Baldwinsville, Ny
USA

315-802-8202

THE PURPOSE OF MY BLOG IS TO FIND OTHERS OUT THERE SIMILAR TO OUR DAUGHTER'S CONDITION.  TO HAVE OUR STORY BE HEARD AND SPREAD AROUND. TO GET GUIDANCE, MEET NEW PEOPLE, A VIRTUAL COMMUNITY OF HOPE! WE'RE HOLDING ON TO THE POSSIBILITIES! LET YOUR VOICES BE HEARD. EVEN IF IT'S JUST A HELLO 

Thing are just getting hard to accept

A Mother's Journey~Ezra Monet

Thing are just getting hard to accept

Christina Manning

Blogging. It's about expression right? The ability to put thought in to words. Being honest with yourself, telling readers how it really is to be in your shoes. Well I'm Christina, I have no problem putting thought into words. My story in an open book. I've been so focused on Hannah because well that's why I designed this website. However I am someone too. Without me, and my wife, there wouldn't be a Hannah right?  I haven't taken the time to express how I feel about all of this. Where my mind is with this all. I don't wanna do this anymore. I'm tired. Doctors after Doctor. I've hit a dark place. Not only that, but financially this is getting pretty difficult. We're on disability. We can not afford to do all of the things Hannah wants or get all if the things she needs. She has seen the inside of a hospital more than the inside of a toy store. When money is tight we look around the house for items we don't need anymore and can return back to the store. We go to 3 different food pantries a month. We go to clothing closets. We're going to NEED a wheelchair accessible van for Hannah and there is no way I will ever be able to attain that for her. So that means we will never be able to transport via wheelchair in our own vehicle. How can I provide her quality of life? She IS CASE 1 in the world yet no one is picking up her story. We rent a 875 sq ft ranch that has absolutely no room for the modifications Hannah needs for her medical changes as she degenerates. Such as a rail lift, a larger tub, a larger room etc.  She struggles just getting in amd out of our current vehicle. She has balance issues and our driveway is all rock and we can't evem push her wheelchair to the bus. We struggle just shoveling the snow for her and trust me we get tons. takes about 2 hours, and thats time consuming when it already takes so long in the morning with her routine involving her feeding tube and getting her dressed etc.  I can go on amd on but that's just a little bit about our story. One day maybe we will make some friends, have a babysitter which we never had! A real honey moon a real wedding... We have so many dreams, but there just dreams. Right now I just want hannah to be able to get around without struggling, and be able to do activities outside our home without saying I'm sorry pumpkin mommy doesn't have money to take you to Build a Bear or buy that new toy you want, or new device. It sucks. Emotions I feel are anger, greif, confusion, stress, exhaustion, determination, joy, fight, and so many more.  LOVE IS NUMBER ONE