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!
Leanna says......
I need to post about her today. So her wish is my command (You don't want to see what happens if Leanna doesn't get her own way!!!!!). Leanna is number 3 of our six. She struggles daily with ADHD and ODD. She is very short for her age and if I could eat as much as her and stay as skinny as her well I wouldn't worry about the diets I never manage to start.
Leanna and Nellie are very close. Leanna is the first to say when I grow up I'm going to take care of Nellie. When Nellie was a baby Leanna insisted upon changhing her diapers and as she grew Leanna never complained about Nell's touching and or taking her stuff.
Leanna is known as our Nonie Monster cause she always climbed on everything (She ould literally climb the doorways of our house at a year and a half old). When people say you have your hands full, usually they had just met Leanna.
As much as she can drive me insane and get into things she shouldn't she's my baby girl and I love her more than words can ever express. My life would be rather boring without her in it.
Leanna I love ya girl! I hope you like this blog Sweetie :)
Leanna and Nellie are very close. Leanna is the first to say when I grow up I'm going to take care of Nellie. When Nellie was a baby Leanna insisted upon changhing her diapers and as she grew Leanna never complained about Nell's touching and or taking her stuff.
Leanna is known as our Nonie Monster cause she always climbed on everything (She ould literally climb the doorways of our house at a year and a half old). When people say you have your hands full, usually they had just met Leanna.
As much as she can drive me insane and get into things she shouldn't she's my baby girl and I love her more than words can ever express. My life would be rather boring without her in it.
Leanna I love ya girl! I hope you like this blog Sweetie :)
One step forward one step back
Nellie potty trained in March. I was so thankful to her school since I truly believe it was the positive reinforcement she got there since they took all the kids at once. You know monkey see monkey do. Well anyway I was thrilled lol. No more diapers for a 60 pound kid (which by the way are not easy to find!). So fast forward 4 months and now what is Nellie doing...that's right the floor is her bathroom. She will only pee in the potty. This is one time I am thankful she has hard stools! Not only this, but she is peeing at night,which she hadn't been doing. She used to wake up screaming until one of us got up to take her. Not anymore now she just pees my bed.
It feels funny asking an almost four year old why they pooped on the floor, though I know she won't answer I still ask. It's as bad as me having to constant remind a few of the kids that we must wear clothes it's improper to walk around naked all the time! Again not something I thought I'd be saying everyday.
I titled this one step forward one step back since that seems to be how things go for Janelle. She is doing better in some areas and every time that happens she regresses in others. Why oh why does it have to be the use of the potty she's regressing on???????
It feels funny asking an almost four year old why they pooped on the floor, though I know she won't answer I still ask. It's as bad as me having to constant remind a few of the kids that we must wear clothes it's improper to walk around naked all the time! Again not something I thought I'd be saying everyday.
I titled this one step forward one step back since that seems to be how things go for Janelle. She is doing better in some areas and every time that happens she regresses in others. Why oh why does it have to be the use of the potty she's regressing on???????
Monday, July 26, 2010
The strongest people
The strongest people in life are not those who can life the most weight. They are not the people who look at the sadness in the world and never shed a tear. No the strongest people are some of the smallest, some of the most overlooked, the people you pass everyday and never think about. Yes, the strongest people are hidden in the wold and it's time the spotlight is on them.
I see strength in the eyes of the children and adults who struggle everyday to do the things most take for granted. I see power in the child who sits in a wheelchair on the sidelines cheering on the other kids, while deep down he wishes he was one of them. I see brawn in the mind of a person who has never laid eyes on a sunset, yet can live as freely as us with perfect sight. As I have began making my rounds in the world of disabilities I realize now the vast differences in people and the challenges they live with.
To the families who deal with the challenges along side their family member you too have more strength than you will ever know. You deal with the looks, the snide comments, and yes even laughter. You hold your head high knowing the rude people in the world will never know love like you do. If a person goes through life never seeing a storm, never feeling wind so strong they are nearly blown over, well r world is always perfect, sunny. Then one day the wind comes and everything they have ever known is destroyed. They cry, they scream at God for answers. Everything is just gone. Families who have been through the storm, they won't get blown over. Their lives stand perfectly tall and straight as they had before the storm They know that though the rain is falling now, soon the sun will shine again.
Us families of disabled children understand each other in a way no one else can. We can talk in medical jargon, know every hospital within 100 mile radius, and can carry a list of conditions and medicines in our head. We are nurses, doctors, support systems. We compare stories as pregnant woman do. We share what has worked for us, or what hasn't. We all belong to a large family that spans around the world.
I know for me when I am in a doctors office and I see another child with autism, or vision issues, or numerous other problems I can talk to this person as if I've known them my whole life. In most cases our children have seen many of the same doctors or had any of the same tests and for a moment I feel a whole lot less alone. I can see in the eyes of this other mother the pain that comes with years of searching, the mourning for what could have been, the wonder at what could have been differently. Above all those other emotions though, I see the strength of a person who would die for their child, would fight to the end for their child, and above all love a child and believe in a child that the world seems to want to cast off. I hear you, I'm with you, and forever I will stand beside you.
I see strength in the eyes of the children and adults who struggle everyday to do the things most take for granted. I see power in the child who sits in a wheelchair on the sidelines cheering on the other kids, while deep down he wishes he was one of them. I see brawn in the mind of a person who has never laid eyes on a sunset, yet can live as freely as us with perfect sight. As I have began making my rounds in the world of disabilities I realize now the vast differences in people and the challenges they live with.
