Fly My Angel!

Mommy is so proud of you. You have moved mountains in your short three years here on Earth. You've brought me happines, joy and fear. What a diverse little creature you are. Just when I think I have you figured out ... I don't.

I remember the day you were born. I was devastated because they told me you had Down syndrome, but everyone told me it would be okay. All of my visions of our perfect little family were gone. All my plans, out the window. Life was different now and I was lost. I was lucky though to have the knowledge I needed to take care of you. It seemed as though all of my adult life I was preparing to be your mother. Four years of college, obtaining a degree in elementary education. Then five years of teaching in the classroom. I wasn't teaching just any kids though, I primarily taught kids who spoke languages other than English. They had delays in their English language. Who would have guessed I would soon need to spend equal time teaching my own child this difficult language? It was shortly after your birth that I realized I was facing my most difficult job assignment ever. Rearing my own child with a disability.

Research tells us that childrens' brains are developing at 'super' speed the first three years of their lives. The neurons in their brains are connecting at rate so fast it's impossible to fathom. They are sponges, soaking in and learning with every spoken word, with every real life experience. I knew that I had three years to teach you as much as I possibly could, because after those first three years, your little mind would continue to grow, but would never again have the capacity to accept as much input as it did during those first years of life. Call me an obsessive mother, I don't mind. What kind of a mother would I have been had I known this about my child but neglected to do everything I could to help her already disadvantaged little mind?

So once I got over myself and got my butt out of bed, I went right to work. I was determined to be the best mother for you, after all that's why God gave you to me right? The first months of your life I lived and breathed Down syndrome. We read books, attended meetings and conferences, researched the internet, anything to bring us closer to understanding little old you! I knew the only way to help you become your very best was for me to learn all I could about your disability. So I did. I spent hours reading and talking to other parents, therapists and teachers. You were receiving early intervention services through our local infant toddler program as well as attending private therapy sessions for speech, physical therapy and occupational therapy ... all before your first birthday! I actually got quite comfortable with your diagnosis. I knew what I was doing and we had a plan. You were well on your way to being your best.

Then you got cancer. My precious one year old daughter, was sick. Minor setback, yes. Everything I had worked so hard to learn about and figure out was suddenly miniscule to the challenges that were ahead. I then began living and breathing cancer. Leukemia. All day everyday, it was all I could think about, read about and learn about. Once again that drive set in and I was determined to make informed decisions, to get you the very best care providing you with the cure you deserved. We spent so much time in the hospital, receiving chemo, recovering from chemo, waiting for counts, it was impossible to focus on anything but the illness. We managed therapy sessions here and there, but mostly we spent our days and nights just being together. It was almost like I had forgotten about the Down syndrome for a while. I excused myself from the pressures of overseeing every detail regarding every therapy and intervention. You were just you for nine months, but you were trapped within the confines of a hospital. Exposed to many new people and activities to stimulate your little mind, but it still wasn't the same.

Finally, at two and a half, you finished your treatment. You survived cancer, you were done! But the reminders were still there, the worry and fear remained for months it seems. Until one day, the doctors were able to prove to me that you really were cured. You were healthy and there was no way you were going to become sick again. It is time to focus on Chelsea again, my daughter, but I'd almost forgotten about stimulating that little brain.

So how do we end up here? I feel like in your three years I've aged 30. Some days I don't know what direction I need to be going in, but I try not to worry about it. The panic only ages me more. If there is one lesson you have taught me since the day you were born, it is not to plan anything. Every time I plan for our future, you come rolling in with new plans. I think you've got this world figured out better than I do. So I am handing over the reins to you my dear, please, take the lead. You are three years old, ready for your own independence. You will start preschool in a few days and I know this is where you will spread your wings. Fly my angel, fly!

Love, Mommy