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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Feeling the heat, but not giving in to the burn…

Exactly a week ago I was in the back of an ambulance on the way to the hospital with Isaac. As I was rhythmically squeezing an AMBU bag, continuing to provide oxygen to Isaac’s lungs the EMT with us in the back called in Isaac’s weak vitals and continued prepping him for our arrival at the hospital. Theresa was left behind…a wreck after providing the first 20 minutes of CPR.

In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Ephesians 6:16 (NIV)

With a week in the hospital behind us…we are now truly able to see the incredible triumphs and the “flaming arrows” that we experienced, an expected result when God has or is working in a powerful way. Spiritual warfare is a real thing and cannot be dismissed. We have learned and continue to learn that in dodging the arrows we may feel the heat from them but we do not have to take the bait and experience the burn. Even though it can be hard in the moment…recognize what the real reason may be for “bad” things happening.

Reunited with his precious pacy after a long time of going without. Apparently the low sodium upset his stomach. His pacy made him gag for a week leading up to his seizures.

We had a tough week for sure. I stayed at the hospital at night with Isaac to stay clear of the cold/fevers that were running rampant at home with Theresa and the rest of the family. I woke up every morning from my transformer chair/bed in Isaac’s room in the Peds ICU on the eight floor with a great view of the rising sun. I can not dismiss the fact that the exact spot the sun rose was directly above Calvary Church. The church where we worship, I work and where our family is blanketed by prayer and blessed with help for our ever-expanding needs. I was overcome one morning with the weight of what had transpired over the past several days. Our family and you, our praying family, were a witness to a miracle of Isaac surviving a series of seizures brought on by an unexplained loss of sodium in his blood…a loss and level so low that we were told by doctor after doctor that his level was “too low to sustain life”. We have experienced many “flaming arrows” around this event in the form of a broken windshield (our Toyota), a dead battery (our Explorer), a broken alternator (on the miracle Suburban donated by a few close friends in response to being prompted in prayer), fevers and vomiting on the home front. I was reflecting one morning while sitting next to Isaac’s hospital bed on something Theresa had taped to what we call the inspiration wall (a cabinet door in our kitchen). It is a quote that reads:

I have learned that in every circumstance that comes my way, I can choose to respond in one of two ways: I can whine or I can worship! And, I can’t worship without giving thanks. It just isn’t possible. When we choose the pathway of worship and giving thanks, especially in the midst of difficult circumstances, there is a fragrance, a radiance, that issues forth out of our lives to bless the Lord and others.” – Nancy Leigh Demoss, Choosing Gratitude: Your Journey to Joy

As I finished my moment of gratitude and praise that morning, and after wiping the tears from my eyes, I set to work on phone calls to the garage, to the auto glass company, handling a few things at work and checked in with Theresa who was caring for all the sick ones at home while being sick herself. Isaac’s nurse overheard my phone calls while she was sitting in our room doing her charting and asked the question “how on Earth do you deal with all the drama in your life?” I told her that all of these little “annoyances” pale in comparison to having to do CPR on your own child…and that we, as a family are privileged to witness miracle after miracle. A few flaming arrows from the enemy seem like pesky flies. A moment of fragrance, a radiance issued forth from our lives, from Isaac, to bless the Lord and others. Our next few days with that nurse and others were filled with talking about faith, struggles, healing and how good God is.

God is good, all the time…All the time, God is good.

It doesn’t end there…it’s never a perfect ending. Just one night home again as a family and the thought of a long couple of days to catch up on some sleep and healing for the rest of the family, our night nurse called in sick just an hour before the shift. Plan B was initiated and once again we were left with the choices of whine, or worship. It’s never easy…but we will take the miracles over sleep anytime.

Please continue to pray as we sort through the sodium level problem. Much like a diabetic needs to check blood sugar levels, we will need to do the same for his sodium. Even though he is stable now, and we will watch his sodium, we may never know the cause of why his levels dropped to where they did. Another CHARGE Syndrome mystery. Also, please thank God for his goodness…we have many things, as I am sure you do as well, to be grateful for.

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