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!
Tuesday, July 27, 2010
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)
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