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!!!!!

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.

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!

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!

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 :)

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???????

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.