Monday, February 7, 2011
When we decided to live one day at a time life became more simple and not so scary.
After we left children's hospital and went home, we were able to breath again knowing that our child will survive. We are still uncertain of how long she will live but for now all that matters it that we have our beautiful little girl and she is our world. Every couple months we would meet with the neurologist to check on her progress and to make sure she is not getting worse. Then finally he said we no longer needed to come and see him unless we noticed her losing skills. Other than that we just see our normal family doctors if she is ill and a Physiatrist for trials on medications and equipment that we need as she grows. Also to manage the side effects of her tone issues. Meagan has made alot of progress but is still severely disabled. She is actually classified as a quadriplegic because of her limited use of her arms. Its hard to see someone love so much endure so much as a young little girl. Yet be so strong and powerful at times. When I wake in morning I see her smiling face it warms me to the core every time. It helps remind me of what I am living for and why I am on this earth. My only issue has been the dreams I continue to have every night. When we first truly understood that our child would never walk and would be in a wheelchair the rest of her life I starting planning for her safety. I called every fire department that could possibly respond if there was a 911 call from our home. This way if there was ever to be a fire the fire departments would have floor plan so they would know where to go to save my daughter, if for some reason we could not. This is very important to do if you have a non-ambulatory child. I also had them inspect my home for any fire and safety concerns. This is a very good idea for any family because even if you have children that do not have special needs. This way the fire department knows the particulars of your home and can help you if that type of situation were to happen. I highly recommend it. It was pretty neat seeing these firemen come to my home and meet Meagan. Even they could tell how special she is, they were glamoured by her. Everyone that meets Meagan can't help but instantly love her and remember her. But even after doing all this extra stuff to make my home more safe I still have these horrible dreams. They always involve either Meagan or Adam getting hurt or even killed. Sometimes its both of them. The really hard part is that they are so real. I wake up breathing heavy and shaken to the core. Sometimes I even have dreams about Meagan dieing in her sleep and I get up to get her ready for school and she is no longer alive. Its awful! These dreams are so real they scare me sometimes and I will remember them for weeks and maybe even months depending on how realistic the dream is. There have even been times when these dreams are happening and I try to wake myself and can't. Its almost like a dream with in a dream, those are the scariest. Finally my doctor gave me some meds to help me sleep and they occasionally help. But you never forget dreams that are that terrifying. Then there is the occasion I will have a dream like that and it will happen but not as bad as in my dream. Those are the most terrifying. The ones that cause me to re-live all the other dreams to make sure none of them could possibly happen. It is a vicious circle. But I think every parent goes through this type of thing. I hope so at least. My doctor said these type of things are completely normal, he said sometimes we live out our fears through our dreams forcing us to face our fears. I don't know about that but they haven't been coming very often lately. The other thing I have been doing that helps is telling my husband about them as soon as I wake and we talk about it. He is so easy to talk to sometimes, I forget that about him. Its his memory that is selective, but that is a whole different story one for another day. For now everyone is mostly healthy except for having the flu, pneumonia, and bronchitis that is.