To the families who deal with the challenges along side their family member you too have more strength than you will ever know. You deal with the looks, the snide comments, and yes even laughter. You hold your head high knowing the rude people in the world will never know love like you do. If a person goes through life never seeing a storm, never feeling wind so strong they are nearly blown over, well r world is always perfect, sunny. Then one day the wind comes and everything they have ever known is destroyed. They cry, they scream at God for answers. Everything is just gone. Families who have been through the storm, they won't get blown over. Their lives stand perfectly tall and straight as they had before the storm They know that though the rain is falling now, soon the sun will shine again.
Us families of disabled children understand each other in a way no one else can. We can talk in medical jargon, know every hospital within 100 mile radius, and can carry a list of conditions and medicines in our head. We are nurses, doctors, support systems. We compare stories as pregnant woman do. We share what has worked for us, or what hasn't. We all belong to a large family that spans around the world.
I know for me when I am in a doctors office and I see another child with autism, or vision issues, or numerous other problems I can talk to this person as if I've known them my whole life. In most cases our children have seen many of the same doctors or had any of the same tests and for a moment I feel a whole lot less alone. I can see in the eyes of this other mother the pain that comes with years of searching, the mourning for what could have been, the wonder at what could have been differently. Above all those other emotions though, I see the strength of a person who would die for their child, would fight to the end for their child, and above all love a child and believe in a child that the world seems to want to cast off. I hear you, I'm with you, and forever I will stand beside you.
When I am gone and siblings oh my
After Nellie's new diagnoses my mother said: Well you better start thinking about her care after you're gone. Little did she know that was something I'd already thought about over and over. I think all parents regardless of if their child is disabled or not. We do have a guardian picked out, but if our other children are old enough we hope and pray one of them would also take care of their sister. The last thing I ever want to happen would be for her to be taken away from her family and put into a home.
I have no doubt that one of Nellie's siblings would take her, why, because they adore her. I grew up with a disabled sister and my mother basically threw me to the side. I was determined not to allow that to happen in my house. The other children have always understood Nellie and the things that are "wrong" with her have been explained thoroughly to the best of our abilities. The understand she may not always be able to do things other people do and they always baby her because of this. They are gentle, patient, and very kind to her. They take her under their wings and will help her find a way to join in their activities.
Yes, my children get disappointed at times when we can't do something because Nellie can't handle it, or if we have to leave somewhere because Nellie got sick, but they always rub her back or hands(Th only two places they can touch on her) and tell her it's okay.
I think it's important as a parent that each child feels special and loved and it is because my children are they are so excepting. In fact my two middle daughters look forward to hospital trips so they can ride the elevators. All of our lives have changed in four years, but where my kids may fight, argue and generally just torment each other they don't Nellie and when it comes down to it they rally together for the good of the family.
I worry that our blood tests will come back me and Dave are the carriers and a few of our other children have this condition as well. I am thankful they are not as effected as Janelle and I'm glad their lives will be easier than hers. But what I am most glad about is they will always love their sister.
I have been witness to many occasions of love poking it's head out from them. Leanna who weighs more than 15 pounds less then Nellie will let he sister climb on her back and give her a piggy back ride. David will sit next to her and watch TV shows made for a three year old. Sara just yesterday watched her sister at a park so she could play longer. Emma will play barbies and never complain when Nellie steals them. It even seems Devony realizes something and sits and laughs at her sister. It warms my heart to know how much love is in this house. I am sure it oozes out the windows and flows across the neighborhood at times.
So I am sure when my time comes the only fighting between the siblings will be who Nellie is going to live with. I know they like us ill be thankful to feel the love and happiness in their households and with their children :)
I have no doubt that one of Nellie's siblings would take her, why, because they adore her. I grew up with a disabled sister and my mother basically threw me to the side. I was determined not to allow that to happen in my house. The other children have always understood Nellie and the things that are "wrong" with her have been explained thoroughly to the best of our abilities. The understand she may not always be able to do things other people do and they always baby her because of this. They are gentle, patient, and very kind to her. They take her under their wings and will help her find a way to join in their activities.
Yes, my children get disappointed at times when we can't do something because Nellie can't handle it, or if we have to leave somewhere because Nellie got sick, but they always rub her back or hands(Th only two places they can touch on her) and tell her it's okay.
I think it's important as a parent that each child feels special and loved and it is because my children are they are so excepting. In fact my two middle daughters look forward to hospital trips so they can ride the elevators. All of our lives have changed in four years, but where my kids may fight, argue and generally just torment each other they don't Nellie and when it comes down to it they rally together for the good of the family.
I worry that our blood tests will come back me and Dave are the carriers and a few of our other children have this condition as well. I am thankful they are not as effected as Janelle and I'm glad their lives will be easier than hers. But what I am most glad about is they will always love their sister.
I have been witness to many occasions of love poking it's head out from them. Leanna who weighs more than 15 pounds less then Nellie will let he sister climb on her back and give her a piggy back ride. David will sit next to her and watch TV shows made for a three year old. Sara just yesterday watched her sister at a park so she could play longer. Emma will play barbies and never complain when Nellie steals them. It even seems Devony realizes something and sits and laughs at her sister. It warms my heart to know how much love is in this house. I am sure it oozes out the windows and flows across the neighborhood at times.
