Great Expectations, part 2--Teach your children well

Yesterday, I was excited to see familiar faces at Shriners.  Several tables were pulled together in the cafeteria, teeming with families who came to arthrogryposis through adoption.  The fellowship of, "Ohmygosh, I KNOW!  We get that at our house, too!" is a mighty one.  So much talk centered on adoption issues with children in various stages of treatment.  It was so energizing...and challenging...and saddening...all at once.  

Treating and managing AMC, arthrogryposis multiplex congenita, is a marathon.  The rude awakening is the day you and your child realize that the miracle of walking does not signal the end of the pain and surgery.  You each have to find ways to pace yourself, and as always, adoption becomes a big variable.

In our first year of AMC treatment, here are the things I did not expect to have to teach our adolescent:

--It is okay to cry out when the doctor hurts you.  It is okay to say, "Stop."  

--It is okay to cry or tell me that you hurt.  I want to know.  I want to take care of you.

--Wake me if you hurt or need to toilet at night.  I will come.  I want to take care of you.

--It is ok to wake me up at night.  I will not be angry.

--It is ok if you have an accident at night.  I will not be angry.

--It is ok to throw up.  I will not be angry.

--It is ok to tell the doctor you hurt.  He will not be angry.  

--It is ok to be afraid. 

--Even if you don't walk, I still love you.

--Even if you have a crooked body, you are beautiful.   

--It is ok to be angry with me.  

--If you fight when I carry you, you will fall and get hurt.

--If you fight when I carry you, I still love you.

--It is not okay to hit me.

--If your body hurts, I still love you.

--Your wheelchair is not the reason I don't spank you.

--You are fearfully and wonderfully made.

I never expected to have to give an adolescent child permission to hurt.  We are working on communicating pain using the 1-10 scale, and he seems embarrassed to admit to anything over 5, as though he has failed.  He tries to give the doctor the answer he thinks the doctor wants.  We practice making lists of questions for the doctor, and we ask them, even if I already know the answer.  I outsource walking and exercise battles to our PT, because then his anger and pain don't become baggage or weapons in our relationship.  I resist fury and choose to be glad when he admits, "I don't believe you," because then I at least know where I stand with him, and he has talked about it and told me the truth without fear.  Each facet of that last sentence represents an emotional milestone. 

I never expected to struggle over whether a wet bed was an act of revenge, a nightmare, an attempt to control at least some aspect of one's body, anxiety, or lack of sensation from anesthesia.  Suddenly, I find myself back in a position of reminding my 6th-grader to toilet every blessed few hours--a thing I haven't had to do since the first few months after we got home, when he was still adjusting to not having toilet times dictated.  Is he trying to make me be responsible for his toileting, or is he fighting his own body?  

There are other moms in this boat.  One did not expect her daughter to still need permission to say she hurt after two years being home.  Another did not expect her son to be surprised at her presence when he was in hospital--he thought he was a bad kid in China, because the "good kids" got visits in hospital.  Another was completely surprised when she heard, "We wet the bed at night--after it got dark, nobody was there to hear us call for help."  

So many of our children are model patients, but the reasons are sad, perhaps tragic.  The high pain thresholds are from years of learning that nobody will come and tears are futile.  The fear of beatings for vomiting, wetting, or crying are real fears, because many of our children have seen and felt terrible things.  The avoidance of eye contact is because they've heard they are worthless, again and again.  

Each time we cycle through the same battles, I am reminded that the survival instinct is one with deep and primal roots, and the child who has lived starvation and poverty and misery, the child who has lived without hope of love or medicine or lack of pain is a child who has years of unlearning to do.  Each time we cycle, we are a little farther than the time before, and we are a little closer to whole.  I am thankful, in ways I did not expect, for the power of Love to uphold and restore and heal.