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!

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?