Greetings from the Cox family here in West Covina, California!

I (Grafton, the dad) hope you are all doing well this Easter weekend.  I know I am.  Dee (my wife) is busy with coloring the Easter eggs, and trying to figure out where to hide them when we have our annual Easter Egg Hunt on Sunday after church.  The kids (Graylin and Georgina, who are eleven and nine) are swimming at a friend's house, and I am busy entertaining our youngest, Grafton Thomas, who is six.  (I'm off from work today.  I'm a mail carrier.)

Later, our nurse friends (Carole and Wynette) will be over, to see to Granger's needs (checking vital signs, making sure he doesn't have any bedsores, checking his stomach tubing for signs of redness/infection, hooking him up to his daily nutrition suppliments, etc., to make sure all is well),  They are very good with him.  I trust Carole and Wynette with our son because they know what they are doing, sometimes trying to remember all that they have taught us can get a bit overwhelming, especially when our own lives are so full of activity.

The weather here has been beautiful: sunny days and cool nights, some days with rain, but nothing major.  We did have some bad weather roll through here earlier this month, but all that's seemed to have gone by the wayside.  I pray the nice weather pattern continues.  

And like the nice weather pattern, our son Granger has been doing well in relation to his health: no episodes of excess congestion or breathing issues), infections, or fever.  I pray this continues; when Granger gets sick and/or ends up in the hospital, our whole world stops, and then everything is focused primarily on Granger's medical needs.

I feel bad when this happens because I feel like Dee spends her whole life at the hospital with Granger while I try to take care of our other two children when I am not working.  I know they must get jealous of their little brother because he has so many different special needs that are beyond his control.  He can't help it if he gets sick or being the way he is.

I get annoyed at God at times because He allowed our son to be born like this (mentally and physically compromised) for a reason, and I get mad because I wish he could talk, walk, or feed himself.  At least he can hear and see, but still: it's frustrating.

We don't know any other families who are dealing with this rare syndrome (Q-144 syndrome); there are probably 40 or so known cases around the world.  Doctors don't know  how to deal with our son because most have never even heard of this condition, and we are often left without any answers.

Besides the physical and mental disabilities, Granger also has heart problems.  We have to see a pediatric cardiologist every few months, to make sure his heart is behaving itself.  He may eventually need surgery down the line, but right now, we try not to think about this.  It would be extremely risky for him to undergo such an invasive procedure; it is not known whether he would even survive the anesthesia.  So right now, we are trying all we can to avoid surgery and keep him comfortable with medication, regular checkups with the cardiologist, and oxygen at night to help his breathing.

Well, I have to change Granger; he just made a nasty mess in his diapers.  Pew!!  I also have to make sure that Dee is okay with the egg coloring.  I will write in here again soon; sorry for not writing in such a long time.  Now you can see why: our lives are full of busyness!  Until later, take care and may God bless you this Easter weekend!  Make sure you don't forget WHY we celebrate Easter and don't forget to attend church!

~Grafton Cox.