All my other kids at four were very open with what they thought. Not Nellie though. I can see the little gears in her brain turning, but usually she just ends up telling me something about Sponge Bob or Buses. Nellie loves, loves, loves, buses. We cant go down a street and not have ever bus pointed out while she screams A BUS! Perhaps that is the extent of her worries in life, when she'll see the next bus. How bad could that be! Not terrorist attacks, fires, or illnesses, but simply buses.
There are many mysteries that are Nellie. Like how she can spin and spin and never get dizzy. Why she'll eat ketchup on a McDonald's hamburger, but if it's an anything else she acts like we are trying to poison her. Okay she does kind of get this from me, but my things onions. I can eat them on burgers, but nothing else. I wonder what she finds so fasinating in a spinning bike wheel that it can keep her attention for more than 5 minutes.
Yes, Nellie is a mystery as is the pyrimids, grand canyon. Amilia Earhart's plane. The many things in life that have boggled minds for centuries. She is a puzzle, but one I'm happy to sit and put together.
Saturday, July 31, 2010
Friday, July 30, 2010
A poem "I understand"
The words you want to say won't come
and fustration sweeps across you face
You have so much you want to say
but it all gets lost along the way
I understand
I know that sometimes people scare you
and people look at you as though you're different
It's ok, there are many people who never will
but those that love you do
They understand
When you're hurt and come to me
I rub your arm
and you look at me
You know I wish I could take your pain away
You understand
When you look upon a bright blue sky
or watch the snowflakes fall
You know these are gifts from God
Just as you were to me
He understands
I know understanding isn't something everone has
and people will sometimes be mean
I know that as you grow kids will laugh at you
and not want to be your friend
They don't understand
But I do
Our family does
Our friends do
and most of all God does.
And in the end those are the people who matter!
There will be time to help so many
come to the point of understanding
If they take just a moment to see you for who you are
they will see everything you have to offer
Then they too will understand!
and fustration sweeps across you face
You have so much you want to say
but it all gets lost along the way
I understand
I know that sometimes people scare you
and people look at you as though you're different
It's ok, there are many people who never will
but those that love you do
They understand
When you're hurt and come to me
I rub your arm
and you look at me
You know I wish I could take your pain away
You understand
When you look upon a bright blue sky
or watch the snowflakes fall
You know these are gifts from God
Just as you were to me
He understands
I know understanding isn't something everone has
and people will sometimes be mean
I know that as you grow kids will laugh at you
and not want to be your friend
They don't understand
But I do
Our family does
Our friends do
and most of all God does.
And in the end those are the people who matter!
There will be time to help so many
come to the point of understanding
If they take just a moment to see you for who you are
they will see everything you have to offer
Then they too will understand!
This is when I wish she could communicate better
My poor Nellie. As many know she has a problem with her foot that makes her walk on the side of it. Well wasn't she spinning in a circle's and fell down. I swear yesterday was the day for children's accidents. Just from a few of my friends yesterday I heard about a bloody lip, a broken arm, and a few scrapes and bruises. So anyway, back to the foot. She must have hit it on the end table when she went down because the only mark I could find was a slight indent on the top of her foot. She screamed though, and Nellie only cries if something really, really hurts.
I debated for an hour whether or not to take her to the er. It wasn't bruising or swelling so my heart told me no she'd be okay. I had someone else look and they said it looked fine too. Still she limped and said my foot, my foot. I tried to ask her to point to where it hurt (to figure out if it was her foot, ankle, heel etc), but to no avail.
These such times are when I wish she could tell me things more clearly. I'm so afraid of her being hurt and not being able to tell anyone where it is that is injured. Or God forbid she gets sick and can't show us where the pain is.
I will say I am getting better at the guessing game with her and if I point to something and say boo boo she will sometimes shake her head no. At least that does help narrow things down!
I debated for an hour whether or not to take her to the er. It wasn't bruising or swelling so my heart told me no she'd be okay. I had someone else look and they said it looked fine too. Still she limped and said my foot, my foot. I tried to ask her to point to where it hurt (to figure out if it was her foot, ankle, heel etc), but to no avail.
These such times are when I wish she could tell me things more clearly. I'm so afraid of her being hurt and not being able to tell anyone where it is that is injured. Or God forbid she gets sick and can't show us where the pain is.
