Nathan had his cardiology appointment today. He did really well. I forgot the camera. Was going to document it. He had his ekg and echo. All looks good. He has a bit of swelling of his heart but they believe it is from his meds. We are going to monitor him and see how he does. We are starting a new med completely to see how he does on it. Hoping this bring my good child back and not the one that has taken over my son. He has been so out of control. No sleeping until before 3 am and up by 8 means a miserable over tired kid. Who is three steps from breaking point. I feel so bad for him. My sanity is non existent. I will be happy to be back to normal.
I was talking with a girlfriend the other day. She happened to say she couldn’t do this. I asked what this was knowing full well what she was saying. I wont out her here. I know she reads this. I want you to know I was offended. My life is no harder or easier than yours. Are there times where I wish autism wasn’t a factor for us. Absolutely. Are there times where I just sit on the floor and cry with them yes. Would I change who they are no I would not. I am a firm believer in that god doesn’t give you more than you can handle. While we have had some really crappy hands, I would not trade this life for anything. We grow stronger as a family. We learn and walk our path together not separately. We are finding our families journey together. My kids are everything we have and want. My heart swells with pride with all they learn. It crushes when people judge them. While most people are why are you offended by she couldn’t do this comment? I am offended because these kids are just as challenging as her kids are. We are no more special than any other parent out there. You deal with the situation you are handed the best you can. That is what we are doing. I know I have said I couldn’t marry a service man for the fact I would be left behind. I am going to be left behind shortly. My worst fear is coming true. Paul will be leaving to whatever state he gets a job in and we will be here for three to four months. I will be having my surgery and then following.I will be doing what I can keep the routine for my kids. I am scared but thankful. I give those servicemen and woman a ton of credit. I know they have it harder than what I have. I know days my friend has it harder than what I have. My point is that we are all just trying to get through the day and our lives. I know my kids are different and different is always a good thing. I know it is hard to watch a child smack themselves for no apparent reason. But Please remember they are doing what they know how to make it through a hard situation for them. We try and stay away from triggers. I know I have alot of people who say expose them but why? They don’t like crowds ok so we stay away from them. Dont take offense when we say thanks but no thanks. There is always something we can do. Its ok we aren’t missing out. So for you my sweet friend here is the welcome to Holland poem it sums it up
“Welcome to Holland”
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Just know we aren’t mourning our losses. We are embracing what beauty in life we can find with them. I still dearly love you just be careful of your words sweetheart.
Enjoy your night. I am going to finish watching these boys dance their hearts out to Michael Jackson. One of my all time favorites. He may have been nuts but that doesnt take away from his talent. He is his own holland