success

This year was a mile stone for us, as my youngest ventured off into his own little world known as School.Our life at that moment became surreal to me. Of course I was sad, my babys first day of school, But also , he wasn't sad he was leaving me, no tears, tempers about going, NOHING! I got nothing but pure joy and exiement from him about going. Then it hit me...this is a good thing! I've somehow by the luck of God raised 3 confident kids, who all have a real zest for life, who are not afraid of change, who are ready to take on the world with no fear. My 8yo stared grade 3 this year, and lets face it, she was born with a pencil in her hand, she loves school and always has, this year she was exited to star school , she couln' t wait to see what new things she was going to learn,she keeps talking about being on stage someday somehow and she doesn't care what she will be doing " because I can do anyhing,and im a real good at singing too" she says, and she can act out anything, all thanks to a play I took her to see when she was 3, "The Wizard Of Oz" Shes determained to do what ever it is she wants and she doesn't stop trying until she perfects it. I pitty ANYONE who dare sand in her way.

My youngest is a real fireball whos lifes mission is to KNOW EVERYTHING, including everyones name, hes quick and can figure anything out, the things that come out of his mouth are beyond his years sometimes, other times he has you keeling over in pain from laugher, and hes always humming and singing and DANCING, hes ALWAYS dancing!

Then my middle boy, he doesn't and will never be going to school, through all his complex needs , and all he has going against him hes a FIGHTER! he has the real will to live,he just fights through what ever lifes dishes to him , it may take longer others times then some but he comes out smiling , he doesn't care about the kind of house he lives in, what toys he doesn't have, the fact he can't even tase the joy of food, he just wants to be loved! and he loves right back! He has the abiliy to touch the lives of all the people around him. He has taught me the real meaning of life, and love, and to just enjoy the pureness of each day, all the little things it has to offer and to take nothing for granted,,we are ALL on borrowed time. This is a brief summary of my 3 kids, my hearts greaest joy, and how I measure my Success, its not the size of our bank account that matters, the car we drive, the house we live in... its our family and all we've accomplished together through good weather and bad.. and my kids, well rounded, confident , ready for the world , and im so proud to say I was apart of them turning into the wonderful little people they are growing up to be... thats my success, whats yours??

landslide (confessions of a mom of a special needs boy)

So here I am... this post is a mixture of landslide(song by Stevie Nicks) and confession... confessions I have being a mom of a special needs boy, its just not all glitter and fame!


 First off, I don't like writing blogs, not at all, though I truly enjoy reading other peoples blog, it gives a glimpse inside their world , getting some idea of who they truly are, but for me, it feels like an insult to what I really want to write, a tell all book of raising a son who is medically complex, through his 24\hr care, and how we make it through another day, and at teh same time, trying to find some normalcy for our family and other 2 children.
Somehow I ended up turning to blog writing now and then, and that makes me feel like a bit of a quitter, but I did manage to write some memories down both good and some not so good.

 As always there is a theme song as there is to all my posts, this one is "Landslide" the origonal one, by Stevie Nicks, I like all origonal songs best, and I can't beggin to tell you how I feel about those nasty Dixie chicks doing a horrible, butcher cover of it, FAIL!!! who even likes those girls anyway?!?
http://youtu.be/WM7-PYtXtJM

 As I look back on my life, there is a big part of me that wants to reach out to that girl that use to be me, a girl that was mixed up, dazed, and lost , and i want to give her a big hug and tell her its going to be all right! and maybe let her know that running shoes and dress pants was not okay, no matter how cool i thought I looked! and that hair really wasn't working for her!( lets just say , im glad no one really gets perms anymore)
I like who I am today, a lot better then who I was, im stable, I have a functioning brain(most the time) and I have my priorities order, and I have my kids to thank for that, and my son, my special boy with speial needs, thanks to having him, makes me feel like Ive grown into my own skin, And it doesn't hurt so bad when I look at that girl in the mirror, that same special boy has also taught me whats really imporant in life, and that petty things, are just that, petty!
 Having said that doesn't mean I don't get sad, or wonder what might be, if I didn't have 3 healthy kids, no issues, just the regular stuff everyday parents face,
I think about time to myself , and how very little of that I actually have, and what it must be like to just get up and go.. to have a regular babysiiter, a night out just my husband and I? or a girls night out, to ask crazy and do things that I will regret the next morning, but knew that it was still fun!

 Then I get guilt ridden! I instantly feel bad for having such thoughts, and I should be punished! and when my son falls ill, I feel that was my punishment for ever thinking such things. those voices in my head coming back to haunt me...

 Truth is, even though i may wonder, i wouldn't trade my life o my son for ANYTHING! I love both my life and that boy endlessly, truth is, I have respite money set aside, I could find a qualified erson to help with my son, But i always find reasons not too, saying they just don't exist, cause in my head they don't.. i feel noone is as good as me to care for my special boy, and a part of me doesn't want there to be, cause then it takes away from me, that someone may be better, and as good as I am at taking care of him, it will take away what im so good at, making me feel, less important, undoing who ive become, who I feel I am today.. feel free to stop reading if this makes no sense!

