September 18, 2013. I sent the Good Doctor to the pediatric ophthalmologist with Victor that day. He called me on the way home,
"The doctor says Victor is completely blind."
I never did like that doctor but I'm not sure if it's him or his message.
But here we are, 3 years later.
That doctor didn't know the power of prayer because around 1 year of age he showed signs of light perception and a year later he held a book to his face and told me which one it was.
And then we learned that blindness was the least of his troubles.
So now we pray for breakthrough in behavioral issues. And while the day-in-and-day-out is wearying and looks like we've made no progress, we have.
When he chooses to to bang his foot rather than his head, we've made progress.
When he responds to someone's hello not with a yell but with a quiet and polite, "I really don't want to talk right now," we've made progress.
When he allows us to comfort him after a fall rather than hitting us and yelling, we've made progress.
When he says, "Yes, Mommy," and follows through with my request rather than defiance, we've made progress.
We are exceedingly thankful for the number of wonderful people who have come into our lives because of Victor. And on my good days, I'm thankful for the lessons I am learning through Victor's diagnosis. Love, grace, joy, patience, and compassion have all been cultivated in this journey as has empathy for others walking a similar journey. And if this is what it takes for me to become more like Jesus, then this is the path I will walk.
Happy Diagnosis Day, everyone!
Sunday, September 18, 2016
Tuesday, September 6, 2016
Pretty School
Well, if you were looking for an update on Victor's first morning at pretty school, here it is...
He survived. And so did I (but barely). Team Victor was missing only his OT (and that was because we decided that we didn't need one more person in the room today).
Arrival was shaky. we decided to skip the putting the backpack on the hook part of the routine. Not happening.
And who was worried about whether or not he'd use the potty at preschool? (Me.) Within the first five minutes, everyone in the room knew that Victor was headed for the potty. Success. Publicly.
But it's not as if all of their eyes and ears weren't already on him because his entrance at the end of circle time was an entertaining one. There was going to be no Victor in that compliant circle-sitting group. And he let it be known by not just a little bit of yelling and head banging and floor rolling.
Free play found him throwing little colored glass beads (from the light table - no surprise that this is the first object that caught his eye) and swiping the whole basket of crayons right off the table (my apologies to the little girl from our church - and her parents - who saw the whole crayon episode and looked at me with horror). Oh, and sneaking a bit of play-doh down the hatch.
He told his TVI to shut up and when she told him that it hurts her heart when he says that, he whispered it. Maybe words can only hurt when they are spoken loudly?
Sensory and anxiety and frustration overload came at snack clean-up when he was a bit confused about where to put his cup (dish pan) and napkin (trash can). So, he and his behavioral specialist spent a few minutes in the cubbies (where Victor ended up) while Victor yelled and rolled and banged his head. Out in the main area, the rest of Team Victor decided that I would just take him home when he was done but after 7 minutes (yes, we counted), he sat up and nicely placed his things where they belonged and announced that he was going to join the rest of the children on the playground. So we did.
And there were some glimmers of hope.
After the throwing incident at the light table, Victor decided to play McDonald's with me. I was able to get him to play McDonald's with the other child and student teacher who were also there. The other little girl was a beautiful example of the graciousness of children; she didn't miss a beat and ordered herself some McDonald's chicken which Victor happily supplied to her.
He joined a few children at the housekeeping area. Of course he then picked up a pretend pot and banged it on the table. Then another child joined in. Who says Victor isn't a leader? They'll all be accomplished drummers by the end of the school year.
He voluntarily joined the line-up for pre-snack hand-washing, found an empty chair on his own, and sat down nicely for all of snack. At this point all of Team Victor was a bit misty-eyed.
And he had a lovely time on the playground.
On the way home, when there were a few tears shed (mine) he told me to calm down and take some deep breaths.
Funny, that's what I used to tell him in the NICU.
And tomorrow we get to do it all again.
He survived. And so did I (but barely). Team Victor was missing only his OT (and that was because we decided that we didn't need one more person in the room today).
Arrival was shaky. we decided to skip the putting the backpack on the hook part of the routine. Not happening.
And who was worried about whether or not he'd use the potty at preschool? (Me.) Within the first five minutes, everyone in the room knew that Victor was headed for the potty. Success. Publicly.
But it's not as if all of their eyes and ears weren't already on him because his entrance at the end of circle time was an entertaining one. There was going to be no Victor in that compliant circle-sitting group. And he let it be known by not just a little bit of yelling and head banging and floor rolling.
Free play found him throwing little colored glass beads (from the light table - no surprise that this is the first object that caught his eye) and swiping the whole basket of crayons right off the table (my apologies to the little girl from our church - and her parents - who saw the whole crayon episode and looked at me with horror). Oh, and sneaking a bit of play-doh down the hatch.
He told his TVI to shut up and when she told him that it hurts her heart when he says that, he whispered it. Maybe words can only hurt when they are spoken loudly?
Sensory and anxiety and frustration overload came at snack clean-up when he was a bit confused about where to put his cup (dish pan) and napkin (trash can). So, he and his behavioral specialist spent a few minutes in the cubbies (where Victor ended up) while Victor yelled and rolled and banged his head. Out in the main area, the rest of Team Victor decided that I would just take him home when he was done but after 7 minutes (yes, we counted), he sat up and nicely placed his things where they belonged and announced that he was going to join the rest of the children on the playground. So we did.
And there were some glimmers of hope.
After the throwing incident at the light table, Victor decided to play McDonald's with me. I was able to get him to play McDonald's with the other child and student teacher who were also there. The other little girl was a beautiful example of the graciousness of children; she didn't miss a beat and ordered herself some McDonald's chicken which Victor happily supplied to her.
He joined a few children at the housekeeping area. Of course he then picked up a pretend pot and banged it on the table. Then another child joined in. Who says Victor isn't a leader? They'll all be accomplished drummers by the end of the school year.
He voluntarily joined the line-up for pre-snack hand-washing, found an empty chair on his own, and sat down nicely for all of snack. At this point all of Team Victor was a bit misty-eyed.
And he had a lovely time on the playground.
On the way home, when there were a few tears shed (mine) he told me to calm down and take some deep breaths.
Funny, that's what I used to tell him in the NICU.
And tomorrow we get to do it all again.
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