Where we stand

I've been so busy lately it's been hard to find time to post. There have been doctor appointments, more tests to set up, and overall chaos. Janelle's speech is improving at rapid rates and as it does her personality is shining through more and more. God is good and has again answered my prayers. I asked to hear her voice and boy has He provided that! With finding her voice Janelle has also found that she can express her dislikes, her anger, and happiness through words. So we are now going through what most people call the terrible twos, but with a nearly 4 year old. My days consist of saying no Nellie, don't put that in your mouth, ewwwww that's gross, Nellie please put your clothes back on, Janelle don't dump that on the floor, you get the picture.
We have also been shocked to hear her tattling. Oh, I thought I would have one daughter who didn't say mooooooooooom, so and so did this, but alas it has happened. Janelle will be yelling mooooooommmmm, Emma took mine. (This means Emma took something from her). Last night she kept saying Nellie no timeout, no sit in chair. I have to assume she was put in time out at school as she wasn't put in time out here. She can spell her name out loud now too, which is amazing to me since my other children were much older when they did this.
Yes, things have been hectic, crazy, and at times very stressful, yet I hear that voice even when she's tattling and the pride wells up in me. She might as well be reciting Emily Dickenson or Charles Dicken's because to me the words coming from her are sweeter than any poem, what she says is more brilliant than the greatest novel ever written. Even if she is only telling me NO!

Just one day

Last night I was talking with a friend I haven't talked to in a while. Life has been getting in the way of phone conversations. I finally let go of everything that has been eating away at me. I am not a brick wall and I am toppling. After 4 years of struggling alone with Nellie's issues, of not allowing anyone to take over any of her care I admitted I need help. For a few minutes I felt like I was failing her. Like I wasn't what I needed to be. I can't go anywhere since no one will babysit Nellie, my life revolves around doctor appointments and I need to get away, just for a little while. I have always felt like if I allowed anyone, even Nellie's father to take over any of her medical stuff they'd mess something up, but it's time.
I had a talk with my mother and she is going to watch Nellie once a month so I can get away. This is going to be a great reprieve for me and I am excited!!! I don't think a lot of people realize what the day to day life is like for a family with a special needs child. It is hectic, busy, crazy, and so wonderful all at the same time. There are more sleepless nights and trips to the ER than most people face in a lifetime. It is our normal. It's our life and perhaps I wouldn't have chosen this life, but I wouldn't change it. I couldn't imagine my world without my Nellie in it.
You may ask what I'm going to do when Nellie goes to stay with my mom for a few hours and the answer is simple. I'm going to take the kids and do something that is hard to do with Nellie. We are going to go to a real restaurant. One with menu's and waiters! One dinner where the kids can sit and talk to us without us having to chase Nellie around the place and try to keep her from yelling. Then when we are done I'm sure I'll be at my mom's to pick her up early because I miss her ;)

I swear I'm not starving you

Regardless of what Janelle believes i am in fact not starving her. Apparently if not given cookies, candy, froasty freezy freezes, she is starving. For the past week I have been on guard at the kitchen door. She has tried to climb under my legs, push me to the side, and if I go to the bathroom she makes a mad dash for the fridge. We were hoping to avoid putting locks on the fridge and cupboards, but alas we have to.
On the plus side since we rid our house of as much high fructose corn syrup as possible Leanna's ADHD is barely noticable!!!! I had to praise her up and down yesterday and tell her how proud I am. May be soon we will be able to say goodbye to Adderall forever!!!!!!
In conclusion if a short girl, with shoulder length, thin brown hair comes knocking at your door saying cookie, don't give it to her! If a short, skinny, dark haired comes knocking feel free to feed her :)

poopy poopy everywhere

nothing like an end of summer stomach bug o put everyone in a grumpy mood. I feel awful, yet have had to clean up after Nellie and Devony for two days now ewwwww. Since Nellie is basically refusing to use the potty this is even nastier. This whole situation has made my head go into the toilet bowel many times now, gotta love the pregnancy sensitive nose.
I'm so ready for this bug to be gone. I'd say I'm so ready for school to start, but that just brings on another vicious cycle of viruses and germs. Sometimes I feel like I am fighting a never ending battle. Like the germs hide in a corner, wait for me to give the all clear, that our house is illness free, and they form their attack plan. Yes, I see them there snickering at me when I feel like it's okay to relax.
Alright, I better end this blog and arm myself with the can of Lysol spray and paper towels. Everyone wish me luck, if you haven't heard from me in a few weeks the germs won!

Nellie VS the fair.....Nellie won!!!!!!

Yes, I think we very well may have hit the terrible two's, two years late! We decided to take all of the kids to the fair yesterday. People would think it difficult to take 6 kids anywhere, but our kids behave fairly well in public. Anyway Janelle usually enjoys such things, not yesterday!
I'm not sure if it was a case of sensory overload, crankiness or what, but Nell's did not enjoy the fair. Okay, she liked it as long as she was getting her own way. All she wanted to do was ride rides and she had an hour fit about ponies until we finally found them. She had no interest in the animal shows, or just about anything else. Should have seen what happened when she wasn't able to ride a slide cause she was too short. Oh my goodness Nellie went hysterical!

We ended up leaving early, but had been there 6 hours so we were all tired anyway. In the end though, it was worth it just to see her smile the few times she did. 

No parent is alone!!!!

Since I started this blog and have gone down the path of a mother with a disabled child I realized how many parents there are who live like I do. Their lives revolve around fighting for their children, learning, and struggling daily to keep these kids safe, and cared for. Each child is different, each family, and case is different, yet we are one. We are one community of parents who know pain, struggles, disappointment, fear, and wonder. We have felt the devastation of hearing our children are not "normal". I use quotes because one person idea of normal isn't another persons.
Though one mother may struggle with a child who needs feeding tubes another may have to deal with immobility. Does this make the daily struggles different, maybe a little, but in the end these mothers understand each other.
I have dubbed mothers of disabled children multi-abled parents. We have a different language than most other parents. We can talk in numbers, codes, and medical terms. We have a vast knowledge of medicines, surgeries, the best and worst hospitals and doctors. We have a different schedule than most other people. We run on doctor time. This means we are on call 24/7 and can drop anything at any sign of an emergency and stay cool while dealing with it. We are fighters for justice more than any senator or even president. We are willing and able to take on anyone to make sure our children get what they need and their rights are not violated.
In the end what do we get for this life? There is no day set aside for multi-abled mom's. We don't have an awards ceremony, or movies or books made about us. No, what we get is greater than all of these things. We get the love of our children, the joy of knowing we make a difference and most of all we get to belong to a great community of other multi-abled parents who we can share our joy, love, and accomplishments with.
I have enjoyed meeting all of my multi-abled parent superhero friends. You are all a part of me now as are your children. Know that as you would band together for me I will always do the same in return. You all rock!!

The last week of school

The last week of Nellie's summer session is upon us. She loves school so much and her teacher as well. I'm sure until the fall session starts she's going to be walking around asking why the bus isn't here (I think she has an internal clock that tells her when it's supposed to be here). Thankfully we have a lot planned between then and now and she'll be entertained fully. Still I know each time we pass a bus she'll wonder why she isn't getting on it!