If ever there was a miracle, it has to be Damien. He started out so tiny, so frail. Born at 25 weeks he weighed barely 1 lb 11 oz. and only measured 12 3/4 in long..I remember looking at him for the first time and thinking "He's too tiny, how will he ever survive?". In the weeks and months to follow I would find out just how much fight this tiny baby had in him. He was, as the nurses referred to him..."a train wreck". Some of his problems included, meningitis, hydrocephalus as a result of brain absecces, speticemia, a grade IV brain hemmorage, a dual hernia, Respiratory distress syndrome. He barely escaped surgery for an open ductus, had to have a shunt placed in his head when he weighed barely 2 lbs...and another one several weeks later. Almost everything that could go wrong did. We almost lost him several times. but through it all he never gave up. Damien is a fighter! Finally, after 4 long months in the neonatal unit, he was ready to come home! What a glorious day that was! I was finally bringing my baby boy home! His prognosis was not good...because of the brain absesses, it left so much scar tissue that virtually the whole left side of his brain was non-existant..He failed both his inital hearing and vision screenings. The doctors said with the amount of brain damage that occured, Damien would most likely never walk, talk, or be able to do much of anything. However, lucky for us, we had a wonderful developmental specialist,Dr. Linda Nathanson, who gave me this advice: "Don't believe what the doctor's are saying. If they are able to tell you with certainty what Damien will be like, they have a better crystal ball than I do." "Take him home and love him, and start therapy right away." And so began the long journey of doctor appointments, surgeries and intensive therapies. It has been a roller coaster at times. Heck, who am I fooling, it's a roller coaster most of the time...to date, Damien has had 6 shunt surgeries, a surgery to repair his dual hernia, and lots of therapy! At 12 years old he is a peculiar mix of abilities.
He can walk on his own, though he cannot run. His speech is that of a 2 yr. old, although he can sight read over 300 word cards, knows his alphabet, numbers,shapes. He is learning to read. We are having much success, Damien is able to now read 3-4 word sentences. He is a delight (most times), always able to make me smile with I need it most. He likes Nascar racing (Jeff Gordon is his favorite), books, puzzels, and his Teddy Ruxpin! He likes to play with his garage and race track and hot wheels cars. He enjoys watching golf (Big Tiger Woods fan), baseball(big Yankees fan!), basketball and of course his train videos...from Thomas the Tank Engine to real trains.
Today we battle with ADD (attention Deficit Disorder), he is on Ritalin which seems to help quite a bit. He attends a special school which he loves! He works on a computer(his favorite thing)...I think he can operate it better than me! *S*
Even thought ALOT of days are frustrating and difficult with Damien (toilet training has been a nightmare) and we are now into puberty...so the hormones are in full swing and I'm dealing with aggression and screaming...through all this he brings great happiness into my life, something I would never have thought possible during those months in the hospital.
I no longer have any ambivalence about Damien's survival. I'm very glad he lived. I feel extrememely lucky...lucky that with all the brain damage that he sustained, he still turned out to be a fun-loing, affecionate, "bright" child! Sure, we have out good days, and bad days, just like any other family, and I have challenges--maybe more than your "normal" family, but somehow we get through them. How, you ask? With patience, love, prayers and alot of humor! Somedays, that's all that's left to do...cause if we didn't laugh, we would cry!

UPDATE: Damien is 15 now, and is living in a group home. Difficult adjustment for both of us. He is doing well for the most part. His toileting skills have improved immensely! This was our single greatest achievement this year.
His "obsessiveness" is increasing and we just started on a new medication called Respiradol. So now we wait and see if it will help. he continues to grow, and learn and that makes me somehow hopeful that his quality of life will improve, and he will continue to become more independent. Everyday is yet another challenge for us, but I am constantly reminded just how lucky I am to have Damien in my life!

If you want to see more of Damien, .Click On POOH!!

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