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!

Beautiful

My hair is not long, in fact, its as short as short can be,
my eyes are not blue, they are brown, but they feel the deepest of blue somedays,
though im not really sad, mostly quite chipper,after morning caffeine, goes without saying...
not overly tall, average i'd say,
but my head can over see mountaines some days,
not over weight, but the emotions I carry could surely tip a scale,
somedays I go out and heads will turn, but in my mind,
I fear their eyes I mostly burn,
lack of self confidence only hits me sometimes
but if you want fears, I have plenty!
I have clevage, but not in the way you think,
its hy heart strapped on the outside of my chest,
and not knowing what the whole world thinks,
my husband thinks Im beautiful, even says im hot,
but my warped way of thinking, I say,
"its just part of your sexual plot"
but I know he loves me, not knowing why?
Ive sometimes been mistreated, even as a girl,
and often misunderstood, Ive never had the love I understood
I have witts and smarts to most unknown,
I don't sit and judge , its just how I make it around,
I will force for you a smile, even if its not real,
as quick as you blink, I can turn it into a frown
prettty I would say not, its not me,
I would love to tell that girl she's beautiful, we all have our turn,
that girl who is me,
but would she believe me, I don't know,
we all have our insecurities I guess
Ive just showed you mine,
my biggest fear is not just growing old,
but growing old without my boy by myside,
we all have doubts and fears we hide,
I just took you to my secret place,
of me, inside

inside my heart

If you could see into my past you may not like who you see
I did alot of things at such a young age, would be anything but smiled upon,
but if you looked into my heart, you would see, I was just a girl, trying to find my way, just wanting someone to be proud of her, love her.
I didn't always make good decisions, I tried things for the life of me I have no idea why, I hurt people not even wanting to, people hurt me, not sure if they were even aware.
But if you look into my present you will see, who I was back then has made me who I am today, you may not like who you see, I lived a life back then, today I have no regerets, but memories.
if you look into my heart you will see, 3 of the most beautiful children, who I try everyday to make them the best person they can be, I want them to outshine the person I use to be, and to be bigger then I am today, I want them to accomplish so much more.
when you look at me, you see a mom with 3 kids, one with special needs, you look at me and see someone to feel sorry for, you feel pitty, but look through my eyes, and you will see what I see, a life very complete, a very proud mom, with 3 kids who I couldn't love more, a boy with special needs, who has brought out a strength in me, I never knew I was capable of having, he orgonizes a part of my brain that is otherwise scattered, he fills my heart that before him, was searching for someone more to love, he fills that part of me that I thought noone could ever love.
Look into my future, I don't know what you may see, But I no longer feel the need to run from that girl I use to be, I will move foward in a walking motion, with memories I can bring with me, but have no shame, judge me, you might, but you can't say im not doing it right.
If you look into my heart Im a much kinder person but harsh and tough when I need to be, but still can be soft and I cry for reasons sometimes I don't even know...but
before I close my eyes at night, I think I made it through another day, and I pray that tomorrow we can too,
you look at my face, it always looks the same, maybe a smile if your lucky, they don't come easy,
but if you could see inside my heart you would see the mom, who tries as ahe might, and only hope she takes care of her boy right, but what will happen come that fateful day?? Its a world of fear where that part of my heart lives all alone, so before judging one, just try to first understand...

24

baby not yet born,pregnet at 24
at 25 so greatful she survived
miscarriage at 22 and again at 23,
there was noting left inside of me,
healthy baby girl, through c section,
she came into this world,
noting but joy
of tears filled my eyes,
being a mother has made me wise
life wasn't always easy
but thats no surprise,
a another gift from heaven
a baby boy, I was 27,
I wasn't always brave
as dark clouds rolled our way
as they covered the once so brigt sun,
our challenges now begun,
through it all we found our way
my boy was still perfect
in every way,
not much time to settle down
before we knew it, fate came around,
opened a new gate, pregnet again
baby boy was born, I was 28
now a family of 5,we somehow survived,
The roads been windey and sometimes long
I replay it time to time
like a facourite song
the lyrics they don't change,
but the music doesn't stay the same,
im a mom with alot of fears
but I move foward with no shame
I live a life now with my kids like so few
I can write you a whole story today,
Im only 32

