The genetic neurologist gently told me to stop looking for a name for whatever is the cause of Joe and
Christine's delays. He says even if we find a name to put on it, it
won't change the treatment or outcome. While I understand what he is
saying, it is not what I wanted to hear. I was a mess the whole rest of
the day... maybe even a little still. I don't know how I am supposed
to be ok with all this. What am I supposed to do as a mom? Should I
run myself and my family ragged searching for a name or a fix that may
or may not be out there? Am I a bad mother if I do stop looking for
answers? Its all exhausting. I don't know what to do or think
sometimes.
Otherwise... we are seeing some progress with Joe's therapies lately. I had a great parent teacher meeting with his Life Skills Kindergarten teacher. He is walking at school in a Kidwalk without help and also in a posterior walker with some assistance (see video below). He is using some communication devices to make choices at school and at home. In the video above Joe is using a communication device to play Twister with the boys. Its very exciting!
I often have days when this life is overwhelming but somehow I manage to remind myself that God knows what He is doing. And someday He'll answer all my many questions. But today is not that day. So I try to keep moving forward the best I can and take things one day at a time.
Psalm 32:8 “I will instruct you and teach you in the way you should go; I will counsel you and watch over you.” (NIV)
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