Monday, January 13, 2014
What life is like now in 2014
Well its been a couple years since I've blogged. let me start by updating you on emma and how she has been these past couple yrs. She has a few new conditions. Eplilepsy which scares the bejusus out of us. Encopresis its a fear of using the bathroom. This fear comes from her having a rough go with CDIFF. It was a horrible time. Her sensory processing disorder has gotten really bad this yr. We need so many trips to Vanderbilt but cant afford them. I write to the ellen show daily in hopes of a handicap van. My husband was blessed with a good job. But for people who have been behind a year its extremely difficult for us. I would love to talk about my son but he is 13 now and deserves his privacy.. My little boy is young man now. he's 6'1 and 180lbs. Man does he make me feel old. I wish he knew how much we love him.. So we just got back from Emma's make a wish trip. I would like to thank Middle tn make a wish for making my dream for my girl come true. This trip was amazing. We saw and experienced things we've never got to do before being a family on tight budget. Emma's favorite thing was just to sit by the pool at night and watch cartoons on the big screen. She finally got Woody and Jesse from toy story and really loves them. Emma got to feel the ocean for the first time, ride a huge ship like they do in her cartoons. It was nice not to worry about groceries for the week etc. We feel blessed to have to gone on this beautiful trip. So now the ugly. I haven't really spoke about our vacation. I dreamed of a magical time for us all. But when your family is filled with mental illness's and disabilities not all of your dreams can come true. It seems the whole family was misplaced with being so far from home and our comfort. Emma slept a lot on the trip because her absent seizures are picking up, so there was a lot we didn't get to do with her that I have dreamed for over a yr. which broke my heart a little. Seeing your child on trip like this isn't easy, we didn't win a vacation we got it because we don't know how long we have with our girl. There's no time table on Emanuel syndrome. Honestly I feel quite ashamed that I wish we could do it over. Maybe worn ourselves its not going to be a miraculous beautiful occasion. To make the best of it because it may not ever happen again. Well update on me time.. this has been the worst yr yet on my depression. I don't know why it's spiraling out of control. maybe lack of sleep emma sleeps 3 hours at time. Maybe its not feeling worthy that I cant work and provide for my family. Before children I had a lot of jobs. I liked working. Now my time is spent taking care of my disabled child, she miss's a lot of school and we have no help so we compromise. on everything. I think I write to ellen so much because if I did get that van it would be me contributing in a way. I shouldn't feel ashamed for being a stay at home nurse mom but I do. I don't know how to help us when we get in trouble. like now. we are way behind on rent and all utilities have shut off notices. with no local help. This is when the depression and crying gets the worst. Sure I can get a nurse for my child and work at mcdonalds but why? I can move to several states who would pay me to take care of emma instead of a stranger.. but life isn't that fair. I don't know how to help myself or my family. This year I just want my kids to be healthy and happy and us get out of debt. please god help me with all our problems. and Thank you for blessing me with a beautiful family.