thrust into this situation of complete reliance on God, on those around us, our family and our church family.

A "tubeless" Isaac...between feeding tubes during his esophagus testing

We had accepted the fact that Isaac would not be perfect in the eyes of this world…but perfect in God’s eyes and ours. We had accepted that he would probably share some of the same issue and even produce his own challenges that Matthew had breezed through or over. We had embraced and were galvanized in our resolve to take on the challenge of another CHARGE’r. What we were not prepared for was not doing it on our terms. In an instant we were back-and-forth between tragedy and trust. Just as Jairus was presented two voices, one of horror and one of hope…we heard two voices, we had to choose which one we would heed.

Many of you may never know the impact of the prayer you provided the first few days as our church family prayed Isaac into this world during services that morning, or prayed him through the surgery just days old. Prayer not just for Isaac, but for mom, dad and family too. Your willingness to share our burden resulted in just over 7,000 page views on Lessons from Matthew, this blog site. Not to mention the thousands at our home church and the other churches around this city and beyond that Sunday morning. We can truly say that Isaac is not our own…he belongs to God. A product of faith and answered prayer. Tragedy, then trust.

We have much to report on his progress and healing from surgery. He has made huge strides in the right direction the past week. His breathing is better, he is completely on mommy’s milk through a tube that takes it directly to his intestines. He is better at being able to overcome the excess secretions as they form in his mouth and throat…requiring only occasional intervention to clear it by the dreaded suction machine. His eyes are bright and open frequently when he hears voices around him. We are encouraged by his ability to recognize sound and to follow movement with his eyes…two major hurdles of CHARGE.

This next week will include talk of when to dilate his esophagus where the two lengths were connected. The area is not leaking but is very narrow and will require a means to open it up to allow feeding by mouth. We will also find out where we stand with the normal premmie issues with his heart and possible intervention there as well.

Many we have seen in the past week have asked about visiting Isaac in the hospital…you are welcome. Just call ahead to make sure we are there…and please be sensitive to any symptoms of illness you may or anyone in your household may have as Isaac is still a little fragile in the area of fending off viruses.

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