Fumbling In The Dark.

Ever single parent three children for 20 years and feel you’re doing a somewhat stellar job with the knowledge and resources that you have, only to have the proverbial carpet pulled out from under you and in order to survive, completely flip the script in its tangible entirety? Me neither, until now. I shall explain.

My twin daughters have an undiagnosed health condition involving a very weak immune system and hypothyroidism. We’ve been blessed to have a wide assortment of doctors but unfortunately they are unfamiliar with what the situation really is and therefore makes this whole problem way more problematic and shaded than it already was.

At their monthly intravenous treatment at the childrens hospital yesterday, it was brought up that as of 6 or 8 months ago, my girls have been deteriorating cognitively. This has been at the route of several blog posts I have recently penned, voicing my frustration. Anyway, the doctor relayed to us that brain deterioration may very well be part of their immune degeneracy. In straight up English, my twin teenage daughters, with IQs of 50 are growing more and more mentally spacey..and that scares and saddens me greatly.

In the downfall these past few months, tasks that were once manageable and doable are now quickly forgotten. I have become quite angered with the response of “I forgot” so much that we’ve instigated a ‘forget jar’ to which the offender deposits 50 cents or a dollar each forgetful incident. Above that, I have yelled, I have disciplined and I have removed myself from the premises. After learning of yesterday’s news, it’s time I reinvent my wheel.

It’s as though I need to overhaul my entire response mechanism. Getting upset/annoyed/losing it/taking privileges away..none of it does anything in the realm of teaching. I need to rewire my thinking and completely lower my expectations. None of this will be easy in the slightest.

Do I sit here and whine? I kinda wanna. But just like the day my son was born, I choose to ride this out. I’m all in. We’ve saved each other’s lives and there’s so much more of our story to be written. They are gifts, not interference to my life. Not before and certainly not now.

It’s scary though, this living in the unknown but I guess a metaphor for everybody’s life, not just ours. How degenerative exactly is this condition? Will they continue to deteriorate to the mental capacity of toddlers? In bracing for the future, talk of a group home and government funding are on the table. But with this new knowledge, will I have to quit my day job at some point to be with them 24/7? I will stay positive but I mean these queries are real and are right at the surface.

In the grand scheme of life, all will be taken care of and things will work out in the way they are supposed to. A quick lesson in fear but soon to be filed under the ‘one day at a time’ slot. It’s truly all a person can do.

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