because I want to

one thing Im proud to say I did right in my life is have kids because I wanted to. I was ready to be a mom, so if noting else,that I did right.
so when I found out my middle son had severe medical issues and would continue so through out is life, was I upset?? not really, shocked? yes, a little, would be lying if I said other wise, lets be honest, whe were an expecting parent, we all want healthy kids and plan for noting else,
but was I disapointed? NEVER!
I am my boys mother because I want to, not because I have no choice.
often I hear of cases were a mom or parents put their child in a om because tey do not want the responsibility of raising a child wit special needs, or maybe because they just don't have te know how, but what ever the reason it breaks my heart into pieces, was it that they didn't get what they ordered?? so the y go on to have other children, ones they were expecting to have all along.
Ewvery child no matter their condition deserves the love of their parents, after all, a child with special needs is still a child first!
Ive ad to learn alot over the years ow to take care of my son, it didn't come easy, but I did it because I want to , not because I had too, but the love I have for him is the easiest because I want to.
Ive had the advantage and privilege of learning from one of the best hostpitals in the world, one valuable ting Ive learned was suctioning,
they often suction kids in hostpital settings when the child is sick, to get up all the junk out of their chest they can't bring up on their own, this is not someting they recomended I do at home, but I learned how any way so I could do tis at home, not because I had to but besause I wanted to.
I wanted to give my son the best quality of life I could give im, and by helping im breath much easier was possible? I sure was going to do it, bacause I want to.
we are fortunate to have a pediatric team here locally to help guide through the everyday with my son and help where we may stumble, just to pick us back up and get us on track, we ask for their help and guidence not cause I have to , because I want to,
I want to give my son the biggest support team I can find, to encourage and always be on is side, because they want to.
my son requires 24/hr care, we ave little help at home with him im when it comes to respite, I chose to do most of it on my own, not because help is not available, but because I want to.
I want to make sure at all times he is properly taking care of, and treated well, because I want to.
when my son is sick and has to spend time in the hostpital ,I stay with him so he's not alone, and recieves the care he deserves at all times, I could leave im and pass im on tothe nurses and Doctors, but I chose to stay, not because I have to, but because I want to.
Nurses are may be school trained, Doctor trained, but they are not "mommy" trained.
there is alot of sleepless nights, but i get up with my son through the night every night, because I want to,
I want to kmow always that he is ok, and do what ever it takes to keep it ok. because I want to.
after many months of feeding challenges, we finally went ahead wit the feeding tube, not because we had to, because somewere inside I wanted to,
I wanted my son to stop getting sick all the time with phnemonia, and work hard to feed from a bottle, making his tube impossibley thick just he could swallow, it just ssemed cruel,I needed to take is pain away and make is life that much easier, no more struggle, not because I had to,
but because I wanted to.
I wanted to get to this point of him getting a feeding tube with no regrets,besause I wanted to.
after 18 months of my son continuing to throw up, and struggle to gain weight, we had the option of im getting a fundoplication, a opperation that would stop stuff from his belly make its way up his esophagus,
I chose to do it, not because I had to but because I wanted to.
the surgery was a success, my boy was getting sick less often and finally he was a healthy weight.
I chose to fight to keep my son alive when doctors told me it was a lost cause, and he wasn't going to pull through the night, I chose to continued to fight for im when they said, he's going to keep getting sick until he finally does die, I chose for im to live, not because I had to, because I wanted to.
my son, he continues to fight every day, some better then others, not because he has to, because he wants to, he has the will to live because I belive in him, because I want to ,
he's alive today not because he has to be,
because he wants to.
my boy is all he can be and because of im, im all I can be because together, we want to!

