another day, another chapter

I really thought after my last post I was done with writing(by the way did you read it? its called the last time), but I may have been wrong, just as the old thoughts were clearing out of my head, some new ones took up redidency:(
after just coming of a loong 9 week hostpital stay(minus 4 short days spent at home)with my son, 4 of those weeks being in the ICU stay where my had been put on a ventulator, his failure t exchange air properley due to what I like to call, muccified lungs! muccus so incredibly thick, there was just no way for him to clear the junk out himself, with very little almost no cough..
Im now finding it hard to get life back to normal, even more so, im finding it even harder to tell who is genuine and who is fake? no peole really care? or are they just trying to cover their own ass?? theres the people who have made things to terribly wrong for my son, things that involve the chair that not only does he sit it, but is dependant on as we would our legs , or our motor transportation to get around from place to place, its a set that I have been complaining about for so long now, but my voice really went on heard, and theres others too, like one that watches the curve in his back develope and yet tell me everything is go, keep up the good work,at point do people pay for making my son sick? for hurting him this way??well the answer to that is pretty simple, they don't... and at the end of the day its me! im the one that went about things all wrong,i didn't notice things getting worse, I didn't make my voice louder to make sure it was heard, I let people fail my boy, and I myself, the one person in his life that should never let him down too had failed him..im slowly picking up the pieces and moving foward with plan and for once, getting the right people involved and surrounding my son with people who really can and want to help... but I can not look back over the past few years or look at my boy and not see the damage I may have caused, and what those long term effects may be are yet unknown,
how will he ever forgive me? he doesnt even know it was really me, how do I forgive myself??tomorrows another day, and another chapter has passed, just wish I could rip out the last couple years worth of pages and re write them, I reall good and talented writer would be able to do that...
I guess im not so talented or so great after all,

the last time

I swore that the last time this would never happen again, my tears fell hard to the floor,
HOW did this happen again? who is to blame?, pain still fresh from the last time,
I swore this wouldnt happen again...
I give him my all, bring him alive for the whole world to see, I gave up the other part of me, our souls became one, only for me to be be,
I swore that the last time this would never happen again...
here we go, just a short time again, where did this start, how do I not let it end?
our world and life together has just beggun, thou feels like running on 1000 years, pretending I know everything, does anyone see through my pain and understand my fears?
I swore the last time this woulnt happen again...
I sat in the chapel wondering if I had the right to pray, when everyone around me was asking for the same,
please lord, I gave him my life, dont take him away,
I swore that the last time, this wouldnt happen again...
but here I sit, again at your door, just give us more time,
when time is all im asking for,
I know the day may be near, but its not for me to decide,
but when that faitful day comes around how do I say goodbye?
maybe i can go with him, staring out a 7th floor window,
How great it would be to fall,
I swore that the last time, this would not happen again,
I want the pain to go away, I no longer want to cry, I want to live
with him always..by myside. so when that day may come I will not say goodbye,
I will go away with him, so he won't be shy, together we wont cry,
I swore that the last time, this would not happen again...
I failed on my words, we went there again, I look back on my mistakes
while I just sat and help his hand, where ever you go, I will be there with you,
but dont give up on me, and I will fight for you,
i swore that the last time, but how do I stop this from happening again?

I look into those eyes and this is what I see
A bright eyed boy looking back at me
Through times a tough and my hope fails,
I need to keep going, my thoughts derailed
I believe in my boy, he will tell all
I try not to lose faith, and let him fall
im always on his side, with my spirit run down
I search for the light, then stand my ground
I remember why we're here, my job is clear
to bring him alive, the boy they all fear
As the days go on, patience run thin
but there's a battle in him he always wins
I'm sorry for the times I let you down
I try to stay strong, not show my frown
There's something about you my boy so rare
and with the rest of the world I want to share
just who you are and what I am
some day soon all will be right again
to my johnathon, my son, my friend,
I will believe in you, fight till the very end