I will say I am getting better at the guessing game with her and if I point to something and say boo boo she will sometimes shake her head no. At least that does help narrow things down!
Thursday, July 29, 2010
A picture for the day :)
I don't have a whole lot to say today....yeah those that know me are saying yeah right, but it's true!!!!
Nellie asleep in her rocking chair!!!!!
Wednesday, July 28, 2010
My fears are not necessarily her fears
At four most children understand rejection, teasing, or even get hurt feelings when someone makes a comment, but not Nellie. In a way I'm thankful she doesn't understand the stares she sometimes gets. I always say how peoples looks bother me and my husband always asks me why. I tell him it just does, but the truth is deeper than that. I know deep down that for the rest of her life there will be people who stare, make comments, or snicker behind her back. No, Nellie may no understand, but I DO!!! She has this innocence about bad things that blocks out the negative people in the world and maybe I need to try to be more like that, but I can't.
It hurts me when people look at her eyes and laugh, it breaks my heart when she does something and people say nasty things. It's the same pain I have when one of my other children recall an instance where they have been teased, their pain is my pain.
I have so many fears for Nellie. I worry about people using her, abusing her, and the care she will receive. What will happen to my sweet angel when the evil in the world pokes out it's head and she just don't understand that this evil wants to harm her?
I understand she'll never be a rocket scientist, but I don't want her to be treated like a child when she's 30. She is capable, perfectly capable of doing many things others do, she just does them differently, or can't communicate as well. I worry about how she'll get around with her vision impairment, I worry if her hearing will go completely. There are so many worries that I harbor it's a miracle I'm still sane (well somewhat sane anyway). Then I look at Nellie and she smiles. She smiles through news stories that scare other children, she smiles through doctor appointments that would send children into fits of horror. She just keeps smiling.
Emma (My six year old) said something recently that really struck a cord. I was crying after Nellie's autism diagnoses and she turned to me and said, but mom Nellie doesn't know there's anything wrong with her and I laughed. She was right. To Nellie she is just like everyone else. She has fun like everyone else (in fact more fun I think). She has likes and dislikes. Her world may be a Little different than ours, but she doesn't know that. In Nellie's world she is "normal" and a big part of me wishes I too could be in that world. I want to live in a place where bad things don't exist. Where the most pain caused by others is a skinned knee from being knocked over. I want to be in a place where I can spin around in a circle until a fit of laughter makes me fall to the floor. A place where I can roll down a hill and play in the mud without any other cares. Yes, this must be a beautiful place and I am lucky to catch a glimpse of it now and then.
Perhaps when I look at things this way my fears should be lessened. Maybe my only fear should be that one day something will crumble this perfect world and she WILL begin to understand what people say, the stares and worst of all the comments. A place where I can sit in a beautiful sunset every night enjoying quietly the beauty of the things around me.
It hurts me when people look at her eyes and laugh, it breaks my heart when she does something and people say nasty things. It's the same pain I have when one of my other children recall an instance where they have been teased, their pain is my pain.
I have so many fears for Nellie. I worry about people using her, abusing her, and the care she will receive. What will happen to my sweet angel when the evil in the world pokes out it's head and she just don't understand that this evil wants to harm her?
I understand she'll never be a rocket scientist, but I don't want her to be treated like a child when she's 30. She is capable, perfectly capable of doing many things others do, she just does them differently, or can't communicate as well. I worry about how she'll get around with her vision impairment, I worry if her hearing will go completely. There are so many worries that I harbor it's a miracle I'm still sane (well somewhat sane anyway). Then I look at Nellie and she smiles. She smiles through news stories that scare other children, she smiles through doctor appointments that would send children into fits of horror. She just keeps smiling.
Emma (My six year old) said something recently that really struck a cord. I was crying after Nellie's autism diagnoses and she turned to me and said, but mom Nellie doesn't know there's anything wrong with her and I laughed. She was right. To Nellie she is just like everyone else. She has fun like everyone else (in fact more fun I think). She has likes and dislikes. Her world may be a Little different than ours, but she doesn't know that. In Nellie's world she is "normal" and a big part of me wishes I too could be in that world. I want to live in a place where bad things don't exist. Where the most pain caused by others is a skinned knee from being knocked over. I want to be in a place where I can spin around in a circle until a fit of laughter makes me fall to the floor. A place where I can roll down a hill and play in the mud without any other cares. Yes, this must be a beautiful place and I am lucky to catch a glimpse of it now and then.
