“I don’t know, I don’t know where I’m a gonna go when the volcano blow”

I was recently blessed to go out with a Facebook friend and her son to lunch. Although we grew up in the same small town, Tina and I ran in different circles for many years. Then as our children were born and started growing (and getting diagnoses), we started rubbing elbows more and more. It was finally time to just spend some time talking (over food of course).

I remember the first time I saw Tina with her son Logan. A denominational church was doing a special service for parents with special needs children. My mom and I had taken all three of my angels. I watched Tina walk in, hand carrying Logan and a diaper bag and an oxygen tank. I must have done the whole “tired-mom-with-spasming-brain” stare, because she walked over and asked a few questions to determine that we had indeed gone to the same school.

As she spoke, she shared with me that Logan was born with a chromosomal abnormality (Trisomy 13). It’s rather nasty issue when you read about it. The doctors had never expected him to survive beyond a few days after birth. The thing that struck me most was her gratitude for Logan’s life and her devotion to her son.

We kept in touch through Facebook over the years. Still living, Logan continues to be Tina’s pride and joy. He’s also her biggest challenge.

Like most women in the band of parents of special angels, lunch isn’t just lunch for us. It’s a rare time to connect with people who, although they don’t walk in our shoes specifically, at a high-level understand all the issues we face, the complexities we are always trying to wrap our minds around, the fears we have about what happens when we’re gone, and the generally different perspectives we have on life about success and the important things and living.

I wish Tina’s life had the low-level of constant chaos mine has. I’m just worrying about affording special diets and preparing kids for life without me and finding ways to “encourage” mine to accept responsibility. Unfortunately, she’s living a life characterized by a whirlpool in a whirlwind about to be hit by a tsunami while a tropical volcano rumbles to explode.

  • While I have the responsibility of trying to teach my children to communicate in a socially appropriate manner, Tina has to try to interpret the non-verbal gestures of a child who makes few vocalizations.
  • While I try to help my kids figure out what jobs to do and what life might be like on their own, Tina has to worry about what kind of setting to place Logan in when she’s gone–group home versus nursing home versus something else no one is yet willing to discuss because Logan’s not yet 18.
  • While I’m trying to get my kids to eat some of the new recipes, Tina is trying to follow midnight feedings that could cause sudden health emergencies, keep Logan from eating things he shouldn’t, and keep Logan from pulling out a GI tube.
  • While I am getting stronger on my diet and doing some more physical activity, Tina is trying to just get her body chemistry to cooperate a little longer to provide another decade of care for Logan.

In the midst of this maelstrom, her insurance company for Logan decides he doesn’t really need overnight nursing supervision anymore. Tina is fully competent for running his overnight feeds. Like any good special angel’s mom, she appealed citing the frequency Logan has issues with his feed, requiring emergency care at a hospital over two hours away; she cited her own health issues requiring overnight medications that ensure she couldn’t operate a remote control, let alone a motor vehicle; she even got tons of therapists, doctors, and others working with her and Logan to write letters appealing the decision. The appeal was denied yet again.

As Tina’s sighing and describing lawyering up and all that entails, I have the following going on in my head (yeah, listening skills aren’t my strong suit):

  • Lyrics to Jimmy Buffet’s “Volcano” are playing in my head
  • I hear the words (including tone and cadence) of certain leaders in our nation promising us Obama’s health care plan wouldn’t change a thing, we could keep our insurance, and we’d all be happy
  • I have the pictures of the Holocaust concentration camps of the mentally ill and intellectually disabled going through my head like the old slideshows

In a way, I feel bad for Tina. I know that only prayer (God of Abraham, Isaac, and Jacob please) will change anything for her. Yet, I know she joins countless other parents fighting and scrapping and clawing with insurance companies, and the numbers seem to be increasing since the beginning of the year.

I wish I could wave a magick wand and make it all right for Tina and Logan and all the other parents suffering through similar things. The reality is there are no easy answers. We in the band of parents of special angels have to work, not only for our kids, but also to change a society woefully off course.

We have to fight the attitude that a person’s worth is measured by his or her portfolio instead of the joy he or she brings or the lessons he or she teaches us.

We have to stand guard in a society that wants to quickly dispose of a difficult situation without discussion and through courage and humor and intelligent, emotionless discourse demonstrate that the best lessons in life are the ones you have to work to understand, the ones that threaten to unravel the very fiber of who you are as a person, the ones that rock your world and leave you looking for stability.

We have to recognize that we are not islands…not a one of us can stand alone. We have to learn to band together and work together and speak for each other.  In the words of the esteemed Benjamin Franklin, “We must, indeed, all hang together, or most assuredly we shall all hang separately.

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