putting special over the need

like most kids with special needs, sleep seems to be the common issue mo matter what kind of need the child has.
My boy certainly has his share of sleep issues.
Most of the time, its just when he's not feeling good, he tends to be awake alot during the night when he's sick, im right there by his side, not just cause he needs me too, but cause as well, im very worried about him when he's not feeling well, I need to be by his side to make sure every minute he's ok.
Even when he is sleeping, I get up to check on him, turn him so he's not stuck in one position all night, and give him soem water so he doesn't get too dry, (an advantage to g-tube fed kids, is I can give him a little flush of water and not disturb his sleep) i suction him if needed, though the one advantage to him sleeping is he requires little if any suctioning.
He does how ever have this little habbit about every couple weeks or so, sleeping all day, from about noon till just about bed time, (and when I say sleep, I mean a freight train running through the middle of the living room is not going to wake this sleeping beauty) but you can count on by bed time, he's wide awake and ready to rock...ALL NIGHT LONG!
wich means more suctioning, turning, and just plane checking on him...ALL NIGHT LONG! but hey, what are you going to do right?? just means I require a little (and by little I actually mean ALOT more coffee the next morning)
yesterday was one of those days, he sleep alll day, but it was also one of those days where I was suffering from a terrible headache, I had it all day, every so often (at least twice a month I get them) no advil, Tylonal takes these headaches away, I just have to plane suffer:( but the show must still go on, I still have 3 kidws to look after, so we still went to the park, and our after supper outing, last nights outing was a walk, 2 kids sharing one scooter cause my poor 4yr olds broke on him on our way, out, so trying not to disapoint everyone, I had my daughter share hers, they would just have to take turns, and you can imagine how that turned out!yepp, lots od arguing, but we did it anyway, by the time night rolled around I was feeling completely drained and tired from this on going headache, the only thing I wanted to do was crawl in bed close my eyes in the dark and sleep! in peace and quiet,
but sure enough a little while just before bed time, my boys eyes POP wide open! looks like he was ready to party!
" oh, Johnathon, why this night of all nights"?I asked
oh well, I put him to bed at his usualy time, I can barely keep my eyes open they hurt so bad, I thought to myself,"this is going to be a looong night"!,
I put him down and went and layed down, checked on him once, suctioned as needed, I said," mommys so tired, can you please to go sleep so mommy can rest tonight?"
I went and layed back down, not even 20 minutes later I went to check on him and...HE WAS SLEEPING!!!!!
he heard me!!, he must have known mommy wasn't feeling well, and really needed some sleep,and decided to be kind to me and go to sleep!
waking up the next morning to no headache and a very bright eyed and happy boy!
He just makes everything right in my world, im so blessed everyday and truly happy he's mine:)
All 3 of my kids are my blessing, I truly have one of each, my Daughter(7) my boy (4)
and my special needs son(5) who really puts the special over the need!

define special needs?

I look into those big eyes, he has so much to say,
you don't need words to be heard, he talks to me anyway,
to some , he's just a boy in a chair, but he's real,
he see's all going on around him,what his eyes don't picture, he feels,
don't underestimate what goes through his brain, he takes it all in,
just look at his face, touch his hand, just the lucky ones, he lets in,
to his world of lovingness, and joy, he judges noone,
and for those who feel the need to judge him? they just don't know better,
and he will always forgive , its narrow minds that don't know him ,
he is our society, hes in your world, out and about, and look carefully, there are more ,
I get that some don't see with their minds what I know,
and I learned thats ok,my mind has been opened, and im so greatful for,
all this he's brought to my life, no its not always easy,
but the greatest things, they never are, but we make it through it
and for a boy who can only sit in a chair,he can stand so tall,
he's the bravest little man, bravest I know, stronger then all,
He's a boy with special needs, the needs are great,can't be met by all,
but the special is the boy, and child that lives inside,
a tiny boy yes, but look at his life, he's not soo small.

