Avery Grace

Avery Grace

Monday, March 29, 2010


Yesterday our sweet Avery Grace turned four. This year we made a great effort to keep it simple, and celebrate Avery for all that she is and for what she CAN do... and for all the love, wisdom, joy and grace she brings to our lives. I spend quite a bit of time on this blog documenting my journey with coping and acceptance. I initially intended to be writing about the great strides Avery would surely make in overcoming the challenges of Autism and mastocytosis, but the journey never quite goes as planned, and ours has been a struggle I never imagined would be so arduous. But yesterday, even if it was just for a moment, we were able to put aside our heartache and worry, and celebrate our precious daughter... just as she is.

At four years old, Avery is still doing great on the potty. She is not 100% yet, and can't initiate that she needs to go, but as long as we put her on there every 45 minutes or so, she does an excellent job, and is even learning to pull up and down her pants! She is a wiz at her iTouch, and it has been an extraordinary vehicle in her success in communicating and showing us what she knows. Avery is pretty good at puzzles, and loves to hold hands and is gaining motor strength all the time. She can almost climb stairs without assistance and loves to climb all over the furniture in the house! Avery can use a spoon! She loves to eat and is becoming much more independent at feeding herself. Avery seems to really enjoy going to school. She has amazing teachers and therapists who enrich our lives and have opened their hearts to Avery and our family. Avery has a precious disposition. She is happy and content most all of the time, and perhaps most importantly, she brings awareness and hope to those who know and love her.

Whoever dreamed that my most influential teacher would be a sweet, disabled, little girl who has no idea of her impact? Who may never know how she gave me purpose and brought meaning to my life. There is alot that Avery cannot do... and may never be able to do... and that is hard..... very very hard... to wrap your mind around. BUT, through gratitude, love, acceptance and awareness, I can see Avery for the amazing little girl she is. I hope you can too... I hope that her life and her story brings you awareness, perspective and most of all hope.

Happy birthday to our precious angel. We love you always and forever.... and to the moon and back again.

Saturday, March 20, 2010

Permanent: Coping

It may be the first time in a month that I have a completely quiet moment to myself. It is early in the morning, and the rain is softly drumming the roof, and all in my house are sleeping, except for me and the dogs.

Kaylin will likely be up any moment, and when she is awake, there is never a dull moment. She always has something to say, and amazes me daily at her ability to communicate and understand. The blessing of a first born who has a disability is perhaps having the awareness to really appreciate and value what comes naturally to most children. I take none of it for granted.

Avery and Bryan will hopefully sleep in. Avery has had a very hard time sleeping lately... a common occurrence with children on the Autism spectrum. Even though she is medicated, her neurotransmitters just don't work the way yours and mine do, resulting in crazy sleep cycles and many restless nights. Bryan took over last night and they didn't get settled until after 3 am. So I am on Kaylin duty this morning as soon as she awakes.

Our day to day life has been very routine lately, and as I am now into my second trimester, I have a little more energy and am maybe a little less sad and overwhelmed. We had a level 2 sono of the new baby as well, who so far looks healthy thank god, and who the doctor thinks is a boy. All good news.... Uh oh, Kaylin woke up... which means I may get in one sentence per hour today. :)

I'm back... but it's another day all together! Oh well... ANYWAY...

Lately my thoughts have been circulating around the idea of permanence and how it relates to our journey with Autism. Most things in life are not "permanent." The great reality of the human experience exists in the unique ability we have as individuals to change our circumstances. Sure, that is not always the case, but more often than not, "permanent" is not really something we have to deal with all that often. Even for us, though Autism is "permanent" the challenges we face related to it and it's hold on our family as a whole and our little girls' beautiful mind, are likely to be ever changing. The whole journey has evolved for me personally, into something I hoped was "mild" and only really "hard" initially, to something I now understand to be quite severe and likely, difficult (though changing) for the rest of our lives. I don't think I could have wrapped my head around that in the beginning. But over time, my understanding of how Autism effects Avery specifically, and even our family, has become something I am learning to cope with daily, if not hourly. And if there is one thing I am sure of, it is that the hard parts are no where near "over."

Every week or so, I read another story of some miraculous child who beat the odds and has become "almost indistinguishable from his or her peers" or has all but "recovered" from Autism. Frankly, I am sick of such stories. I guess they didn't have the kind of Autism Avery has... because if there was a way to treat/recover her, I promise you by now I would have found it. Surely. Not that I have completely given up hope. I still believe in the possibility of medical or even holistic breakthroughs, and I remain optimistic that one day, Avery will be able to function at a much higher level than she does now... but as we are weeks away from her 4th birthday, and she is still non-verbal and very very very disabled in every way... my initial hopes of "recovery" are long gone. It saddens me beyond anything you can ever imagine, but I fear it is our reality, and that Autism is one permanent factor in my life that I cannot change. The guilt is overwhelming. My words could never even begin to describe it.

Which brings me to my purpose. Not the purpose of this particular blog entry, but my overall purpose... at least for the moment. How can I turn something so devastating, so completely maddening and life changing into something at all positive or productive? I can do this. I can use our story and share it with people who may need to hear it. I had a great opportunity a few weeks ago to speak at a few mom's groups in the area about sensitivity to friends and family who may have a child with a disability and about what it's really like when it happens to you, or your friend, or someone in your family. It was very therapeutic to me... much like this blog is, and like my job which includes helping parents through the hardest time in their lives... I feel that providing that support and spreading my own message may just be my purpose. My life purpose.

So what else can I do? I can talk to other mom's going through diagnosis, I can unite them and more weathered mom's together in well deserved "mom's night outs" and I can spread awareness, and hope, and share sorrow and pain. Better mom's than me are out there lobbying for insurance coverage, are trying to change laws to better our disabled children, and are really attacking some of the bigger issues... but here at home with my soon to be three small children, I have to find a way to bring some sort of meaning to my situation. To create a silver lining, and to make Avery's life and existence valuable and important. I am her voice after all... and it is up to me to make sure that her message, whatever it may be, is heard.

I am trying to figure out, little at a time, how to do that. How to somehow make lemonade out of rotten lemons. I may spend a lifetime trying, but since I can't escape our permanent circumstance, I guess I have a lifetime to keep at it.

Now for the positive spin.

Autism may be "permanent" for us, and it's resulting challenges ongoing and ever changing... but also permanent are my deeply rooted feelings of devotion, love, respect, adoration, and passion for my child who may never be able to show me any of those things in return. I am forever committed to her. To help her be all that she can be, and to provide her with every opportunity I can, including a family who loves and supports her... no matter what. I am permanently committed to protect and adore her, until the day I die. And find some way to provide for her even after that. Another life purpose.

I always felt like I was made to be a mom. I never knew how hard that would become, or how much I would actually love my children, but I knew it was meant to be. I can't say the same for Autism. Our kind of Autism is devastating. But I'm trying. I will never give up. That is permanent too.