This blog began as a small project. A digital scrap book. My only intention was to keep friends and family informed, and to give Nomi and Raafay something to look back upon as adults. It has evolved into so much more.
For Nomi, he is too young to remember and understand his condition, let alone the steps he has had to go through to improve. By the time he is old enough to really comprehend this blog, he will have forgotten what his life was like prior to 10/24/13.
For Raafay, as a big brother, he obviously cares for his younger brother. It is still difficult for him, to see his brother, Mom, and Dad away for so long. He has had to stay home because of school. Luckily, he has his cousins to keep him company whom he loves to death, and my sister cares for him as if he were her own, but you still can't replace us (I hope), and we did spend a total of 6 and 1/2 weeks away in the last 4 months. Raafay has had to make this sacrifice, and he has been gracious about it. He too will be able to refer back to this blog and see why he too had to sacrifice.
For me personally, this has been very therapeutic. Sharing our story, our feelings, putting it all on "paper", has helped me reflect in ways I wasn't expecting.
This blog has given us the privilege of meeting many great people. People who are either involved in LCA research or study, families that are affected, people who are interested, have all been able to reach us via email and Facebook. In some cases, we have even been able to meet people via phone and in person. All thanks to our little project. It's amazing to connect with everyone, learn from them, and answer questions for them. We can turn to each other for support and information. It's a support group and therapy, rolled into one, for the digital age.
As of a few minutes ago, this blog has been read over 7200 times from people in countries all around the world. We are humbled and grateful to all for the outpouring of love, prayers, and support.
We thank you all out there for following us on this journey.
For Nomi, he is too young to remember and understand his condition, let alone the steps he has had to go through to improve. By the time he is old enough to really comprehend this blog, he will have forgotten what his life was like prior to 10/24/13.
For Raafay, as a big brother, he obviously cares for his younger brother. It is still difficult for him, to see his brother, Mom, and Dad away for so long. He has had to stay home because of school. Luckily, he has his cousins to keep him company whom he loves to death, and my sister cares for him as if he were her own, but you still can't replace us (I hope), and we did spend a total of 6 and 1/2 weeks away in the last 4 months. Raafay has had to make this sacrifice, and he has been gracious about it. He too will be able to refer back to this blog and see why he too had to sacrifice.
For me personally, this has been very therapeutic. Sharing our story, our feelings, putting it all on "paper", has helped me reflect in ways I wasn't expecting.
This blog has given us the privilege of meeting many great people. People who are either involved in LCA research or study, families that are affected, people who are interested, have all been able to reach us via email and Facebook. In some cases, we have even been able to meet people via phone and in person. All thanks to our little project. It's amazing to connect with everyone, learn from them, and answer questions for them. We can turn to each other for support and information. It's a support group and therapy, rolled into one, for the digital age.
As of a few minutes ago, this blog has been read over 7200 times from people in countries all around the world. We are humbled and grateful to all for the outpouring of love, prayers, and support.
We thank you all out there for following us on this journey.
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