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.

joy

Joy. That is what this picture emotes every time I look at it. I LOVE it. In fact I love it so much that I am thinking of having it blown up to an unbelieveable size and hanging it above my bed, so that when I wake up every morning I can't help but feel joy. (Well maybe I won't hang it above my bed....) Conrad is my joy and sometimes my greatest sadness, this is why I love having pictures of him that show his true personality. He is joy. I was reading a friends Facebook page the other day and she posted this scripture:

Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal: But lay up for yourselves treasures in heaven, where neither moth nor rust doth corrupt, and where thieves do not break through nor steal: For where your treasure is, there will your heart be also."Matt 6:19-21(KJV) I was reminded that we must treasure up moments of joy and happiness with our children, put them up and remember them so that when we have been knocked, pushed or even tripped down we can be reimnded of the moments in time that stood still and we felt - joy.

A book is born.

Dear reader, I have written a book. It is now for sale here: http://www.tatepublishing.com/bookstore/book.php?w=9781621475644 I hope you will read about it and maybe buy a copy. I mostly hope that you learn something about Angelman Syndrome, and how it affects the lives of those living with someone who has it and the lives of those caring for someone affected by it. Writing this book was an honour for me, as it put me in touch with some of the most lovely, determined and passionate people I have ever had the pleasure to be involved with. Thank you.

It's here!

I was having THE WORST day earlier today. After grumbling and making everyone, including myself miserable, I decided to remove myself from the house and take a walk to the mailbox to cool off. I opened #10, to find the usual junk mail, Ben's Sports Illustrated magazine, bills and a white plastic type envelope addressed to me. It was from my publisher. Tate Publishing. I stopped breathing. I closed the door to #10, removed my keys and proceeded to slowly make my way home. How does one react in these once in a lifetime situations? Is there a protocal? Should I run and jump and knock on every door telling everyone that my book came? I wasn't sure. Deciding there wasn't one, I proceeded to open the envelope. I was a bit surprised that the envelope wasn't bigger and heavier. I was expecting a manuscript type document that I was to go over and make any last minute changes. No. It was my book. With the picture on the front that I fought hard to have there, printed on Natural paper like I had requested. It was perfect. I reached my house, walked in and handed my husband, Matt, (who had been the brunt of my mood earlier) my book. He took it and grinning from ear to ear proceeded to read it and tell me how awesome it was. And it is.

My Book

Dear Reader, It has been several years, many late nights, early mornings, lots of tears and loads of joy to finally arrive at this moment. I present to you, my book. (I am sorry the image is so small)

s.t.u.c.k.

Dear Reader, I often feel this way - stuck. And not the kind of stuck you know is temporary - the kind with no end in sight. I am trying very hard to change my thinking. I just finished editing my book about my experience with raising a son with AS (angelman syndrome). Recently, I was talking to Matt about how he felt when Conrad was diagnosed with AS. His experience has been so very different from mine. Where I feel more of the challenge of raising a disabled child, he feels the blessing. Where I feel like I am spinning my wheels, he recognizes the opportunity to change our view of what our life could have been to what it is. Of course he is right - Conrad is a blessing and of course we have had to change our lives significantly to meet the demands required to care for Conrad. However, I still find myself feeling stuck. I just can't help it. Stuck can be relative. I have learned to see things differently from my vantage point. I have learned to be more patient, to listen and to wait and pause for answers. Although 'being stuck' gives the conotation of not moving or growing; it can be that way unless you learn to stretch and grow in the place you are stuck. Do you ever feel stuck? How have you learned to accept it or gotten unstuck. I would love to hear from you.