i started writing this blog because i wanted to share my story----our story. the story of a beautiful little boy who may have been a mystery to the medical world, but to me.....oh, to me he was everything true and sure and good about this life.
i researched until there was no more medical data for me to look at. there were no more paths for me to go down because i didn't have any more directions to follow. i was just trying to save him! i was trying to find a way to save my son's life, my precious baby boy.
i wanted to know what it was.
i needed to discover what was slowly stealing him from me. this was my job! i'm his mother and it's my whole life's purpose to protect my children. every moment that passed without answers was like an agonizing tick of a time bomb. i knew it was going to go off, it was all going to explode if i couldn't find the answers. BUT WHERE WERE THEY?? sometimes if i closed my eyes and tried hard enough, i could convince myself that none of it was real.....he's just fine, they can't tell me what it is because it's nothing!! there's NOTHING wrong with him! these milestones he's missing aren't important anyway, he can always catch up! he WILL catch up!! he's not hurting, or suffering. those sad little noises he's making have nothing to do with his brain shutting down and his body failing him. he's not getting worse...these aren't new symptoms of some godawful disease that is robbing my son of his life!! his breathing will be okay, it will get better. it has to get better! it all doesn't make sense because it's not really happening!! he's not turning blue, i'm just imagining it. he'll be okay in a second, he's NOT dying...he'll LIVE!...my son can still live because it's all okay and none of this is happening. it CAN'T be happening because i need him to live. i just want him to live.. i NEED him.......
i wanted so badly for none of it to be real.
but it was.
it's real and it happened and now he's gone.
i have no clue what to call the disease that stole my beautiful boy right out of my arms.
i still try and search but i have even less direction now than i did before.
i'll never stop looking.
i cannot describe to you the empty feeling that the 'not knowing' brings.
there are many days where i feel like i failed him.
it was my job to protect him and i couldn't do it. i tried so hard but somewhere out there are the answers i could not find. they are out there and i didn't get to them in time. and maybe i'll never find them, maybe i'll never know. but i just feel like i should have been able to. i knew him better than anyone else on this planet and i couldn't find the answers he needed.
i really just miss him.
there aren't any words to describe that missing feeling that's deep inside my soul.
it's too big, too raw, too real.
i love my son.
i will keep fighting for answers in this life because his life mattered.
i'm trying to go on. to live and love and find happiness and joy.
i come across these things and i choose to let as much of it in as i can.
i'm working on it, i'm trying, and i 'll never stop fighting.
happy Sunday to all of you.