my songs

http://youtu.be/WM7-PYtXtJM

Tuesday, September 13, 2011

message for my son

I knew from the start
I felt it in my heart
but I loved you anyway
something not quite right
we were in for a fight
but I loved you anyway
when people would sigh
something wrong, I don't know why
I loved you anyway
through time and tears
came true our fears
but I loved you anyway
you may not walk,
I only dream of your talk
but I love you anyway,
when the world gave up
I still held your hand
I loved you anyway
and they may not understand
but your fight was my demand
and I loved you anyway
my smile gets turned upside down
by just the warmth on your head
but I love you anyway
better days always come around
you never let me down
I will always love you anyways
how somedays I feel so alone
how to take care of you only,I know
but I love you anyways
with our darkest days
now seem a haze
cause I loved you anyway
no matter what comes our way
just know we will be ok,
cause I will always love you anyways!

Monday, September 12, 2011

camping? why not!

Sadly summer is coming to an end, it seems the older I get the faster it seems to come and go.
my boy has had his best year yet, from last winter till now, he as been sick very little, wich means alot less hostpital stays, even during the hottest of days, my boy does not tolerate heat very well, it has in fact landed him in hostpital in past summers, though he still does not like the heat, and humidity and him are like enemies, he still made it through a winner!
So, in our goals to keep life as normal for all my kids, the best we can, this summer we went camping!,
Im not a stranger to camping, I spent te first 23 years of my life camping, at the same place with the same friends and family, doing some fun things (some not so great at such a young age, but fun anyway) but those camping days were much different, all I ever worried about was packing a bathing suit and a cooler of beer.
well, when you have kids, things are a little different, especially the BATHINGSUIT!
so 3 kids, a wheelchair, suction machine and camping? ....why not?
We ended up buying a tent trailor, then we bought another one, reolizing the first one was going to be a bit too small, why a tent trailor I have no idea! it seemed like a good idea at the time,
our first camping trip was good, but as Ive come to reolize in life, theres not so many places wheelchair friendly, so its just up to me, to make them wheelchair friendly, not that you won't catch me uttering not so nice words time to time,
we did need to get a campsite with water and hydro, alot of my sons equiptment including a few of his medications are given through nebulizer, so we need hydro and water to rinse things out and to do a quiclk wipe clean, seriously 3 KIDS!
my kids loved it! everyting about it, playing in the sand, swiming at the beach and the camp fire, im a very responsible mom, but one thing you can know about me is, just cause I have a boy with special needs, life doesn't have to stop and I can still have fun! SO, maybe the bathingsuit changed a little, but the cooler of beer didn't, its ok to sit around the fire have a beer or 15, and if I stumble on my words rest assured im always in "Johnathon mode" I will always without doubt be able to take care of him, without missing a beat!
our second trip was even better, family came wit us wit their 3 kids, so altogether we had 6 kids, but we also had 8 sets of eyes, there was always help when someone needed it, we shared everything and our sites were combined and things seemed more accessable, we spent more time at te beach, my 7yr old daughter grabbed the whole attention of the beach by her determination to jump off the diving board into the lake, and after 45 minutes she jumped!! and everyone applauded her! but she did not jump again, still I was very proud:))
later they the kids (my boy not included) got to go on a hay ride, there was a corn roast with dancing and just plain fun!
the only thing, my boy has allergies to almost everything out doors,and the next morning they seemed to act up a little more then normal, but I brought my good friend benadryl and the back up police, ventolin! worked well, he was good to go, just in a sleep motion.
so point of story, camping can be done, and if you feel like a beer at 10:00 a.m. in te morning its ok, your camping, everyones doing it,
ok so the real point of the story, camping can be done with my boy with special needs, wheelchair at times was difficult to get around, but I had help and we managed just fine, though I'm looking for a bigger trailor, a regular trailor, the tent trailr is just to much to pack and unpack, and try as I may, it just was not wheelchair friendly, but....
I will go camping again!

