Avery Grace

Avery Grace

Monday, January 11, 2010


How we measure success depends largely on our own upbringing, our own place in various sociological races, our temperment, our personal outlook, and so on. For most of my life, I have thrived in a world of competition, stayed the course, been rewarded for hard work, years of study, and perseverance. As my Dad would say, most of my life had been pretty "charmed." He doesn't say that much anymore, but I would venture to bet that he knows that in many ways, it still is.

So, from year to year, I would look back and be proud of various accomplishments, and look forward to the year ahead with eager dreams. Always knowing without a doubt, that if I worked hard enough, surely I would reach my goals... no matter how lofty. Call it arrogance. Call it blind naivety, immaturity, whatever... but it was a nice place to be. A place where no matter how difficult the obstacle... success was sure to be found.

Though I don't live in that place anymore, I do reside in a much more real, raw, and bittersweet location. Maybe motherhood in and of itself would have paved the way, but the real vehicle for the transformation has been having a child with a debilitating disease and a significant disability. It has changed the way I live, the way I see, and the way I perceive almost everything. It has colored every aspect of my life, and every single day I am reminded of how incredibly hard, yet lovely, life is when you have a child who is challenged in almost every way.

The last few years have brought me wisdom beyond that which I ever imagined, strength I never dreamed I could have found, and love that sees beyond words, gestures, and literal meaning. It wasn't my "plan," but it has become my purpose. I have lost my competitive edge, and certainly don't sweat the small stuff. But I am happier for it, and certainly more evolved.

So now, as we start a new year fresh... I am learning to let go of the hopes of years past that fell short. The goals yet to be achieved and the dreams that fade a little each passing year. My life, my husband, my children, my family and my friends are what matter, and the lessons they bestow upon us when we are graced with their presence. Perfection is not the goal, and neither is "progress" or whatever that means. Moment to moment living...coping, realizing your blessings, and understanding your own personal purpose. That is my new dream. To never quit learning, evolving, and finding new, breathtaking moments within the struggle.

It's not that I have lost hope. Rather, I see hope in a different way. I will remain relentless in finding ways to help my child... but I won't let her progress or lack there of determine my happiness or shape my attitude. I can't. I won't survive this if I did. And it's not as though she hasn't improved in some ways. Every month I feel like we have broken through just a little bit more.... but it still burns that my child has yet to regain most of the skills she had as a 12 month old. She is almost 4 after all. But in between the difficult moments... there is peace. So I will keep my focus on that... and move on.

As we enter this brand new year, it is my prayer that it will be full of blessings. Progress will certainly come, and we will be grateful, but my happiness and contentment surely won't depend on it. So cheers to 2010. May it bring you love. May it bring you joy. May it bring you truth... and best of all, may it bring you peace.

Our 2009 Holiday Letter

Peace. It does not mean to be in a place with no noise, trouble or hard work. It means to be in the midst of all of those things, and still be calm in your heart.

I choose to think of it as another year wiser, or another year stronger rather than just another year older. Thankfully, this year, we are also another year calmer. More at peace, and more open to what life has enabled us to behold. Ours is a life that in many ways I wouldn’t wish on anyone, but it is also a life I cherish, and wouldn’t trade with the luckiest of families. Lot’s of people face illness, disability, financial woes, emotional hardships, lost dreams and difficult hours. We are learning to face our trouble with peace... and with a new perspective given to us by two very special little girls. One whose life will be harder than most, who has yet to find her sweet voice, and who fights illness and disability every day of her life with a smile on her face and a longing to hold hands and give hugs. The other whose voice adds a new beat to our melody, and whose spunky, feisty and fun personality brings us joy beyond measure.

It has been a year of mountains and valleys. A year of arduous realizations, and a year of awakening to new possibilities. We can say with confidence that Kaylin is healthy and neurotypical. She speaks in sentences and can relate to others beautifully. She can run and dance and laugh at jokes. It seems miraculous to us. We also understand now better than ever how mastocytosis and autism have impaired Avery’s brain development. But Avery will not be defined by her disability. And her presence can be felt in the hearts of many, as her story of grace and inspiration ricochet throughout our community. She is a constant source of rhapsody and joy, and has enabled many to see beyond language to find unconditional love through simple, pure human connection.

It has also been a year of gratitude. Our extended family and friends continue to astound us with their support and encouragement, and we are blessed to be able to be the parents we need to be to our children because of their benefit and guidance. Avery spends 25 hours a week in school and 15 extra hours a week in therapy... and it is because of the compassion of others that she has made progress at her own pace... and in ways we may never have been able to provide.

And finally, we are at peace. Though we may never “get over” some of the hardships we are blessed to endure, we can also see the beauty only found within the element of adversity... and we are better because of it.

We wish you all a magical holiday season and an abundant 2010. May you all find happiness within, and live in peace as you travel your journey.