Time to Say Goodbye

At the end of August we will say good-bye to our caregiver of three years. 

She quietly and sweetly made her way into our hearts in a way I will never forget and 

will forever be grateful.

Not being familiar with Angelman Syndrome didn't prevent her from learning how our son operates, what makes him tick and how to help him.

She did all this with love and kindness with a dose of firmness only she could provide.

Thank you dear B, we love you and are so excited for your new adventure and wish you the greatest luck possible. For you deserve all of lifes good things.

Are you looking at me?

Dear Reader,
I have never been bothered by people looking (staring) at Conrad.  But now that he is older he has a larger audience of people stopping to look as he rolls by in his red adaptive stoller playing on my iphone - every now and then holding it up for me to put it back to the photos - or trying to grab every single thing made of paper or plasitc he can get his hands on or doing his favorite heavy breathing act (Matt says he enjoys breathing more than the rest of us). But at the store today it was different.

Maybe it was because I am white flour and sugar deprived as I try to get my health in top notch shape or maybe it was because it is now spring break and not one of my kids wanted to spend time with me - even after I took them all to lunch, even Connie, he just wanted to be in his bed watching a movie - or maybe it was because I battle depression (the Big D as we call it at our house) and today I was in full battle mode.

At any rate the stares aggravated me.

I left the store holding back the tears. I pulled up in front of my house and saw my oldest boy, Ben,  hanging out with three of his buddies. They were working on their scooters in the driveway and my heart lifted as I watched them working together and it lifted a little more as they said hi to Conrad and moved so that he could get past them. It lifted again as I walked inside the house to find the phone ringing, and hearing  my youngest, Wilson, calling to see if he could play a particular video game - he wanted to make sure it was ok with me. Then it was lifted even more as Conrad gave me his ultra smile as he led me to his room and climbed in his bed and waited paitently for me to turn on a movie for him to watch. It was as if he was saying, "Mom, I know you are a bit low today, so go have a break. I'm good."
Thank you guys. I think I will.

boy bites horse

Dear Reader,

Just as I was about to crawl back into bed the other day (the day started off quite poorly), I happened upon the most brilliant blog. It saved my day. Truly! It is written by a father on behalf of his son with AS. And it is SO funny.  I then spent an indefinate amount of time reading nearly every one of their posts; giggling my brains out. It was very therapeutic.

I sometimes get so caught up in the 'hard' things required of me in raising a child with special needs that I forget to mention or give voice to all the sweet, funny and miraculous things that happen on a daily basis. 

In fact! Did you know that we were told Conrad would never walk? Well he does. It just took him a bit longer - FOUR years longer. Did you also know that we were told that Connie would not know that we love him? HA! I am happy to report that I did not believe that for one second. For anyone that knows Conrad and has seen him with his dad, his brothers, me, or any number of his extended family knows that this is simply not true.
Just the other day his Grandpa H let him 'play' with his scruffy face (which translates into- letting Conrad pretty much do anything he wants to your face-scratch it, pinch it pull on it rub it, and maybe getting a bit of dribble in your mouth all while laughing hysterically) Tell me that is not mutual love at its finest.

Please check out Christyan and Diane Fox's blog-you'll be glad you stopped by!
http://www.boybiteshorse.co.uk/not-swimming-with-dolphins/

tv debut

Here is our TV debut. My only hope was that they would have shown some more interaction between all the boys. (George was upset not to see himself on tv) But overall I really like it.
Thank you Amy and Justin for doing such a wonderful job.


http://www.koinlocal6.com/content/seenon6/story/Hillsboro-mother-writes-book-on-Angelman-Syndrome/gtPjwrsTGEeKr79sQxkvWQ.cspx

tv star?

 

 Hello there dear reader!

Yesterday KOIN 6 Local News came to interview me and Conrad about my book, "In The Company Of Angels". It started with them taping Conrad as he got off the bus and then walking down to meet his brothers at their bus stop. As soon as Conrad saw the camerman (Justin) he started to perform: giving coy looks, laughing and hugging and just overall being a ham. I think he was born for the spotlight! He really knows how to capture and hold an audience (he was much more comfortable and natural than I was) After we retrieved the twinkies from their bus stop (and the novelty of having a camercrew in our house wore off - a bit) the real interview began. I was miced (cool), told where and how to sit and where to look - not at the camera! The beautiful Amy Frazier then began the interview. She made me feel very comfortable - like we were just having a conversation between friends. She asked me everything from why did I write this book and what I want for Conrad. It was incredibly emotional and exhausting but an incredible treat and such a great opportunity to raise awareness for Angelman Syndrome.

What To Say.

I was getting my eyebrows waxed by my darling hairdresser, when she whispered excitedly, "I'm pregnant." I was so excited for her and asked all the usual questions one asks when one finds out a friend is expecting ie; When are you due? How are you feeling? Do you think you are having a girl or a boy? When we got to the last question her response was, "I really don't care. Just as long as it is healthy." My stomache did a little nauseating twist. I LOVE my hairdresser, but I have an enormous aversion to this reply. Why? Why does this question bother me so much? Because what would happen if your child was not born healthy? What would happen if you discovered your beloved child has a genetic disorder? Do you give her back because that is not what you wanted? A healthy, perfect little cherub? Now of course I know that you would go on loving that child and do everything in your means and power to help them. I happened to be the first person a dear friend saw after getting some of the worst news a parent can get. Her unborn baby had an irreversable chromosomal disorder that was essentially a death sentence. It was devasting. Of course it was not what she nor her husband would have dreamed for themselves. But their baby girl was born alive and lived for a miraculous five days. I was fortunate enough to be one of the lucky few who got to hold this precious gift from God. The Spirit of heavean was very strong with this little one, I couldn't keep my eyes off of her and it was incredibly difficult to leave her presence. Please think before you speak, for the very thing you may not want, may either be the thing that you need or the very thing that you need.