my songs

http://youtu.be/WM7-PYtXtJM

Wednesday, July 4, 2012

landslide (confessions of a mom of a special needs boy)

So here I am... this post is a mixture of landslide(song by Stevie Nicks) and confession... confessions I have being a mom of a special needs boy, its just not all glitter and fame!


 First off, I don't like writing blogs, not at all, though I truly enjoy reading other peoples blog, it gives a glimpse inside their world , getting some idea of who they truly are, but for me, it feels like an insult to what I really want to write, a tell all book of raising a son who is medically complex, through his 24\hr care, and how we make it through another day, and at teh same time, trying to find some normalcy for our family and other 2 children.
Somehow I ended up turning to blog writing now and then, and that makes me feel like a bit of a quitter, but I did manage to write some memories down both good and some not so good.

 As always there is a theme song as there is to all my posts, this one is "Landslide" the origonal one, by Stevie Nicks, I like all origonal songs best, and I can't beggin to tell you how I feel about those nasty Dixie chicks doing a horrible, butcher cover of it, FAIL!!! who even likes those girls anyway?!?
http://youtu.be/WM7-PYtXtJM

 As I look back on my life, there is a big part of me that wants to reach out to that girl that use to be me, a girl that was mixed up, dazed, and lost , and i want to give her a big hug and tell her its going to be all right! and maybe let her know that running shoes and dress pants was not okay, no matter how cool i thought I looked! and that hair really wasn't working for her!( lets just say , im glad no one really gets perms anymore)
I like who I am today, a lot better then who I was, im stable, I have a functioning brain(most the time) and I have my priorities order, and I have my kids to thank for that, and my son, my special boy with speial needs, thanks to having him, makes me feel like Ive grown into my own skin, And it doesn't hurt so bad when I look at that girl in the mirror, that same special boy has also taught me whats really imporant in life, and that petty things, are just that, petty!
 Having said that doesn't mean I don't get sad, or wonder what might be, if I didn't have 3 healthy kids, no issues, just the regular stuff everyday parents face,
I think about time to myself , and how very little of that I actually have, and what it must be like to just get up and go.. to have a regular babysiiter, a night out just my husband and I? or a girls night out, to ask crazy and do things that I will regret the next morning, but knew that it was still fun!

 Then I get guilt ridden! I instantly feel bad for having such thoughts, and I should be punished! and when my son falls ill, I feel that was my punishment for ever thinking such things. those voices in my head coming back to haunt me...

 Truth is, even though i may wonder, i wouldn't trade my life o my son for ANYTHING! I love both my life and that boy endlessly, truth is, I have respite money set aside, I could find a qualified erson to help with my son, But i always find reasons not too, saying they just don't exist, cause in my head they don't.. i feel noone is as good as me to care for my special boy, and a part of me doesn't want there to be, cause then it takes away from me, that someone may be better, and as good as I am at taking care of him, it will take away what im so good at, making me feel, less important, undoing who ive become, who I feel I am today.. feel free to stop reading if this makes no sense!

 I also wonder time to time, what my boy would be like if he was like his brother and sister?
would he still be a quiet boy who doesn't say too much? would he also do as he was told, ? would
he sit quietly and play, ammusing himself, stay out the fueds his brother and sister get ino daily?would he be the boy that if I didn't see him wouldn't know he was there?
then I look at him and who he is, and i smile, he's my perfect boy anyway.

Theres not always answers to why kids have special needs, doesn't mean i don't wonder what went wrong?  Just don't believe " its just Gods way" theory, why wold he want this for kids? innocent little creatures who never even asked for life, it was just chosen for them? so yes, I do blame myself, ive never addmitted this out loud, always said the oppsoite, infact, I did everyting right during pregnacncy , but i can't help wonder, did i miss something? not feel something when i should have? or feel something I shouldn't have felt?
truth is, I often feel this isn't who my boy was suppose to be, but I didn't get him the help he first needed when I felt so hard there was something wrong, noone would listen to me, noone would hear the cries of a mother who repeatly said, 'theres somethig just not right with my son"! by the time it was proves i was right, it was too late, to much time of a newborn life was waisted, and now my boy pays the price, of me not shouting louder for someone to listen, I feel i didn't fight hard enough then, and now it seems all I do is fight, I fight to get him the care I know he needs, I don't let anyone try and tell me what he needs, if I don't like the care he gets, I go elsewhere, I fight to keep my boy alive when others felt I should let go... now I know the game, I know how to fight, but did I back then? tears and anger for mysef overwhelm me, i can't go back..