 I also wonder time to time, what my boy would be like if he was like his brother and sister?
would he still be a quiet boy who doesn't say too much? would he also do as he was told, ? would
he sit quietly and play, ammusing himself, stay out the fueds his brother and sister get ino daily?would he be the boy that if I didn't see him wouldn't know he was there?
then I look at him and who he is, and i smile, he's my perfect boy anyway.

Theres not always answers to why kids have special needs, doesn't mean i don't wonder what went wrong?  Just don't believe " its just Gods way" theory, why wold he want this for kids? innocent little creatures who never even asked for life, it was just chosen for them? so yes, I do blame myself, ive never addmitted this out loud, always said the oppsoite, infact, I did everyting right during pregnacncy , but i can't help wonder, did i miss something? not feel something when i should have? or feel something I shouldn't have felt?
truth is, I often feel this isn't who my boy was suppose to be, but I didn't get him the help he first needed when I felt so hard there was something wrong, noone would listen to me, noone would hear the cries of a mother who repeatly said, 'theres somethig just not right with my son"! by the time it was proves i was right, it was too late, to much time of a newborn life was waisted, and now my boy pays the price, of me not shouting louder for someone to listen, I feel i didn't fight hard enough then, and now it seems all I do is fight, I fight to get him the care I know he needs, I don't let anyone try and tell me what he needs, if I don't like the care he gets, I go elsewhere, I fight to keep my boy alive when others felt I should let go... now I know the game, I know how to fight, but did I back then? tears and anger for mysef overwhelm me, i can't go back..

 My tired confession is just that, Im tired! there are some nights, I just want to drag my tired self to bed, and not worry about carting up feeding/suction supplies behind me, or have to get up every few hrs to tend to my boy, or if for some reason he decides that night he's not going to sleep, then as tired as i am, star awake with him, but most of the time, it doesn't matter to me as tired as I am, I do it anyway, cause love wins everytime!

 Then there's the medical, I hate that my sons reqired 24hr oxygen in order to breath, it breaks my heart, hes only 6! but for now, its what he needs and what I love, is is ability to breath easier, and have a cold, and not land in the ICU or a dragged out hostpital stay everytime, and it gives him the ability to fight of this heat and humidity just a little easier.
 i hate that my son had to be suctioned in ordered to maintaine a clear upper airway, but love the fact
that parents are now given the knowledge and tools to do such things so our little ones can maintaine a home life with a mom and dad, that love them surrounded by the rest of their family who also love them! it shows such how far our healthcare has come by letting us do so.

  When it comes to eating, it was never an easy thing for my boy, he struggled for the first 8months of his life , with us finding ways to modify ways to keep him eating my mouth, but finally came the feeding tube, I have regrets about that, even thou I said I didn't, I feel I just didn't try hard enough, find a way around the tube, after it was put it, it became too easy to feed him, I no longer tried to feed
him by mouth, i was scared, it seems to dangerous, and it was just eaier not too, and now i sit and wonder, if I kept trying, would he be able to have taste today? would he now have no need for a feeding tube?  I see how hard other parents fight to feed their children and what a great job they are doing,
then I feel sad, I should have been that kind of parent who worked that hard on my sons feeding, and not give up, just cause a tube went it, but my son has now gained weight, and he no longer has failure to thrive, and that , makes my heart happy to see, but at the cost of deprivimg my son from ever tasting his food? I will never know what might have been , and now with his lack of ability to swollow as he should, food, him, and his mouth cordination have become a danger zone, we dare not go...

Dr's once thought my son would be able walk, but as he grew, it became clear that he will never walk,
and the ability to raise his tiny hands to his mouth have vanished with time, and the cause is still unknown
I do miss that little baby who would roll from one side to the other, and suck endlessly on his fngers, I wonder where it all went wrong, then I think of his medication, he was so early medicated  to stop the frequent seizers he was having, but was that what stopped all his mobility?  or was this what was going to happen with time?  We got here how ever we got here, And I love my the same as if he could do all the things that i had hoped he would do.

  I live with the thoughts daily that one day, my little boy is not going to physically be with me anymore, and that he's going to be for the first time, be all alone, and so will I, i have no idea how I would overcome from this, he is attached to my soul, every part of who he is, how he feel how he breaths is attached to me in just a way I can not put into words,
I get scard when hes sick or unwell, but im the only person in this world who is not afffraid of him as a child ad who he is, who looks into his eyes and can see the bright spirit, joy, and love that lives inside of him, his eyes that talk so loud, but when sick, are so quiet...

 Just like the song says, "ive been fraid of changes, cause I built my life round you"

stands true in so many ways for my son and I... I don't like him in the care of others, and he doesn't like anyone but me to care for him, and together he and I grew on that, and thatts how ive built the past 6yrs of my life, and im in no way complaining!


 Girls nights out may be few and far between, I still go out, mainly to rock concerts, that part of me has yet to go away, my endless love of rockstars!! or a shopping trip here and there, and date nights are behind close doors with my husband, but lets face it, those are the best kind,
im ok with all this, cause i love my boy, and my kids more.
 
These confessions may not seem like alot , but it tells just who I am, and not who i use to be,
landslide moves us all along, we all get older and change with the change times, but it doesn't stop us from looking back on a life that once was or the way we imagined it would be, and the free thoughts of wondering what if?...

