a light peeking through the clouds. feels like diamonds.

The quintessential “Corrigan” expression…a mixture of confusion, disdain and “Don’t even think about it”

********

Last week was tough.  There were more tantrums thrown in the last 7 days than in the last two months combined. There was a horrible diaper rash that refused to heal, bled terribly and led to fierce changing table battles that left us both in tears.  There was a semi-upsetting therapy consultation that ended with the scheduling of an autism specialist visit on August 9th.  There were 5 days that began at 3am.  There was an epic nighttime showdown that lasted 3 hours, 13 trips back to his bed and a huge vomit at midnight.  He began hitting when he was angry.  He tried biting Connor when he did not get his way.  He was exhausting.  Life, last week, was exhausting.

I found myself in tears frequently. Overwhelmed with the changes, none to the positive, that were happening under my watch. I felt as if I were losing control and I was confused. I didn’t know what precipitated the behavior changes, it seemed to come out of nowhere but all at once it was in my face.

Last week was a lot of work with little reward.

Much of parenting is.

Corrigan doesn’t make a lot of eye contact.  There are not a lot of shared smiles between Corrigan and anyone else. Oh, he smiles. He laughs. He plays. He is learning…but it is all done with quick glances and nothing long and meaningful.  I tell him over and over how much I love him but sometimes, quite honestly, it hurts to know that he doesn’t understand what that means. Corrigan does not hug.  He does not kiss. He does not snuggle. He does not crawl into your lap for long periods of time.  He is perpetual energy. He doesn’t have time to connect.

Saturday was a busy day.  Connor had his first soccer practice in the morning and I was shooting a wedding in the afternoon.  As I expected, Corrigan was awake and ready to go at 5am and nothing would convince him that Mommy needed a few extra hours of sleep so that she could do a good job as photographer. The morning was stressful.  He was upset that Daddy and Connor left and that he could not go with them.  He was turned upside down by their exit and his displeasure tinged the first third of our day.

Nearing noon, I found him playing quietly in my room, pretending to “read” a book on animals and I lay across the bed hoping to catch a 2 or 3 minute catnap.  I felt his weight on the bed near my feet and felt the quick slap of his little hands as he climbed up my legs to reach me.  He moved up to my head and played with my hair.

I rolled over and grabbed him playfully. We romped for several minutes and I was delighted at some real moments of eye contact as we tickled and flipped.  At one point, he landed in the crook of my arm and I felt him relax. I was ready to play some more but caught myself just before I slid my hand under his rib to play again.  I am so glad that I did.

He was breathing a little rapidly from our play and I could feel the sweaty heat coming from the top of his head. I barely breathed as I silently counted the minutes that he stayed still in my arms.  I could hardly believe that he was laying so close and staying so long.

After a few minutes, I began to sing “Amazing Grace” and stroke his forehead with my finger. With Corrigan, this often irritates him but I want him to know the comfort of gentle touches. To relax when rubbed, massaged and gently loved upon. I worried that the simple act of swishing back his hair would cause him to smack at me irritably and roll away but it felt right to keep trying.

I sang the same verse over and over. I made a mental note to memorize the other verses the next day but Corrigan did not care. I could see just his right eye and cheek…his body was fully turned towards the door but I could feel his stress slip away and soon enough I glanced down to see his lashes resting on his cheek.

He had fallen asleep, in a bed with me, for the very first time.

I know that it doesn’t seem like much but it felt like my birthday. My arm was asleep, I was no longer tired but, instead, kept hoping that Mark would get home from practice and see the miracle that was taking place in our bedroom. I knew that he would understand the importance of the moment.

Eventually, my breathing matched his and I fell asleep.  My last thoughts before drifting off were that I hoped that my left arm was not permanently damaged because I needed to hold a camera in a few hours!

That two hours with Corrigan erased the entirety of the previous hard days like nothing else could.  I had cried to Mark, not long ago, that it felt like all work and no payback.  Mark reminded me that Corrigan loved me in his own way. That maybe one day he will show me with hugs but, for now, his way is different.

His way is different. But his way is his own.  Something changed last Saturday. I truly believe that it was the first time that he trusted me. He has had a lifetime of pain in his 25 months. His therapists are leaning away from the idea that Corrigan has autistic tendencies (though they still want professional evaluations) but more that he suffers more from a Post Traumatic Stress-like reaction to everything that he has been through.  The nurses would say, after 8-10 needle sticks, each and every week…sometimes several times a day when he was sick and before we got his port put in his chest…that, “at least he won’t remember all of this.”  No, he will not remember it but it likely has formed his personality. He does not trust adults. He does not want to look them in the eye. He keeps moving so that they will not corner him. He will not allow himself to be cuddled because a long hug feels the same as being wrapped in a blanket, like a burrito, and held down by three nurses while someone jabbed at him with something sharp.

Corrigan just needs to learn to trust us.

And I think that Saturday was a breakthrough.  I have seen improvements since.  This very morning, at 4am, I was asleep in his room and he crawled up next to me and let me rub his feet and legs for two hours.  He did not go back to sleep but he let me touch him in a loving and therapeutic way while I sang that same single verse of Amazing Grace willingly, and happily, over and over.

We are making progress. It makes it all feel so worth it. It feels like a million bucks.

4 thoughts on “a light peeking through the clouds. feels like diamonds.

  1. Beautiful Mindy! I am so happy, that words cannot express! If I was there you would be getting a HUGE hug from me!!!! Enjoy your cuddles with Corrigan! Lots of OXOXOX for you and Corrigan!

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  2. sooooo happy for you…and corrigan!!!! i totally believe in PTSS in children who have experienced severe medical traumas when they are very small and even if they dont “remember” the exact incident they have have the sense of “non trust” and “frighten” or are combative and detached. (what a run on sentence!) i know our situations are different, but i can understand what you mean! i am going thru (and have been) some major “combative” and “control” issues with sophie. i know alot come from age…..but…..when my 2 1/2 year old says to me “im a doctor, im going to check you out…..i will hurt you….and then proceeds to attempt to jab things in my arms or down my throat……yes, i do definatley believe they are trying to deal with their emotions in their own little way! hang in there!!!! corrigan is so blessed to have you and mark as his parents. i will definatley pray for infinite patience for you and grace for you to see the “light” in the little things!!!!!

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