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?

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

hostpital bound and powerless

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

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

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

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