I don't like mondays (Bob Geldof)

Bob Geldof sure had it write when he sang his hot song,(one I really LOVE!) "I don't like Mondays"
this past Mondays was one of them!
 We finally had our long awaited appointment for our son for seating clininc at Holland blurview rehabilitation centre , after being on the waiting list for 6 months, and something that has been long needed and over due, I was exited! 
Well, Monday didn't corroperate too well, my Son woke up, rather miserable, legs shaking out the norm., red face, red blood shot eyes, and for the first time in a long time, he hadn't slept a wink the night before, I was hopinmg he was just tired, and continued to get ready for our travel, but I could not get rid of this nagging feeling in the back of my head, I was very unsettled, nervous like, I checked my boys numbers(sat. prob on finger) he was breathing ok, but heart rate was rather higher then normal,)  I gave him advil as I always do when travelling long distance, to give him comfort, but as the line in the song goes, "the silicone chip inside her head gets switched to over load", I may not have a silicone chip, but my brain did switch to over load!
My sister came over to pick up my other two kids, she agreed to watch them for the day,(brave woman being she already has two kids of her own), and an other line in the song,"nobodys going to go to school today, shes going to make them stay at home" well... that applies to my daughter, I kept her out of school so my sister wouldn't have the added stress of picking her up with a zoo of kids;0

Still not feeling comfortable, we load up the van, and head off to Toronto...
Both my husband and I kept looking back at my boy as we drove, he just didn't look his best, I aslo tried giving him a dose of tylonal as well in hopes he would settle , but his breathing looked a little fast, still red squinty eyes, when he pulled over in the truck stop to fuel up on caffiene, and empty my ever so full that morning blatter, I checked his numbers again, heart rate still high, advil AND tylonal, not yet doing the trick, but we continue anyway, my nerves not setteling , only getting worse,
our appointment was for 1:00 pm, I knew we were going to be late,
Finally after hitting cobourg, my sister text me, minutes earlier when I checked in, the kids were great and having such a great time, then she text and tells me my 4yo is sick to his belly, that really would not have bothered me, but this kids NEVER gets sick! thats it!!!! I had it, we turned around and headed home! it was a clear cut sign we were not ment to do this today,
I told by boy who was loooking so unwell in the back seat we were going home, And I swear I saw a grin on his face, a look of relief,
we went straight to my sisters and picked up my other two, turns out, a bowl of oatmeal dropped on the floor, causing my 4yo to gag, then puke, good news: he was not sick after all!
bad news: he does have a gag reflex to a lot of things, and spilled oatmeal on the floor looking like something else, was a good set off!
after getting home, I put my boy on the couch and let him lay therre in just his diaper, he relaxed, heart rate went down and a complete look of comfort came over him.
so  a trip to emerge was thankfully avoided, my nerves settled , just a little, I took the rest of my stress level , and do what I do best when stressed, clean house, and re clean what I already cleaned, 3 or 4 times, cause I just can't sit when worried or stressed, just ask anyone in my house!
my boy stayed settled the rest of the night , he caught up on much nedded sleep when he went to bed.
Though this may not seem like such a big deal of a day, and I have had worse Mondays, this still was a big deal to me, in a not so good way, but never under estimate the power of communication. even from a boy who can't talk, he will always find his own way to communicate with me, after all comunication comes in many forms!
Luckily my son had a schedualed appointment with his pediatrician the next day, and my poor boy is fighting something, so hes now on antibiotics, and already doing soo soooooo much better!

So conclusion to this story?
"what reasons does there have to be.... I don't like mondays, I don't like Mondays, I want to shoot oooot the whole day down!

Then till now

Ten fingers,ten toes, a perfect baby,
But soon you didn't grow

Perfect

God has sent to me the chosen one,

With him, my boy, my life had finally begun. through heartache and tears and come what may we held out hope we made it another day. I love him a plenty, he is my perfect boy, he brings more to my life, knowledge and such joy. accept him for who he be, theres no such thing as imperfect, we call it special needs. I have no shame in he who came to me, I feel blessed and honered, he was chosen for me. throu goodtimes and sorrow, I will still find the joy, God gave me my perfect boy. Hold his hand, touch his face, don't be afraid, its no disgrace. Though lost in a crowd, with the stares so loud, I stand behind him so proud! , you are who you are ment to be, that I can so clearly see, your the better part of me. I tried to hide me, but never from you, who knows just who I am, you believed in all I could do, You keep on holding on, with my strenth I gave to you, somewhere deep I always knew, I may not be your perfect Mom, god knows my faults are true but im doing the best I can always know, I love you. and when the skies are gray, you bring out the sun, the happiest days, my beautiful Son. Don't worry if you see me cry, its just an expression, that the world should try. "have a little faith in me" has become our song, I swear I heard you say it, those lyrics are so strong, I stayed where I belonged, through those nights so long, I found a friend, in what became our song. God gave to me my pefect boy, through him, my life I found such joy, He is who he is ment to be, everything im not, He's the better version of me.

