When my Son is Sick
I live in a complete state of exhaustion all the time and it has been like this for five and a half years. My sleep patterns are irregular and often interrupted. I can't exactly tell you how it is I manage to make it through each day without crashing my car or melting into a puddle of tears.
I run an ICU at home for my son Levi who was born with severe brain damage. The closest example I can give is like that of a mother of a newborn, where 24/7 care is required day after day, month after month, except your child never graduates from being a newborn. His needs are 100% dependency for everything, and then some. This has become my normal and on most days there is just enough wind in my sails to get up and keep trying. Trying to bring him a life of love, comfort, and joy.
But then there are days like today, when my son is sick, in pain, and I can't determine how or why. Nothing in my toolbox of medicines, therapies, natural remedies, or monitoring can give me any more information than this. He is miserable and nothing I attempt to do to help him is of any relief.
This is when my body feels most heavy, my heart most deflated, my spirit most sad and grieving. It is a struggle to go to bed at night because I fear the worst: that my sleep will be interrupted at the news of his further decline in health or his passing. This reality is an ever-present one in my life, and it weighs most heavily on nights like tonight. When he has been in pain and misery for a full 24hrs with no explanation and little relief.
How do I begin to describe to you how debilitating these sensations are in my body? How it is that they never get resolved. Rather they just pass from background to foreground to background again, should his health improve as mysteriously as it declined. With each pass the sensations become further compounded, for the history of each illness resonates in my body as much as it does in his.
It is possible that in these moments I teeter on the edge of deep depression. I have worked so hard everyday to give my son life, to give him the abundant life that Christ gave me. I have known from the beginning that his life will be shortened. In fact, being 5 years old is it's own miracle. And yet for him to pass suddenly from an illness is on some level, I feel, I fear, to fail him. Especially if I were to be sleeping in that moment.
It is 1:11am and I must find a way to sleep while my son is cared for by a trusted nurse. I must find a way for the wind to return to my sails by morning so that I have the consciousness to navigate his needs and make the hard decisions that the next day will bring if his night doesn't bring relief.
Lord have mercy on us all.
