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 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

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)

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!

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