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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Water, some down some spit out…

It has been an interesting few weeks in our house with the new found energy surfacing from the apparent success of Matthew’s mitral valve repair surgery. One of Matthew’s new interests is water…and with no prejudice on where it comes from…the sink, tub, toilet or his favorite, the cool dispenser that provides non-stop ice and water on the front of the refrigerator.

Matthew signing "water"...repeated 100 or more times a day...

The current protocol at home is: Bathroom door locked at all times, no beverage glasses left out unless they are on top of the refrigerator, refrigerator front dispenser is forever on the “lock” feature and if you rinse a dish, no water can remain in it while in the sink…if any of these are missed it is assumed by Matthew that he has the “all clear” to enjoy. Theresa has been training a couple of new caregivers the past few weeks…It is kind of comical when we stop to think about some of the “rules” in our house and how strange they may sound to someone new.

If one morning I walked on top of the water across the Potomac River, the headline that afternoon would read: “President Can’t Swim.” Lyndon B. Johnson

I guess you just have to look at it from a different direction…The funny thing we realized after the initial irritation of stepping in a puddle with a fresh pair if socks repeatedly or picking up another batch of soaked school papers on the island was that when we started to regulate his water play-time we noticed that he was actually swallowing some of it…voluntarily and without coughing. Now, most of an offering of water is spit out like in a cheesy comedy sketch after a shocking line is delivered…but again, he is swallowing some of it!

Theresa and I have talked about this be likened to going through the whole potty training scenario that we are in the early stages with Sarah Anne…It starts as a little game at first, there are most likely going to be messes along the way, but sooner or later it all clicks and progress is made until it is second-nature. We are hopeful that this is the case with the whole water thing with Matthew. He has never taken food by mouth other than a few small baby spoonfuls the entire time he has been in feeding therapy and continues to be fed by a tube inserted in the button to his tummy. He has rarely ever wanted to take any type of liquid by mouth other than maybe to taste it…never have we actually observed the swallow action in his throat like we have been watching lately.

Water, something that is vital to life and has many references in scripture and in our worship. I Love the song by artist Mark Schultz…I AM

I am the fount of living water
The risen son of man
The healer of the broken
And when you cry
I am your savior and redeemer
Who bore the sins of man
The author and perfecter
Beginning and the end
I am

We are witnesses to the “fount of living water” and will continue to draw from it. We have been on the receiving end of healing. When we have cried out you have been there. Thank you, Jesus, for being my savior and redeemer, the author and perfecter of me.

Matthew, continue to check the ice and water dispenser every 5 minutes, we will keep the towels handy, the bathroom door locked and we will lift our water glasses high…up to the top of the refrigerator until this hopeful “water-to-food” phase is completed.

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer.