We also learned today that Reuben does NOT have a "rare" disease, but what is considered an "ultra rare" disease because there are fewer than 300 people documented to have the condition. We knew that there were only about 60 cases reported in medical literature, which in itself attests to the rarity of his condition, but to know that counting all of the known cases results in fewer than 300 is kind of mind boggling.
And, as Matt points out as he's looking over my shoulder, even considering it a "disease" is somewhat odd. Reuben doesn't have a "disease" in the sense that you usually think of disease - something that's transmitted, or that you acquire at some point during your life. Reuben was born this way - with an oddly formed 20th chromosome in every cell of his body from the day of his conception. It's hard to think of it as a disease when it's so fundamentally part of who he is - who God designed him to be. This is the little boy who was conceived when Matt decided to trust that God meant it when he said that children were a blessing. This is the little boy who, after his birth, laid in my arms for an hour before we bothered to check to see if Baby was a boy or a girl (one of the beauties of the relaxed nature of giving birth at home!) because I was just so happy to hold my little baby - nothing mattered beyond the fact that this was my baby and I loved him (or her!) This is the little boy who we very intentionally named "Reuben Matthew," which means, "behold, a son! a gift from God."
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| Reuben loves to sit with us during our Friday night Bible study with his own (blue) Bible open on his lap. |
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