hostpital bound and powerless

Ever since I had kids all I ever wanted is
to do all and be all they deserve and need me to be,
so its without doubt that I would be the same
with my boy.
Im his only care taker, im the only one who takes
care of him 24/7, when he gets sick, i become
overwhelmed with guilt.
I replay in my mind what I did wrong? Even though
logic says kids get sick, that's just the way it is?
but...for my boy, when he gets sick, he can get
REALLY sick, and end up hostpital and those Hospital
stays can be VERY Long, and very lonely.
I stay by his bedside day and night, never leave,giving
me alot of time to think, and...thinking on lack
of sleep and nutrition can be dangerous.
I start questioning, is he getting better?
Is thhe treatment right? Is he in the right place?
Do I have the right people in his care? So on
and so on....I hate it, at home I always know
just how he's feeling, and what may be wrong, and how to fix
what may be wrong, here Im powerless, I know lonnger
know, and im powerless to help him, powerless
to fix him and make his world better once again
Here i have to put all my trust into ONE person
to be the one to make things right again and send us back home
to our family, who on top of a hard hostpital
stay with a sick boy, I miss with all my heart

While my other 2 are being well cared for my their dad,
I feel like a part time mom, and is so unfair to
those kids, they are without a mom, and I hate missing
so much of their little lives, cause their only
little for so long,but at the end of the day, I need
to be where Im needed the most but that doesn't
stop me from crying mysellf too sleep at night.

When Im assured my boy is gettting better it
helps make the day a little more barable,
I spend so much of my life telling others and
assuring others just who and how my boy
is,and trying to just stay focused day to day,
when when we're here and he is sick, I just want
someone to tell ME everything is going to be ok,
I want my turn to be assured.
I have so many quuestions, there's answers I need
but when you get a doctor for all of 5 minutes a day,
you become frustrated and hopeless and even feel abandoned
Logic knows the Doctor is busy and has many other
patience in a day, but my heart only knows my boy
is sick and that there is nothing I can do to
make it all go away, leaving me, sad, powerless,

This is what's its like to be the mother of a sick
boy in the Hospital,
at the end of the day, I just want a healthy boy once
again and tooo go home.

3 little wonders

I was reading a twitter friends blog today, at the end she asked,"what are some of the things that make you happy?
without having to think to hard, the answer would without doubt be my kids.
all 3.
I don't mention all 3 kids in my blogs, I talk mostly about my boy with special needs.
Its not that I love him more, or spend more time with him,
I write about him mostly in hopes to get the world to see him as I do.. or even any kids with special needs, I my hope is for people who see these kids who may look a little different yes, but are still kids inside.
I hope that when you see them, you will think of the struggle they have to go through on a daily basis just to survive another day, but inside there is still a child that just wants and needs to be loved, just the way they are.
my boy may not be able to talk to you , but he speaks right to my heart every day,
he eyes so big that when hes happy they sparkle and are so bright, through those eyes, he tells me when he's not feeling good, when he's tired and when he's happy, and through those eyes, he tells me that he loves me!
all 3 of my kids make me complete, they've given me a true purpose in life, being their mom, they fight alot and very loud at times, but I take no day for granted, as they are growing up so very fast,
they are so hungry for knowledge, they have so many questions about everything, they just want to know everything there is to know, though I dont always have answers for their on going questions, im so very proud about their willingness to learn and to conquer, they are going to do so many great things with their lives, and I can only hope I had a small part in what they are doing, who they are and who they are going to be.
my 7yr old, is school smart, she can read beyong her years and write stories in her journal that lets me know whats going through her mind,
she loves to win in everything she does, she won't be defeted, I feel sorry for anyone who dare challenge her, and she is beautiful, in the most beautiful way, inside and out.
my 4yr old is smart in a dectective way, absolutley nothing gets by him without him noticing it! he will know anyones name that walks by him, he has to know everything about them, he's not affraid to fit in with a crowd, he just joins on where ever he feels like, I dare anyone to try and stop him,he loves sports, anything with a ball, he's got the build of a football player,hes got the biggest heart, loves to hug everyone good bye,he also has the loudest scream and biggest temper of any boy I know, but he makes up for it with his quickness to appologize, hes cute as cute can be.
both my kids are each others best friends and together can get through anything.
All 3 kids have the same big dark brown eyes that can read my mind and talk to my soul, so full of life and wisdome, and their always full of hugs and kisses, and I love u's.
As for my 5yr old, I've already wrote about just look back on my previous blogs!
I love all 3 of my kids equally , but each in different ways, I love them for the person each one is, and are going to be.
its alot of work being a parent, noone ever said it was easy, so if I need a little pick me up or boost just to get modivated? I turn on a motley crue song, that always get me going, and motley crue is another thing that makes me very happy:))

