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.