So I am sure when my time comes the only fighting between the siblings will be who Nellie is going to live with. I know they like us ill be thankful to feel the love and happiness in their households and with their children :)
Sunday, July 25, 2010
I am humbled
I can't get over how many people are following Nellie's journey. Sometimes I am surprised people know who I am talking about since her name is Janelle, but I call her Nellie or Nell bells. It shows me how many of you care about and love Nellie. Some of you have been part of my life since I was pregnant with her and joined an expecting club that brought so many new friends into my world. You guys have been part of her story from her first diagnoses of visual impairment and listened as I cried about it. You were all there when one thing after another happened to her. Some of you have met her at our group meet ups and fell in love with her as well. You have held her, hugged her, never looked at her as if she were a sideshow. Jenni a special thanks and much love to you for your tireless research throughout the years. Your friendship and support has meant more to me than you'll ever know, and not only for the Nellie but my other children as well. Have I told you lately you rock?
To my Lil Acorn mommies you are all only a year and a half into my journey with Nellie but you all rock as well. Man, a lot of people rock tonight. Again some of you have had the pleasure of meeting Nellie. It seems like my little Nell Bells has Friends all over the country too!
My church family: Above all I must thank you all. Christy for taking Nell's into the bigger kids group because you like me knew she could do it. The people there who ask about her health and listen as I go on and on. Again thank you for not only being there with Janelle but for wiping away my tears when I finally burst out crying when Devony was getting sick. You are indeed my family too and I'm so glad Nell's will get to grow up surrounded by so many wonderful people.
Most of all I thank the people who have never spoken to me or even knew about Janelle until just recently. I am honored you care and glad people are learning about this condition. If it inspires even one person to not give up looking for answers then I've succeeded.
I also have to thank My Lord and Savior for blessing me with a beautiful little girl who He knew would bring so many together and bring joy into thousands of lives. I know He has a plan. I'm glad you all will get to be there to watch it unfold with me.
((HUGS))
I also want to add anyone who has any questions feel free to email me at: theremustbmore@aol.com
To my Lil Acorn mommies you are all only a year and a half into my journey with Nellie but you all rock as well. Man, a lot of people rock tonight. Again some of you have had the pleasure of meeting Nellie. It seems like my little Nell Bells has Friends all over the country too!
My church family: Above all I must thank you all. Christy for taking Nell's into the bigger kids group because you like me knew she could do it. The people there who ask about her health and listen as I go on and on. Again thank you for not only being there with Janelle but for wiping away my tears when I finally burst out crying when Devony was getting sick. You are indeed my family too and I'm so glad Nell's will get to grow up surrounded by so many wonderful people.
Most of all I thank the people who have never spoken to me or even knew about Janelle until just recently. I am honored you care and glad people are learning about this condition. If it inspires even one person to not give up looking for answers then I've succeeded.
I also have to thank My Lord and Savior for blessing me with a beautiful little girl who He knew would bring so many together and bring joy into thousands of lives. I know He has a plan. I'm glad you all will get to be there to watch it unfold with me.
((HUGS))
I also want to add anyone who has any questions feel free to email me at: theremustbmore@aol.com
Saturday, July 24, 2010
Bite me Mommy
Now I know that title brought on a few giggles ;) I had to tell everyone about Nellie's favorite game Bite me Mommy! This started innocent enough, never did I imagine the pain and daily torment this game would bring to the lives of those in my household who now live in daily fear of this game. When my kids were little I would pretend to bite the inner area of their elbows. They are all very ticklish there and they'd laugh and I'd say mmm... that's a good chicken wing.
Nellie has come to take this game very seriously. Me or one of the kids will be sitting around minding our own business and wham Nellie comes out of nowhere and yells I'm gonna bite you and before there is a moment to react she latches on with those huge chompers!!! These attacks are responded with a huge yell from the victim. Problem is Nellie doesn't understand when someone is hurt so she thinks these yells of pain are the greatest thing ever. She laughs hysterically and proceeds to yell Bite me Mommy!
Needless to say I have tried repeatedly to end this game of Bite me Mommy to no avail. Just when I think she has lost interest in it I get a big bruise on the thigh!
There is hope she has taken to now poking people very hard and yelling Tag you're it! Other than a few pokes in the eyes, scratches, and in a bit of over excitement she's knocked a few people down, but all in all much safer than Bite me Mommy.
(Notice I said Bite me Mommy as many times as possible during this blog lol)
Nellie has come to take this game very seriously. Me or one of the kids will be sitting around minding our own business and wham Nellie comes out of nowhere and yells I'm gonna bite you and before there is a moment to react she latches on with those huge chompers!!! These attacks are responded with a huge yell from the victim. Problem is Nellie doesn't understand when someone is hurt so she thinks these yells of pain are the greatest thing ever. She laughs hysterically and proceeds to yell Bite me Mommy!
Needless to say I have tried repeatedly to end this game of Bite me Mommy to no avail. Just when I think she has lost interest in it I get a big bruise on the thigh!
There is hope she has taken to now poking people very hard and yelling Tag you're it! Other than a few pokes in the eyes, scratches, and in a bit of over excitement she's knocked a few people down, but all in all much safer than Bite me Mommy.
(Notice I said Bite me Mommy as many times as possible during this blog lol)
Friday, July 23, 2010
Ride the bullet Nellie!!
Have you ever seen the Steven King movie Ride The Bullet? Basically it about a person having to make a choice between living and dying. Nellie was the person who fought to live. More than 50% of miscarriages occur because of chromosome abnormalities more than 50%!!!!!!!!! 5% of miscarriages are caused by single umbilical artery. Nellie had both of these things. She had more than a 55% higher risk of miscarriage. She had a greater chance of being a boy than survival. All I can think of is when the weather man says there is a 50% chance of rain. I compare it this way. If a drop of rain had fallen Nellie would have died, thank God the sun kept on shining!
