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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

We’re stuck here for life…

We are now a little more into a week of our “sheltering in” that has been recommended by our local, state and federal authorities. Many of you have been mandated to do this in varying degrees in your own communities.

Our current front door greeting…one of the many versions we have had.

I had been asked a while back when this was all unfolding how we are dealing and preparing for this pandemic…my response, our response as a family has been “it really is not that much different than we are used to”. It really isn’t. We have been living this life for the past nearly 19 years with one, now two medically fragile kids in the house. Sanitize after going into a public place, yep. Wash hands and then changing clothes after returning home, yep. Caregivers (and friends) are conditioned to have changed their cloths before arriving, remove their shoes and wash their hands after entering our home. And, the most important rule…no sick visitors.

Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.

Psalm 23:4

Another question we have been asked about the COVID – 19 outbreak; “Are you afraid that your boys will get this?”. We have learned to not live in fear. But, to quote our pastor this past week; “…Nor do we run out into the middle of the street in heavy traffic”. EVERYTHING is a potential threat to our boys…especially Isaac. COVID – 19, the “regular” flu, a stomach bug, respiratory infections and even the everyday common cold. Isaac can go from 0-60 in just an hour. From not needing oxygen to needing 5 liters and a ride in an ambulance in just an hours time…even with “it’s just a little cold”.

We live the daily life of nurses, therapists, caregivers, oxygen concentrators, feeding buttons, trachea tubes, monitors, food pumps, shaky vests, etc. We carry “go bags” with the necessary supplies to handle just about every emergency…Just in case. We are prepared and have been even before there was a run on toilet paper and cleaning/sanitizing supplies.

As we have processed what has unfolded over the last week we have been adjusting to our new normal, at least for the foreseeable future, we have come to terms that Theresa and I are both in the higher risk category. I have had a heart attack and Theresa, Hannah and Sarah Anne all deal with different degrees of asthma.

We are taking this all in stride. It is interesting to see how the rest of our family, friends and coworkers are responding to this current threat. There are many emotions, and levels of response. Some are sheltering in just short of being in a bunker and others are going on like nothing is wrong. I shared a temporary profile picture on my Facebook page this past week. I had many people comment on it…is quite thought provoking. Only the Vulnerable Are at Risk…Your “Only” is My Everything. Your “Only” may be a grand parent, a parent, a spouse, a child, a friend or a neighbor. They all matter and deserve us all to always be aware when we have “just” a sniffle or fever.

Some things you could help us pray through: Matthew and Isaac simply do not understand what is happening with these new schedules. Matthew is not adjusting well to not having a routine. It is affecting his behaviors and his sleep. When dad has is not home he dictates the mood and attention in the home and it is quite hard for Theresa to manage. Pray also for Megan and John who are dealing with this such a long ways away in Dallas and Megan is dealing with her own health issues. Theresa and Sarah Anne had to cancel and much anticipated trip to visit them this week.

Matthew using his communication device…over and over asking for a calendar. This is his way of saying “What is going on?”

We will all get through this. I think, even with the inconveniences, we will all have better appreciation for what “normal” is really like.

As you all return to your normal…please be mindful of our normal. Like many families with medically fragile loved ones…We’re stuck here for life.

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