Our Loving Choice of Hermitude…

Confession: I am a illness-phobe. Not to be confused with germaphobe. The difference? A germaphobe hates germs. I hate germs that cause illness. Let me explain why…

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For the past six years, I have been the protector, defender, nourisher, nurturer, mama hen, mama bear of a little boy the medical community has diagnosed with a terminal illness. As well as his beautiful, healthy and by no small miracle with no disease of her own, little sister. My little boy is immunochompromised (def: having an impaired/weak immune system). He dwells in the valley of the shadow of death by default because of this illness, and we as his family dwell with him. Our light is from our Heavenly Father and it comes from within, but we dwell in this shadow. It’s a fact. There are certain things about this disease that we have no control over. A few that we do…or at least tell ourselves we do. If and when our sweet son receives his healing and it comes from going to heaven, we hope that it will not be from anything that we could wish we did differently or have to live with regrets or blame. We make what some who cannot understand our life might call “ridiculous” sacrifices and measures, to keep our family well and healthy so we don’t get him sick. A couple sneak through each year despite our best efforts, but because I work SO hard to keep us healthy on the inside, we have stronger defenses and heal quickly, and because I’ve leaned ways to be drastic and isolate the sick person and their germs (usually meaning ALOT of extra work), we seem to keep it from him. It’s necessary and it’s a labor of love. Each year from the time school starts until it ends, we practice almost total “social abstinence”. Does it suck? Big time. Is it fair to any of us? Not a bit. But if life was “fair” we would have never learned what Alper’s Disease even means. Life is NOT fair, and it’s something I want my daughter to understand early on. I also want her to learn what it means to lay down your life for another, even if it’s just your social life. I want her to think about how her decisions affect others that sometimes she may not even know. I want her to understand that God and love at the core of a home can overcome even many years of hardship. The upside is that this is all she has ever known. Someday, possibly, she will know more freedom. Her social life will be brimming and active, and she may even be fine suffering through illnesses more often and be very much okay with it. But her heart will ache because her big brother is gone.


Our life may be isolated and boring and even lonely at times, but our home is full of peace, joy, laughter, love, and hope in a Jesus that experienced loneliness during His time here on earth, even surrounded by those that had pledged their undying love to Him.

No fear. No regrets. No blame.

I don’t at all judge parents who accept illness as just “a part of life”, and lovingly nurse their little ones back to health, but I don’t have the luxury. Mine may not make it back to health and I just can’t live with that.

Praying protection over all the other fragile children warriors and wisdom for their mom’s and dad’s, as well as understanding, compassion and thoughtfulness from those who want to hang on to their entitlement to social activity and decide to “spread the joy”…



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