We arrived at our appt a tiny bit late, about 15 minutes.
First a resident eye doctor examined Taizi. He didn't say a lot but did a number of seemingly 'basic' tests. I requested a weight to be charted for nutrition. We went right away to the scale we have been using in the same cranio facial wing and got weighed. I could hardly look up at the reading. You know when you are wishful for something and it's almost like you feel you could change it by looking...? Yah. You know. Not really but I was squinting then quickly looked down as I saw the numbers flicker. I quickly looked up to see ... what I hoped I wouldn't see.
4 months of 9.5kg. We are 10 days post heart surgery and eating the same very intense, fortified diet of outrageous calories, fat and protein...and we are even down 100 grams. 9.4kg.
It was noted in his chart and we went back to the eye clinic.
After a number of tests, the head doctor came in. She introduced herself and we began to talk.
She looked at Taizi's right eye ... at the bottom lid...for what seemed like...forever. She said nothing. Light in hand. Breathing too close to my face. Finally I asked. She said the duct is so tiny it's almost hard to see if it's there. There is oozing...constant, colored oozing out of that eye. All day. Every day. For 4 months.
We talked extensively about this.
She said the duct is clearly blocked and therefore, instead of draining the tears down the nose...it's like a stagnant pond and everything is collecting, yucky...and finally coming back up...in yellow and green out the eye. A vivid picture but makes perfect sense. She said we go in with a tube and clear it out but to be honest...so much of his eye is deformed that I fully anticipate deformities in the canal which doesn't allow us to do this. Then we will attempt a surgical procedure.
Remember this eye is a different shape, oozes and never blinks. Even at night...remains about 1/3 open all night.
She said there is definitely a nerve issue related to his Hemifacial or Goldenhar and that's the reason it won't blink or close.
She poured special drops in his eye and waited 10 minutes. With a blue light came back to see how well the ducts are working in both eyes and the right eye still had ALL of the dye in it and confirmed that it doesn't drain properly at all.
Then she dialated the eyes with the drops. We left for 30 minutes and quickly ran to radiology for a bone scan of his left wrist to see if they can more accurately determine his age. We quickly left there and came back to the eye clinic.
Again, much testing and then the final blow.
Taizi, for all purposes, is blind in the right eye.
He is "so severely far sighted...that he can't see a thing. He is +6 of a perscription in that eye".
His left eye only had a tad farsightedness... +0.5.
She said she fully suspects his entire eye ball is deformed and misshapen causing such severe far-sightedness.
She immediately printed the perscription and brought in the sample of glasses.
yes. He needs glasses. Immediately.
His ears are deformed and low on his head.
He will have to wear the glasses that go around his head. Like this.
Ok. To process this. I felt like someone just stabbed me in the heart. I'm not a cry-er...but this really affected me. Not the glasses...the eye. My child has been blind in one eye...for 3.5 years. No one has known. He has had no voice to say.
I suddenly got this picture of Taizi...whole. Yes...whole. In Heaven. Cognitively, developmentally, physically...in every way...whole. Not deaf. Not delayed. Not 'deformed'. Not severe stunted growth. But whole.
And looking into our eyes ... and saying "thank you". "thank you for fighting for me. That day when you found out I couldn't see...I wanted to sing. I wanted to hug you so tight. I wanted to tell you I had waited 3.5 years for someone to see...that I couldn't. Yet...I had no voice. I had no way of telling you 'thank you'...until now.
In parenting...your reward is in the here and now.
With Taizi...it's not. But let's get a real clear view of reality....this is the nothing. Eternity is the forever. This is like a day. Eternity is a bajillion years. That's what matters.
And today...we do it for Jesus. We do it...because whatever we do for Taizi...we are doing for Him.
But someday....Taizi will be whole. Fully...whole. And I could feel my heart start to crumble.
Change and Taizi don't go well. Glasses...? Dean looked at me speechless...."glasses....?" Yes. Glasses. On Taizi.
There are many other issues of deformity with the eye. The blindness...we had no idea.
Tonight on the way home...we stopped at a gas station. As we did a large vehicle parked nearby and a pile of soldiers got out. The kids completely lit up. They couldn't believe they were seeing REAL...LIVE...SOLDIERS! :) Zion is passionate about being a soldier and he was in awe. Well after the bathroom break we saw some girls selling Girl Scout cookies. I went to get my check book in the van. When I came back they were beaming. I thought it was strange but said "I'll buy 4 boxes". The girl looked up and said "the soldiers just bought you 2 boxes!" I have never had that happen to me before. "what?" "yes...they came and paid for 2 boxes for the next family" and we were all standing right there. I looked up and the one man, probably mid 40's, said "oh...you weren't supposed to know it was us. Never ever reveal your secret gift...now I lost my reward!" :) I told him my children will be completely over the moon seeing they were already in awe of you all!" He smiled. We smiled and I smiled..on the inside. It was a little thing. But it was a gift. And it was a day...when a gift was so needed.
On the way home, the children all slept and we started listening to a preacher named James MacDonald.
He spoke on Job 23:10.
And I knew this was for me.