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.

Editing

Dear Reader, For the past several weeks I have been typing up some final edits for my book. You would think I would be elated - Not so.(well maybe a bit relieved now that I am finished) It was actually very emaotional and I spent a lot of timewiping my eyes as I relived all the emaotions from the first moments of when Conrad was diagnosed. I didn't realize how far I had pushed those feelings away. Or maybe I thought that I wouldn't have to go through all of it again. But I did. It was incredibly hard. But I am now on the other side looking up! Something so very cute happened a few weeks ao that I want to share with you. My boys (not including Mr. Conrad) were being pills to me and each other. So after bedtime prayer I had them each say 3-5 nice things about each other (Conrad was in bed already). When we were through, Wilson said, "Mom, we forgot Conrad! Can I do him now?" All three boys proceeded to say very sweet and insightful things about him. Some of the tihings that they said were: He is funny, he likes to watch TV with me, he gives good hugs, and he is nice. It was a proud mom moment.

Dix. Diez. Zehn. Ten.

See this boy? He is 10.
His birthday is never celebrated in a big way at our house. We have his favorite meal made by Grandpa H. (spaghetti, crusty bread and a cucumber and tomato salad). We have his favorite dessert, which is actually any dessert. This time it was homemade brownies with a chocolate chip icing. We don't sing Happy Birthday nor any version of it as he cries every time. We are not that bad for amateurs but he will not allow it. Maybe he doesn't like getting older.

Xlerator Hand Dryer XL-SB

Dear Reader,

It has been too long since I have written. Hopefully you have not forgotten about us!

I thought I would give you an update on what I have been doing....

Sports, sports and more sports! My eldest son and my youngest sons have been playing basketball for the past few months. I promised all three of them that I would attend all of their games. I love to watch them play and see how excited they are when they do well. I also love how they search me out among the sea of parents faces to see if I had seen their 'awesome move' or basket.

I must admit I didn't always 'see'. Most of my time was spent in the halls or in the bathroom with Conrad. He grew particularily fond of the Xlerator Hand Dryer. He would completely fall apart with laughter every time he turned it on. It was his sport, his way of getting me to 'see' him and what he could do. I have much to learn from this little human.

Are you ready to RUUUUUUUMMMMBLE?

Dear Reader,

According to Wikipedia; 'wrestling is a form of grappling type techniques such as clinch fighting, throws and takedowns, joint locks, pins and other grappling holds. A wrestling bout is a physical competition, between two (occasionally more) competitors or sparring partners, who attempt to gain and maintain a superior position'.

I was in a wrestling match today. During church. My opponent? Mr. Conrad.

There was grappling, grappling holds, pins, joint locks and a few takedowns. I attempted to maintain a superior position but was often thrown over. Because I couldn't very well pin my son to the ground and wait for the ref to count to three, I did the only feasible thing I could do. I called time and went home.

Conrad is now in his room watching a movie, drinking chocolate milk happy as a clown and I am at my computer telling you all about it.

Thank you for reading.

If you, dear reader, have anything you want to know please ask.

Live Long and Prosper

Jacob is a boy that rides the bus to school with Conrad. From the minute he sees me walking down the driveway with Mr. Conrad he is trying to get my attention. He loves to make hand signals. Anything from the peace sign to hang loose is great with him. And he loves it when you copy him or give him a new one to try. A few weeks ago I showed him the Vlucan (from Star Trek-are you impressed that I know this?!), 'live long and prosper' sign the other day. He loved it. He couldn't do it back but was intent on trying. He is still working on it.
On Friday he put his hand up to the window in a goodbye gesture. I touched the window and said goodbye.
As I stepped away from the window I saw one more hand waiting to say goodbye. It was Connie. He was looking and waiting for my hand to touch the glass of the window. As I touched the glass he smiled as if to say, "I can do it too, just thought you should know".
I know. Thank you.

