He walked into the bedroom having already been up for hours and sat beside me as I lay still refusing to move-still in bed, covering my head with the bed sheets.
“Come on” he said gently leading me towards the computer ”I can tell you need to write this out”.
God bless my husband. He is a man of few words but he knew that his hugs weren’t going to be enough to cut it this morning. He knew that I needed to pray and to write until I felt right.
It was a really rough night for all of us last night. We had the annual school church service and for us – it wasn’t exactly fun. The service was great but Harley – Erm, not so much. I went prepared with the iPad, iPhone, Chewing gum, Chewy tubes, Headphones, Earphones and as much strength as I could muster but it wasn’t enough.
But I must say that Harley did a magnificent job of holding it in for the most part. I mean, I did have to take him outside twice to escape and he sat on the floor with tears streaming down his face while rocking and head banging my knee, but to the untrained eye….he didn’t seem too out of sorts. He just looked like he didn’t want to be there.
The car ride home was a completely different story though: It was a kicking, screaming, head-banging, sibling-punching, hair-pulling, scratching disaster.
“Church isn’t on a Saturday night Mum, it’s on a SUNDAY” he screamed at me while thumping his fist into the back of Ella’s seat.
My husband turned to me and asked: “It is wrong to just want a little bit of normal? Just once? Is it bad that I am feeling really ripped off right now? I just want to be a normal family. This completely sucks”
“Not at all” I replied. “I wish that a lot, and right now I freaking HATE autism”
We both froze when a little voice in the backseat piped up: “But Mummy, I can’t help having autism, you said that God made me this way and that I am special”
I was gutted. I swear my heart stopped beating and I wanted to jump out of the moving car. I deserved to be hurt. Had I just undone years of building him up and months of teaching him who he is in Christ? Had I permanently damaged his sense of self-worth and made him doubt his value and place in society?
What had I just done? Who says that in front of their child who is already in a really bad place? I felt like the antithesis of a good mother.
I turned around in my seat and looked at my hurt little boy and said: “Honey, I hate autism, but not you. I hate it because it makes you sad and it makes things hard for you and I hate seeing you hurting and not being able to help. But I don’t hate you. I love you to the moon and back, you know that don’t you?”
He gave me a tiny smile and nodded.
Right then I wanted someone to punch me. I deserved to feel the physical pain that my child was feeling emotionally. I absolutely hated myself for what I’d done. *I am supposed to be his safe place. The one he can run to when he’s frightened or confused. And furthermore, I knew I was kidding myself. I hated autism more because of the sheer inconvenience and discomfort that it caused our family than anything else. It was a selfish reason for hating it and I knew it.
But I, like my husband just wanted to experience normal for once in our life. Just one night of not having to struggle, not having to walk on egg shells and not having to feel so isolated and mis-understood.
Is that really so bad? I’m not even sure anymore.
And as I sit here writing out my emotions and my inner turmoil, God is speaking to me ever so gently.
He has taken my attention back to the line I typed only five short minutes ago:
* I am supposed to be his safe place. The one he can run to when he’s frightened or confused…
But God in His infinite mercy reminded me that HE is in fact the safe place, HE is the shelter in which Harley can hide and find comfort and that *I* am only human.
It’s only natural to have bad days, bad weeks and bad months but this does not constitute a bad life!
Wow. Talk about perspective.
Psalm 91:1 He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.