As I've mentioned before, I've spent hour upon hour reading every bit of information abouthydranencephalythat I can find...you can just about call me an expert. If I don't know off of the top of my head I have folder after folder of websites that can give me the answers I need, not to mention groups of support from others who may have the answers because they share my life experiences on that level. I've always felt at peace knowing every symptom of complications associated with the condition, at ease knowing what to look for in regards to arising problems. Sometimes, that peace of mind is far from a blessing though.
There are days when things aren't sunny and optimistic. Right now, for instance,Braydenis teething and has been for weeks. Not just one tooth, but his entire frontgum lineis swollen with multiple teeth about to break through. Teething isn't fun for any baby, even with my "typical" girls we had a terrible time with fussiness, fevers and the other lovely side effects associated with something seemingly so small as teeth growing in. There's a huge difference between the two, a difference associated with a child that is going through "normal" developmental milestones and a child who isdeemed"medically fragile". Those seemingly normal events become a huge added source of uneasiness, maybe not for everyone, but certainly for me. If someone is reading this that has found a way for it not to be a hugestressor, please feel free to share your story!
When a different cry, or a funny bat of the eye...or oftentimes even a lack thereof...becomes something you become so concerned with that you have the Neurological Department at the nearest hospital on speed dial and have dialed them 10 times in one day, it's not fun. I haven't literally done that, but I've been very close a time or two. I have, however, made the dreaded 911 call out of shear panic over a coughing spell that turned my baby's face blue. He was fine before the operator had even hung up, but it put me in such a panic I thought theEMT'smay be headed to revive me instead of my baby! Most of the concerns that arise, aren't becauseBraydenseems to be in some sort of trouble, but because I worry that I'm overlooking something. Often I'm recognizing an experience of another child who has had not such a pleasing outcome in the end, all because doctors didn't know what they were looking for in the beginning. At times, I almost obsess over wanting to be sure that if they don't know, I do...and that nothing is ever overlooked as being just nothing to worry over. The minor woes of other mom's battling a pesky cough, an ear ache, or a little fever means something much more to me than to them and I wonder why they worry more than I do at times.
That's only at times, most of the time I keep it together nicely and calmly and remember that not everything will become a problem. He is just like my other children, he'll have good days and bad and will feel better at times than others. He will have moments of cooperation, and times ofstubbornness(in that aspect he proves that he's indeed my child~ha). But, I have to remind myself not too look too deeply into every little thing, because that's when the sense of panic sets in. That's when I feel that knowing too much, having too much knowledge becomes powerful...but not in the sense you would at first think.