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>Kari’s Picture Says it All

May 19, 2011

>If you haven’t already read Kari’s post for today Definitely Not Stable, please do. Besides her wise words, the Lego picture is a perfect visual of precarious equilbrium –and how quickly it can fall apart.

If you hold your breath, you can imagine that the Lego structure on the right side of the picture was momentarily erect. But it probably took little more than a sigh or a small bump on the table to break Bean’s creation because structurally,  it was inherently unstable.

I’m used to thinking of Hope’s neurology that way. But as crazy as it seems, I’ve never considered how true it is for Joy. I say “crazy” because anyone asked, given a choice of Joy or Hope, which child looks brain damaged, everyone would pick Joy. But Joy’s marked delays have never included a behavioral component. Because she has been so emotionally sturdy, I haven’t spent any time considering that Joy’s equilibrium might be a fragile thing.

After all, she has endured so much: separation from her birth mother and her twin sister; two months in an NICU; a month in a baby hospital; adoption into a foreign culture out of nearly a year of foster care during which it probably never occurred to her that her wonderful foster family and culture might not be her family and culture forever. She sailed through these transitions with every indication of being one of those kids with a “resilient” personality who are said to rebound from adversity.

The surgery in March broke our baby.

Joy’s bones and incisions are healing fine. But her heart is still trapped in a body cast. She has no emotional margin. She is afraid of things that did not phase her before.  She refuses to attempt things she could easily do before surgery. She views even therapists she liked before surgery as threatening. She cries and will not be consoled if we even ask her to try. Outside our home, where during the day she is her familiar happy self, she has no emotional margin.

Surgery has betrayed her “emotionally sturdy” facade. We didn’t understand how precarious her equilibrium was. We didn’t just blow on her Lego tower or bump the table on which it rested. We stomped on it.

Now we’re in new territory: trauma and post-trauma recovery.

At the moment, I’m angry. I’m angry at myself that it never occurred to me that this surgery might have been considered elective. (After all, Joy is never going to walk well and will always depend on a wheelchair. Once they are old enough to have a voice in the matter, most kids with her level of functioning abandon their limited ability to walk in favor of a power chair. So how important was it to intervene surgically to improve her ability to do something she will probably not choose to do?)

And I’m angry that while they warned us of surgical risks like infection, not a soul among the many professionals who were involved in counseling us regarding the surgery, not a sentence in any of the materials they urged us to read mentioned the possibility that while Joy might emerge with straighter leg bones, she might also acquire post traumatic stress syndrome.

I don’t think I’m crazy in thinking it is PTSD because one evening while we were still at Gillette, one of Joy’s nurses and I were talking about the nurse’s plans for graduate school. She said her experience nursing on the post-surgical ward led her to want to research PTSD in kids with chronic health conditions who faced multiple surgeries.

So, my experienced mom friends, besides pray, what do I do to help Joy?

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