Avery Grace

Avery Grace

Tuesday, October 28, 2008

Perspective to reality

When I was a kid, and still to this day, my mother has a saying framed in her house on "attitude." I can't remember exactly what it said, but the premise is that we can choose to have a good attitude. Pretty simple really, but harder than it seems when the going gets tough. I think about this quite a bit, and about how to really change my perspective when examining my reality. This involves more than a shift in attitude, but an entirely new way of looking at what really matters, and what life is really all about. It's not about 'what other people think' or material things or even accomplishments. It's also not about what we "can't do." I have to re-focus on relationships as being my # 1 priority. But here's the kicker. My child has a REALLY hard time "relating" to anyone. She does better with me and her Dad than anyone else, but for the most part, avoids interaction at all costs. So now what? Now is when I change my perspective. Here is how it works: she's different... and that makes her unique! She doesn't look at us too much, but when she does, the light in her eyes is glorious. She flaps her arms when she is happy... so she can express emotion! How wonderful is that! She is a picky eater... but she doesn't complain! She can't talk yet... so we don't have to deal with talking back! and so on. There is always a positive side... sometimes we have to hunt for it, and in some circumstances we may not know for years or even decades what it is... but just knowing that it is there is what makes each day so beautiful. To some extent, we really can choose how to react to and think about things. Sure, we all grieve for the "what could have been" but I am choosing to celebrate what "is now." Right now, Avery is happy. She loves birds, airplanes, trees with moving leaves, swings, little people, ANY penguin, trains, music and going bye bye. She is here with us, and I can choose to enjoy her, (while also working tirelessly to help her) or I could choose to live in self pity and anger, constantly looking and thinking about what she can't do yet. So, I celebrate the ability in her disability. Am I "happy" that Avery has TWO debilitating conditions (Autism and Mastocytosis)... of course not. I hate it, and I will admit that several times during the day I have to take a deep breath and snap myself back into positive thinking mode. But, today is all we have... so why not make the most of it. (and all this coming after a weekend spent with typical children!) Wow, how far we've come... and it's only just begun.

Saturday, October 25, 2008

Enjoying each day.

Fall has officially and finally arrived here in Frisco. We are as busy as ever, but trying to remember to take out time in each day to enjoy special moments with each other. Avery is making some progress, especially at her preschool where we are so fortunate to have two loving teachers and one incredibly special shadow helping out our sweet girl as she learns how to be a part of the class. Regardless of the "why's?" that we all have when life doesn't go our way, we are certainly blessed and grateful for the friends, family and amazing therapists who bring us so much hope, love and support. I have more to write about later, but wanted to post some pictures in the meantime of our recent trip to Oklahoma and a few others. My brother and his family were so thoughtful and welcoming. My niece and nephew are so natural, helpful, and loving to my two girls, and we really enjoyed spending some time with them.

Friday, October 17, 2008

Without conditions. period.

So I skipped a week of writing... good thing there is no actual "deadline". It's been a busy week with my mom, Avery and Kaylee's beloved "Grammy" here to visit and help out. Thank god for my mom. She is my rock, and she is the greatest teacher of all on how to love unconditionally. Who knew how incredibly valuable that lesson would become in my life as it is now. The love we have for our children is like none other. I have written of this before, and truly believe that on many levels our children's souls are somehow connected to our hearts as we walk our journey through life. When they feel pain, we feel pain, and the same is true of their joy and success. But on some level, as children age, it seems like expectations come into play as far as being "proud" of them. I see parents all the time demonstrating this pride, as they talk of their kids accomplishments, their successes, and so on. I am sure that their love is not "conditional," but sometimes one would wonder in hearing them talk. Having always been a little bit selfish and pretty accomplished myself, I totally GET the need for approval and trying to earn love and attention. So in the big picture, Avery is teaching me, and all who know me and her on what it means to really take OUT the conditions. I approve, applaud, adore, and am proud of Avery every single day. Does she give back that love and attention? Sometimes, and in her own special way... and that is enough for me. It has to be, or I would live in a very dark place. I know that she is here for a reason. She is a gift and a blessing just as she is. Does that mean I lose hope in trying to heal her? Of course not... I want Avery to be all she can be, but as I live through this experience, I am trying to be realistic. I have had hope for Avery since the day she was born. One year ago I typed in my iphone all of the words Avery was using. She had lost a few at this point, but she was still able to consistently use about 15 words. She was still able to point and do a few other gestures that she ultimately lost to Autism. I remember being stressed as I wrote the list, but thinking... "things will be different in a year... she will come so far." Boy was I right and wrong. Things sure are different, and though she has made gains in some areas, for the most part she has been in a major state of regression... losing all of her words, becoming a sensory mess etc etc. But I hold on to that hope. As her mother I owe her this much and more. I KNOW that she will likely progress as she gets older, but my love for her is hardly conditional upon that progress. I love her without expectation, without conditions. Period. And so does her dad, and Grandparents by the way. So I am starting to "get" the big picture I think. Maybe for us, Avery is here to teach us all about how to love. Lord knows Grammy already knew this, but for the rest of us caught up in the hustle and bustle of sports, grades, accomplishment and competition, Avery brings us back to what is REALLY important. Just loving her for the sake of love itself. How beautiful and perfect that lesson is.

Sunday, October 5, 2008

I miss her.

I have thought of a hundred things to write about this week. But what consumes me the most at this very minute is the longing I have to truly KNOW my little girl. When Avery was a baby, up until she was 14 months old or so, she was full of personality. She still is I suppose, though it is hard to decipher what is "autism" and what is "personality" at this point. She was full of light and wonder, and was so connected and involved with us every minute of her waking life. Over the past year or so, as she has become more and more disconnected, I have wrapped myself up in how to help her... how to treat her... how to bring her back.

Earlier this week a new show premiered called Autism x 6 about a family who have six children, all of whom fall somewhere on the Autism spectrum. If you have a child with Autism... don't watch it. For those of you who want to know more about the disorder, go right ahead. It was pretty devastating to me. To see their 6 year old non verbal daughter, still in diapers, dance around on the kitchen table, seeming completely unaware of her surroundings was more than I can handle right now. I am in the fight of my life, and I don't want the loss to look like that. From what I can tell however, this family knew little of early intervention. I know better than most how crucial early intervention is to the potential living in the hearts of our children. I wasn't born yesterday and I know there is no "cure" for Autism or Mastocytosis for that matter... but it doesn't mean I give up hope. I will keep trying, keep fighting, and keep searching to get my sweet daughter back. I love her to pieces just as she is... but I still miss her. I will miss her everyday, every minute of my life. She brought music to my soul. Though the melody has forever been changed, the song is still present. Still playing. Still growing and changing as time beats on.