Saturday, February 18, 2012

I've been avoiding this

There is a reason I haven't written in a while.  I could blame it on being busy, or on taking care of the kids, or I could even fib and say my computer was broken, but that's not the truth.  Last week we got a diagnosis that I have been suspecting for quite some time but it really hit me hard and I just needed time to process and work through it before I could talk about it with all of you. 

I have suspected for a while that Dominic couldn't see much, and he was already diagnosed with Cortical Visual Impairment, or CVI (where the eyes are intact but once the information reaches the brain it is not processed correctly) but last week the neurologist diagnosed him with Atrophied Optic Nerves.  I knew this before I went in for our appointment because I happened to have an appointment the day before with the Medical Records Department to review his charts.  I saw the most recent MRI which showed lots of sucky stuff, and right there in black and white it said "optic nerve atrophy/hypoplasia."  Immediately my stomach sunk.  I didn't know exactly what this meant, but I know what an optic nerve is and I know what "atrophy" means so I put two and two together.

The next day I went to the Neurologist and asked him what he thought it meant.  He made a pained face and said that he thinks Dominic will have significant vision loss.  Like I said I was expecting this as his pupils no longer react to light (he will flinch when the light turns on in the room, but when you shine a light in his eyes, they do not react at all).

There have also been unfavorable changes in the brain, including increased ventricle size and increased signal on the MRI, showing more water than there should be in the brains grey matter.  The increased ventricles, they think, is not due to increased pressure in the brain (which would be hydrocephalus), but because the brain is not growing, thus making more room for the ventricles to grow abnormally large.

Of all the diagnoses he has, this one has really bothered me and I took it pretty hard for a few days.  I always pray for God's will to be done, in all aspects of my life, and especially when it comes to Dominic, but that is easy to pray and hard to live.  I was facing this new reality of a child with visual impairment and what that meant combined with his other multiple disabilities.  And like always, I have these images in my head of all the blind people I have known throughout my life.  How they moved, what their facial expressions looked like, how they maneuvered their environment.

When I was a tech, before I went to PT school, I worked at Children's Medical Center Dallas.  There I would help a therapist every week with one special little girl named Gianna.  She was blind.  For some reason she has always owned a piece of my heart, I was in love with her.  I was always so drawn to her and would make sure I was available to help with her session when she came in.  In college I used to read to a boy who was blind to help him with his homework.  Again, I was always drawn to him but in my selfishness I stopped.  It has always gnawed at my soul how I could have been so self-centered, he needed me and I abandoned him, for what?  I had nothing important to do.  Now I know why.  I God's goodness he has always prepared me for life with Dominic.  He drew me to my profession, of working with children with special needs.  He placed a desire in my heart to get close to blind people.  He has seered images in my head of certain children with severe disabilities, like Michael, the first patient I ever had who died.  I can still see his face, so innocent, trapped in this contorted, broken body.

After I grieved for a few days, I did what I know how to... I figured out how to advocate for this particular disability.  I contacted the states division for the blind and had a meeting with a blind child specialist who then is making referrals to all sorts of different programs.  Yesterday I talked with a Visual Impaired Teacher (VIT) in the school district who will start coming out to see Dominic (they start seeing kids with VI very early because they take so long to learn how to do everyday tasks).

Where am I now?  I still feel the tinge of the diagnosis.  It still makes me shutter a little bit.  I have hope that he will be able to see some but the therapist in me is trying to be realistic and prepare for the worst.  I am learning all about the visual impaired world so I can be the best care taker possible for Dominic.  Mostly though I have forgotten about what he can't, or may not be able to, do.  I see his sweet face, so happy.  Happier than any baby I have ever met  I have to remember that through him I can see God, if only I choose to.  I am thankful for his life, for the lessons he is teaching me and the rest of his family, for the opportunity to, in a very special way, enter into the mystery of our Lord.  To trust.  To believe.  To praise Him in hard times.  What a grace we have been given to be able to do this; we have no strength but He always fills us to the point where we can not contain the love he pours out upon us.

Trusting in our Ever-Faithful Lord,

1 comment:

  1. Hey, that picture was taken at my house! Love you little Dom.