Perhaps when I look at things this way my fears should be lessened. Maybe my only fear should be that one day something will crumble this perfect world and she WILL begin to understand what people say, the stares and worst of all the comments. A place where I can sit in a beautiful sunset every night enjoying quietly the beauty of the things around me.
Tuesday, July 27, 2010
The voice of understanding
For two days I have been talking to a mother who understands, truly understands. I can't tell you how good that feels. There is a relief to have someone who can answer my questions, lessen my fears, and generally just laugh with. I want to thank her (you know who you are).
For so many years I have been on what I'll describe as a darkened path. As the tests began coming back a bit more light shone through, but still not enough to see the dangers and pitfalls. By finding just one other person It was like the light switch was turned on and I could see there was actually two paths. One led me toward the darkness again. That place of self pity, and why mes. The other led to a beautiful field filled with wild flowers where people stood waiting to tell me, Hey, it's going to be okay. Let me show you how to get past these obstacles and what lies beyond is even better than what you see here.
I have to thank modern technology for bring together people who may have never had the light bulb turned on and the places that help bring them together. These are the road signs with the arrows and all we have to do is follow them. Once in a while though we have to stop and ask directions so that one day we'll be the ones with the voice of understanding, the guides that lead someone into the light!
For so many years I have been on what I'll describe as a darkened path. As the tests began coming back a bit more light shone through, but still not enough to see the dangers and pitfalls. By finding just one other person It was like the light switch was turned on and I could see there was actually two paths. One led me toward the darkness again. That place of self pity, and why mes. The other led to a beautiful field filled with wild flowers where people stood waiting to tell me, Hey, it's going to be okay. Let me show you how to get past these obstacles and what lies beyond is even better than what you see here.
I have to thank modern technology for bring together people who may have never had the light bulb turned on and the places that help bring them together. These are the road signs with the arrows and all we have to do is follow them. Once in a while though we have to stop and ask directions so that one day we'll be the ones with the voice of understanding, the guides that lead someone into the light!
Nellie is a gift from God!!!!! She is!!!!
And I have proof :) Here is what the bible says about being disabled:
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
1 Peter 4:1 ESV
Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin,
,
I save the best for last:
Exodus 4:11
Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?
Repeat hat last verse. That's right the Lord has made her with His perfect plan in mind. I am trying my best with this blog and other means to do what I think God's plan is, to reach out to other families. To hug them, pray for them, whether or not we have ever or will ever meet. In my heart I believe He wants me to spread the word you are not alone.
It's my faith that has given me my strength to get through everything. Yes, it would be easier to pick up a bottle of booze and drown away all the pain, to hide from the fears I have for Janelle, it takes so much more strength to say I trust you God. I know You have blessed me with my child for a reason and I except this gift and will use this gift to do what it is You want me to.
I'll end the blog with this. The bible says:
And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven. “Whoever receives one such child in my name receives me, but whoever causes one of these little ones who believe in me to sin, it would be better for him to have a great millstone fastened around his neck and to be drowned in the depth of the sea.
(Matthew 18:2-6 ESV)
So now ask me again how I can believe in a God who makes a child like Janelle and I say again, HOW CAN I NOT!
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
1 Peter 4:1 ESV
Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin,
,
I save the best for last:
Exodus 4:11
Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?
Repeat hat last verse. That's right the Lord has made her with His perfect plan in mind. I am trying my best with this blog and other means to do what I think God's plan is, to reach out to other families. To hug them, pray for them, whether or not we have ever or will ever meet. In my heart I believe He wants me to spread the word you are not alone.
It's my faith that has given me my strength to get through everything. Yes, it would be easier to pick up a bottle of booze and drown away all the pain, to hide from the fears I have for Janelle, it takes so much more strength to say I trust you God. I know You have blessed me with my child for a reason and I except this gift and will use this gift to do what it is You want me to.
I'll end the blog with this. The bible says:
And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven. “Whoever receives one such child in my name receives me, but whoever causes one of these little ones who believe in me to sin, it would be better for him to have a great millstone fastened around his neck and to be drowned in the depth of the sea.
(Matthew 18:2-6 ESV)
So now ask me again how I can believe in a God who makes a child like Janelle and I say again, HOW CAN I NOT!
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