putting special over the need

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

define special needs?

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

a little dose of wisdom from a 5yr old

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

Johnathon

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


my boy Johnathon

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the beginging (part2)

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

to be continued...

the begining(part one)

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