message for my son

I knew from the start
I felt it in my heart
but I loved you anyway
something not quite right
we were in for a fight
but I loved you anyway
when people would sigh
something wrong, I don't know why
I loved you anyway
through time and tears
came true our fears
but I loved you anyway
you may not walk,
I only dream of your talk
but I love you anyway,
when the world gave up
I still held your hand
I loved you anyway
and they may not understand
but your fight was my demand
and I loved you anyway
my smile gets turned upside down
by just the warmth on your head
but I love you anyway
better days always come around
you never let me down
I will always love you anyways
how somedays I feel so alone
how to take care of you only,I know
but I love you anyways
with our darkest days
now seem a haze
cause I loved you anyway
no matter what comes our way
just know we will be ok,
cause I will always love you anyways!

camping? why not!

Sadly summer is coming to an end, it seems the older I get the faster it seems to come and go.
my boy has had his best year yet, from last winter till now, he as been sick very little, wich means alot less hostpital stays, even during the hottest of days, my boy does not tolerate heat very well, it has in fact landed him in hostpital in past summers, though he still does not like the heat, and humidity and him are like enemies, he still made it through a winner!
So, in our goals to keep life as normal for all my kids, the best we can, this summer we went camping!,
Im not a stranger to camping, I spent te first 23 years of my life camping, at the same place with the same friends and family, doing some fun things (some not so great at such a young age, but fun anyway) but those camping days were much different, all I ever worried about was packing a bathing suit and a cooler of beer.
well, when you have kids, things are a little different, especially the BATHINGSUIT!
so 3 kids, a wheelchair, suction machine and camping? ....why not?
We ended up buying a tent trailor, then we bought another one, reolizing the first one was going to be a bit too small, why a tent trailor I have no idea! it seemed like a good idea at the time,
our first camping trip was good, but as Ive come to reolize in life, theres not so many places wheelchair friendly, so its just up to me, to make them wheelchair friendly, not that you won't catch me uttering not so nice words time to time,
we did need to get a campsite with water and hydro, alot of my sons equiptment including a few of his medications are given through nebulizer, so we need hydro and water to rinse things out and to do a quiclk wipe clean, seriously 3 KIDS!
my kids loved it! everyting about it, playing in the sand, swiming at the beach and the camp fire, im a very responsible mom, but one thing you can know about me is, just cause I have a boy with special needs, life doesn't have to stop and I can still have fun! SO, maybe the bathingsuit changed a little, but the cooler of beer didn't, its ok to sit around the fire have a beer or 15, and if I stumble on my words rest assured im always in "Johnathon mode" I will always without doubt be able to take care of him, without missing a beat!
our second trip was even better, family came wit us wit their 3 kids, so altogether we had 6 kids, but we also had 8 sets of eyes, there was always help when someone needed it, we shared everything and our sites were combined and things seemed more accessable, we spent more time at te beach, my 7yr old daughter grabbed the whole attention of the beach by her determination to jump off the diving board into the lake, and after 45 minutes she jumped!! and everyone applauded her! but she did not jump again, still I was very proud:))
later they the kids (my boy not included) got to go on a hay ride, there was a corn roast with dancing and just plain fun!
the only thing, my boy has allergies to almost everything out doors,and the next morning they seemed to act up a little more then normal, but I brought my good friend benadryl and the back up police, ventolin! worked well, he was good to go, just in a sleep motion.
so point of story, camping can be done, and if you feel like a beer at 10:00 a.m. in te morning its ok, your camping, everyones doing it,
ok so the real point of the story, camping can be done with my boy with special needs, wheelchair at times was difficult to get around, but I had help and we managed just fine, though I'm looking for a bigger trailor, a regular trailor, the tent trailr is just to much to pack and unpack, and try as I may, it just was not wheelchair friendly, but....
I will go camping again!