[WARNING: I'M GOING TO BE EMOTIONAL AND DRAMATIC, BECAUSE IT IS EMOTIONAL AND DRAMATIC SO DEAL WITH IT]
When Elias was born he was PERFECT.. Absolutely adorable and he never cried! I thought I had won the baby jackpot, he slept all night long and ate like a champion and NEVER EVER made a peep. Little did I know that my perfect baby had something wrong with him from the day he came out.
At around two months old was when we started noticing something was different about him..He started doing that startling thing babies do(when they jerk all of a sudden like someone scared them) more and more often and when he should have begun following things with his eyes he never did.. he was always staring off into space or looking in weird directions. To be honest we didn't know it wasn't normal, my mom actually pointed it out to us long before we admitted it ourselves and believed her(its easier to believe mom is wrong and hes okay than believe she knows her stuff and hes different) because some other people told us maybe he was just taking his time and everyone moves at a different pace when they develop. Which for some kids is probably true but for Elias it was a warning sign.
When he was around 3 months old he started his muscle tightening that doctors have described as looking like seizures but since they aren't seizures they deemed them "spells" so for future reference when I say "spells" I mean him tightening up his arms and legs and either stretching out stiff as a board or curling into a ball.
To let anyone who hasn't seen him and his spells at their worst its like this....if he balls up he curls his arms in and pulls his legs and head into his chest and screams bloody murder all while looking at you with absolute panic on his features...or in the scenario that he moves like a board he pulls in his arms in and straightens out his legs and arches his back like hes a bridge..generally during this he has a look of terror on his face and his mouth is wide open like hes screaming but no noise comes out he just holds his breath until he turns blue from lack of oxygen. Now to most people this sounds awful...and most people are absolutely right, it is. Watching him be so stiff I cant with all my strength (although I wouldn't want to try because it would hurt him) get him to change position and hes either screaming at me with all his might or not breathing at all; and I have to watch...helplessly..and let it happen. Is AGONY. Its like some unseen force is strangling me and ripping out my heart while every bad emotion I have ever felt courses through me until I nearly explode from it...and at his best it happened once every hour, lasting from 3-5 seconds, and at its worst it happened every 5 minutes or less and lasted 45-60+ seconds at a time. Until around 5 months old when he had his first actual seizure, three of them to be exact. We took him to Doernbecher's emergency room where he was instantly surrounded by doctors all freaking out about what to us had become the norm for him. He was admitted and after a few days of testing and medicine and doctors and interns and students and nurses and anyone else who came in the room telling us they had no clue what was wrong with him but he was "so cute!" we saw an eye doctor(three of them) who all agreed he is blind...
I'm just gonna let that stew for a bit while you imagine what it would be like to be told your first and only child will never and has never seen your face. That all the endless possibilities for his future and accomplishments were just cut in half...if not more than half. If you cant imagine it for yourself I can assure you that at the time it was the most world shattering thing had ever felt.. like nothing I had ever wanted or would ever have would matter to me again because the things I wanted for him and know he deserves were no longer options. That whole suburban white picket fence perfection I had in my head wouldn't ever happen because he was deprived of something. Little did I know it was only the tip of the ice burg.
At 7 months his "spells" reached their worst and we had to take him to Doernbecher's E.R. again....but let me stop there and tell you that just before this hospital visit he saw many other doctors. Specialists of all kinds of things, among them a geneticist who told us he had a disease (before he knew for sure that he actually had this disease) that was going to kill him before he was a year old...Yeah...I was told my baby was going to most likely die. Not only was he now from what we had been told blind and had his "spells" but now we thought he was dying. If I thought the blind news was bad I realized I would give anything for him to be blind and get to be alive. I begged a God I'm still not sure I believe in to take me over him, make me blind, have me die, anything just to save the most wonderful person in my life and have him be okay and normal. Three days later I had to call the doctors because I hadn't heard from them and was told by a nurse the test came back negative.. he didn't have the disease and wasn't dying anytime sooner than a normal person. I guess maybe in some small way God answered part of that prayer.
But back to 7 months old... He was admitted to the hospital where he was finally given the MRI doctors had been telling us he needed in order to find out what exactly was wrong with him. His MRI showed his brain was much smaller than it should be and had "significantly more damage" than the doctors had thought before. He is permanently and irreversibly brain damaged. To quote the doctor "He will NEVER develop past that of the 7 month old he is now" never sit up... crawl.. walk.. talk.. never go to school, or have a girlfriend, or do any of the things he had left over after already being limited by blindness. He will not only NEVER see me..I will never get to have a conversation with him, or hear him say momma.
I wont get to see my son take his first steps, or brush his own teeth, or ride a bike. Things other people take for granted everyday he will never get to do and I will never get to see him accomplish.
Not much has changed since then.. his "spells" have gotten much better, and he makes more sounds than he used to. But he still doesn't hold up his head much or sit up or crawl.. He is in almost every way a newborn. His doctors have now at 11 months old summed up his disabilities as Cerebral Palsy and Cortical Visual Impairment and he will be like this forever.
So if you want to know how I "deal with it" the answer is I don't. I'm so scared for my son that some days I cant even function. I hate to admit it to everyone but I cry every single day..It never gets easier, or less painful. I think it will always hurt, because I will never stop hoping for a miracle or I wouldn't be able to go on and a miracle will never come.