because I want to

one thing Im proud to say I did right in my life is have kids because I wanted to. I was ready to be a mom, so if noting else,that I did right.
so when I found out my middle son had severe medical issues and would continue so through out is life, was I upset?? not really, shocked? yes, a little, would be lying if I said other wise, lets be honest, whe were an expecting parent, we all want healthy kids and plan for noting else,
but was I disapointed? NEVER!
I am my boys mother because I want to, not because I have no choice.
often I hear of cases were a mom or parents put their child in a om because tey do not want the responsibility of raising a child wit special needs, or maybe because they just don't have te know how, but what ever the reason it breaks my heart into pieces, was it that they didn't get what they ordered?? so the y go on to have other children, ones they were expecting to have all along.
Ewvery child no matter their condition deserves the love of their parents, after all, a child with special needs is still a child first!
Ive ad to learn alot over the years ow to take care of my son, it didn't come easy, but I did it because I want to , not because I had too, but the love I have for him is the easiest because I want to.
Ive had the advantage and privilege of learning from one of the best hostpitals in the world, one valuable ting Ive learned was suctioning,
they often suction kids in hostpital settings when the child is sick, to get up all the junk out of their chest they can't bring up on their own, this is not someting they recomended I do at home, but I learned how any way so I could do tis at home, not because I had to but besause I wanted to.
I wanted to give my son the best quality of life I could give im, and by helping im breath much easier was possible? I sure was going to do it, bacause I want to.
we are fortunate to have a pediatric team here locally to help guide through the everyday with my son and help where we may stumble, just to pick us back up and get us on track, we ask for their help and guidence not cause I have to , because I want to,
I want to give my son the biggest support team I can find, to encourage and always be on is side, because they want to.
my son requires 24/hr care, we ave little help at home with him im when it comes to respite, I chose to do most of it on my own, not because help is not available, but because I want to.
I want to make sure at all times he is properly taking care of, and treated well, because I want to.
when my son is sick and has to spend time in the hostpital ,I stay with him so he's not alone, and recieves the care he deserves at all times, I could leave im and pass im on tothe nurses and Doctors, but I chose to stay, not because I have to, but because I want to.
Nurses are may be school trained, Doctor trained, but they are not "mommy" trained.
there is alot of sleepless nights, but i get up with my son through the night every night, because I want to,
I want to kmow always that he is ok, and do what ever it takes to keep it ok. because I want to.
after many months of feeding challenges, we finally went ahead wit the feeding tube, not because we had to, because somewere inside I wanted to,
I wanted my son to stop getting sick all the time with phnemonia, and work hard to feed from a bottle, making his tube impossibley thick just he could swallow, it just ssemed cruel,I needed to take is pain away and make is life that much easier, no more struggle, not because I had to,
but because I wanted to.
I wanted to get to this point of him getting a feeding tube with no regrets,besause I wanted to.
after 18 months of my son continuing to throw up, and struggle to gain weight, we had the option of im getting a fundoplication, a opperation that would stop stuff from his belly make its way up his esophagus,
I chose to do it, not because I had to but because I wanted to.
the surgery was a success, my boy was getting sick less often and finally he was a healthy weight.
I chose to fight to keep my son alive when doctors told me it was a lost cause, and he wasn't going to pull through the night, I chose to continued to fight for im when they said, he's going to keep getting sick until he finally does die, I chose for im to live, not because I had to, because I wanted to.
my son, he continues to fight every day, some better then others, not because he has to, because he wants to, he has the will to live because I belive in him, because I want to ,
he's alive today not because he has to be,
because he wants to.
my boy is all he can be and because of im, im all I can be because together, we want to!

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...