Nellie fought to live, just as she fights to learn, to do the things they said she couldn't. She thrives, grows (A lot), learns. Everyday she shocks me with the knowledge she has gained. When she was almost three they did an IQ test that said hers was only 70! Boy, she proved them wrong.
I'm so proud of every accomplishment and every milestone. I wish sometimes I rode the bullet like she has. So many times things in life have looked so bleak. I've heard stories of people trying to end it or succeeding in their attempts and I think man, if only they knew Nellie. How could someone want to die when someone so little fought so hard to live? I'm reminded of a woman I met when I was pregnant with Devony and I won't name her but just say her baby was in my expecting club. This little baby was born so sick she spent months in the hospital. She could have died so many times. In fact there was a good chance she would die. That baby too rode the bullet. Everyday there are babies riding the bullet. They do the one thing so many are afraid to do...they live!!!!!
I suppose it sounds weird to compare babies to a Steven King movie, but in this case I must. If you haven't seen the movie watch it and you'll understand. I'm happy to say now I gladly throw my fears to the side and I too am riding the bullet and doing so with my arms up in the air, screaming with joy!
I know you love me, Nellie
I know you love me, Nellie. Though you may not want to hug and kiss. I see the love in your eyes when you look at me in the morning. When your tired at night and laying beside me the love emanates off of you and flows into me. Yes, I understand when you say love you too it is just an automatic response, but it's not the words that tell me how you feel. It's the way your face brightens when you get off the bus. It's when I am sad and you pat my leg though I know you don't like to touch. It's the way you surprise me some days and climb up in my lap. I know you love me, Nellie. I know this because you will put your arms around me for a few seconds when I say give me a hug, even if you face twists up in a look of disgust. Mommy knows hugs don't feel good for you. You don't have to tell me you love me Nellie. I can see it everyday. I don't care what I've read or what people say I know you and it's because of that I know their wrong. You feel love, and sadness, and anger, and yes even disappointment. Maybe you don't express them the same, but mommy always knows. I know when your sad cause your lips pokes out and you look down at the ground. I know when your angery cause your eyes get all squinty like your fathers. I know when your disappointed because you mope around. Yes, Nellie mommy don't need the words. In the end words are just that...words. They are not the smiles, the moments when you surprise me. They are not the feelings you invoke in others just by being near them. Words can't replace that instinct in you that tells when someone needs to laugh. Oh and how you make me laugh. I know you love me Nellie and I will always love you too, even if you don't understand when I say it you feel it the same way I do!
Ask and you shall recieve and have a little tact
I've had people writing to me asking exactly what is wrong with Janelle. She is what is known as multi disabled. The list is long and some of the conditions are not known by many people so I will try to make the list as simple as possible. Trust me I had a lot to learn with some of these terms too. I will list the symptoms of each condition as well in case anyone'schild has something similar.
Her first dx at 3 months was Nystagmus since then she's had three other eye conditions added.
Nystagmus is characterized by involuntary, repeated oscillations of one or both eyes, and the disorder often affects the nerves behind the eye and not the eye itself. Movements may be horizontal, vertical, circular, or a combination of various motions and speeds. Nystagmus affects people in varying ways and degrees. Although most affected people view objects as stationary because the brain is thought to make the necessary adjustments, many often have reduced acuity because of the challenge to maintain a fixed focus. People with nystagmus tend to see objects in lower contrast, and many experience problems with depth perception that affect balance and coordination. Some of those affected with the disorder tilt their heads or display nodding to compensate for the impairment or symptoms.
You may notice in older pics of Janelle she held her head to the left side.
http://www.visionrx.com/library/enc/enc_nystagmus.asp
Diagnoses number two was delays in all areas. She began receiving speech, OT, and vision at home.
In Janelle' case her OT was because she didn't hit any of her milestones for about 6 months after she should. When she started ot she was pretty much on a newborn level for many skills. Speech delays were noticed because he didn't cry, smile, wave, babble etc and vision was for her visual impairments.
Third was a feeding delay and severe eczema, and SPD
She didn't eat solid food until she was almost 2!!!! We had a special way of putting the spoon in her mouth to get her to take some baby food. She cried whenever she was forced to touch anything gooey like shaving cream, glue, loved light, resisted touch etc etc. She also had eczema so bad her skin would bleed.
fourth tight right foot adductor muscle
She stands on the side of her foot. It was at this point she was also dx'ed with bow legs which turned out to be knock knees.
fifth severe asthma
She's had 3 major attacks in the last year and a half she had her adenoids out in the spring but it didn't help.
sixth more delays and hearing loss this is when she got a private aide
She now receives PT as well because she doesn't jump off things, has trouble on stairs . The aide helps her to not make good her escape and to give her one on one for teacher led activities.
seventh PDD-NOS (Likely to be changed)
This is a new DX and she may be moved into a different autism spectrum category
And now Chromosome abnormalities. Which in the end caused everything.
The chromosome abnormalities doesn't have a name. Her genetic doc put it this way she has extra on chromosome 15 and missing part of chromosome 19. He said it is rare to have both of these at the same time. Not unheard of just rare.
