It's giving the same feeds and meds... Trying to feed the same foods, the same way. It's the hoping that this day will be THE day that you finally get the whole eating thing.
It's praying that he cough Kenny has doesn't land him in the hospital...even 4 years later (after his early birth) It's the loving him, that beautiful smile...the knowing what he's been through and wishing nothing but great things for him. It's knowing that his life will be a struggle harder than some but a little easier than others. It's the battle of wanting to have a life outside of just being a caregiver mommy but knowing that it's impossible. And honestly, It is a hard pill to swallow at times, but OK at others.
It's getting the dirty looks in stores, restaurants and wherever else we go as a family because people just don't understand the loud screams and tantrums of a child with autism and hearing loss. It's the nonstop day (and night) that I face...no breaks, no respite and unable to quite understand what my child wants and needs.
The newness is when he comes home from school with a new art project the teachers helped him with, a new sign that he uses at times when he really wants something, or even this past trick or treating when he ran from house to house opening his bag for candy...then doing the sign for "more". He'll never even eat the stuff, but for him, the fun of it all was going door to door! It's the feeling if praying that the cold he gets doesn't turn into something even more. Holding my breath at every cough, breathing treatment and fever. It's also the feeling if trying to juggle 6 other kids with their wants and needs. Helping with homework, breaking up fights between a few, trying to them to help out but knowing very well that they won't. The laundry, meals, dishes, picking things up....yep, all on me. They have totally used my weakness of having to take care of, and watch Kenny 24/7 to their advantage! I'm living a nightmare whom not many would want. but many feel that I brought it on myself for having so many kids...well...here's to those that say/think that...
My husband and I decided to have a big family...every child very welcomed. The fact that we have a special needs child was something that we were no expecting but are doing lour best taking care of him (and the rest of the kids). Its not what many people experience in their lifetime....having tons of kids, losing a child and having a child with many extra medical and special needs.
So onto the bad luck we've been having...ha ha...
The oven blew up On Friday night while in the process of making cupcakes for the church...so no stove. My daughter Gina is seeing dead people in our room at night...how awkward esp. On 11-1-11, we have several birds living in our, and the electrical throughout the house is slowly....whats the word...dying.
I am very blessed to have an amazing husband who is my best friend. He is a very hard worker and loves spending time with the kids. Now if we could just find a date night (OK...make it a weekend), it would be awesome!
Its been one heck of a few months in which I really need(ed) to regroup and come to realize that sometimes dreams don't come true and that if you want something badly...sometimes you just cant get it...So basically, I'm drained and honestly have no fight left. Ive been through way more than I ever thought of and can't really handle much more. Ok stepping off the pity party podium. Btw....thanks again EM:HE for helping us, it was so worth it...haahaa! I just need to rest my mind and soul and self. Sometimes I miss my old life, but love my new life even though I sit and complain (again...this is why I write this blog...to write out all my feelings...positive & negative).