The beginning

Dear Reader,
How do I begin to tell you about how the journey with an angel began? Just write.
Prior to even knowing that there was going to be a Conrad Jefferson I had promptings that there was a little person waiting to join our family. Someone excited to come down and be with us, have me for a mother and Matt for a father and Ben for a brother. I must admit I was hesitant to have another. Ben and I were such a great pair. Reading books, snuggling, napping together, going to thrift stores all over the city. I had gotten into the rhythm of three people and was quite content. However this thought kept coming to my mind more and more: someone was aching to join us. I didn't give it serious thought until our landlady said that we shouldn't wait too long before having another one. (why it was any of her business I don't know) But I remember telling her that I wouldn't. gasp. I had given weight to my thoughts. Needless to say we were going to have another.
One of my early ultrasounds I will never forget. As I lay on the table looking at the monitor, I saw a sweet little person looking back at me. As I lay looking for hands, feet and face, the technician yelled, "Did you see that?" I did. This tiny person waved. I swear it. I saw it and the technician saw it. It was proof to me that my promptings were right about someone wanting to join our family and he was so excited about it that he waved.
I drove home calling everyone I could that my boy had waved at me!! I was elated, floating on clouds, overjoyed. It was a day I will never forget. Especially because Conrad has never waved since. It was a gift to me before he was born. A wave that said so many things. Things that I will never hear from Conrad's mouth. Not in this life. I try to live everyday to be worthy of that wave and to hear his voice in the next. Because I know he has a lot to say.

Seriously?? Not again!

Dear Reader,
I feel that I must respond to some of the comments and questions I have received regarding my very first post on the question, "How Do You Do It?"
I have had several people comment that they felt they were stupid to have ever asked anyone that question. Subsequently I feel a bit of guilt for having made anyone feel stupid. So let me explain further.
Just the other day after my eldest's basketball game one of the other mom's who is also my neighbour (and I am positve is not reading this blog) asked me in an exasperated tone, "Pam! I just don't know how you do it! Four boys! There is just quadruple of everything!"
How would you respond to this? Like this? I am amazing", or maybe, "I have no idea" or maybe, "I have a nanny" or say what I said, "I don't". I wish I were amazing. I had these four little men because I wanted to. And with that comes the responsibility of caring for them. Of course it is not ever easy and is often so hard that I could crumple up on the floor at any time of pure exaustion. But I wanted them and I adore them and have made a commitment to care for them forever. And besides all that, I want to. I love them.
I really don't know how to respond to this question. Are you asking me, complimenting me or saying (this is what I hear) that you could never do it, that you are so glad you dont' have my life, it looks so exhausting, and frankly it kind of sucks!
Please someone enlighten me!
Maybe I am taking this whole thing out of context. Probably.
So! From now on I choose NOT to be bothered (well I may be a bit bothered) with this question. But if you really want to know, then stay around to hear the answer, maybe offer some support.
Thank you.

Tortillas anyone?

Dear Reader,
Do you ever feel like a referee? Or a drill sargent? And I am not talking about the ones that are revered, but the ones who are booed, yelled at, cussed at and overtly despised (At Ricks College the home team would throw tortillas at the ref's if there was a bad call made against their team). Well, I haven't had a tortilla thrown at me, yet. But I did have a lot of attitude thrown at me today. I have heard that if your children do not talk back to you or question e.v.e.r.y.t.h.i.n.g. you do or ask them to do you are doing something right. Well I must have been doing a whole lot of right today because I had a lot of 'tortillas' thrown my way.
It all started at the beginning of the week when I grounded my boys from ALL media (not that they partake of it a lot... but enough to have it sting) They were such grumps about doing anything I asked them to do that I had to do something-so why not take away a favourite passtime. After I had had enough of their complaints I had them come into my room and talk it out. We started with a prayer, because we all know I need the help.
We made a plan. 'Lyman Family Expectaions' I let the kids take the lead on what they thought should be expected of them. It was so cute as they each took turns raising their hands and giving their answers (it took some of my anger away to see them take our meeting so seriously). Some of my favourites were, Don't break stuff, Don't lie, Tell the Truth. Then it was my turn, 'Lyman Parents' Expectations'. Fairly simple. I just want them to, as soon as they walk thru the door to hang up coats and backpacks and put their shoes away (Is that so much to ask? Apparently it is). They agreed, with the stipulation that if they had to rush to the bathroom they could do that first. The other main one was coming when you are called. This is HUGE in our family, as they come immediatly when dad calls but not when I call. I really h.a.t.e. that. So we had to set up rules and sub rules. So the first call is really a two minute warning, to finish up whatever you are doing. Second call is to come immediately or miss out on dessert, third call is instant timeout and fourth call is grounding. They made up the all the sub rules except for the second call.
But alas rules must be enforced. So I have become a drill sargent calling out calling for my cadetst o fall into line. Nevertheless there has been a lot of calling and warnings and pounding of feet on stairs as boys try to beat the no dessert call.
It is so hard to keep it up! Then I caught one of my boys in a blatant lie. Arghh! Anyway the day is finally over and a fresh start awaits me tomorrow. Wish me luck.
Good night dear reader.

