Josiah Riley here.  Thought an update on our family was in order, especially our son, Rydon, who is five, and a very special little guy.

I live in Ogden, Utah, with my beautiful wife, Rebecca, and our brood of seven children:  Reva (16), Robert (12), Rose Marie (11), twins Ricky and Rudolph (they're ten), Rachel (8), and Rydon, who is, as I just mentioned, five.

I work for the Salt Lake City school system; as for my wife, she's a homeschool instructor/homemaker.  She would work outside the home; however, the demands of our youngest prevents this. 

Our youngest child was born seemingly healthy; at a few months of age, there were indications that something was wrong.  Test after test revealed nothing at first; we became increasingly frustrated because it seemed that nobody would help us.  Then we contacted a geneticist, who finally diagnosed Rydon as having fumarase deficiency disorder, which is, basically, an autosomal recessive metabolic disorder.  Simply put, his body doesn't produce enough fumaric acid; it causes increasing disability and other problems.

In other words, Rydon doesn't walk or talk.  He requires much in the way of care, twenty four hours a day.  He is blind, is nonverbal, and cannot walk or feed himself.  He can, however, smile, hear, and respond to affection, or let us know how he is feeling; his face tells the whole story, as are his noises. 

It's very frustrating at times because Rydon can get sick so easily.  One minute, he's a giggling, happy little boy; the next, he can be in the hospital, gasping for air as pneumonia invades his lungs, or fighting a high fever, massive infection, or any other number of illnesses.  Sometiems he's gotten so sick we were afraid he might die.

Having a child like Rydon doesn't leave much room for family time as much as we would like.  Oh, we do go to church every Sunday, or maybe an occasional nibble at any local restaurant, but more likely than not, our time is usually tied up with Rydon and/or caring for him. 

I know the other children get angry at their little brother.  We don't get angry ourselves, but we know not to blame Rydon.  It isn't his fault; it's just something that happened; now he has to live with the consequences for the rest of his life.

I can read their minds, especially now, with Christmas coming up.  I can imagine any of them asking:  "Father, will we even have a Christmas this year?"  I can only reassure them and tell them that yes, indeed, we will have Christmas this year.  All nine of us.

If I or Rebecca can't do it, I'll see to it that we get someone else to help us, to ensure that our family does have a Christmas to remember.  After all, they're only children:  they deserve to have toys under the tree, or let someone know that they are thinking of them this Christmas season that's quickly approaching.

Having a child like Rydon isn't easy by any stretch of the imagination.  Often we're left financially strapped; we're in the same boat as many other Americans, who don't even have children who have special needs.  The economy's the pits.  Everyone is suffering, not just people like us.  (The only ones who don't seem to be suffering are the very rich or those in politics; for some reason, they seem to have much more money than they know what to do with; they continue to live high off the hog.)

This is another reason why Rebecca and I stress on making gifts for each other, or at least if they do have the money, to buy something small but meaningful, something that will make this Christmas extra special.

Now that the flu season is here, we're doing everything we possibly can to keep our kids well.  The flu is bad for anyone; for kids like Rydon, however, it can spell total disaster.  The flu would more than likely kill him; he just doesn't have the strength to fight it.  Even a cold could prove fatal to him.  This is why when he does get sick he has to go to the hospital or else he could die, just like that.

We try not to leave Rydon home, but if flu is rampant, we can't chance it, so often he's left at home (with Rebecca or our two oldest children to watch over him) while the remaining family members go out for a bite to eat, to a football game, or to the zoo, so we can get away for several hours.  We need a break from worrying over Rydon and whether he is going to make it through another day; we need some serious family time to where we can laugh, talk, or even cry with each other.

It seems the only time Rebecca or Rydon get out is on Sundays, when we go to church.  I guess that is why church is so special to us because then the entire family is together, as it should be.

Well, Rydon's IV monitor is singing again, so that must mean his feeding is about done.  I will go now; until later, this is Josiah Riley saying so long!  If I don't say so then, let me wish you a happy Thanksgiving early (Thanksgiving is next week, a week from this coming Thursday).  God bless you and thank you for reading my words.

~Sincerely, Josiah.   :)