Avery Grace

Avery Grace

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.


the family of mannchester estate said...

This post was beautiful. Although my walk with special needs is much different, I have these times too. And it seems whenever I write about them I get Bible verses, or a nice little saying from someone, and it makes me want to scream.
I love your honesty. I appreciate that you are being raw and real. And I thank you for being willing to share the hard things that go along with being the mama of a kiddo with special needs.


Trish said...

Google "SHINE" the song from the Signing Times series. I think you can find it on their site. I have an autistic son who didnt speak till he was over 3. Verbal or non-verbal these kids are amazing, you just gotta find out what gets through to them. Praying for her and her growth.

Shannon said...

Thank you Jenny. It takes a tremendously brave person to share so openly. I think we all learn more from one another when we are honest about what we are experiencing; the good, the bad and the ugly. To open yourself up to others' praise and criticism knowing that if you can help even one other person feel less alone it was worth it -- that is the definition of selflessness to me. I am honored to be witness to your journey. It is a tremendously important one. Keep being such a good mom and loving those kids,they are blessed to have you and Bryan both.