Wednesday, June 2, 2010

Lost in the dark..

It feels like Im on a whole other wave the worlds all on FM and Im on AM. I dont look at anything the same way anymore. Not like I used to.
Everything inside me is dying along with Elias. Like a hole in my core eating up everything good inside of me. I wont be just losing Eli I will lose everyone.. Including myself. The potential for not caring that everyone has inside of them is growing in me.. I know once Elias is gone most of me will have died with him. Im not religious and Im not sure I even have a soul..but If I do it resides in Elias.

O' Death
O' Death
O' Death
Won't you spare me over til another year?

But what is this that I can't see
with ice cold hands taking hold of me?

When God is gone and the devil takes hold
Who will have mercy on your soul?
O' Death
O' Death
O' Death

No wealth, no ruin, no silver, no gold
nothing satisfies me but your soul
O' Death

Well I am Death none can excel
I'll open the door to Heaven or Hell
O' Death
O' Death

My name is Death and the end is here.

~Jen Titus "O'Death"

I think its pretty fitting to how I feel.

Wednesday, April 21, 2010

His condition is worsening..

We went to the hospital on the 15th because Eli's "spells" were worsening and he has an increase in startle response to noises and sensations that he didnt have before. He was in there for 6 days 3 of them in the PICU (Pediatric Intensive Care Unit) getting the medicine he needed to gain a level of control. During his stay he had his MRI re-done; It showed his brain was noticably smaller than last time he had an MRI in November(They estimate 5%-10% brain loss), His brain stem is diteriorating as well causing the increase in his spastic movements and tightening spells. He is fighting to learn and make connections in his brain still so while his physical well being is going down he is still struggling to show emotional improvements. He smiles and laughs, and silly as it may sound I am excited to report he cried(Tears and wailing..the whole nine yards!), its something he never did before and it was in response to his back hurting after his Lumbar Puncture. Hes fighting to live his life so while doctors arent optomistic about his life span we will continue to fight with him and give him the best life we possibly can. I want suggestions on the things a kid cant miss out on.. We have already heard Cotton candy, Swings and Slides, and the Tooth Fairy. Any other suggestions are welcome! (Post them here or on my Facebook page)

Thursday, March 11, 2010

I've only made it through 4 steps...

I know there are five steps to accepting bad news.. Denial, Anger, Bargaining, Depression, and Acceptance. But I only make it through four and then I start over again or skip around between them. I feel like I'm supposed to be getting better and accepting this and its supposed to be okay by now. Its been months and it is harder and harder to be a normal person and put on a happy face day by day, not easier. When am I supposed to feel better? How long are these steps supposed to take?

I don't know who to talk to anymore. I feel like I overwhelm people and they just don't know what to say to me. I've thought about calling one of those support hotlines but I don't want to have to take the time to explain my story to someone before I get to the asking them what I'm supposed to do. I can take all the depression and anxiety medicine the world has to offer but until someone can fix my son or at least give me something solid to look forward to I'm not going to feel better.

My mom asked me in regards to my anxiety attacks what it is I think is going to the time I told her nothing but thinking on it now I realize there is something or things I worry will happen:
First and foremost I worry my son will die. That someday I'm going to go to pick him up out of his crib and hes going to be dead. I know its a demented thought but I have already been told once before he wouldn't live to a year and that still haunts me. Every single cough or sneeze of his makes me think hes getting sick and I have also been told he has a bigger risk of dying from normal colds that turn into pneumonia or trigger more seizures and fevers. Anytime I myself get sick I panic, automatically feeling like this is going to be the time he gets my germs are going to kill him. I'm not sure if I'm supposed to tell people that or if its something I should keep to myself. But like I have said before, I'm tired of censoring myself and putting on the happy face. I want all of this out there so people know how hard it is on parents like me.. I want to tell the truth the whole truth and nothing but the truth.

I also worry that because Elias turned out the way he did my next child will be the same... its such a rare chance but if it happened once why wouldn't it happen again? Am I supposed to just hope for the best? Roll the dice and see where they land? Or is it not worth the risk and I should give up on wanting more children in the future?

Its all too hard and too much to handle sometimes. Well....most of the time.

I'm just lucky hes so amazingly worth the struggle, I wouldn't trade him for the world.

Tuesday, March 9, 2010

When my son was born...


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.

How it feels (In my opinion)...

I want to start by saying I love my son more than (and in a different way than) I have EVER loved anyone else in my life. He is my everything and I would literally give my life without a second thought for his. But being the mom of a "special needs" son is more difficult than I ever thought possible....

I'm not sure if anyone will ever read this blog.. or even care, but I'm not writing it for you I'm writing it for me. And for my son. So that the next time I tell someone my son is the way he is.. they wont tell me "I'm so sorry." or "Wow how do you deal with it?". Your sorry doesn't help, it wont change a thing and only makes me feel like you pity me. And if you want to know how I deal with it..then read this blog I will tell you with 100% honesty exactly how I feel and felt and what my life is like now. I'm tired of putting on the happy face and telling everyone "its okay" all the time. Its not okay. Its the most agonizing and difficult thing I have ever done it my entire life, no pain compares to it and no loss measures up to it. And I want to write for everyone to read my sons story so far.. so when you look at him you see him for the amazing person he is and not his disabilities.

So here it is.. I hope the people in my life read it at least...