Avery Grace

Avery Grace

Saturday, December 11, 2010


One of my favorite things to do during this season of giving and thanks is to simply drive around and admire the lights. Even as a little girl, even when it wasn't Christmas at all, I would beg my mom to take me out to see the lights of the night time... even just the lit up grocery store signs would make me giggle and smile.

For the very first time this year we will be celebrating Christmas at our home in Texas rather than traveling to Atlanta, so I couldn't wait to put up our very own lights to join in on the season. Something about light still brings warmth and joy to my heart, and as I ponder this phenomenon, I realize that my own journey has many "lights" that lift me up when I am having a bad day, and bring a sense of ease to my soul when I let fear or darkness ease in a little too much.

The brilliant and beloved Martin Luther King once said "But I know somehow, that only when it is dark enough, can you see the stars." Lately, I have been using this blog as an outlet for my feelings when I am having a hard or dark day. Most of our days are actually good, and I am delighted to say that even amidst that chaos, I have found a peace in the day to day experience of being the matriarch of my beloved family of 5. But I must say that I am truly grateful for those "darker days" as they allow me the opportunity to practice patience, to practice that art of maintaining an attitude of gratitude, and to have a much greater appreciation of the many lights in my life that bring color and brilliance to my family, my perspective, and my overall life experience.

I have to say that most of the "lights" in my life come in the form of people. People to help me choose laughter over tears, who demonstrate love and encouragement in their words and actions, and who, like me, can see the love and light in Avery's eyes. All three of my precious daughters are a huge source of light to my soul. Each of them, in very different ways, afford me the opportunity to learn and grow as an individual every single day, and I am so grateful to be so lucky to be their mom, and watch them change and develop into their own very unique little people. Disability or not.

Earlier this week I had the chance to meet another beaming light. It was a quick encounter, but it came just in time to illuminate a dark day, and I want to share it with you. I was in the waiting room at Avery's OT appointment and I met a handsome little boy, about 10 years old or so. He was playing and communicating with his babysitter, but not in a way that you might think. I realized that he was non-verbal, and had Autism... and was then so excited to see him use his electronic device to be able to express social gestures, wants, humor, and needs. It was a touch screen device that he could type in or touch a series of pictures. Then it would "talk" for him, allowing him to verbally communicate without saying a word! Very cool, right!? I thought so, and I can't tell you how much hope and light this brought to my day!
Avery is doing great on her touch screen ipod and ipad. And we have purchased several app's that should do this same thing for her one day. She is pretty preoccupied with her games, songs, and videos on it right now, but I am very hopeful that in time she too will be able to use her very own device to communicate with us in some capacity or another!

Sharing my fears, thoughts, anxieties, heart and soul on this forum has it's pros and cons. I can't please everyone, and that certainly isn't my purpose. I write on here because it is cathartic to me, and because I have family and friends who love Avery and our family and want to hear about our journey. If you know me at all, then I hope you know that at the end of the day, I love my life... the good parts, bad parts and ugly parts. They weave together to form a colorful, beautiful, warm and empowering experience that I wouldn't trade with anyone's. Even disability and disease can't weaken the bonds or limit the love, and through the darker days, I am able to see more light than I ever imagined. We have each other, and that is the brightest part of all.

Monday, December 6, 2010


I don't know exactly what it is.

Maybe it's the time of year. Maybe the hustle and bustle of Christmas, the smiling, hopeful, children anxiously awaiting Santa, the many family activities and traditions all around me... maybe that's it.

Or maybe it's the 4 and a half year mark. I remember hearing in grad school that the critical language development is almost over by the time a child reaches the age of 5, and that if a child hasn't developed some form of communication or language by then, that the chances of language acquisition in the future are very small.

Maybe it's the astoundingly astonishing skills I see my 2 year old perform on a daily basis that I am so incredible grateful for, but that are also a constant reminder of what "normal" is and what my precious older daughter may never be able to do.

Maybe it's the wonder, fear, hope, and almost agonizing and overwhelming feelings I have when I worry about the future of my adorable 3 month old baby girl. As I fall more and more in love with her, I can't help but wonder if she too will one day drift away. Barely looking at me, not noticing that I am even in the room, being painfully silent and indifferent, and completely unaware of own actions and her impact on the world around her.

Maybe it's the stories I read as I do hours of "Research" on Autism treatments, testimonials, therapies, and so on. Stories where children "finally" learn to talk and connect with their parents, some even learning to say "I love you." Maybe just maybe it's too painful to read when my child doesn't say a word. Not a single fucking word. Maybe I'm too selfish to read these stories without feeling even more sad and alone when all I am really looking for is some hope. Some glimpse that one day this will maybe just maybe get easier. Maybe I know that it won't and that scares me to death.

Maybe it's the hormones. The euphoria I felt right after having sweet Presley is fading I guess... And there certainly has to be some chemical/brain component to explain this rut.

Whatever it is, you can obviously see I am struggling.

Maybe I shouldn't be writing this post... but maybe some of you reading it have been here before... and maybe it will help you in some way not to feel so alone.

Don't freak out... I'm not on the brink or anything, just having a hard day.

I have a hard time seeing the "end" of all this, maybe because there is no "end" to this particular crisis.

I know some people certainly have it worse. Things could always get or be worse.

I also know that I have PLENTY to be grateful for. And I am. But I am also entitled to be a little pissed every now and then. To be real and raw and up front about how unfair life can be. About mastocytosis. About Autism, and about missing my daughter who used to light up a room with her smile.

So maybe I should spend my time counting my blessings rather than my hardships.

Like my loving, supportive, helpful husband and extended family.

Like my fiesty, healthy, most of the time happy toddler and smiling, gurgling, adorable baby girl.

Like my health.... a huge one...even though I would happily trade my life if it meant hers could be healthy.

Like my beautiful home.

Like my supportive friends.

Like the times when Avery hugs me.

Like the times when she smiles in pride when we praise her like crazy for occasionally going potty on the toilet and not her diaper.

Like when she catches my eye, even for a split second before looking away.

Like her laughter.... her spirit, her smile. Her generally happy, albeit disconnected, disposition.

And my precious life so far that has shaped me into someone who maybe, just maybe can come through this stronger and better. God I hope so.

I really can see the good despite the bad.... but I must say that I had no idea how hard this would continue to be. And she is only 4. geesh.

Maybe our story can be a wake up call to someone else. Maybe it will help someone like me not feel so helpless, guilty, sad and isolated. Maybe the good is right around the corner, and we just have to keep plugging along to reach it. Or maybe it's staring me right in the face and I just have to keep looking to find it.

Lot's of "maybes."

A few certainties, or "things I know for sure:"

I certainly need to look beyond language. I certainly do and can continue to find ways to connect with and love my daughter, that extend beyond words and gestures.

I certainly can see how her life and disability create balance and beauty by the lives she touches and the hearts she manages to open.

I certainly will find a way to give her life purpose and meaning.

I will certainly have hard days, uphill struggles, but I will also have amazing days, and will be able to find hope and possibility in the tiniest of successes.

I certainly know more about love, joy, courage, hope and heartache than I ever understood before.

I am certainly better because of Avery. And because of her precious sisters, who I certainly believe will also one day benefit tremendously by the way of compassion, tenderness, and unconditional love.

I certainly feel better after writing this post... so maybe it wasn't such a bad idea after all.