prayer

Say a prayer for my boy tonight, in bed at night, doesn't end his fight, Say a prayer for my son, who still held on, before his life begun, say a prayer for the strong, all thats going against them, in a world, they still belong, Say a prayer for the mom, who has strength to go on, but who's road just begun, say a prayer for those who don't believe, their minds are not open, they have yet to see, say a prayer for the ones you don't know, life goes on around you, their hearts bleed but don't show, say a prayer for the most unkind, today they do you wrong, but everyone will soon have their time, say a prayer for the one you love, their journy goes afar, but always end up where they begun, say a prayer for answers unknown, though not yet answered, look at what you've been shown, say a prayer for those who cry, times they get stepped over, but you still see through corner of your eye, say a prayer for those who lie, they don't know the difference, there truth in disguise, say a prayer for the rich and poor, we all get the blues, just show them in different shades of new Say a prayer for Johnathon, my boy who's real, he taught me to feel, say a prayer for life, your hard struggles and times are worth the fight

love in all the right places

I really don't know how to start this but now I guess its going to start just like this. I remember when i first ment my husband, well... as we "offically" we called, common law, I hate that term, I really don't like labels being put on anything, I chose not to get married, don't really see the point, with a once divorced mom and dad, though second relationship was "common law" it lasted like 20 yrs, and then ended, I think weddings are just an over expensive party, and I don't need an exuse to have a party or alot of money either! Anyway, when I first met my , well.. we will call him by his name for lack of labels, John, I thought he was a jerk! and I told him, "your a jerk" I will leave out the condiotion he and I were in that night I met him, even thou I called him a jerk, I haven't left his side since, 13 years later.. I loved him before I even liked him, I wasn't looking for anything of the kind when I first met him, I was freshly 20, but had a lot of years of wrong turns and bad decisions, I was anything but comfortable with myself , who I was where Ive been and where I was headed, but that night, EVERYTHING changed, I found love , though I didn't even know it yet at that time, but it was love found in all the right placces. Then after 5 years together we had our daughter, I never wanted to have kids, I was convinced I would be a bad mom, I didn't feel I had the know how , or what it took, But I did become a mom, and my whole world changed and only for the better, I didn't know I was capable of loving someone so much as I did the moment I laid my eyes on her, and to have someone love me back just as much as unconditionaly , almost 2yrs later, I had my son, my beautiful boy, who has special needs, though I was unaware of just how special at the time, I didn't want kids, yet here I was with 2, my heart grew, i was filled with even more love, never did i imagine having 3 kids, after being through so much in the short year i had my son, It would be unfair to him to bring another baby into complete yet complicated family, that year was 2006, 2007, I had my last boy!(and by last I mean LAST!) surprise!, I cried and cried when I first found out we were going to have another baby, i didn't think it was going to be managable, we did it, he was the best addition to complete our now family of 5, and though I didn't know how we were going to manage another baby, with having my daughter and my son who by this time had just complex medical needs, but my heart grew 3X , and here I am now a mother of 3, I always like to say, I litterally have one each, a girl, a boy, and a boy with special needs! All 4 of these people have brought so much to my life, and shown me love like i've never known, and I give them love back that I didn't think I was capable of.

my daughter now almost 8, and all her brillance, she's so creative, school smart to the point where school almost bores her, she is so determined to win that I feel sorry for anyone who dare challenge her, she has such a love for animals, she spends to much time pretending to be one, I really think she use to be one. She tells me daily that she has such a beautiful mommy and she would not want any other mother.

My now 6 year old, who has sufferred so much in his short little life, but still has a strength and spirit in him, he wins all he battles. He has taught me how to love unconditionaly, to be kinder to others, who just don't know what story they may have of their own, he brought out a loud voice in me that I never thought I had, and I love him, and I know by looking into his big beautiful eyes, he knows just who I am, and that he too loves me!

My soon to be 4 year old, who from day one, drove me insane with his constant loud screams and high pitch tone he thinks is is voice, but he is the absolute perfect addition to our family even if he was an unplaned surprise. he doesn't miss a trick, nothing goes unseen with him, he's full of questions about you, even if he doesn't know you, I call him my little detective, he's a true sports fan, loves anything with a ball, and I have no idea where he gets it from, he has the bigest heart and comassion of any boy his age i have ever met! and he lets me hug and kiss him all day long, he tells me im the best everyday and always says he likes my shirt, and if its new, he knows it! he loves me, and I love him more then I ever dreamed I would! Im so amazed by these little people, and that I created them, they are with faults and nothing but perfect to me!

Last, there is the man I call John, what can I say about him?? he's been there through thick and thin, right by my side, and there has been some REAL think times,and even through the challenges we have yet t endure, but know their one day coming. He tells me everyday how beautiful I am, though I believe he believes what he says, I oftten question his sanity, beauty really is in the eye of the beholder! He loves when I wear yoga pants because he likes the way my ass looks in them, and to this day I still call him a jerk, you know... for looking at my ass! He always puts his family first, he do what we feel is right for them and best for our family, he doesn't care what others think, he's happy with all he has, but is always so quick to help others who are in need, he is by far a better person then I... and gosh darn it!! he loves me, for exacly who I am, and here we are , 13years later still going strong, with our perfect family we created, I don't need money in the bank to be the ritches girl in the world. I'm comfortable with who I am today, and even thou sometimes my heart aches, and so often I cry, I do not suffer. I have many things to be greatful for, but mainly , all the love I have in my life... I have found love that I once longed so hard for, in all the right places.