I'm sure there have been other things I have missed because there have been things they said she had that turned out not to be the case. This list may seem long and people may say how did you deal with so much. To that I say it has been a slow process. These things were not diagnosed all at once. Itwas one thing after another over almost four years. At one point I asked is she ever going to get a negative test?
I also want to add that people have been cautious about asking me questions about Janelle. If we are in public you can tell someone wants to ask something, but they don't. I have also had friends apologize for asking me about her conditions. Please don't feel like you can't ask or that it's rude. I want people to ask. I want people to understand what is wrong with her and not fear it. Trust me after people spend a little while with Nellie they forget all about the fact she is disabled. What I do find offensive is when people make comments. The worst was when she was a baby and people would look at her and say oh my what's wrong with her eyes with that shocked disgusted sound in their voice. Please have a little tact. Ask instead I notice her eyes shake what causes that? In other words think before you word your sentences. If my younger children can do this so can adults. For example we saw a young girl who had a bone condition on our last trip to the hospital and my six year old did notice this girl immediately. Her response was mommy was that little girl born that way? I say yes I believe she was. Emma says mommy that chair looks like a lot of fun do you think she races in it? I said I don't know go ahead and ask her. Being shy Emma didn't.Never once did they make the little girl feel like a side show.
There are proper ways to approach the parent of a disabled child. If you're not sure the right way imagine that child was yours and think of how you would want someone to ask. I guess in a way it's easier for me having been in those shoes.
I'll finish this blog today with one simple request. Teach your children from a young age about disabilities. Try to put them in situations where they will be exposed to people who have disabilities. Young children may embarrass you at first and ask some outlandish questions or even show their shock. After talking to other disabled adults I have learned when children do these things it's not hurtful to them. In fact many will talk to the children and explain things in a way they'll understand. It's by teaching your children that they learn understanding and acceptance!
Her first dx at 3 months was Nystagmus since then she's had three other eye conditions added.
Nystagmus is characterized by involuntary, repeated oscillations of one or both eyes, and the disorder often affects the nerves behind the eye and not the eye itself. Movements may be horizontal, vertical, circular, or a combination of various motions and speeds. Nystagmus affects people in varying ways and degrees. Although most affected people view objects as stationary because the brain is thought to make the necessary adjustments, many often have reduced acuity because of the challenge to maintain a fixed focus. People with nystagmus tend to see objects in lower contrast, and many experience problems with depth perception that affect balance and coordination. Some of those affected with the disorder tilt their heads or display nodding to compensate for the impairment or symptoms.
You may notice in older pics of Janelle she held her head to the left side.
http://www.visionrx.com/library/enc/enc_nystagmus.asp
Diagnoses number two was delays in all areas. She began receiving speech, OT, and vision at home.
In Janelle' case her OT was because she didn't hit any of her milestones for about 6 months after she should. When she started ot she was pretty much on a newborn level for many skills. Speech delays were noticed because he didn't cry, smile, wave, babble etc and vision was for her visual impairments.
Third was a feeding delay and severe eczema, and SPD
She didn't eat solid food until she was almost 2!!!! We had a special way of putting the spoon in her mouth to get her to take some baby food. She cried whenever she was forced to touch anything gooey like shaving cream, glue, loved light, resisted touch etc etc. She also had eczema so bad her skin would bleed.
fourth tight right foot adductor muscle
She stands on the side of her foot. It was at this point she was also dx'ed with bow legs which turned out to be knock knees.
fifth severe asthma
She's had 3 major attacks in the last year and a half she had her adenoids out in the spring but it didn't help.
sixth more delays and hearing loss this is when she got a private aide
She now receives PT as well because she doesn't jump off things, has trouble on stairs . The aide helps her to not make good her escape and to give her one on one for teacher led activities.
seventh PDD-NOS (Likely to be changed)
This is a new DX and she may be moved into a different autism spectrum category
And now Chromosome abnormalities. Which in the end caused everything.
The chromosome abnormalities doesn't have a name. Her genetic doc put it this way she has extra on chromosome 15 and missing part of chromosome 19. He said it is rare to have both of these at the same time. Not unheard of just rare.
I'm sure there have been other things I have missed because there have been things they said she had that turned out not to be the case. This list may seem long and people may say how did you deal with so much. To that I say it has been a slow process. These things were not diagnosed all at once. Itwas one thing after another over almost four years. At one point I asked is she ever going to get a negative test?
I also want to add that people have been cautious about asking me questions about Janelle. If we are in public you can tell someone wants to ask something, but they don't. I have also had friends apologize for asking me about her conditions. Please don't feel like you can't ask or that it's rude. I want people to ask. I want people to understand what is wrong with her and not fear it. Trust me after people spend a little while with Nellie they forget all about the fact she is disabled. What I do find offensive is when people make comments. The worst was when she was a baby and people would look at her and say oh my what's wrong with her eyes with that shocked disgusted sound in their voice. Please have a little tact. Ask instead I notice her eyes shake what causes that? In other words think before you word your sentences. If my younger children can do this so can adults. For example we saw a young girl who had a bone condition on our last trip to the hospital and my six year old did notice this girl immediately. Her response was mommy was that little girl born that way? I say yes I believe she was. Emma says mommy that chair looks like a lot of fun do you think she races in it? I said I don't know go ahead and ask her. Being shy Emma didn't.Never once did they make the little girl feel like a side show.
There are proper ways to approach the parent of a disabled child. If you're not sure the right way imagine that child was yours and think of how you would want someone to ask. I guess in a way it's easier for me having been in those shoes.
