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Taking it Personally

November 9, 2011

Two wise moms years ahead of me parenting children on the FASD spectrum, in the past week, have offered the same advice: Quit taking it personally; Focus on how it affects her, not how it affects you.

That advice has been a bright light cutting through fog.

It is a common human problem, isn’t it? When we’re living in fog, it becomes our new normal and we cease seeing it.

*****

I don’t think I’ve appreciated the God-given ability to reflect quite as much as I have in the past few months. It is a common-grace gift shared by many neuro-typical humans; I’m not suggesting I have it in gifted proportions. Just that I’m newly aware of the grace it is: to be able to take stock, to consider, to evaluate. Not every member of our family has ready access to this function –some due to young age and others due to disability. So I do the reflecting for several of us.

*****

Reflecting of the advice to stop taking Hope’s behavior personally, the challenge to separate how it affects her from how it affects me, I was thrown upon a tough question: if it is about her, why has it felt increasingly hard on the rest of us the past few years? What were we doing in that earlier, easier period that allowed us to distance ourselves from Hope’s behavior and assess it for what it was –evidence of brain damage to be dealt with objectively, not be taken personally?

What changed?

When I began a mental list, I realized the answer is: quite a lot. After turning our parenting inside out to approach Hope from the standpoint of grace rather that judgment and correction, her three year old year was –comparatively speaking –easy. So much so that, still in ignorance of the pendulum swings of FASD (we had no diagnosis), we decided to adopt again.

Don’t laugh now. But all along we had expected to become the parents of a child with higher levels of special needs. We didn’t really have a clue that God had already answered our prayer with Hope. So we adopted Joy.

Joy is one of the most amazing blessings God has given our family. But we did not know she had quadriplegia. So in a human sense, we were not prepared for how her disability would impact our family. When we accepted her referral, we were at the end of our mortgage and planned to roll that expense over into private school tuition for the girls. I was in the middle of a book project and planned to get back to work on it after Joy settled in.

But we plunged into the world of home and private therapy, of adaptive equipment, therapists and PCAs in our home, a home we learned would only be accessible to Joy while we could still carry her. So we decided to home school Mercy and Hope and to save toward the purchase of different house.

That much-better year she was three, Hope also began attending preschool. Preschool carried over into the year she was four (the year Joy came home) which gave me a regular break from high-intesity parenting and freed me to work with Joy.

The year Hope turned five, we started home school and I contracted the book with a publisher, launching me onto a research and writing schedule that I, by then, welcomed as my respite  from adding “teacher” to “wife and mother.”

That year I also began planning our first return visit to Korea, which reunited Joy with her twin sister, Amy; reunited each of the girls with their foster families; and introduced us to Amy’s family. Those reunions alone were an emotional rollercoaster.

Coming home launched our quest for a diagnosis for Hope, and the past year of follow-up visits.

Early this year, the day after I turned in the final manuscript for the book, I began gathering information about real estate and accessibility, projecting we would move during the summer of 2012. Instead, as you know, the right house was the first one God showed us and we moved into it three weeks ago.

*****

The last time our family had a normal year  was the year Hope was three. I’m thinking of “normal” here in the sense of having margin to balance the weight of life on the other side of the scale. Not largesse. Not leisure. Just enough mental and emotional and spiritual space that I could be fully present as “mom” as much as necessary.

I did not appreciate then how different disabilities can be. Joy’s cerebral palsy and Hope’s FASD both result from permanent brain damage. But Joy’s needs are predictable. Hope’s are not.

*****

Remember Diane Malbin’s concept of modifying the environment to accommodate the unique needs of kids with FASD? (I blogged about it here.) It is time to modify our environment. We now have the basic template for what will become a house fully accessible to Joy as a wheelchair user. And as our family life comes back together in this new place, I’ve realized I need to renovate the mommy environment to better accommodate Hope.

That’s why these past few years have felt tougher.

I am not discounting the possibility that as Hope matures, her increasing physical size (among other things) makes coping with her FASD behaviors more challenging. That may very well be true. But I can’t stop her from growing up.

But I can do something about me: restore and protect enough margin that I can more often follow that golden Q-tip: Quit taking take it personally. Margin that acts like a thicker skin between me and Hope’s behaviors so I can view them rightly: as how FASD affects her instead of how she affects me.

*****

I can excuse our ignorance almost four years ago –thinking that once we figured out a parenting approach for Hope we could get back to the other things on our family agenda –another adoption, my book, schooling.

But what good is the gift of reflection if I don’t use it to consider our choices? I’m beginning to know FASD territory now. I understand now that I only punish myself and those who depend on me if I do not modify the unique niche I inhabit as “mother” to better accommodate the demands FASD places on our family. Conversely I bless myself and the rest of the family to the extent I prioritize the priorities God has put front of me.

That’s the light piercing the fog. What if Jesus had taken it personally instead of laying down his life?

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One Comment leave one →
  1. November 16, 2011 9:51 am

    The predictable nature of Joy’s disability versus Hope’s…I get that. And the biggest difference dealing with more profound (obvious probably describes it better) is that, for the most part, I don’t take it personally. I don’t beat myself up because Aaron can’t walk or talk..I accept and love him where he is at and work to help him grow stronger and thrive..
    That is what makes FASD so different for me..it is so hard not to take personally..it is so hard not to feel like if we did more or did more right..they would just listen and do what was right!

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