Horse with a broken leg

After spending sometime in an ICU where my boy was transferred to from our local hospital, one in wich we never been to before, things starting looking real bad, So bad in fact, I saw for the first time, a chance my boy really may not make it home, but at no fault of his own, without going to into long detail of just why I felt this, and how I knew thier techniques of trying to help my boy, where in fact where actually making things all wrong for him, but watching my boy, and the strong little fighter he is, he kept holding on, After one long and stressful night, (my boy had some tube compplications , and was very unstable for almost 13 hrs), I made my boy a promise, I promised him, if he held on just a while longer, I would get him out of there, I would get him to sickkids, a place that without fail has never let us down, has always helped my boy with his battle in getting better. After what I thought was going to be a fight with the ICU team that was working with us, I asked them, "can you please transfer my boy? im really done with this place, and be honest , you are you've done all you can here with my boy," " despite what you may feel is going to happen, please transfer my son, so at least I will know i did all I can do for him?" To my surprise, they agreed, and without hesitation, They agreed to make the phone call but we're doubtful they would take him, being he was already in an ICU bed, but to everyones surprise, Sickkids agreed right away to the transfer, and tears Of hope and joy, streamed down my face, and I thanked them! of course the only other Glitch was trasportation, being my boy was still stable, ORNGE may not be able to do the transfer for a while, making us at risk of losing our bed at sickkids. Well , fait was instore for us, this tranfer was ment to happen, by noon the next day, Team ORNGE was there packing us up and ready to send us on our way!! (more tears of hope and joy , insert here) , This was our first transfer during daylight, and we went by small wing plane, a first plane ride for me,(sadly not my boy) surprisingly I was not afraid to fly, or I just didn't think about it maybe... I starred out the window as we're above the clouds, just an amazing sight, brought true images of hope and faith to me, that we were on our way to better times.

By the time we arrived to the ICU at sickkids, it was almost shift change, but that Don't matter in this place, what the Doctor wants done, gets done, no matter the time, and a much needeed *bronchscopy was done, tube re placement was done. After only a few hrs things already looking up, my boys condition was turning for the better . finally after a 4 week long struggle, and finally being where I wanted him to be all along, there was light at the end of the tunnel! After a long night and barley any sleep, even though I was given a parent room for the night, I barely closed my eyes for even an hour, i was back in my boys room, and to no surprise at all, he was still impproving.. slowly but surely. I took my cell phone out of my pocket, where it always sits, oh and to show you just how far hospitals have come, we now are allowed to have our cell phones with us, even in the ICU.. keeping me in close touch with a world I felt was so far away, whether it was my pphone calls, email, text and TWITTER!! the place where I get my local and worldy new from. And there it was, a women and her husband who both friended me on twitter, a women who reached out to me, beause of my boy, because she too has a story of her own with her own boy, the same couple, who for no reason but the kidness of their heart , came to visit my boy and I when we were on our local Hostpital, who brought me coffee during the day and to keep my addiction fueled, at night as well, and brought me homeade cookies!! ( I still dream about the taste of those cookies, they were sooo good!), and most of all, the couple to sent daily prayers, for my boy to get well and return home. They too were at sickkids, just the day before , the very place where outside , the place where their little girl lost her horse, the horse with a broken leg. They tweeted out, that if anyone happen to be downtown Toronto, if they could look for this horse that their daughter lost outside, and even posted a picture near the enterance of where it was...wich came in real handy for me, I suck with written diretions, but picture, i can follow. I saw that post and knew RIGHT AWAY I had to find this horse! I knew how sad this little girl must have felt without her favourite toy, after spending everynight for the past 4yrs, looking for Giraffey, a stuffed animal that my 4yr old can't sleep without,but it was something more inside me that wanted to make it my days mission to find this horse, it was a sign, not just that they were there just the day before, the same place I faught so hard to get to that very day, but I thought, if I could find this horse, then it was a clear cut sighn that we were ment to be there, and if I did manage to find this horse, that one little girl would be happy again, and my boy would get well again, well enough to return home, to my little girl and boy who I was missing terribly. I didn't waiste anytime, and it was coffee time for me anyway, I really needed coffee, after a long time without any sleep, i went down stairs, i first went to the lost and found and ask if anyone turned in a lost horse with a broken horse, they hadn't seen one but took down my name and number in case one was returned in, off to starbucks to grab my coffee,(I hadn't discovered starbucks until the last ICU we were at, thats all they had, before that, it was always tim hortons, I got use to starbucks, and well, i could go either way, starbucks or Tims, starbucks is right there when you get off the elevators at sickkids, so it was an obvious choice) with my coffee in hand we ventured outside walked around the building to where the horse was left, kept praying I could find this horse, and that it was the answer to making everything right again.... I started looking on the grounds, under every bench, under piles and piles of leaves, I wan't having much luck, I started feeling anxious, I really felt for no reason other then my own craziness, that finding this horse was the answer to making my son healthy again, like it held some sort of magic or somehing... I know crazy right?? I thought if I couldn't find it, then this was all a waiste and it wasn't really fate brining us here after all... Finally there it was!! A horse with a broken leg, sitting on a bench where I must have looked UNDER a thousand times, it was sitting there , as if in the very posotion where this little girl had left it, as if waiting for me to pick it up and one day , return it home. I exitedly put it in my purse, and returned inside and upstairs to my boy, and I tweeted out the little girls mom to let her know, her horse was safe and sound and would one day soon come home to her. I kept this horse in my purse ,to ensure it would not get lost again, but looked at it often , i won't tell you then I talked to it as well, cause thats just pure crazy at its finest! right?!? It heard me pray, heard me cry, even went on a little adventure with me where we both got lossed. I decided one day, I needed some fresh air and change of place, just for an hour or so... so I walked up to the Eatons center. I shopped around for a short bit, with horse in purse, But when it was time to go.. i got lost, first inside the mall, couldn't find my way out, then when I tried many doors outside, I could not find the way I came in, I stood on the street of Downtown Toronto, with no idea how to get back to sickkids, (like I said , i suck with directions, any sense of direction... I have none) i stood there terrified I was going to get swolled up in the busy crowd and not make it back to my boy, a man was preaching into a microwave , I turned and he was starring right into my face, freaked out!! I walked into the street and jumped into the first cab I saw, I begged him , can you please take me to sickkids main enterane?? I don't care how you do it", and sure enough 2 minute ride later, and $10.00 gone, I was back to sickkids, after stopping to grab some much needed caffeine,I went back upstairs to my boy, so thankful I was with him again, and vowed, never to leave his side again! alone anyway. Incase you were wondering, yes I really did believe this horse made sure I got back to where I needed to be, I carried it around with me like a good luck charm, this horse was to me like wilson was to Tom Hanks in castaway, even though I was always with people around me during these Hospital stays, some days I felt just as alone, like Tom was on that desserted Island. After just a day or two shy of two weeks, my boy was well again to go home! A few short days after we returned home, the horse with the broken leg was returned home to its rightful ownner, my boy and I were returned home to our family , and just in time for the holidays, and for my boy to turn 6 soon after! What ever the reason was for that little girl to lose her horse, for my boy to finally go to a place that could help him, I can't help but feel it was all linked together some how, that is was a sign that all was in place where it needed to be, to put us on the track to "healthy and home again" and home again for the horse. It takes me to a new place of belief , that there are no coincidences in life, and that a chain of seperate events that occure, are all linked together.

