Avery Grace

Avery Grace

Monday, May 30, 2011

The look of hope

It still amazes me how one single look can change my mood and bring excitement and joy to my heart. Everybody has noticed it. It's not just me. She is there, she really is. She is more "with us." She is LOOKING at us. And SMILING! A look. A simple little look. Those eyes sure can lift me up.

I'm not sure what it is. We are spending more time in the Hyperbaric chamber, and she is also doing The Listening Program with Bone Conduction at our beloved OT clinic... but who really knows why. I am just delighted. It may seem silly if you don't have a child like Avery, but for those of you who do, you know what I mean. It's the littlest things we hold on to, the smallest feat gives us hope and happiness beyond measure.

Do I think Avery will ever really overcome Autism? No. But it's gotta get better than this. Her progress over the past 3 years has been painstakingly slow... but she's still in there. And when she looks, and I mean REALLY LOOKS at me... I know we are never going to give up on her.

I can't imagine what it must be like. I know Avery has preferences, opinions, feelings and desires. But she can't talk. She can't tell us what hurts, what she wants, what she needs. The last few weeks, however, she has been able to communicate more than she has in a looooong time. She is leading us to things, signing a bit, and have I mentioned that she is LOOKING at us?! It's a reason to keep hoping. To keep working. To keep trying like hell to bring her back to us.

Three years ago, shortly after Avery was diagnosed, I began writing in this blog. Initially, I thought it would be excellent documentation of the amazing progress she would surely make. That we would be able to look back on previous posts and see how far she had come. Instead, it has been more about my personal journey with life, grief, perspective, and hope in the seemingly unfair circumstance of having a child with a severe disability and serious autoimmune disease. It has been quite cathartic to me, and hopefully eye opening to many of you. But all in all... even on the hard days, I know that Avery makes me better. She teaches me more than I will ever be able to teach her. Autism is the purest lesson in how to love. How to let go of expectations. How to not take anything for granted, and how to appreciate even the simplest of connections.... like a sweet glance.

We are so grateful for every look. Every smile. And every single attempt our precious girl makes to come back to us. Autism can take away so much. It makes simple outings nearly impossible, and can create heartache, frustration, and anger like you have never experienced before. But for us, it can also bring grace. And for that, we are truly blessed.

Tuesday, May 3, 2011

To Cope

Some day's it is hard to believe that I have been a mother for over 5 years now. In the last two months my sweet Avery turned 5, our precocious and gregarious red-headed firecracker turned 3, my beloved patient and amazing husband turned 40, and the baby is starting to move, babble back and forth, and really make amazing leaps towards becoming a little person with her own personality and preferences. I know it's cliche to say that time flies.... but in the world of motherhood, it really does. It scares the hell out of me sometimes. How we spend our time as mothers is never what we planned. And I know that all of the expectations and plans I had five years ago have somewhat flown out the window as I have become a mother who adores her kids, but often goes through the motions. Disability, disease, and the daily struggles have taken over and transformed me into a stronger, able, more flexible and less judgemental momma bear. And as much as they have hurt my heart and brought me to my knees in sadness, they have also inspired me to find vigor I never knew I had, and relativity to what really matters in life.

I had a lovely visit with one of my older brothers a few weeks ago who said something somewhat profound to me. He said that to live is really just coping with what life throws at us. Coping. It's a word I am all too familiar with these days. Sometimes I fear that I am "coping" a little too much... so much so that I forget to enjoy the tender, special moments. To throw out the comparisons, the can't do's, the tears and the tantrums, the fear and the disability, the sadness and the heartache, the things I know we miss out on, and the disadvantages we face.... and just be content and grateful. Maybe I waste way to much energy coping.

I know that I spend way to much time trying to deal with the baggage that comes with having a child who you adore, and who may or may not know I am even in the room. A child who spends hours crying in pain and the doctors nor I have no idea why. A child who smiles and laughs in her own world, and wanders aimlessly knocking stuff over and mouthing anything she can get her hands on from scissors to houseplants. Sometimes... no, in fact most of the time, her height is a big disadvantage. As I spend my days "coping" I am also dispensing dozens of medications and supplements, driving Avery to countless therapies and appointments, and utilizing all of my efforts to help her "get better." Trying to "heal her" has been how I cope. And some days I just want to let it all go and just let her watch 30 episodes of her beloved go diego go, and let her throw all of her food on the floor and use her diapers all day instead of taking 20 mostly unsuccessful trips to the potty where I do everything because, let's face it... we are no where near potty trained. And I have those days. And that is coping too... but probably not in a healthy way. So I will continue to find hope, another method of coping. To search for new ways to help her, and to teach her how to "cope" with her world. If that can be done.

I hope I don't get backlash for being "overly negative." I don't always just "go through the motions." Most every single day you will find me with a smile on my face, kissing on my kiddos, and making light of this crazy, chaotic life I lead. I am pretty confident that I maintain an attitude of gratitude most of the time, and that I am able to keep my perspective in check when I hear of someone with a terminal illness, or someone who has lost a loved one. I am blessed beyond measure, and I know that. We all have or WILL have something in our life that is hard, something that helps define who we really are, and something that gives us wisdom and strength we never knew we had. But day in and day out, I don't believe anyone has ANY idea how hard someone else's experience may be. I assure you, that long before I had kids but was working with children who had severe and special needs, I still had no idea how challenging parenting such a child could be. No idea. I do now. And I also know that my experience, though similar to some, is unique and different, and impossible to comprehend until you live it.

So as I move forward with today, it is my mission this month of May to find some healthy alternatives (other than my favorites which are caffeine, food, and wine) to cope. Dealing with my life is a blessing... not a chore. Opening my eyes to marvel in the miraculous development of my baby girl (instead of fearing regression), sharing a hand-holding moment with my innocent, lovely, disabled daughter... and appreciating that she loves me enough to do so (instead of being sad about all that she cannot do), and realizing the gift and wonderment of my sassy, adorable middle child's temperment and strength... (instead of the constant head butting)... those are on the agenda this week... along with a thousand other "must do's".

Life is not always fair. I would trade just about anything if I could assure a healthy, easier, functional life for Avery... but I can't, so my choice is to go with what we've been graced with, and make the absolute best of it. Some days will be really hard... and some will be amazing... but that's all just coping, and in doing so, I am hopeful that I am able to share and spread just a little bit of love and acceptance.