Merry Xmas!
a bit of a test- as I've gotten the Treo up and running, I'm considering transitioning to a moblog format for the Woodyblog. I don't know how this will handle the pictures, though. Until I get the kinks worked out, you can check my vox blog (norm.vox.com) for my general moblogging efforts.
posted by Nathaniel Hobbs @ 8:41 AM
1 comments
1 Comments:
Hi, this is Chris Hartbauer's sister. She just recently told me about your plight. I did not yet take time to read all of the postings but just thought I would let you know you are not alone. Briefly, I have 3 kids, 2 of whom had birth defects.
Christopher, 29 weeks, 1240 grams at birth. Asthma, hydrocephelus, 25 surgeries, 18 of them brain surgeries, in and out of coma's....now 19yrs. old, graduated last spring from high school, currently attending college, drives his own car, has a girlfriend and a part time job.
Brianna, full term, born with bladder exstrophy, (bladder on the outside of her body) 6 1/2 hr. surgery at birth, held her for the first time at 6 weeks old, when she came out of traction. Years of repeated surgeries, tethered spinal cord, numerous allergies (to most narcotics and most antibiotics, latex and milk products)thyroid problems, hypoglycemic, anoplasty, vaginoplasty, last summer 3 doctors performed a 12 hour reconstructive surgery which has rarely been performed in the United states.....now 17 y/o, a senior in high school, in GATE most of her schooling, now in most AP classes, also drives her own car, runs competitively on the high school cross country team. Our little family has now undergone a total of 57 surgeries in 19 years.
As you are learning, you have and will experience life experiences and emotions like you could have never imagined. If you ever want to call someone and just "lose it" because you can't take it any more....I would be more than willing to talk to you. It is always easy to find someone who will listen when things are goings well, or when you prefer to stay in a space to report facts of progress, it is another thing to find someone who will listen and truly understand on a broken heart level, on those days you feel like curling up in the middle of your kitchen floor in tears, crying..."I can't take it any more". That is when you can call me. People do mean well and you do appreciate the thoughts and prayers, however, there are times you don't need someone to pat you on the shoulder and say (though well meaning) "oh, it will be alright". The reality is there are bad days too, and it is OK, and actually healthy to give yourself permission to feel the intensity of those days. You have days when you think you are losing your mind...you are not! Believe me, it is those days and emotions which develop the wisdom, character and empathy to have a heart for others in the future.
In the event you have never heard of the concept, there is a phrase called, "chronic sorrow"...you having been granted a child with anything shy of "normal" condition, have now officially been intitiated into this club. If you would like more information about this or anything else, I have come to be quite a resource queen over the past 19 years. There are a lot of resources out there.
I would be willing to send you some articles and resources if you wish.
I guarantee, every little thing your child sees, and does for the first time, you will see and experience magnified because of his difficult early plight. The warm feeling in your heart when he gets those little league trophies, perfect attendance award, or simply swings by himself at the park for the first time, next to other "normal" kids, is indescribable. Many times you will see little things and just appreciate it privately inside of your chest and mind, the warmth is quite intense. When he walks up to get his high school diploma, take plenty of kleenex, you will need it. That sounds like a long time from now, but believe me, you blink and the time has passed.
Just remember the very most important thing that will influence his blossoming, perhaps beyond doctors expectation, is to frequently make sure he know he is loved. That is the most powerful contibuter to success in is little life. As long as he know that, everything else is secondary.
Kit Satre
(Veteran Medical Mom)
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