*Bronchoscopy is a technique of visualizing the inside of the airways for diagnostic and therapeutic purposes. An instrument (bronchoscope) is inserted into the airways, usually through the nose or mouth, or occasionally through a tracheostomy. This allows the practitioner to examine the patient's airways for abnormalities such as foreign bodies, bleeding, tumors, or inflammation. Specimens may be taken from inside the lungs. The construction of bronchoscopes ranges from rigid metal tubes with attached lighting devices to flexible optical fiber instruments with realtime video equipment.

voices in my head: how to survive a hostpital stay(have a little fait...

voices in my head: how to survive a hostpital stay(have a little fait...: one thing I've wanted to write about for a while now, is how to survive a hostpital stay with your child... my sons last stay was a do...

how to survive a hostpital stay(have a little faith in me)

one thing I've wanted to write about for a while now, is how to survive a hostpital stay with your child... my sons last stay was a doozy, and a long one, so i finally put my fingers to key board and here we go... I share with you our story and experience and the best advise I can give on these hard situations, How to survive a hostpital stay with your child when they are sick?? answer is quite simple, COFFEE AND CHOCOLATE!!!.. ok, not the pair do help non the less. In just the short 6 yrs of my boys life, not only has he endured hostpital stays but he's had 4 ICU stays as well, where each time, we didn't know if he would even make it home, each stay, being more severe then the last and longer., we've now travelled by car, by ambulance, small wing plane and helicopter, i will say this, if your child is sick and needs transportation, ORNGE is the team to get you there! they are without doubt, the most orgonized, accurate, knowledgeable, and all around great team to get you where you need to go. Though my sons underlying condition is neurolical, his daily battle in life is respirator, his lungs are like a maxed out credit card, so it doesn't take much to send him into respiratory distress, resulting in hostpital stays and even ICU... though these times NEVER get easier, we mannage, im not only in full mom mode Im in a total battle feild , armed and ready to take anyone down who DARE try and think they know my son better then me, or tell me what they feel should happen...they may be healthcare proffessionals, and some of the best I may add, but noone is an expert when it comes to your child... only a mom can possibley know their childs needs, thoughts... and what they are capable of, and how they feel and what they need! Sadly there are somethings I can not control for my son, like his misfortune of getting sick whether Ait be just a common cold, or phnemonia or aspiration phnemonia, and noone can ever really tell you what it is, or what really made him so sick, my on going fustration... my son is now on home oxygen since his last hostpital/ICU visit, altogether we were in 3 different hostpitals and 2 of them being two different ICUs, finally after a long battle and conatant fighting I got my son to Sickkids, the one and only hospital that I trust and always manages to make things right and send my boy home,only this time, the damage was a little more severe resulting in his need for oxygen at home, but this is not the first time, he was on it once before, but this time, I have a feeling it may be around a long time, not that its all a bad thing, it has helped him fight a few colds and gives him the ability to breath much more relaxed, and thats all I could ever want for him. One thing I can not stress enough is KNOW YOUR CHILD!! even more so if they have special needs, they need you too! Don't give up on them even when thigs are hard or even see hopeless, if you believe in them, they can over come anything, despite what the doctors and specialists say... they don't alwyas know, and if you let go cause they tell you its whats best for your child, you just fall into thier trap,the child will decide when their time is up, and no machine or doctor or medmicine in the world will keep a child if they are ready to let go... I believe in this with my whole heart.. ive seen it. theres a song I always picture my boy singing to me, so think if it while you read this, "have a little faith in my" by Joe Cocker, cause origonal is always better," this song, has helped me through some real hard times, but has always made my choice clear!(if i was just a tad smarter I would know how to add the song as background music) so many times Ive seen a child or a teenager or even a baby , either down the hall from the room my son was staying in or even sometimes right in the next room, then after contant comostion and quiet in the hall way, you hear a mothers cry, saddness takes over the whole floor like a huge dark cloud or shadow of complete darkness, that child or teenager is nolonger here. my heart breaks for that family, I look at my boy and hope he has no idea what is going on, and so glade hes not alone in the room, but I also can't help but wonder, was that child really ready to go?? could there have been a better way? could more time have pulled them through?? who made the final decision to say goodbye? i get that there are some circumstances where there really is no other option, but there are times when there is, i just know it, as my boy gets well enough to leave that ICU, its real bitter sweat, while my boy as been given another chance, another mother is going home alone. I do think about the possibilities almost daily that one day too, i will be that mom who loses her child, i don't just wonder how I will go one without him, but how do I tell his 7yr old sister, who tells me all the time, she is so glad to have him in her family, that she does not care how he is on the outside cause she knows hes just