Dear Savannah,
Today is February 1, 2014. This day has a history for us, not always the news I wanted to hear or was necessarily expecting, but we have always been able to cope with February 1. In 2011, I received news that one of my very best friends, Destiny, had lost her husband Chris to his battle with cancer. Chris was a really great guy and a long time friend of mine. I was very sad. I couldn't imagine how Destiny would cope raising two children alone. You see, they were high school sweethearts. They loved each other for half of their lives. Not to mention, Destiny had lost both her mom and dad a few years prior. I wondered how one amazing sweet girl could endure so much pain. I'll tell you today, she is happy and positive, a truly inspiring woman.
Daddy and I went in for a special doctor appointment, because at that time, you were still growing in my belly. We had scheduled an amniocentesis but declined to follow through. They wanted to do a microarray analysis of your chromosomes and well, we already had one procedure and I really didn't feel the need to risk anything with another. You see, Daddy and I knew we would love you and care for you no matter what any doctors would tell us about your chromosomal makeup. I still had my fears of the unknown but I walked away from this procedure.
On February 1, 2012, you had just turned eight months and I was very concerned about your vision. You never really looked at mommy. Sometimes I felt that you were looking at me, other times I felt like you were looking through me. However, you loved to stare at the lights and would often look up at the mirror while you were in your snuggly bunny swing. I knew you had some vision. I scheduled an appointment with a vision specialist at Children's Hospital and that appointment happened to be on February 1. They ran vision tests I never knew existed starting by looking at stripes and showing you light up toys. Then we moved you into another room where the used a sticky paste to stick electrodes to your head in five different places, maybe seven, as you sat on my lap with the lights off and a screen in front of you. The test is called a visual evoked potential, or VEP. They were measuring the electrical activity of certain areas of your brain in response to sensory input. It was a very long appointment, two hours long. Daddy came to the appointment too. I needed him because that day, you were diagnosed with Cortical Visual Impairment. We were told you were legally blind and my heart broke in a million pieces. They also told us that you would need to wear prescription glasses and at the time, this made me sad too. I had never realized how adorable glasses would look on you.
(The photos are from your first day with glasses. Little did we know at the time, the frames were too big.)
I always knew your vision was not typical, however, I always thought it was because you have hydrocephalus. You have the most gorgeous eyes and lashes. An outer rim of blue, with beautiful hazel green. Your left eye also has a little brown speckle located at 7 o'clock. Your lashes, thick and long that make almost everyone envious. That day, February 1, 2012, I questioned so many things. How could this beautiful little girl, who already has one health condition, have another? How could your beautiful eyes not work like mine? How will you learn? Will you be made fun of? How hard will the road ahead be? The two things that hurt the most- Will you ever know what I look like? More important, will you ever know how physically beautiful you are? You my love, are learning to explore your world and you are the most beautiful girl in the whole wide world and I am so thankful for you.
As time has passed these last few years, I couldn't be more proud to call you my daughter. You have come a long way and your vision has improved significantly. Although your vision is not typical, you do watch me move around the room, you love to look at the t.v. and your Ipad. You love toys that light up, but you still prefer music to light, especially a xylophone. Occasionally, you "peek" at me too and this makes me feel wonderful. Your daddy and I are so proud of you. You are an amazing little girl, Savannah Mae.
As far as February 1, 2013. I have no recollection of the day. Today, February 1, 2014, we have electrical issues that went from minor to major. Such a unwanted problem, but minor in the grand scheme of things. We had a great day together, just hanging out. I love you sweat pea.
Love, Mommy
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