MAJOR VENT

[Guest guest]

Hi friends,

I am tired of it all today. I'm tired of trying to figure out what it wrong

with Logan. Why is he the way he is,,and will he ever get better,worse/ or stay

the same ?

My mom is here,for her yearly visit. She only sees Logan once a year,,so i

feel she is a pretty accurate judge of ,whether Logan is getting

better/worse,staying the same. She told me yesterday that she thinks that Logan

is looking more and more like there is " something wrong " .She said that he used

to look a little different,some of the time,,but now it is obvious. She thinks

that he has something progressive. Now this is from the Queen of Denial,,,so I

am really taking this hard.She never admits that Logan has a problem.

So,,here is what I am feeling. I feel like I can't handle this anymore,,like

this is going to make me go crazy,one of these days. I love Logan so much,,and I

just want to be able to worry about things like " Does he have an ear infection "

or " Has he learned all his math facts ? " I am tired of trying to explain why he

is so immature,and why he cries alot. I am tired of ignorant people saying that

they think he is just fine,,he is just trying to get me to do things for him .

I'm tired of having PT's,

OT's,neurologists,endocrinologists,rheumatologists,geneticists,developmental

pediatricians . I don't want a team of Dr's,,,,I want ONE pediatrician,,,thats

all. I don't want orthotics,,and strollers,or horse therapy,,or ANY kind of

therapy. I want baseball games,and sleep overs,,bike riding,and roller skating.

I'm tired or tricycles,and velcro straps,,pull-ups and eye patches.I'm tired of

always being on the lookout for the next horrible thing that is about to happen.

I'm tired of Ethan being Logan's big brother,,when it should be the other way

around. I'm tired of nightlights,and Melatonin. I'm sick of going to endless

testing,,blood draws,and knowing what they mean,when they say "

myopathy,encephalopathy,mitochondrial diseases " I want to be ignorant. I want to

be clueless,,when they say degenerative,,I want to think that the worse thing in

the world is your child having an ear infection,or braces.

I just want the life I thought I would have. I'm really sorry about this major

vent,,but I am just so sick of it all.

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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[Guest guest]

Kim,

We are right there with you. You hear people say, and this is my

favorite " God never gives you more than you can handle " . Okay, God,

I have enough! I can't take anymore. And then we get up the next

day and do it again. People ask me how I do it. How do you not? NO

one gave me a choice. My other two were just diagnosed, and me too.

N one asked me if this was okay. It just was done. We just have to

do it it and we will. It is hard, and sad, and frustrating. Be we

all understand it. Everyone here on this list in on that same boat,

we do understand and we are in this together. I am sorry you are

feeling so overwhelmed. Is there a chance while your mom is in town

for you to have some you time? Take advantage of it. Pamper you.

Spoil you. Don't let guilt get in your way, your deserve it.

Dawn

[Guest guest]

Kim,

I think you put into words how most of us feel. I know I have days that I

want to just crawl in a hole and hide from it all. I have my days when I

wonder, " why did this have to happen to us... " I often pray that God would

just miraculously " fix " my girls. Deep inside though, I know it's not going

to get any better...in fact it's probably only going to get worse. But,

then I think about my precious little girls and how much love they have to

give and how much they have taught me in such a short amount of time. They

have taught me the true meaning of unconditional love. They have made me a

better person by being their mommy. Although we face many struggles, I try

so hard to remain positive and try to live life as normal as possible. I

know my girls are a true gift from God. He gave them to me for a reason. I

don't know if he gave them to me for a long time or a short time but, I do

know that no matter what curve balls life throws our way, I will be there

for them, loving them with every ounce of my being and fighting for what

they need and deserve.

I hope you are feeling better getting your frustrations out. I know that

helps me a lot to just talk to someone. Especially someone who understands

exactly what you are going through. Take care and enjoy the little things.

Kim - Mom to and Lindsey (turning three tomorrow!) Partial Complex I

MAJOR VENT

>

>

> Hi friends,

> I am tired of it all today. I'm tired of trying to figure out what it

wrong with Logan. Why is he the way he is,,and will he ever get

better,worse/ or stay the same ?

> My mom is here,for her yearly visit. She only sees Logan once a year,,so

i feel she is a pretty accurate judge of ,whether Logan is getting

better/worse,staying the same. She told me yesterday that she thinks that

Logan is looking more and more like there is " something wrong " .She said

that he used to look a little different,some of the time,,but now it is

obvious. She thinks that he has something progressive. Now this is from the

Queen of Denial,,,so I am really taking this hard.She never admits that

Logan has a problem.

> So,,here is what I am feeling. I feel like I can't handle this

anymore,,like this is going to make me go crazy,one of these days. I love

Logan so much,,and I just want to be able to worry about things like " Does

he have an ear infection " or " Has he learned all his math facts ? " I am

tired of trying to explain why he is so immature,and why he cries alot. I am

tired of ignorant people saying that they think he is just fine,,he is just

trying to get me to do things for him . I'm tired of having PT's,

OT's,neurologists,endocrinologists,rheumatologists,geneticists,developmental

pediatricians . I don't want a team of Dr's,,,,I want ONE

pediatrician,,,thats all. I don't want orthotics,,and strollers,or horse

therapy,,or ANY kind of therapy. I want baseball games,and sleep overs,,bike

riding,and roller skating. I'm tired or tricycles,and velcro

straps,,pull-ups and eye patches.I'm tired of always being on the lookout

for the next horrible thing that is about to happen. I'm tired of Ethan

being Logan's big brother,,when it should be the other way around. I'm tired

of nightlights,and Melatonin. I'm sick of going to endless testing,,blood

draws,and knowing what they mean,when they say "

myopathy,encephalopathy,mitochondrial diseases " I want to be ignorant. I

want to be clueless,,when they say degenerative,,I want to think that the

worse thing in the world is your child having an ear infection,or braces.

> I just want the life I thought I would have. I'm really sorry about this

major vent,,but I am just so sick of it all.

>

>

> Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and

Ethan 5 and 100 % BOY

>

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>

[Guest guest]

You know it is so hard not to have to vent sometimes I think we all just keep it

inside way to much. I honestly find myself crying by my self cause I dont want

to tell anyone why I am crying and everytime I do cry especially if Niki sees me

crying she will say mommy I am okay no cry for me. I know it is hard. But we

all need to break down sometimes. I have to agree with someone else who wrote

what people always say, God doenst give you things you cant handle. Are you

serious who does he think I am super woman? I believe in god and I even used to

go to church. It is just so overwhelming when everyone knows your child is sick,

they look at you like um you poor thing. I hate that so much. Even the doctors

who you end up having to see for the first time and they hear her dx and they

say oh you poor thing. Please dont pitty me, just pray for me it makes me

stronger. I even get so scared to go out with out her I feel like what if

something happens when I am out. I tel you my friends yell at me all the time.

They say I am single cause I dont go out to met anyone. I dont think I am ready

yet. I mean I met one guy who was jealous of my daughter. I was sick I mean her

father left cause she was sick and that killed me so why bother anymore? But

then I get so sad cause I dont have anyone because even though I love my little

girl I miss having someone to baby me. You know just someome to hold you and

kiss you and hug you. I mean just someone to say it will be alright dont worry.

Or you know just to be there. I guess sometimes I get jealous because her

father just goes on with life and has girlfriends and please just goes on with

life. And me I havent met one person and I honeslty am so afraid of meeting

someone. I know crzy!! Anyway thanks for listening

and we all feel your pain..