First of all, this is a far cry from a real blog. I post, at best, about every few months. I started this blog in 2012 shortly after Abby had been diagnosed with 20p13 chromosome deletion. There wasn't enough time to properly respond to all of our family and friends about test results, seizures, progress and appointments, so I started posting here to keep them updated. And, needless to say, I had a lot of "stuff" to think through as we started a journey that we didn't know we would be taking. Writing heals, inspires and helps me cherish the small and big moments. And helps me to understand and own what I'm feeling. The good, the bad and the ugly.
Life threw us a curve ball in August of 2012. Life got harder. Life got brighter, darker, happier, sadder, scarier and more precious. "Today" took on a deeper meaning. Learning that we had a daughter with special needs was a blow, a surprise, and broke my heart in a million pieces. But now, one and a half years later, the raw hurt has slowly turned to genuine gratitude. Getting to grow with our sweet Abby has been a pure joy. Her sense of humor, her desire to move and be a part of the action, her love of people, and her incredible gift of cuddling. We are so ridiculously blessed.
My "About This Blog" page when I started in the fall of 2012…
It's only been about 3 months since my suspicions were confirmed, so I almost feel unworthy of putting my feelings on 'paper'. Like it's all too new for me to have real perspective. But I want to remember this entire journey. I don't know if my one year old with a genetic disorder and epilepsy will ever live independently, have a boyfriend or when she'll learn to crawl. And that scares the hell out of me sometimes. But I can't see the future for my perfectly healthy, happy two year old either. Or my husband's, or mine, for that matter. It's out of my control. And I find comfort in that...most of the time. It's a hard future to imagine because it's different and uncertain. But even though the vision I had for my daughter and for our family is changing, nothing has been taken away from me. She is a gift. A bright source of joy to everyone that meets her. I love that girl through to my core. And I'll focus on today.
Today is all we have. Simple and used to be somewhat empty words, but they're gaining weight. Today. Another day that God allows me to wake up and live the life He's blessed me with. Today. An ongoing effort to focus on what the day holds rather than what the future may or may not. Today. To allow myself to be who I am today. To let myself have imperfect days without losing sight of the person I'd like to become. Today. To accept a new normal and to allow Abby (and everyone I love) to be who she is meant to be today. Not who I thought she would be. Letting her happy energy and progressions of today replace focusing on the unknowns of her future. And to find joy in the not so good days too. Comfort and gratitude, knowing that God's got our back.
I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it.
Groucho Marx
"For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope."
Jeremiah 29:11
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