Albinism affects vision, skin sensitivity and vary rarely can be associated with a bleeding and neurological disorder. We were not sure what to expect when we met him because there is very little on his medical report. It did say that he was afraid of light (which he is). The condition is called photophobia. It's like being woken up by a bright light and not being able to relax your eyes. It hurts. Poor depth perception, nsytagmus (involuntary wiggling of the eyes) and lower resolution vision are some of the vision issues related to albinism.
This post comes off a bit clinical. I'm sorry for that. My mind works analytically and loves observation. You may not see in my observations the emotional roller coaster, the emotional weariness and the grief of letting expectations go. A friend said when she met our son that he was surprisingly average. I take that as a huge complement because it shows how far he's come.
When we met our son, he was stressed and nervous. His nystagmus was in overdrive. The first day he self soothed with his shirt on his imaginary soul patch and his eyes danced eerily. Because of his poor depth perception and lack of vision resolution he had to be dependent on his caregiver and he played with toys very close to his face. He held the toys we brought very close, curving his neck and back to see more clearly. Consequently, we don't think he walked much. He stood up for us on the second day and walked a few steps before throwing himself into our arms, but he was unsteady on his feet. He had a squishy belly and squishy thighs. Since his calves were super strong, we suspected he scooched on his bottom and kicked like a champ.
While other children were running around and enjoying their new freedom, our son sat and played quietly. It worried me. When our son cried, he cried a close mouth cry except when he had a full out tantrum, and then he would flail so much that we tried to keep him from hurting himself. We suspect that the children could have those tantrums in their cribs and not be injured as they would have been on our hotel marble floor. That first night, I confessed to my husband, "He's so broken." My husband replied, "He's who God chose for us." I had to let go of all my expectations and get to know our son right where he was. I had to cheer at every gain and not be discouraged by the losses.
His nystagmus his calmed down so much. Now, I rarely see it. He's got to be tired or stressed out. He still self-soothes on everything he can find that is soft and cuddly. I made him a blanket out of the softest yarn I could find. He's attached to it well, and it signals naps and nighttime. We all walked him down the hall of the hotel holding his hand for long stretches of time. He would walk and walk and walk. He never walked independently in our first hotel room. In our second hotel, he walked cautiously around the room. It filled me with joy. He's still unsure on slopes, grass or uneven ground, but he is making strides. I see them as huge gains, but to the outside eye may not even notice. He's smart, determined and a quick learner. He is almost running now, but only where he knows the terrain. He doesn't play on playground equipment, yet.
He has lots of eating issues. When our son eats, he makes a sound like "yumm" but the "um" doesn't stop. It started out endearing but it became stressful. The noise would go on for the duration of the meal. Baby signs and food security has made meals more manageable. He has transitioned from a bottle to sippy. He didn't eat solid food when we met him. His tongue still got in the way and he didn't know what to do with his bottom lip. He didn't open his hands to put hand held food into his mouth. He didn't use his thump effectively. Now, he'll try to feed himself with a spoon. The dog loves it. Huge strides in a short time.
I could go on and on about how he is overcoming delays. Two things I want to note. When we were at a meal in Xi'an our guide Sherry encouraged me by saying that some kids in the orphanage get attention because they are loud and demand it. She said that other kids are quiet and since they play by themselves they don't get as much attention, but they still need it. "Don't worry," she said, "He'll be fine." She was right. Our son has attached remarkably well. The psychologist at our adoption intake evaluation made a statement that has stuck with me. "Somebody at the orphanage loved him." They did, and we do too.
Everyday we make gains. I can't imagine where we will be in a year. I look forward to it.
Photo Drop Time!
|Our guides, Sally and Sherry, in Xi'an|
|In the new section of Guangzhou|
|My favorite cling-on before the river cruise|
|Making it legit and getting a visa|
|At our hotel in Guangzhou and pretty happy about it|