Thursday, February 11, 2010


Tomorrow morning Jonah has his MRI. They are looking for some conditions that mimic autism and/or cause the same symptoms but also have other componants. His EEG is booked for March 12, so by the time we get back to the developmental paed on March 18 we will have our answers.

It's moving fast. For that I am grateful, we're not left languishing in a system we can't control. But I'm scared too. It feels like it's all getting out of control, going too fast.

I'm finding it hard to look at Jonah and remember what it was like to not know this, to not look at him and see Jonah and autism together. I want to go back a few weeks ago where I looked at him and saw only Jonah. I've already forgotten what that's like.


  1. Sending you hugs full of healing strength, so you can stay strong. It is so hard when someone you love has a label - my eldest grand-daughter has acquired brain injury - but I just try on focus on my love for her not her label. it is hard sometimes, and even harder for the parent. I wish there was a way I could take this away for you, if only I could. Hugs from Perth xxx

  2. Goodluck for today.

  3. I'm really sorry, again, Donna. An angst-ridden time and I really feel for you. I can only liken it to being in the NICU with Ella when they kept coming to us, day after day, with all these horrifying worst-case "but it could also be this" scenarios. It was sheer torture, and I sympathise as I know only too well the torn thoughts about looking at your child and remembering when you used to look at them and not know this diagnosis they have over their heads.

    My heart will be with you both today through the procedure. Good luck.

  4. Thank you. I just don't have the words to express how much your words of support mean to me. I'm at that stage where it's an effort just to remember to breath, there's not much left of me at the moment and I can't articulate how much this means to me at this time.

    I love you all and I really do feel your love and support.

    Thank you once again.