Our Beautiful Boy

Cherry Blossoms PL

My PANDAS journals. The big pink one is mostly conversations with and questions for doctors. I am unhealthily attached to the little blue one, it goes everywhere. And I love its cover! We went and saw cherry blossoms last Friday. That outing was a big deal! It was a little rough but we had some fun moments like this one so now I’m carrying around the photo for when I need a pick me up.

We are doing better. I’d like to write a timeline but can’t seem to get to it, I can’t imagine anyone understanding when I tell you the joy my husband and I felt when our son ate at a restaurant with us yesterday. Just a couple of weeks ago, he wouldn’t go outside or feed himself.

It has kind of felt like having a new member of the family. He couldn’t eat or go to sleep on his own and would not be left alone for a minute. He followed me through the house doing baby talk and asking to be carried. He wouldn’t dress himself or go to the bathroom on his own. Forget about personal hygiene or social graces (his and mine). Sometimes he grunted at us, other times he yelled and threw things and flipped all the furniture.

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It’s hard to believe this was only 2 weeks ago.

When things were at their absolute worse and I wasn’t sure what would come next, I held him like his own ‘mama’ straight-jacket with my arms around him, his hands tucked in mine so he couldn’t scratch me and my head tucked away so his skull wouldn’t smash my face.

I cried all the time (often when I knew I was supposed to be the strong mama for him). I was panicked and grieving. I’ve buried loved ones that I still ache for, but this was harder. Maybe the helplessness I felt? He was right there and I couldn’t see him or reach him. He wasn’t coming back like everyone said he would. I went to therapy. One week my husband stayed home to help out for two days and then wondered if he should be looking for his own Psychologist. Our sweet 4-year-old would look at me and say, “I’m scared” before scampering off to another room by herself. Elfie, our little dog, couldn’t take the yelling anymore and ran away (we found her).

When he had been on antibiotics for five weeks, things were so bad I spoke with his doctor in tears one night and we discussed our options. That week, I begged everyone I talked to for help because I didn’t know what to do with his rages and they were escalating. I had never seen someone behave the way he did.

It is as if a very volatile mental patient was dropped in your family and you are supposed to take care of them. Anything you think you know about how your family life works and how to parent your children, does not apply. And by the way, it’s someone you love very, very much. So you’re as scared as you’ve ever been and the possibility that this is the new reality fills you with grief.

So, that’s what it was like.

But now it’s better and he makes leaps and bounds each day. There are setbacks and bad moments, but overall I can’t believe how fast he is coming back. He’s fun and energetic and his personality is showing much of the time! My husband and I are a bit shell-shocked and text each other things like ‘Eating!!!!!!!!!’ or ‘fork and hands!!!!’ as we delight in the ordinary.

And I have to say, it really is delightful.

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The cover of my journal. This is where I keep track of meals, medicines, activities, and give the day a thumbs up or down. I have to have it, it’s like a security blanket.

 

1 Comment on Our Beautiful Boy

  1. Missy
    April 16, 2015 at 1:13 pm (2 years ago)

    Battles are won with the small victories. Never give up, find the happy moments and know you are an amazing woman, mom, wife, daughter and friend who is only human.

    Reply

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