a little dose of wisdom from a 5yr old

I wanted to share this today, I thought it was just one of those funny little mysterys that happen in life, only I don't find it just a mystery, but worth sharing.
the sun is out and shining bright, much like it was not even an hour ago,
not having the best of morning, I had much trouble putting a simple race car set together my 4yr old got last night, fustrated and feeling like a failure as I often do... not being able to do the simplest things in life,I started feeling really down on myself and feeling a little sad even for my kids cause I felt they deserved a much smarter mom then they were giving,
as you may tell self confidence has never been my strong suit and I struggle with it on a daily basis, most the time in quiet but today, for some reason in tears,
so my husband came home for lunch as put the simple set together in a matter of minutes, not making me feel any better!
after noticing the set needed batteries, (something we were unaware of when we bought it), I decided to get over myself, and packed up my 3 kids to walk up to the plaza where we would buy batteries. the plaza is only a 15 minute walk from my house,although with 3 kids can be a little longer, but its a walk we often do.
Half way there, I stop to get on Johnathon as I always do, and he looked really red and flush, I felt his his head and he was burning hot,
in fear that he had a fever, I turned us all around and came back home,
I put Johnathon on the couch, his red face had disapeared, I took his tempature, it was normal, he no longer even felt hot?? well isn't that weired I thought, I guess its hotter out then I thought, (Johnathon does heat up faster then usualin really hot weather) but today wasn't an overly hot day, after being back home for less then 5 min. it starts pouring rain outside!!still sunny out but raining! the last thing anyone likes is to get caught in the rain when their walking, so could you imagine how a little boy in a wheelchair who can not move his head would feel?? well today we luckily were not going to find out!
some may say it was just luck, but I believe it was Johnathon.
No he does not speak verbally, but I still believe he talk to us, just in his own Johnathon way! I believe he was telling us,"its going to rain, I want to go home".
he saved us all from getting soaked(and me waering a white t shirt, was greatful)as I finish writing this, it now dark outside and raining heavy, but my spirits are brighter,
as for my other 2 kids, yes they were disapointed at first about our trip to the plaza being cancelled, but nothing that a couple of ice cream cones didn't fix;)

Johnathon

Johnathon is to me, just my boy and he's what people don't see
he feels, see your face, and knows my name,
inside he's no different, normal as can be,
on the outside he does things different
but in the end its all the same,
he does daily things in life,
and is loved more everday!
I look at him without trying to find blame
I have my perfect boy,
in him I find no shame,
yes his words can be a litttle quieter
but it is not gray,
he has a lot of joy and happiness,
and who are we to say?
it may just be he's in a better place
where he doesn't know dismay
in my boy ive found a soulmate
togehter we were ment to be,
and I would trade him for no other
hes my geatest gift that could be,
to know him is to love him
and he gives the same love back to me!


my boy Johnathon

.

the beginging (part2)

3 days in the local hostpital under the hostpitals pediatricians care, one thing I will never for get he told me, I often use the same word to describe my boy, I really did find it kind of funny, he said,'"your boys a conundrum",(Yes I will admitt I did not know what the heck that ment but after I looked it up, he was kind of right, I recently reminded him of that, he said he was glad I had a good sense of humor and was easy going) and Like I said I often still call him that, its become one of my favourite words)
I don't remember everything about thise 3 days in the hostpital, just letting my boy throw up on the floor so everyone could see for themselves just how much he was losing of his food, and FINALLY that Doctor said, "ya he throws up, like alot" , Well DUH! thats what Ive been saying for 5 weeks now, he was sent for a sweat test, but being a newborn still, they don't tend to sweat much so of course, it was inconclusive, after 3 days the pediatrican wasted no more time and told me he was going to kingston where he could meet with a team of doctors and a place that was better equipt to deal with such mysterious situations as my boys,
so off we went, to where I thought my boy was finally going to get the help he needed and he would finally get well(even though I had a terrible voice in my head saying something was terribly wrong)
WE met with the pediatrician on call for the week in Kingston (I was feeling so overwhelmed by such a big hostpital compared to Belleville, almost scared) he told me they would under go some testing and we would meet with a GI Doctor to take a look at him, "
"but for now" he said, "we will chub him up",
by that they just put an NG tube down his nose and put him on a formula he couldn't be allergic too in anyuway, Neocate.
'DID I believe this Doctor when I he said he could help and fix my boy?? yes, did I feel like he know what he was doing?? yes, was I wrong in the most painfully learned way? yes...

to be continued...

the begining(part one)

