Someone asked me yesterday how it was growing up with a dad with physical limitations. I thought that was a strange question because it never occurred to me that my dad had physical limitations. My dad was born with a genetic eye condition called ocular albinism. His retinas have no pigment in them so when the light goes in, there is nothing for it to bounce off of to create the image in his brain. Instead, the light is absorbed into the retina and it makes his vision blurry. This gene is x-linked so me and both of my sisters are carriers and our boys have a 50/50 shot at being born with the same condition and our daughters have a 50/50 shot at being carriers of the gene.
In my dad's case, it didn't really affect him much in his adult life. When he was set apart for his mission, the stake president blessed him that if he followed all the mission rules and worked hard, the Lord would bless him with improved vision. Guess what?! That is exactly what happened. My dad could drive a car and as far as I knew, my dad could see just fine through his coke bottle glasses.He did all the things normal sighted people do. He had a job, one that paid decent. He drove us around town. Life was pretty normal.
Well, 5 years ago this month my family was blessed with a little boy named Jonathan. The feelings going through me were feelings of joy and happiness. In the back of my mind I knew he could be born with this but for a little while I just marveled at the miracle in my arms and enjoyed his first two days on earth with no worries of imperfections or trials that he might have to endure in his life here on the earth. It was at his first dr. appt. that we discovered he was born with ocular albinism. We saw a pediatric opthamologist at Primary Children's Hospital who confirmed and gave the official diagnosis. It was disappointing but I knew we could handle anything the Lord gave us.
A little more than a year later we were blessed with another boy with ocular albinism. Adam was also affected by it and around that same time I had a feeling that Jon was also autistic. He wouldn't be diagnosed for another six months. Adam was a little different than Jon, though. He wanted to be held all the time. He couldn't sleep unless I held him. He didn't gain weight very easily. His hard palette had a very high arch and he couldn't suck very well. When he was 5 months old he had ear tubes put in and the post op nurse took a look at him and had an idea to try a pigeon nipple with him. Babies born with cleft palettes and cleft lips use them because no sucking is required. The just have to bite the nipple and the formula squirts out. It was after this that he began to thrive. He was also later diagnosed with autism.
A little less than four months ago, we were blessed with, yet again, a little boy with ocular albinism. I knew only hours after he was born this time because I'm such an expert on this now. I know how to diagnose it before the appointment with the eye dr. and Mark and I did the little test. Sure enough, we knew then and there that he has it too. So I called and made the appointment with Dr. Dries the very day this little boy was born. We had our visit a couple of weeks ago and today Josh is wearing glasses. It is so strange to see glasses on this little baby but it's like his whole world has opened up to him. I am actually getting social smiles from him, which is something I didn't get from the other boys till much later on. It is encouraging. Maybe he isn't autistic too. That is something we will have to wait and see about.
I have never been angry with the Lord over this. People automatically assume that when something like this happens more than once that you would ask why you? I might have thought this once or twice but I really don't remember feeling that way. These boys are here for a reason. They are automatically going to the Celestial Kingdom. They only needed their bodies. They don't need to be here for themselves. There is something that my family needs to learn that we wouldn't have been able to learn otherwise. Maybe someday we'll find out what that reason is. Until then, I'll just keep enjoying my boys and be grateful for my jacked up X chromosome. Better to enjoy it and accept it than to worry over it.
Someone asked me yesterday how it was growing up with a dad with physical limitations. I thought that was a strange question because it never occurred to me that my dad had physical limitations. My dad was born with a genetic eye condition called ocular albinism. His retinas have no pigment in them so when the light goes in, there is nothing for it to bounce off of to create the image in his brain. Instead, the light is absorbed into the retina and it makes his vision blurry. This gene is x-linked so me and both of my sisters are carriers and our boys have a 50/50 shot at being born with the same condition and our daughters have a 50/50 shot at being carriers of the gene.
In my dad's case, it didn't really affect him much in his adult life. When he was set apart for his mission, the stake president blessed him that if he followed all the mission rules and worked hard, the Lord would bless him with improved vision. Guess what?! That is exactly what happened. My dad could drive a car and as far as I knew, my dad could see just fine through his coke bottle glasses.He did all the things normal sighted people do. He had a job, one that paid decent. He drove us around town. Life was pretty normal.
Well, 5 years ago this month my family was blessed with a little boy named Jonathan. The feelings going through me were feelings of joy and happiness. In the back of my mind I knew he could be born with this but for a little while I just marveled at the miracle in my arms and enjoyed his first two days on earth with no worries of imperfections or trials that he might have to endure in his life here on the earth. It was at his first dr. appt. that we discovered he was born with ocular albinism. We saw a pediatric opthamologist at Primary Children's Hospital who confirmed and gave the official diagnosis. It was disappointing but I knew we could handle anything the Lord gave us.
A little more than a year later we were blessed with another boy with ocular albinism. Adam was also affected by it and around that same time I had a feeling that Jon was also autistic. He wouldn't be diagnosed for another six months. Adam was a little different than Jon, though. He wanted to be held all the time. He couldn't sleep unless I held him. He didn't gain weight very easily. His hard palette had a very high arch and he couldn't suck very well. When he was 5 months old he had ear tubes put in and the post op nurse took a look at him and had an idea to try a pigeon nipple with him. Babies born with cleft palettes and cleft lips use them because no sucking is required. The just have to bite the nipple and the formula squirts out. It was after this that he began to thrive. He was also later diagnosed with autism.
A little less than four months ago, we were blessed with, yet again, a little boy with ocular albinism. I knew only hours after he was born this time because I'm such an expert on this now. I know how to diagnose it before the appointment with the eye dr. and Mark and I did the little test. Sure enough, we knew then and there that he has it too. So I called and made the appointment with Dr. Dries the very day this little boy was born. We had our visit a couple of weeks ago and today Josh is wearing glasses. It is so strange to see glasses on this little baby but it's like his whole world has opened up to him. I am actually getting social smiles from him, which is something I didn't get from the other boys till much later on. It is encouraging. Maybe he isn't autistic too. That is something we will have to wait and see about.
I have never been angry with the Lord over this. People automatically assume that when something like this happens more than once that you would ask why you? I might have thought this once or twice but I really don't remember feeling that way. These boys are here for a reason. They are automatically going to the Celestial Kingdom. They only needed their bodies. They don't need to be here for themselves. There is something that my family needs to learn that we wouldn't have been able to learn otherwise. Maybe someday we'll find out what that reason is. Until then, I'll just keep enjoying my boys and be grateful for my jacked up X chromosome. Better to enjoy it and accept it than to worry over it.
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