Groundhog Day.....

Our life is very much like the movie Groundhog Day. We do the same thing everyday BUT everyday is different because you never know what to expect. We do everything if at all possible to avoid meltdowns. We have routines. We have our morning Monday-Friday routine for getting ready for school and work. Our afternoon routines are the same Monday-Friday after work and school. The same goes for Saturday's and Sunday's, the routine is different from M-F but it is the same routine as the last weekend.

I've never been a stay at home person, me and Zan was always on the go before I had Haygen so this has been a huge adjustment for us. We spend a lot of days, nights and even holidays just the 3 of us together. Some people think we just don't want to be social but it really isn't that easy. When we do get away from the house, we pretty much have to load up the whole house to go somewhere, even the wheelchair. Even though Haygen can walk now, I still have to use the wheelchair because he doesn't understand commands and he's never still. He is like the "energizer bunny" his batteries never run down. During our stay in Memphis, he was tested for "Angelman Syndrome". Children with Angelman Syndrome are very happy and require little to no sleep and you've guessed it, he was negative. He did not have Angelman Syndrome!! On a good night, Haygen may sleep 1-2 hours a night and that's through out the whole night not all together.

Haygen has no fear and feels very little pain. He had cut his foot one day and I had no idea until I saw bloody little footprints throughout the house. He never cried or anything, and I had no idea how he cut it. I spend pretty much everyday trying to "Haygen Proof" our house but you really have to stay on your toes with him. He's very smart and he can figure out more than you'll ever know and that's because he can't communicate it to you. I bought our first house at the beginning of this journey but I never knew the path our lives were fixing to take. I love my house but I'll probably have to rebuild it from the ground up before we are even half way through this journey. It's a very good thing that I own our house because we are constantly "Haygen Proofing" it just to keep him safe. The way I look at it is that everything can be replaced except our Haygen Baby. We are always at our house except for when we are at work or school. Thank goodness for the never ending evolving of technology because our iPhones, iPad's, and everything else is what keeps us connected to the outside world. I always tell people if it doesn't happen on Facebook or Twitter then I don't know about it and they just laugh but I'm dead serious :)

Being a parent to a special needs child takes a lot from you. It affects you personally, physically and emotionally so being able to get a break from it all is very important. You need a break so that you can recharge and stay the good parent that you are and that's so hard to explain to someone on the outside. They think you are being selfish and that's so far from the truth. I've tried and tried to explain this to a person and it does no good. I don't ask anyone to keep my boys for me to go out and party or anything like that, its mostly when school is out and I have to work. I understand some people not wanting to keep Haygen because its a lot on someone.....Believe me I know :) But when you ask everyone that you know and beg and plead with them because you REALLY need to work and the answer is always NO, that's when it dawns on me that we really are in this world alone. Its a huge emotional roller coaster but when I find myself in the situation again, I always ask anyway thinking the answer may be yes but it never is :(  I haven't stopped asking for someone to watch them while I work but I have stopped asking for someone to watch them while I have time to recharge.

I did ask someone about a year ago if they would watch the boys one weekend a month so I could go and do things once a month without the boys and the answer was YES. Well, I'm still waiting for that to happen. I have FAITH that it will happen, ok maybe not for me but for somebody it will :) I can't stress that enough about how important a break is because the Groundhog Day is real in this life and it doesn't stop. That's all you have to look forward to, doing the same thing everyday. I guess the only thing that keeps me going is MUSIC. That's all I have (well besides my phone lol) that I enjoy and I can listen to it, sing it, scream it or whatever and wherever me and the boys are :) On the bright side of things through, I have been raising an 1 year old for the past 6 years (Haygen is 7 and on an 1 year old level) and that means I'm not getting older either :)