Going back to the begining when my son was first born and I was first introduced to the "voices in my head" being a mom already to a little girl not yet 2, it was some what easy for me to tell, there was something not quite right with my new baby boy. From the time he was born he use to continuosly spit up ALL the time,. and I remember trying to feed him for the first time, he had sort of a flappy latch to the bottle(yes he was bottle fed, after a terrible experience breast feeding with my daughter, I just thought this to be the way to go), it seemed as if it took him a bit to get orgonized enough to suck on a bottle. A voice in my head kept telling me somthing was not right) and his cry when he came out(via c section,due to my unability to have a natural child birth) was so small and quiet I thought. expressing my concerns with my new baby to the pediatrician on call, he told me he was fine, and all babies spit up. (because my daughter never spit up, it was new to me), but I still had voices telling me , this was not normal.
'Before discharge I remember well, they put my boy on a scale, the first time it showed he was below birth weight, they re tried him on the same scale, they said there was a discrepancy in the scale, your boy is fine, go home.
At home with my n son, he was still spitting up , never a projectile vomit, just a continuous spit up till I thought for sure there could not be anything left in his little belly, and still with a disorgonized latch to his bottle, I found him too, very sleepy, even for a new born, he would never awake on his own during the night to eat ( I remember all to well, how my daughter, cried the house down till you fed her), but everyone would say, "oh thats a good thing, he will sleep through the night no problem!"
, feeling so alone with my concerns, I often cried, knowing something was wrong with my boy, these voices were talking in my head, but I was the only one who would listen to them.
At the age of 3 weeks, I took my son to teh walk in clinic(my family Doctor was on vacation), he sounded so noisy in his chest, and he had a cough everytime he ate, teh Doctor at the clininc looked at my boy, said he was fine, jsut a small cold, I even expressed my concerns with the spitting up and of course, he said, thats normal,I even had concerns about how the top of my sons head had sunk in at the top, kind of like a slope, again, I was told it was fine, follow up with your family doctor. Feeling rejected yet again, I went home.
'Finally, at one month,(my boy, 4 weeks old) I got him in to see my family Doctor, he first put him on the scale, and with a look of confusion on my Doctors face, he put my boy back on the scale, and the horrible llok on his face, and the words I remember all to well today, "hes still at his birth weight"!
The doctor gave my son a quick look over, he looked at the sunk in head my boy had at teh top, he told me, it was a sign of dehydration, he walked out of the room for a minute, I felt so terrified, my fears were starting to come true, there was something awfully wrong, the Doctor came back in the room, and said, I just spoke to the Hostpital, when you leave here, you need to take your boy straight there, they will be waiting for you,.
Terrified, thats what I did.
the pediatrician on call( he was not a local pediatrician, he was just filling in, due to shortage od doctors), first the resident came in and took down all the information, even interrogating me, accusing me of not feeding my boy enough, letting him go hungry, never have I felt so upset, and confused, and ANGRY at the same time!! how dare they say I was doing this to my boy!! after weeks of telling people, anyone and everyone, even before he was discharged from the hostpital, that something was not right!!!, I explained to the doctor about his spitting up, and what do you think he said?? , ya thats probably normal he said, not to worried about that!(of course), he finally did, say to me, I clearly cared for my boy, and was not intentionally hurting him, Well..DUH, yes, I love my boy with out doubt, and I not only loved him, but was his only fighter, fighting was seemed an endless battle to show my boy was in trouble and needed help.I remember the Doctor saying to me, couldn't you tell he wasn't gaining weight?? how was I to know, he was tiny, yes, but he was still a new born, I see him everyday, of course I couldn't tell! then overwelmed with guilt and tears, how cold have I not known??, finally he gave me name of a new formula to try for a few days, a hypoallergenic one, to see if he could keep it down, while the whole time, kept telling my he most likely had cystic fybrosis. Then, i remember his last words, im going to reffer him to the hostpitals pediatrician, cause im actually retired, and well..im just tired,!, never so bad had I wanted to tell someone to get the hell out of my face as I did him!, so...we my husband , my baby boy and I went to the drug store, picked up his new formula and went home.
and we researched cystic fybrosis., no symtom fitted my son, even the spitting up, we was only spitting up small amounts at a time, just continuously, unlike cystic fybrosis, more of a projectile vomit, just nothing seem to fit at all, and the voice in my head, said that mean man of a Doctor was wrong. After a few days on the new formula, still spitting up, and now, my boy crying but barley making a noise, we were off to the hostpital to meet the pediatrician.
'under the pediatricians advice we tried him on another new formula, one that was thickened, for babies that spit up, and some stomach medicine to calm any accid down in his belly, I did ask why (at this point my son still had a noisy sounding chest) he told me it was most likley reflux, and that too would explaine his coughing while he ate, at he said of course, dont worry too much about him spitting up, its normal, babies do that, he sent us back home, just for a day or 2, he said, if when you come back , and he'
s still not gaining weight, we will have to admitt him.
fast foward 3 days later, and we were admitted to the hostpital...
'to be continued....