I'll finish this blog today with one simple request. Teach your children from a young age about disabilities. Try to put them in situations where they will be exposed to people who have disabilities. Young children may embarrass you at first and ask some outlandish questions or even show their shock. After talking to other disabled adults I have learned when children do these things it's not hurtful to them. In fact many will talk to the children and explain things in a way they'll understand. It's by teaching your children that they learn understanding and acceptance!
Thursday, July 22, 2010
An open letter to Nickelodeon and Disney
To whom it may concern:
Thank you so much for your programming (Even if I swear it has subliminal messages to children). It is because of you I get my little bit of sanity during the day, but also because of you I am driven insane on a daily bases with your montages of songs which are sang out of tune by five children daily.
Yes Phinias and Ferb have become a staple in our home, almost at one time overtaking Sponge bob. I have to wonder who would win in a cage match Gary or Perry. Gary is slow, but then again he is the quiet type and everyone knows you have to watch the quit ones. I also am curious how exactly a pineapple ended up under the sea and why a sponge would want to live in one. Oh the things that boggle a parents mind.
Back to the point of this letter. It is during your programming when I can sit back and not wonder what Nellie is going to dump on my floor. I do have one request please do away with commercials. It is during the ads Nellie turns wearing her wide smile and I have to watch carefully to see what her mind is thinking of. Usually this is the point I have to duck to avoid a flying toy, or grab a bottle of Pepsi just before it becomes a puddle in the middle of my living room rug. Yes, even bathroom breaks are avoided at all costs during your shows, which can at times lead to another mess for me to clean.
Mine is a simple request please get rid of the ads or simply have all ads starring your addictive characters. Perhaps at the very least you can add a subliminal message that says use the bathroom, toys aren't for throwing, please don't ruin the rug. With that stated I plan to send you a six hour video of my children singing all your catchy tunes, ENJOY!!!!
Sincerely,
A very very tired Mama
Thank you so much for your programming (Even if I swear it has subliminal messages to children). It is because of you I get my little bit of sanity during the day, but also because of you I am driven insane on a daily bases with your montages of songs which are sang out of tune by five children daily.
Yes Phinias and Ferb have become a staple in our home, almost at one time overtaking Sponge bob. I have to wonder who would win in a cage match Gary or Perry. Gary is slow, but then again he is the quiet type and everyone knows you have to watch the quit ones. I also am curious how exactly a pineapple ended up under the sea and why a sponge would want to live in one. Oh the things that boggle a parents mind.
Back to the point of this letter. It is during your programming when I can sit back and not wonder what Nellie is going to dump on my floor. I do have one request please do away with commercials. It is during the ads Nellie turns wearing her wide smile and I have to watch carefully to see what her mind is thinking of. Usually this is the point I have to duck to avoid a flying toy, or grab a bottle of Pepsi just before it becomes a puddle in the middle of my living room rug. Yes, even bathroom breaks are avoided at all costs during your shows, which can at times lead to another mess for me to clean.
Mine is a simple request please get rid of the ads or simply have all ads starring your addictive characters. Perhaps at the very least you can add a subliminal message that says use the bathroom, toys aren't for throwing, please don't ruin the rug. With that stated I plan to send you a six hour video of my children singing all your catchy tunes, ENJOY!!!!
Sincerely,
A very very tired Mama
Wednesday, July 21, 2010
Janelle's- Amazing
The morning cold and raining,
dark before the dawn could come
How long in twilight waiting
longing for the rising sun
ohoh ohoh Oh ooh
You came like crashing thunder
breaking through these walls of stone
You came with wide eyed wonder
into all this great unknown
ohoh ohoh Ohoooh Oohh
Hush now don't you be afraid
I promise you I'll always stay
I'll never be that far away
I'm right here with you
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are
You came from heaven shining
Breath of God still flows from fresh on you
The beating heart inside me
Crumbled at this one so new
ohoh ohoh Oooh ooohhh
No matter where or how far you wander
For a thousand years or longer
I will always be there for you
Right here with you
[Chorus]
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
I hope your tears are few and fast
I hope your dreams come true at last
I hope you find love that goes on and on and on and on and on
I hope you wish on every star
I hope you never fall too far
I hope this world can see how wonderful you are
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing...
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are
ooooooo
WOW!!!!!!! What a fitting song for my Nellie. More so since she shares the singers name!
I can lift the world
I know I can lift the world, I've done it. The weight has laid on my shoulders so many times I'm surprised it didn't leave permanent dents. No I'm not strong to have held this weight, nor brave. I am just a mother. I have felt the bitter tears of fear as I thought about Nellie's future. I've mourned many times for what she could have been, but then I think my God, she is already so wonderful. Last night while talking to a friend I said if they said tomorrow they had a cure right away I'd say great let's do this thing, but then I'd stop and say will this cure change her personality, who she is? If the answer would be yes I wouldn't be so quick to get in line.
I have a lot of fears for Nellie's future so bravery is not quite the word I would use for myself. I fear how the world is going to view her. I fear what will become of her when I am gone. I would never rest in peace until I knew she was safe and happy, just as I wouldn't unless I was sure of the same thing with my other children. No, I'm not brave. I'm still a scared little girl deep down who many times has ran into my grandma's arms for comfort when the doctors said something that really struck a cord with me. I'm the same little girl who wants to hide from it all every now and then, but I can't. I know I have to fight for her. If I don't she'd become lost in the system. I refuse to allow her to become anything less than what she can be.
