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.

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?

Oh how busy she keeps me

So I haven't posted in a while and Nellie's been keeping me on my toes. She finally got in for a full evaluation and we got some surprising results and testing coming up. All in all they like everyone else have no idea what's going on with her. They said possibly autism, but not classic autism. We have to go to an orthopedic doctor for her bow leg and foot, genetic testing, two more autism screenings, and a test to see if she has seizure disorder. The test may seem scary to some people, but for us it is a relief. Maybe finally we will get some answers. Keep your fingers crossed for Nellie that soon we will know one way or another and I promise to keep this updated more regularly.

The scare of my life

So Nellie decided to scare the crap out of me. On Monday she had a runny nose. On Tuesday she had a runny nose and a cough. Tuesday night she went to bed and kept us up all night. She kept crying I hurt, I hurt, but of course couldn't tell me what hurt. I brought her in bed with us and nuzzled all night, thinking she was getting an ear infection...it wasn't.
The next morning I woke up and Nellie came out on the couch. I was getting all the kids ready for school and when they were off turned my attention back to Nellie. I sat down beside her and noticed she was a bit lethargic. She was breathing pretty fast and hard, making this giggly sound she does when she is having an asthma attack. I picked her up and took her into the bathroom where I turned on the hot shower and sat with her.
Within minutes she was gasping. The giggly sound was gone, replaced with her trying hard to breath. I called my husband and said if you don't get home now I am calling an ambulance. He was home within minutes and we were on our way to the doctors.
Nellie's oxygen was at 94 and dropping when we got there. The doctor hurried in and got her on the nebulizer. After two doses she finally came out of it and went to sleep. When the doc hear her snoring he told me she has sleep apnea (A blog for another day) and he's going to send her to yet another specialist. However that was not was was wrong with her this time. She had pneumonia!! So we now have her on tons of scripts and nebulizing every four hours.
Nellie is getting better now and for that I send praise to God. I never want to see one of my children struggling to breath again. It was the scariest moment of my life!

Nellie the wrecking ball

Yes Nellie is a wrecking ball. She can destroy a room in seconds flat. The problem is she is not made of metal and often hurts herself as well. You see Nellie is very bull legged and also has a tight foot muscle which makes her foot turn in pretty badly. She also has little to no depth perception so she is clumsy. In less than two weeks this girl has gone down the basement stairs on her belly. hit her head numerous times and now fell off the couch onto the end table.
Another issue we have with Nellie is her under sensitivity to pain. I guess in a way that's a good thing for her, but not so much for us. It's very hard to tell how bad she is hurt. Ok, I take that back because when she fell off the couch she screamed!!!!! The thing is unless she is really, really hurt she does not cry.
It's scary sometimes because most kids learn from getting hurt. They jump off something, hurt themselves and their brain says hummm I better not do that again, but not Nellie. She'll do it over and over and one day I fear this will cause a broken bone or more stitches (She had her first set of stitches over the summer after an attack by a dog food can).
To all the mothers who have children who have under sensitivity to pain, I feel you. Most people think it's a good thing, yet we know it's not.

The appointment I fear the most

So Nellie is going to go to a developmental ped in the next few weeks. It's the one appointment I've been dreading. I was hoping she'd just get better. That there was nothing really wrong and she would just catch up. That hasn't happened.
She has begun to talk a little more and I can even understand her at times. She still doesn't ask for things, but we had a huge breakthrough yesterday. We asked her if she wanted to go outside and she said yes! I know it sounds silly to be so excited about something so simple, but she's never said yes in response to a question before. I'm hoping this is a sign of more to come.
Recently we found out what her special skill is...songs. She can hear a song once and know it word for word. Of course now she walks around singing all the time. I have never heard so many Beatles songs from a three year old.