How to manage the fear? We’re going forward in our quest for
a diagnosis for our Apple Doodle girl. She has the sweetest smile and the most
infectious giggle and exuberant laugh. She’s been getting physical therapy since
she was 3 months old. Since then we have added occupational and speech
therapies. This week we went back to neurology. I think she was under 6 months
old the last time we went there. I expected that he’d order an MRI. I did not
expect him to say, “Yup, definitely have some motor apraxia going on.” You
know, but you don’t REALLY know.
Except now we do know, sort of. Now we need an MRI. For the next couple weeks I’m
going to be scared sh&tless.
After he said “apraxia” I stopped understanding the neuro.
Suddenly he sounded remarkably like Charlie Brown’s teacher. Some scary words
were spoken: brain damage, apraxia, muscles working fine (wouldn’t we need a EMG
for that?), brain function, lots of other “brain” something. As he’s grabbing
his bag to go to another patient he asks: “Any questions for me?” Unfortunately
we have to wait until after the MRI to get definitive answers. I’m picking up
our coats and I’m wondering how I’m going to call my husband at work and tell
him the news gently. Gently?!!
Manage the fear. Keep it contained. Keep it in the back of
my mind and keep going. Fight back that fear. I have to stay strong for my
babies and for my husband. Blink away the tears, take a deep breath, regroup, BREATHE for the love of God, and focus
on the important things.
The road to a diagnosis is painful and it is just the
beginning of the journey for my baby girl. This is not what we had planned for
our babies. It is so very sad. The tears that flooded my eyes in front of the
elevator were for my babies, not so much for me. The tears in my husband’s eyes
weren’t for our sadness. They’re for all his fears for our babies. Take it one
day at a time and never lose hope. It is all we can do, the life of a special
needs parent.
No comments:
Post a Comment