This virus is lethal to our children. Let me say that again, this virus could likely KILL our medically fragile children if they get it. This is not a matter of faith or fear, this is a biological fact that we are given by the lot which God has allowed into our lives. We have faced life or death situations with our little heart warrior, Jack, in the past and we made it through victoriously because we took faith-filled action to give him a fighting chance.
By faith, I stay home with my family. By faith, I lysol every single item that comes into my home. By faith, I say no to every single invitation I have received. By faith, I love my extended family from a distance and hope to see them next year. By faith, I will keep all of my children at home and in tight isolation for the next school year. I trust that God will see us through this in whatever way he sees fit, because, by faith, I am using my God-given brain to take action and protect my Jack with a fragile heart.
Some judge us. They say we are acting out of fear or lack of faith.
That kind of blather comes from a profound misunderstanding of the real kind of faith that we have had tested by fire every single day of our lives because we are special needs moms.
The following piece was written by a mother of a severely autistic child and other children with inhibiting medical conditions. She is looking at a dangerous year ahead of her. Her position as God-appointed guard over the life of her children is sacred.
There has been a lot of misunderstandings about those of us who have chosen to be extra cautious during this whole Covid crisis. I very quickly want to address a few aspects of this that I don’t think are obvious to those outside our strange little circles.
First of all, it has nothing to do with “not trusting God” or “fearing death”. Those of us with kids with critical medical issues, face the possibility of death constantly with our kids. Just like soldiers in combat or first responders we are, day in and day out, fighting in the very face of death. Only the people that we are trying to protect is flesh of our flesh and the very core of our hearts. It has been proven that moms of disabled children have the same stress levels as combat veterans and there is a whole kind of ptsd that goes along with that that all of us struggle with as a fun little side dish to all we do. You may think I am exaggerating the deadlines of what our kids are going through, but I am not. With my autistic daughter, for example, if we don’t lock down every exit or be vigilant she could, at any moment, elope and would run straight off a cliff, into traffic, or into any available body of water without a seconds hesitation, especially if her flight response is activated where she is panicking and can’t hear anything and can only run. (Even if you do catch her during these moments she will kick and bite and punch and scratch and rip out your hair and anything else to get away because of panic) She also won’t eat or drink at all without encouragement and we spend all day every day fighting to keep her hydrated and fed. Even with all this work she is still constantly hovering on the edge of parotitis (which is a horrible side effect infection much like mumps) food aversion is constantly changing and a fight to keep her on the size charts at all. If she does get sick with one of these infections or a random fever from all the germs she can’t avoid because of her inability to wash correctly or preform normal health practices or, God forbid, something worse like the flu or this Covid virus it is all but impossible to give her any medicine at all. Plus she starts stemming (running, jumping, spinning) to keep her adrenaline up and avoid pain (very dangerous when you are sick) she stops eating and drinking entirely and can’t rest at all. If we can’t get it under control she will have to be in the hospital sedated and on IV medicine. The problem with this is that she has adverse reactions to being sedated and her blood pressure and heart rate jump up when she is sleeping. She can’t tell when she is hot or cold hungry or tired. She hides when she chokes, jumps off high places, and a whole bunch of other very dangerous acts all day and night of her life. These are just a couple of the very deadly challenges Betsy faces every minute of every day and we are constantly pulling her back from potentially deadly situations.
I must also mention another of my daughters, who has to use the strongest sleep machine in existence just to breathe at night, and is permanently 80-90% nasally clogged. She fights against lack of sleep and oxygen and all the huge affects that has on your body and immune system all day every day. And then there is my son, who survives mostly on protein shakes and force of will. Or myself with scarred up veins, partially functioning kidneys and permanent antibiotics to keep back the infections that are constantly trying to overtake me.
We are not exactly a healthy family.
But we take this all in stride and trust God as he brings us through these struggles to a wonderful life where we thrive despite these ongoing battles. For other medical families in our life, I know there are tons of similar but different ways they strive daily to keep their children surviving and thriving. So when the experts on our children’s conditions say to do something like keep them out of public until a vaccine is available, we don’t bat an eyelash at following those orders, just like we trust them and follow all of the other orders they give us to help keep our children safe the rest of time.
It is insulting and offensive when others cannot understand or respect these decisions. Or when people accuse us of living in fear not “trusting God”. We trust Him! We survive by trusting in all the ways that He provides safe paths beneath our feet. It is just that a lot of these paths are paved by wise decisions that He leads us to, or specialist who help us maneuver these trials as the hands and feet of God in our lives. Death isn’t something we don’t understand or “fear”. It is a constant companion and enemy that we are actively fighting every day as God has called us to do. By condemning the way that he has led us to fight people are belittling that calling and all that we are pouring ourselves out to do for our kids and under God’s guidance.
I am so glad that this brave and advocating mother allowed me to share her heart today. If you are a friend or family to someone who has chosen to be extremely cautious during … whatever you want to call this pandemic (please don’t say unprecedented times one more time or I will vomit in my mouth) … then I beg you to be the most awesome champion of those people that you can be. NEVER moralize this situation. Unless you have walked in the valley of the shadow of death with one or more of your children, you really aren’t invited into the dialogue of what we are to do with our families at this time. Bring flowers to porches, messages of uncomplicated love, and chocolate (obviously) – leave your assessment of our faith level in the garbage where it belongs.
If you like this message, please give this post a share to others who need to know what it’s like on the other side. If you don’t like it, too bad. This is a blog; a low-brow writing form which is nothing better than an internet diary so … you know, just deal.