Dear Reader,
While I am writing this I am listening to my dear angel cry his eyes and heart out. I have done everything that I can to comfort him: changed him, snuggled him, changed his movie (several times) fixed his pillows, fixed his blankets, talked with him and still he cries. What do you do for a child who can't tell you what they need? It breaks my heart. Plus his favourite person (his dad) is out of town. He may know what to do. Is it bad that I am now spent trying to figure it out, and am just going to let him cry it out? Matt would probably say that we have done everything that we can, let's let him figure it out. But it is not that easy is it?

It is not all bad news tonight however! A prolific doctor in the Angelman community, Edwin Weeber, Ph.D. has begun to recruit participants in a clinical trial at the University of South Florida. It is called The Minocycline in the Treatment of Angelman Syndrome Clinical Trial. It is a trial of a drug that may be a treatment for Angelman Syndrome. Please go here for more information www.CureAngelman.org.
I would love for those of you that read about the trial to give me your thoughts.
Thank you.

Dear Reader,

Adaptive, special, ABA, intervention, manipulatives, assistive, Sens-Aura, multi-sensory, Gotalk, standers, Snoezellen, Life Skills Classes, medically fragile, non-verbal, Trileptal, in-home support, respite, sensory, Dycem, service coordinators, utensil hand clips, CIIS and BigMac buttons are all words and terms that have become part of my new vocabulary. Maybe I never would have become acquainted with any of these terms if it hadn't been for Conrad. Sometimes I think that would be okay. It can be so wearying having to figure out how to adapt every single thing that has to do with Conrad's world, that I could either scream or curl up in a ball and cry my eyes out. Today I feel like crying my eyes out.

These are my boys. George, Ben, Conrad and Wilson. I think it might have easier to fly to the moon than to get them to stand still for five seconds to take a picture of them. But they did it.

I seriously don't know what I would do without these two in my life. Especially the bigger one. (wink) He is so good for me and is the perfect dad for Conrad. Just the other day he called while on the road just to say that he missed hanging out with Connie.
As soon as Matt walks in the door Conrad pushes his way towards him by any means possible. Even if that means bowling people over in the meantime.

Dear Reader,

I have been thinking a lot about a question I get a lot by friends and strangers a like. It is a variation on the following, "How do you do it?" or "I don't know how you do it!"

These questions can be so annoying and hurtful. As I often think to myself, am I doing someting wrong, am I a bad mom, how do I do what? is my life that terrible that they would not want to be in my shoes? (In other words; have a differently abled son, twins and a singleton child)

How do I do it? I just do.

I love my children fiercely and will do anything for them. I will fight for them, protect them, advocate for them, play monopoly with them (but I will be hating every minute), get my hair pulled on, bitten, scratched, hugged, kissed, yelled at, and tell them I love them every single day.

Being the mother of a disabled child is very challenging and utterly exhausting as I know some of you who have disabled children know. But so is being the mother of 'typical' children.

The advantage I think to having a son with AS is that he never talks back, never asks for anything while at the store, never whines and is typically happy all the time (except when dessert or his bath is over, wink) He is satisfied with his life as it is.

But then, I often find myself second guessing decisions I make for him. For example: does he really want milk to drink, does he care what he is wearing? These are all trivial, I know, but I can't help wondering. The things he does seem to care about and lets us know, are the programs he watches on TV-he does let us know if he is content watching what is currently on or not. If he is not content he will seek out the remote and put it in your hand until the channel is more suitable to his taste. So he does make some decisions :)

Being the mother to the four boys I have been given has made me not only the mother I am today but the woman I am today. I know for certain that that is true.

Having been asked these questions countless times has made me look at my life and ask myself, How do I do it? and I always answer, because I just do. I don't do it alone, however. I have a very supportive husband who knows if I have had a hard day the minute he walks through the door and says to me, "Get outta here, I've got this." I also have a caregiver who comes everyday after school to play with Conrad and take him on outings.

This is how I do it.

Dear Reader,

It has been almost four years since I began my journey to write a book about my son, Conrad and our journey with his diagnosis of Angleman Syndrome. I did not do it by myself, however. It was always my vision to create a book about AS with several different voices (those intimately involved with someone living with AS). After many letters asking for essays, poems and pictures of said people I have a book compiled. It is curently in the line up at Tate Publishing to start production in March.

For those of you who have been so kind to share your stories with me and now the world, Thank you and Congratulations!