And they say .....

What doesn't kill you makes you stronger right ? Sometimes I wish it would just kill me. If this was so.. I should be the strongest person on the planet. I should be so trim and fit and no feelings whatsoever, but I do. By all means my life is not the worst my children are healthy they have there issues and this is sorta hard because I have made it that way at times by my own decisions, other things are not my fault they just seem to keep flying at me like I'm in a batting cage trying to dodge balls, but I keep getting smacked one after another to the point I don't know If i can keep getting up. 


So where did that saying come from anyways? Some person who has it all ?

Would money make my life easier - maybe a little would it make all my problems go away absolutely not. 


Would having the perfect mate make my life easier - maybe it would make my stress level a little bit more manageable if I felt like someone was there to back me up and catch me when I fall but not everyone is perfect. 


Would having a huge family that understands whats going on in my life and that didn't seemed so consumed with their own lives help. I think so..... I feel all alone and I feel like I'm failing my daughter once again and that my family is failing me.


Thank you Insurance company for denying my daughter a feeding chair..


Thank you Secondary insurance for denying my daughter a feeding chair. 


Thanks to a program I applied to for kids with autism and special needs for denying my daughter an iPad when she clearly had enough votes but it went to a FRIEND of the owners site. * But thank you for giving away iPad  to kids that need them * 


Thank you State of WV and SSI for telling me I make too much money - anything over working at McDonald's is too much. 


Sometimes you just get tired of asking and seeking for help, people have abused the system so much that when a real child, adult or elderly person really need it. THEY DON"T GET IT. 


My plea - if anyone knows of any resources please point me in the right direction. I think I have tried all avenues but you never know. There isn't anything I won't do to give my daughter EVERYTHING. 


I have heard of grants to get sensory toys or a sensory playground or room , technology equipment etc.

You can email me directly here  Jessica Marinaccio

Snuck up on me again

Monday is here again, how does time fly while your having fun but crawl when your not. I miss Noel all week long while she is gone at school ; she's my baby girl and only 4 years old but yet I have to make a choice I will have to live with -the choice to send her to a school two hours away so that she doesn't have to ride in a vehicle 4 hours a day plus school for 8 hours....Whewwwww that's a lot on a baby that's a lot on a parent. I get her back on the weekends and they fly by so fast , I'm so happy school is almost out and she will be home all summer long.

Just missing my baby girl, I still have my other girls at home but its no comparison to having all of my girls home with me at once. Kendall and Giuliana miss Noel when she is not home too, they ask when sissy is coming home our house is not a home when we are all not there to share it together.

Ive been asked about my Wish List ( Donate ) Button up to the right of my blog - this button was put here a while ago. If you have been with me since the start of this blog- It was my very intention to take Noel to China to get stem cells to help her eyes Ive since realized people that don't know or haven't experienced what life is like and the challenges we face day to day don't actually know or don't believe in the therapy or are hesitant to help. I've put this button there to help with any of the trips, therapies, special needs toys , equipment etc that Noel may need. This account is strictly for Noel and the things she may need- what makes a company charge outrageous amounts for a child that needs things different.

What to do ?

I'm so torn on what to do, not so much torn but I feel helpless in the situation that I'm in. Noel has her feeding clinic scheduled for May 30- June 22 she desperately needs this clinic, just the two things they told me to do at home with her on our initial visit she has been doing slowly and I know with more intensive treatment she will overcome this feeding issue. 


How do people make it with no savings, one income and no family support? I never expected the challenges I face but I always embrace them and do what I have to do and think that somehow God will see us through it and he has for sure. If it wasn't for donations when the girls were born, we would have never been able to go run back and forth the 2 hours away that they were to see them. We wouldn't of been able to pay for a place to stay and co-pays etc while I was out of work. I just don't understand how people do it, we have no family support, no savings and one income I'm praying that this situation will work out for us. I don't want to be a failure to my child. I feel so angry with the insurance company for not providing the things that we can use at home to help her we have great insurance through my job and she still gets nothing. Special needs toys - why are they so expensive life definitely  works against you but I try so hard to stay positive. Letting my daughter stay at the dorm at her school I know they love her to death but she is 4 years old, what do I do I can't provide everything she needs to blossom and grow into an independent young lady, makes me as a mom sometimes feel like a failure. Either way she is my daughter I love her and will do what I need to do for her and the rest of my family if we eat double cheeseburgers every day for a month. 

How do you do it ?

This is a question that bothers me. How do you do it? I have three children and I work full-time and I am the sole breakmaker in my home. I drive my daughter to school everyday, pick her up from a friend that helps me with her, home to fix dinner, baths, bed and do it all over again. How do I do it ? I just do it.

When given the opportunity you either excel or fail. I want my children to go after and do anything they want. Nothing should hold them back, not vision , not autism , not chronic lung disease NOTHING. You can succeed at anything you set your sights on or you can fail miserably. I choose to set an example for my children.

Don't let the opinions of the average man sway you. Dream, and he thinks you're crazy. Succeed, and he thinks you're lucky. Acquire wealth, and he thinks you're greedy. Pay no attention. He simply doesn't understand.

Author " Robert G Allen "

My how time flys

Time does fly when your having fun so they say. Ive been super busy with working and driving Noel to and from school and her two sisters. Its definitely a different journey but I do love it and wouldn't trade it for anything. The West Virginia School for the Deaf and Blind has done so much for Noel she is progressing more then I thought she would have by this time and she will still have another year of preschool next year and Id like to think by then she may be caught up enough with her peers, i definitely believe it could happen I didn't think she would be walking already without the assistance of her AFO's / DAFO's by the way she hates. 


I just got finished packing a bag for Noel for the whole week, its getting to be winter here and we have had snow once or twice I drove the mountains two weeks ago when the school didn't close and thought - what am i doing these roads were not plowed , icy and I just took it slow I was scared to death especially because I had her in the car would have been one thing if she wasn't but then again I wouldn't have been going that way if she wasn't. So the bag is packed just as an emergency bag so in case she needs to stay which is a great option if she needs to do she can and has the things she needs, its a dangerous drive without snow and ice add that its treacherous. 


Well back to school tomorrow a new week begins every week I get so excited to see what she will learn next.

Noel at her Christmas Play 12/16/2011 standing all by herself