Justen

By now most of you know the heartbreaking news about my 8 year old grandson Justen. He has a genetic chromosomal defect called DiGeorge Syndrome. It tricks one of the thyroid glands into thinking that the body doesn't need Calcium, therefore, robbing the body of this very important vitamin/mineral, whatever you call it. The repercussions can be very severe, from kidney damage, to bone damage, to heart problems, to name just a very few. Here is an excerpt from the email Jessica sent me, explaining more about the syndrome:

The specialist diagnosed Justen with Digeorge Syndrome. His developmental problems all these years don't appear to be from the anti-seizure medicine after all. Digeorge is genetic and something that affects you from birth. If you google it, you'll see it explains everything: the mild retardation, the hand cramps, the hearing and speech problems, the calcium deficiency and even some of his facial features. There is no cure, only treatments but they haven't actually figured out what to do with him yet. There is a treatment the doctor told Jimmy about but it's only meant for adults. Some kids have tried it but there have been no studies on the long term effects and so I don't know what we'll do. First step is to do more tests to see if there is any bone or kidney damage caused by the calcium deficiency going on so long without anyone knowing it. From here on, it's a matter of taking it day-by-day.

So, there you have it. But right now, I want to talk about Justen the little boy, not Justen the patient.

Justen's been a blessing right from birth. A healthy 8-pounder, he was, for the most part, a happy baby, aside from the wretched colic he suffered. His tiny little smile always lit up a room, and oh, that belly laugh of his would get us going EVERY time.

As he grew, so did his loving nature. He's always been such a lovebug, and still is! He's your typical 8 year old:very active, but never too busy to run up to Grandma and say 'I love you Grandma!', or 'Grandma, you're beautiful!'...ahhh...what a kid. Justen doesn't just have friends...he has BEST friends...LOL...most everyone is his 'best friend' and he never fails to tell them that.

As I mentioned earlier, Justen is active. Very active...LOL...if we could bottle his energy and sell it, we'd be rich! He loves to play with his dogs Kingston & Bailey. He likes to kick the ball around outside, although sometimes he gets a little carried away and needs to be reminded to 'settle down a little, buddy', and one of his 2 favorite pastimes is playing at the park across the street. His 2nd fave pastime is enjoying the title of 'Wii Bowling Champ'...yep, they have a Wii, and so far this little guy is an undefeated champ. It's an absolute riot to watch him 'bowl' on the Wii. He has his own style, and it earns him a strike 9 out of 10 times. We recently had a family night, and played Wii bowling, and everyone was just in stitches watching Justen do his thing. And yet Justen is in no way conceited or in-your-face. He simply bowls his strike, hands the controller to the next person, and walks away. It's amazing...LOL

He's got the biggest heart of anyone I know. He is so unassuming, and so undemanding, and simply wants to be loved. It's not unusual for him to drop what he's doing, and come give you a hug. Those are SOOO sweet. Daddy is his hero, and Jessica is his Velcro twin. He gravitates towards her, and a normal 'picture' is to see Jess sitting somewhere, and Justen curled up right next to her, if not in her lap. She's just the most wonderful stepmom to both kids, and someday they will realize how blessed they are to have her as their other mom.

So, as we deal with this recent development, we pray for wisdom and guidance on how to cope. Our prayer is that if there is any damage at all, it's minimal.

If you'd like to know more about DiGeorge Syndrome, you can google it. It's pretty comprehensive for MY thought process right now, so I keep refering back to it.

Please pray for our boy-he's so special to us.

We love you buddy.