Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?

At a loss for words


Well.  I am just speechless.  After all that we’ve been through with our daughter who has Lennox-Gastaut Syndrome, it amazes me that what has (temporarily) derailed me is the “label” that the school is using for my son (who is 6) – we had IEP meetings for both children this week and they said that they consider him on the autism spectrum.

Amazing to me that I’ve done what I’ve needed to, mostly, facing her medical issues but this…this just really pushed me under.  It has taken three days for me to get a grip on myself and stop feeling so sad.  I don’t know why this affected me so badly.  Perhaps it is just that this is the latest in a long string of issues.  That my body is well and truly exhausted.

We also found out that our daughter may have a second, rare syndrome – Rett Syndrome.  That too has been depressing, though I realize that we just had the blood work done, with the doctor’s request for genetic testing for Rett.

Things really have been coming at us thick and fast over the past two weeks.  I am just so tired.


2 thoughts on “At a loss for words

  1. I’m sorry to read that. It sounds like you have been through so much. Let yourself have some sadness. Things keep changing course for you and you are adjusting. It can’t be easy, no matter how strong you are.
    I have several boys in my family that are on the spectrum at different levels and are all very much thriving and amazing successful kids.
    I hope you get good news from here on out. Big hugs.


  2. Thank you so much for your response. I think that’s what my body is trying to tell me too – I have absolutely no energy right now to do anything beyond the necessary, so I am slowing down and resting when I can. I love my children and this certainly won’t change it…but wow. I’m trying to let go of the worry, since it won’t change anything, and just face each day as it comes. LOL, that’s hard enough some days.

    Hugs to you as well – thank you for the understanding and encouragement!


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