Saturday, September 10, 2011

Beautiful

My hair is not long, in fact, its as short as short can be,
my eyes are not blue, they are brown, but they feel the deepest of blue somedays,
though im not really sad, mostly quite chipper,after morning caffeine, goes without saying...
not overly tall, average i'd say,
but my head can over see mountaines some days,
not over weight, but the emotions I carry could surely tip a scale,
somedays I go out and heads will turn, but in my mind,
I fear their eyes I mostly burn,
lack of self confidence only hits me sometimes
but if you want fears, I have plenty!
I have clevage, but not in the way you think,
its hy heart strapped on the outside of my chest,
and not knowing what the whole world thinks,
my husband thinks Im beautiful, even says im hot,
but my warped way of thinking, I say,
"its just part of your sexual plot"
but I know he loves me, not knowing why?
Ive sometimes been mistreated, even as a girl,
and often misunderstood, Ive never had the love I understood
I have witts and smarts to most unknown,
I don't sit and judge , its just how I make it around,
I will force for you a smile, even if its not real,
as quick as you blink, I can turn it into a frown
prettty I would say not, its not me,
I would love to tell that girl she's beautiful, we all have our turn,
that girl who is me,
but would she believe me, I don't know,
we all have our insecurities I guess
Ive just showed you mine,
my biggest fear is not just growing old,
but growing old without my boy by myside,
we all have doubts and fears we hide,
I just took you to my secret place,
of me, inside

inside my heart

If you could see into my past you may not like who you see
I did alot of things at such a young age, would be anything but smiled upon,
but if you looked into my heart, you would see, I was just a girl, trying to find my way, just wanting someone to be proud of her, love her.
I didn't always make good decisions, I tried things for the life of me I have no idea why, I hurt people not even wanting to, people hurt me, not sure if they were even aware.
But if you look into my present you will see, who I was back then has made me who I am today, you may not like who you see, I lived a life back then, today I have no regerets, but memories.
if you look into my heart you will see, 3 of the most beautiful children, who I try everyday to make them the best person they can be, I want them to outshine the person I use to be, and to be bigger then I am today, I want them to accomplish so much more.
when you look at me, you see a mom with 3 kids, one with special needs, you look at me and see someone to feel sorry for, you feel pitty, but look through my eyes, and you will see what I see, a life very complete, a very proud mom, with 3 kids who I couldn't love more, a boy with special needs, who has brought out a strength in me, I never knew I was capable of having, he orgonizes a part of my brain that is otherwise scattered, he fills my heart that before him, was searching for someone more to love, he fills that part of me that I thought noone could ever love.
Look into my future, I don't know what you may see, But I no longer feel the need to run from that girl I use to be, I will move foward in a walking motion, with memories I can bring with me, but have no shame, judge me, you might, but you can't say im not doing it right.
If you look into my heart Im a much kinder person but harsh and tough when I need to be, but still can be soft and I cry for reasons sometimes I don't even know...but
before I close my eyes at night, I think I made it through another day, and I pray that tomorrow we can too,
you look at my face, it always looks the same, maybe a smile if your lucky, they don't come easy,
but if you could see inside my heart you would see the mom, who tries as ahe might, and only hope she takes care of her boy right, but what will happen come that fateful day?? Its a world of fear where that part of my heart lives all alone, so before judging one, just try to first understand...

Thursday, September 1, 2011

24

baby not yet born,pregnet at 24
at 25 so greatful she survived
miscarriage at 22 and again at 23,
there was noting left inside of me,
healthy baby girl, through c section,
she came into this world,
noting but joy
of tears filled my eyes,
being a mother has made me wise
life wasn't always easy
but thats no surprise,
a another gift from heaven
a baby boy, I was 27,
I wasn't always brave
as dark clouds rolled our way
as they covered the once so brigt sun,
our challenges now begun,
through it all we found our way
my boy was still perfect
in every way,
not much time to settle down
before we knew it, fate came around,
opened a new gate, pregnet again
baby boy was born, I was 28
now a family of 5,we somehow survived,
The roads been windey and sometimes long
I replay it time to time
like a facourite song
the lyrics they don't change,
but the music doesn't stay the same,
im a mom with alot of fears
but I move foward with no shame
I live a life now with my kids like so few
I can write you a whole story today,
Im only 32

Wednesday, August 31, 2011

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!

Tuesday, August 30, 2011

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!