 My tired confession is just that, Im tired! there are some nights, I just want to drag my tired self to bed, and not worry about carting up feeding/suction supplies behind me, or have to get up every few hrs to tend to my boy, or if for some reason he decides that night he's not going to sleep, then as tired as i am, star awake with him, but most of the time, it doesn't matter to me as tired as I am, I do it anyway, cause love wins everytime!

 Then there's the medical, I hate that my sons reqired 24hr oxygen in order to breath, it breaks my heart, hes only 6! but for now, its what he needs and what I love, is is ability to breath easier, and have a cold, and not land in the ICU or a dragged out hostpital stay everytime, and it gives him the ability to fight of this heat and humidity just a little easier.
 i hate that my son had to be suctioned in ordered to maintaine a clear upper airway, but love the fact
that parents are now given the knowledge and tools to do such things so our little ones can maintaine a home life with a mom and dad, that love them surrounded by the rest of their family who also love them! it shows such how far our healthcare has come by letting us do so.

  When it comes to eating, it was never an easy thing for my boy, he struggled for the first 8months of his life , with us finding ways to modify ways to keep him eating my mouth, but finally came the feeding tube, I have regrets about that, even thou I said I didn't, I feel I just didn't try hard enough, find a way around the tube, after it was put it, it became too easy to feed him, I no longer tried to feed
him by mouth, i was scared, it seems to dangerous, and it was just eaier not too, and now i sit and wonder, if I kept trying, would he be able to have taste today? would he now have no need for a feeding tube?  I see how hard other parents fight to feed their children and what a great job they are doing,
then I feel sad, I should have been that kind of parent who worked that hard on my sons feeding, and not give up, just cause a tube went it, but my son has now gained weight, and he no longer has failure to thrive, and that , makes my heart happy to see, but at the cost of deprivimg my son from ever tasting his food? I will never know what might have been , and now with his lack of ability to swollow as he should, food, him, and his mouth cordination have become a danger zone, we dare not go...

Dr's once thought my son would be able walk, but as he grew, it became clear that he will never walk,
and the ability to raise his tiny hands to his mouth have vanished with time, and the cause is still unknown
I do miss that little baby who would roll from one side to the other, and suck endlessly on his fngers, I wonder where it all went wrong, then I think of his medication, he was so early medicated  to stop the frequent seizers he was having, but was that what stopped all his mobility?  or was this what was going to happen with time?  We got here how ever we got here, And I love my the same as if he could do all the things that i had hoped he would do.

  I live with the thoughts daily that one day, my little boy is not going to physically be with me anymore, and that he's going to be for the first time, be all alone, and so will I, i have no idea how I would overcome from this, he is attached to my soul, every part of who he is, how he feel how he breaths is attached to me in just a way I can not put into words,
I get scard when hes sick or unwell, but im the only person in this world who is not afffraid of him as a child ad who he is, who looks into his eyes and can see the bright spirit, joy, and love that lives inside of him, his eyes that talk so loud, but when sick, are so quiet...

 Just like the song says, "ive been fraid of changes, cause I built my life round you"
stands true in so many ways for my son and I... I don't like him in the care of others, and he doesn't like anyone but me to care for him, and together he and I grew on that, and thatts how ive built the past 6yrs of my life, and im in no way complaining!


 Girls nights out may be few and far between, I still go out, mainly to rock concerts, that part of me has yet to go away, my endless love of rockstars!! or a shopping trip here and there, and date nights are behind close doors with my husband, but lets face it, those are the best kind,
im ok with all this, cause i love my boy, and my kids more.
 
These confessions may not seem like alot , but it tells just who I am, and not who i use to be,
landslide moves us all along, we all get older and change with the change times, but it doesn't stop us from looking back on a life that once was or the way we imagined it would be, and the free thoughts of wondering what if?...