Strength is another quality people have said I have. I wouldn't call it that. I just do what I have to, what any other parent would have. When the doctors told me answers may never come I wouldn't accept it. I dealt with family and friends saying I was looking for something wrong knowing that in fact wasn't the case. There had always been something wrong I simply wouldn't give up the hunt. Throughout history if people had given up the hunt there wouldn't be antibiotics, electricity, America. Just as these things that were hunted for are great so Nellie will be too.
I'm under no delusion that Nellie will be a rocket scientist, she won't be. In fact what her future holds is so uncertain sometimes I hate to think about it. I do know however she will become something great. She will be a great, loving person. She will bring great joy to those around her and to be honest that fills me with more pride than if she were to be elected President. Whatever Nellie becomes in life it won't be because of my strength or my bravery it will be because of my love and her strength and her bravery.
This child has been through so much. She's been poked and prodded for nearly four years now. She sees doctor after doctor and never cries. She sees children do things she can't, yet never complains. In my opinion she is stronger than any vice ever created and braver than an explorer that ever tackled the unknown. She's my Nell Bells and I will forever be in awe of her.
I have a lot of fears for Nellie's future so bravery is not quite the word I would use for myself. I fear how the world is going to view her. I fear what will become of her when I am gone. I would never rest in peace until I knew she was safe and happy, just as I wouldn't unless I was sure of the same thing with my other children. No, I'm not brave. I'm still a scared little girl deep down who many times has ran into my grandma's arms for comfort when the doctors said something that really struck a cord with me. I'm the same little girl who wants to hide from it all every now and then, but I can't. I know I have to fight for her. If I don't she'd become lost in the system. I refuse to allow her to become anything less than what she can be.
Strength is another quality people have said I have. I wouldn't call it that. I just do what I have to, what any other parent would have. When the doctors told me answers may never come I wouldn't accept it. I dealt with family and friends saying I was looking for something wrong knowing that in fact wasn't the case. There had always been something wrong I simply wouldn't give up the hunt. Throughout history if people had given up the hunt there wouldn't be antibiotics, electricity, America. Just as these things that were hunted for are great so Nellie will be too.
I'm under no delusion that Nellie will be a rocket scientist, she won't be. In fact what her future holds is so uncertain sometimes I hate to think about it. I do know however she will become something great. She will be a great, loving person. She will bring great joy to those around her and to be honest that fills me with more pride than if she were to be elected President. Whatever Nellie becomes in life it won't be because of my strength or my bravery it will be because of my love and her strength and her bravery.
This child has been through so much. She's been poked and prodded for nearly four years now. She sees doctor after doctor and never cries. She sees children do things she can't, yet never complains. In my opinion she is stronger than any vice ever created and braver than an explorer that ever tackled the unknown. She's my Nell Bells and I will forever be in awe of her.
Tuesday, July 20, 2010
A detour in the road
There was a detour in the road of Nellie's journey. I guess in a way that is why it's been so long since I posted. We have gone through a battery of tests from Genetic doctors to developmental pediatricians. I guess since she was born I have been searching diligently for answers. I have crossed every bridge and walked barefoot down every rocky road of the medical society I could. I needed to know, being a person who hates a mystery. I was the kid who pulled back the corners of Christmas gifts on Christmas Eve just to see what was inside. So in a way Nellie was my Christmas gift. The best Christmas gift ever, yet I needed to know what was inside. I had to find out what was hidden below the surface. Today I found out.
She has something wrong with her DNA (Could be chromosomes after the doctor started talking his voice droned out into an annoying buzz). Anyway he has her listed as Clinically uncertain and can't find much literature on what is wrong with her so we will wait and see I guess.
I cried again. I cry a lot these days when it comes to Nellie. I mourn what could have been. I ask what I could have done. In the end I know Nellie is who she is because God made her that way. I was IM'ing with a friend a little while ago and I hope she doesn't mind I share our conversation as it says it all about how I feel about Nellie.
12:13pmMe
the one thing we know at this point is everything wrong with her now has one answer
autism visiual impairment hearing loss everything
12:13pmCandi
would you mind if i have your family added to a prayer chain?
12:14pmMe
and the list is long
12:15pmCandi
omg it's been a hard week for people conected to me :(
12:15pmMe
This isn't so hard just hard to hear if anything I should be praising God for the answers I begged him for
you know someone once asked me how I could believe in a God who would make children like Nellie
12:16pmCandi
really?
12:16pmMe
and I say how could I not believe in a God that would make such a loving, sweet little girl
A God that chose me because he knew I would do for her everything I could and love her harder than I have ever loved anything
12:18pmCandi
omg you've got me crying...i don't even know nellie but when you look at her you see a beautiful, sweet, kind-hearted little angel...she was put here for a reason
12:18pmMe
I favor Nellie, it's not just me everyone in this house favors her everyone who meets her favors her
her teacher even said nellie was her favorite
that little girl is destined for great things she's got this magnetism about her that makes everyone want to love her
12:19pmCandi
i wish i could meet her...and you and the others too
12:19pmMe
she doesn't hug or kiss but she just smiles and it's like omg that smile is for me
thanks Candi
we'd love to meet you too
one day I'm sure
12:20pmCandi
i'm trying to read about chromosonal anomolies (sp?)...i think nellie is a miracle
12:21pmMe
it's not so much the chromosome it's the dna in them or something I have no idea how to explain it after not getting better he just sounded like an annoying buzz lol
12:22pmCandi
i've read that 139 in 140 fetus' with a missing chromoson spontaneously abort....nellie is meant to be here
12:23pmMe
she has a single umblical vessel too which has a greater risk of miscarriage
she only weighed 5'15 full term
12:24pmCandi
nellie IS favored...God CHOSE her to survive!