like us inside, who sits beside him at night to read him a story, who loves him, or to my 4yr old who for no reason will walk by him and kiss him on the cheek, or tell me funny stories he thinks hes telling him(even though he can"t talk), who tells him he loves him daily... I don't think there is a way, he is so much a part of our family and included in our everyday life no matter what we're doing. Hes got such a light, spirit in his eyes, the same eyes that talk to me, the same eyes that tell me hen hes happy, and when he's sick, they also let me know that when things seem at their worst, if i just hold on, "have a little faith in me" i hear them say, that he will be ok again, thats how I listen to my boy, and why I fight so hard to keep him in our life. If i truley believed for a moment that his life was full of pain, and discomfort, like some healthcare professionals try and have me believe, then maybe I would do things diferently, ive had docotrs, tell me things like , "hes only going to keep on getting sick like this, or by keeping him alive, is only cruelty to the rest of your family and to him, so on and so on...my only respose to them, well.. the nicer version of it, is," do your job today that is to get him well aagai, if you can't, I will take him someplace that can," " I will worry about his future and the rest of my family" I can go on and on by the things Ive been told, but I just forccus on my son and what hes telling me, sometimes, when I get overwhelmed, and I just want to scream or just plain cry, I look for a quiet place, wich is hard to find in hostpital settings, I go to the hostpitals chapel, just sit, alot of the times cry as hard as I can just to get it out, and talk, to the one spirit that listens... God... i say a prayer, tell him if its time, then its time, I will let go, but please , don't take him from me, or his family that loves him so very much," and just by doing that, I re gain enough energy to get through another day, and the great thing about this trick is, I dont have to be in the hostpital to pray, cry, and begg, I can do it in the comfort of my own home, room, as I so often do...another thing Ive learned along the way, God is always there to listen... when my boys in the ICU, I hate leaving him, very seldom do, but on occasion, I do try and sneak home for a night to re group with my other two kids, coming back to my boy feeling refreshed. Its good to take a beak when you can, even if just a few hrs, it releases any negotive energy, frees the mind and spirit, giving you and your child the strength and fight to keep going. don't get me wrong when you read this, not all doctors are so quick to want you to give up or feel they know whats best for your child and you, in fact for ever one doctor that has, lets say poor choice of words, you will meet 10 more great ones, ones that let you believe in your child, help, your child, be the only parent you know how to be, wich makes staying strong so very important, there is always someone you will believe in what you believe, we are so fortunate to have a few doctors, nurses, ect... who believe in my boys full potential, that know how hard my boy fights no matter how hard his little body fights against him, we are, truly greatful, who at the end of the day, let me be the mom i want to be. my only other real advise on hostpital stays is, be friends with your nurse, they are the ones that help all day long, make sure your childs and your needs are met. The bigger the hostpital the busier the Doctors, so its had to get all your questions answered, so the best thing to do is write them down, but even better, ask your nurse, if they don't already know, they will find out and get you the answers you need. At this point and time in my boys life, with no diagnoses, I've stopped searching for one, cause really it doesn't matter, with a diagnosed will not come a cure, and i've become ok with that, in no way am i giving up, just foccusing on him , today, and at the end of each day, im ever so greatful to have my boy healthy and home, and to be with all my family, cause i don't know what tomorrow will bring, i an just hope and pray it won't be good-bye, but when that sad , fateful day should come, i will know it was my boys decision , and I did all i know how to get him as far as he got, i have visions of him , freee, running and playing, his radiated, overmedicated body finally free from all the toxins he undures in daily life, and that one day, he will be waiting for me, open arms, and the words,"mommy" today, we foccus on today, thou never in denial like im so often accussed of, but trying to bring a sense of normal to his life, and the life of my other 2 kids. For now, our life is complete, having my boy with special needs as completed it, I ould not imagine life any other way, so greatful I was chosen to be his mom, we can all it syndromes, Genetics,disease, what ever medical term they find, but they are placed on this earth for a reason, how , doesn't really matter, as long as their accepted and loved! So now that ive rambled on,(wich reminds me of one of my fav. songs...ramble on-led zepplin, just thought i would throw that in there:), I will end with one last piece of advise from experience, it really is important to eat properly and stay hyderated during such times, I didn't follow just advise , its hard, at times, id rather puke then even eat a single bite, but by not doing so, by the time we got home, and the dust settled, I ended up so very sick, thou the severe weight loss may have been the one good thing that came from such a hard time, it came with a heavy price of falling very sick for days, by the time my ammune system caught up with me...SO NOT worth it! And one last note: that old saying stands true, don't judge a person you don't know, you never know the battles they may be facing behind their smile, frown, or closed doors...

