is knowing really half the battle?

we've been told a couple of times by doctors that caleb is "his own syndrome."

the caleb syndrome.

are those supposed to be words of comfort?

i don't expect the experts to have all the answers & to work miracles. however, it's difficult when we have an underweight, constantly screaming, constantly seizure-ing baby with no answers as to how to help him.

but we've learned to accept that this just may be the way it is with him. and when things improve, we are eternally grateful.

so far, the caleb syndrome consists of:

2-vessel umbilical cord
4 1/2 lbs birth weight
seizures starting at 10 days
an extra rib
a sacral dimple
a whole in his heart (which later corrected itself)
an underdeveloped digestive system
an ectopic kidney--means his kidney is out of place
cysts of water that line a section of his spine
two vertebrae at the base of his neck that are fused together
a weak immune system causing him to catch everything that comes his way (& usually it's twice as bad as the person who had it before him)
slow to develop physically (didn't walk until he was 2 yrs, & that was with physical therapy & braces)

so what does all of this add up to be?

the caleb syndrome.

which is a way to say, "we have no idea what's going on with him & we can't do anything to help him that won't cause him more trouble."

so here is my question:

is it better to know all of these things, or not to know?

i have always felt that knowledge is power. i have researched all of his problems, memorized all of his diagnoses and carried around this huge file of all of his tests & their outcomes so that i feel knowledgeable. empowered.

a while ago my friend rachel c. wrote the question "is ignorance really bliss?" and i have thought hard about this for several days. is knowing really half the battle? or does it just make it all so much more complicated because now you have something holding you accountable? and having the what-if's weighing you down?

with the new enlightening of caleb's current problems...the cysts enlarging, the vertebrae being fused...we were told that as of right now, those issues are not causing enough problems to need to do anything about them.

except that...

if we see any "new" changes, then we need to rush him to the closest neurosurgeon.

what changes are we looking for?

headaches
bladder control problems
poor posture
a decrease in leg flexibility
stiffness in his neck

we were told he can't play contact sports. what about his tumbling class? we ask. well it should be fine but just make sure he doesn't fall on his head because the fused vertebrae could cause major complications.

so when he's potty-training, what if he starts having accidents? well, just watch closely that his accidents aren't becoming more frequent. how frequent is more frequent?

the list went on, because we wanted to do our research, to be knowledgeable.

but i realized i wasn't asking the right question. which is:

how do we not become overly paranoid, overly protective parents and let this kid just live a normal life??

i feel that we have walked on eggshells since the day this little fellow blessed our family. specialists say "don't let anyone hold him, don't pass him around" "don't let little kids get close to him" "protect him" "don't let him cry it out" and "don't push him too hard." it is a lot to worry about on top of being new parents. but we listen, we trust, we put boundaries on everything.

and feel that we are inhibiting him from loving life. and instead we are turning him into a very careful, cautious child. and we as parents are turning into stressed out basketcases.

then we get to the point where we feel we're going crazy, so we just pray and try to stay close to god so that we can just do what is best for us all. but i can't help it that a part of me wishes i was living in ignorance. would i be a more relaxed, fun mom if i didn't know about all of these little quirks he is dealing with?

could he be...with all of these things...just fine?

but what happens if i say that to myself and just let go of it all and then something happens because i wanted him to be a "normal" kid...and he really isn't?

it's enough to make an overanalyzer like myself go just about mad.

which should be another part of the caleb syndrome. "this syndrome will eventually drive your mother insane."

so we will continue on with life as normal. going day to day, praying hard and acting in faith. and that's really the best we can do, right?