12:25pmMe
you know I will say one thing for my grandpa that he did in the very end he brought me back to God and he was the one who always said Nellie is just fine and I'd say grandpa the doctors said this or that and he'd look me straight in the eyes and say Nellie is just fine
and I know for the rest of her life he will be on her shoulder just as he was always with her when he was alive
12:26pmCandi
and she is...she's exactly the way God intended her to be
12:27pmMe
she has an abundance of prayers said for her all the time and she loves church even if she doesn't fully understand it she is a friend of God
12:28pmCandi
that's so great to hear
12:30pmMe
lol I was trying to explain chromosome to the kids and emma says I think I only have two of those so nellies ok lol
emma explains it all
12:35pmCandi
awww, cutie emma
12:57pmMe
ok her regular doc just called they have her listed as clinically uncertain because whatever all this is is very rare and the genetic doctor wrote there isn't much literature
1:28pmMe
hehehehehe wanna hear the course of treatment?
1:28pmCandi
sure, lol
1:29pmMe
what she's getting already
lol the doc just don't know lol
she's making his butt work
1:37pmCandi
i asked my friend nicole to pray and explained the rarity of it to her...she says that nellie was put on earth to teach people about this syndrome
1:41pmMe
In a way I think Nellie was put her to make us all see that no matter what we need to forget about the bad things in life and just smile :)
1:42pmCandi
yup :D
So to finish todays blog I just want to say smile for Nellie. I figure if she can smile through everything she's been through what right do we have to frown?
She has something wrong with her DNA (Could be chromosomes after the doctor started talking his voice droned out into an annoying buzz). Anyway he has her listed as Clinically uncertain and can't find much literature on what is wrong with her so we will wait and see I guess.
I cried again. I cry a lot these days when it comes to Nellie. I mourn what could have been. I ask what I could have done. In the end I know Nellie is who she is because God made her that way. I was IM'ing with a friend a little while ago and I hope she doesn't mind I share our conversation as it says it all about how I feel about Nellie.
12:13pmMe
the one thing we know at this point is everything wrong with her now has one answer
autism visiual impairment hearing loss everything
12:13pmCandi
would you mind if i have your family added to a prayer chain?
12:14pmMe
and the list is long
12:15pmCandi
omg it's been a hard week for people conected to me :(
12:15pmMe
This isn't so hard just hard to hear if anything I should be praising God for the answers I begged him for
you know someone once asked me how I could believe in a God who would make children like Nellie
12:16pmCandi
really?
12:16pmMe
and I say how could I not believe in a God that would make such a loving, sweet little girl
A God that chose me because he knew I would do for her everything I could and love her harder than I have ever loved anything
12:18pmCandi
omg you've got me crying...i don't even know nellie but when you look at her you see a beautiful, sweet, kind-hearted little angel...she was put here for a reason
12:18pmMe
I favor Nellie, it's not just me everyone in this house favors her everyone who meets her favors her
her teacher even said nellie was her favorite
that little girl is destined for great things she's got this magnetism about her that makes everyone want to love her
12:19pmCandi
i wish i could meet her...and you and the others too
12:19pmMe
she doesn't hug or kiss but she just smiles and it's like omg that smile is for me
thanks Candi
we'd love to meet you too
one day I'm sure
12:20pmCandi
i'm trying to read about chromosonal anomolies (sp?)...i think nellie is a miracle
12:21pmMe
it's not so much the chromosome it's the dna in them or something I have no idea how to explain it after not getting better he just sounded like an annoying buzz lol
12:22pmCandi
i've read that 139 in 140 fetus' with a missing chromoson spontaneously abort....nellie is meant to be here
12:23pmMe
she has a single umblical vessel too which has a greater risk of miscarriage
she only weighed 5'15 full term
12:24pmCandi
nellie IS favored...God CHOSE her to survive!
12:25pmMe
you know I will say one thing for my grandpa that he did in the very end he brought me back to God and he was the one who always said Nellie is just fine and I'd say grandpa the doctors said this or that and he'd look me straight in the eyes and say Nellie is just fine
and I know for the rest of her life he will be on her shoulder just as he was always with her when he was alive
12:26pmCandi
and she is...she's exactly the way God intended her to be
12:27pmMe
she has an abundance of prayers said for her all the time and she loves church even if she doesn't fully understand it she is a friend of God
12:28pmCandi
that's so great to hear
12:30pmMe
lol I was trying to explain chromosome to the kids and emma says I think I only have two of those so nellies ok lol
emma explains it all
12:35pmCandi
awww, cutie emma
12:57pmMe
ok her regular doc just called they have her listed as clinically uncertain because whatever all this is is very rare and the genetic doctor wrote there isn't much literature
1:28pmMe
hehehehehe wanna hear the course of treatment?
1:28pmCandi
sure, lol
1:29pmMe
what she's getting already
lol the doc just don't know lol
she's making his butt work
1:37pmCandi
i asked my friend nicole to pray and explained the rarity of it to her...she says that nellie was put on earth to teach people about this syndrome
1:41pmMe
In a way I think Nellie was put her to make us all see that no matter what we need to forget about the bad things in life and just smile :)
1:42pmCandi
yup :D
So to finish todays blog I just want to say smile for Nellie. I figure if she can smile through everything she's been through what right do we have to frown?
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