lullaby

I will sing to you a lullaby,
we'll sit on a cloud way up high,
looking down the world below,
heavens awaiting,
it was time to go,

I will sing to you a lullaby,
you no longer have to see me cry,
now we can be free,
you can be who your meant to be,
I wont't let you be alone,
theres 2 carvings on one stone,


I will sing to you a lullaby,
way up high, looking down below,
hearts were saying its time to go
through our spirits as the wind blows

I will sing to you a lullaby,
like a bird who can now fly,
a heart no longer aches,
to you I couldn't say goodbye,
I will sing to you a lullabye,
in a place, I no longer cry,
now we can be happy and free
who we were ment to be,

I sing to you a lullaby,
I will sing to you a lullaby,
we'll sit on a cloud way up high,
looking down the world below,
through our spirit as the wind blows

I will sing to you a lullaby,
to the rest who I love,
we are watching from above,
I sing to you a lullaby,
no longer afraid to close my eyes,
no longer a lost soul,
no longer feel that dark hole,
I sing to you a lullaby,
to my boy, I could not say goodbye,
I will sing to him a lullaby,
he longer see's his mom cry,
our journy here has come to an end,
couldn't let him be without a friend,
i sing to you a lullaby
I will always be by yourside,

I will sing to you a lullaby,
we had to say goodbye,
relationships failed,
others derailed,
once love now gone,
this is our song,

I will sing to you a lullaby,
we'll sit on a cloud way up high,
looking down the world below,
heavens awaiting,
it was time to go,
I will sing to you a lullaby

beautiful boy

good morning beautiful boy, today you turn six,
every year older is another mile stone,
another story of how far you've come,
not forgetting the road behind,
and the days that were most unkind,
but through every experience both good and bad,
there was a lesson learned, even ones more sad,
good morning beautiful boy, today you turn six,
I loved you before I knew your name,
and if I only knew what life had instore for you,
I would still have loved you just the same,
though my dreams I had of you riding a bike,
running around, hearing you say my name,
still brings tears to my eyes, i look back and wonder
to you I say this, I can not lie, and I wonder why?
good morning my beautiful today you turn six,
though you may not walk, in your wheelchair you will stride
and I know you know my name, I see it in your eyes,
I am you mommma, most proud, you are my boy,
I promised to never let you fall,
To fight for you is all I know how to do,
when times look at there worst, I just look at the days ahead,
we will get back to them , just look at you,
Good morning my beautiful boy, today you turn six,
and theres been some really happy days,
being home together with our family,
makes all those harder times just a haze,
though I would not change a thing of who you are,
to keep you healthy and home, with a brother, sister , ans daddy
who love you,
I will keep wishing on the brightest star,
Good morning my beautiful boy, today you turn six,
the lyrics of a song, they don't change,
but the scars of who we are really do fade with age,
if I could sing this to you in a lullaby,
knowing one day, you will be carrying to the sky,
though my heart be broken, a part of me gone,
you will run around free, think of me, now you can fly,
Good morning my beautiful boy, today you turn six,
I won't think about tomorrow, cauze I have you today,
lifes a mystery, I lay my heart with yours
cause two hearts beating , far better then one,
I was lost before you came along,
though I was a mother of one, things seemed to easy,
then when I had you, my lifes meaning begun,
now a proud mom of 3, I know just who im suppose to be,
Good morning my beautiful boy, today you turn six,
I am who I am, your who your suppose to be,
I see your spirit, it shines so bright,
the life I gave to you, and you shine in the light
though there is answers to questiones we may never know,
somehow they don't matter, they won't direct us where to go,
what we have here today, is all we know,
Good morning my beautiful boy, today you turn six,
the road ahead is not paved,
its the bumps and curves that led us our way,
so when people see us walk by, you see the fear in their eyes,
but once they know your name, it all goes away,
you live a little different, inside still the same,
Good morning my beautiful boy, today you turn six,
what do they know anyway? there words untrue,
"have a little faith in me" I heard you say,
you pulled through again, so hard I prayed,
Good morning my beautiful boy, today you turn six,
and all thats in our life, far from our view,
one thing remains the same, always is true....
how much
I love you!