Sunday, December 14, 2008

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?

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?


Toby and Tammy said...

Good post. Makes me think (which is bad at this time of night!). I'm sorry you don't have an answer on how to "fix" these problems. I'm like you-I like to know, because then I too can do my research and try and fix or figure out what is wrong. This makes me crazy though and that's not a good thing.

On the side note-I'm ready to send you something! Should I wait till you get home or send it somewhere in Utah? Let me know.

Rachel H. said...

That is so totally frustrating! I am sorry there isn't just an answer...that you can't just KNOW. I wish there was something I could do to make it better...

You guys are sure troopers for hanging in so long...what great parents you are!

Mike and Jenny said...

I am sorry. What a frustrating problem. Being a parent is so hard sometimes. You never know if you are doing things right. I can tell you are wonderful parents and are doing the best you can with the circumstances presented to you. The Lord is over all and you will know what to do and when to do it. Good luck in everything.

cortney and neil said...

Lindz you are amazing. I think I would be the same way. If my kids get anything I am searching for it on the comp. Hang in there though.

Rachel Chick said...

It is a loaded question, isn't it? I know that as you stay close to the Lord, you will have the answers that you really need and there's probably no ONE answer for each situation. Fortunately he is the Lord's son and He will direct you. You have such a sweet little boy! I am SO excited to get to see him again! I really think that having another baby will be so wonderful for your family! I think that it will help balancing things out a little and give a new perspective. I'm so excited for you!!! So, speaking of seeing you all again, :) when are you guys going to be available? Right now we're planning on being down Christmas day and staying through the weekend. Maybe we could get together on Sunday? Or we would LOVE to have you come up to our cabin for a day (or as long as you'd like!). It's up in Kamas, toward the Uintas. YOU WOULD LOVE IT!! And it would be A LOT of fun!!! Let us know!

garrettandbritt said...

Oh Lynsey, I am so sorry. I know as a parent we just want our children to be well and safe. Sometimes we don't have all the answers and that is really frustrating. I think you are doing what our Heavenly Father would want you to do. Be wonderful parents,trust in him, and he will give you comfort. We will keep you guys in our prayers.
On a side note, could you e-mail me your address. Thanks!!!

Lauren Horsley said...

You are so wise - I am amazed at how you take all of these hurdles in stride and have such a faith-filled perspective. Unfortunately, the "knowlege" is really the parent's curse, and it's something we all struggle with from time to time (though not nearly as intensely as you do with all of little Caleb problems). The rest of us get to hang out with your sweet boy and just enjoy his bright mind, clever wit and gentle spirit without having to carry the burden of "knowlege" about his conditions and their potential. But I still hold to my belief that it is better safe than sorry in any situation, so that you can say "I did everything I could" instead of "I just wish I would've known so I could've done something".

Hang in there, Lyns. You are doing a great job. UNDERPANTS!

Francis and Fawn Becker said...

Well I will tell you one thing, Caleb may have been given many hurdles in life but he has one big advantage--GREAT PARENTS! Oh, and don't worry about now being at the ward party to help, I showed up early and told them I was faux Lynsey and I made oodles of punch :) Granted my hair is not nearly as fabulous as yours but I filled your shoes as best as I could. Oh and you did not miss much except some boring and long musical numbers. And, please keep in mind that we have minimal singing talent in our ward. So when I say long...i mean LLLLOOOONNNNGGGG! But I must say the punch was yummy--ha!

Andrea said...

Caleb was sent to you two for a reason - because you are the ones who need to raise him...and you are doing a spectacular job. Truly. I always have to remind myself that before they were mine they were HIS and as hard as it is to imagine HE loves them more than us...that each experience we are given( our children and us too)whether painful or pleasant will help us become the people we are meant to will be so much more empathetic and understanding( hard to imagine you could be more than you already are!!!) as a result...Caleb is a strong boy who has great things to do and this is all part of it...

Amanda said...

You need to add one more thing to The Caleb Syndrome... CUTE CUTE CUTE!

Garry and Mindy said...

So I can't relate to the little things Caleb has working against him, but I can relate to the worrying about what health issues should I stress about and what shouldn't I worry about! But seeing Caleb so happy and cute now gives me hope that my boys will outgrow all this preemie stuff and become happy (and hopefully cute) boys!

The Hunter's said...

wow, lynsey. I had now idea. You and ben must be amazing parents. Caleb is so blessed!

Doug and Tiff said...

i am so sorry! you (meaning me) really take for granted when your children are healthy and you complain about them throwing a temper tantrum in the store, you think it's the end, and really that doesn't even come close to comparing! but i think knowing and having the knowledge is really the best thing. it's better to be safe than sorry! you are such a great mom and you will be truly blessed for what you are doing for your sweet boy!!