Friday, September 18, 2009
Now That's Better ....
Thank you to everyone who weighed in with suggestions on how to ease Zoey into the transition of a tub.That is one of the things I just love about blogging.You all are like family,eager to outstretch your hearts and give advice and guidance.So thank you all,for that.Here is the new tubby Mark brought home for his little princess last night.We sat her in it clothed and I spent time just singing and playing with her.This morning we gave it a maiden voyage and I would call it a complete success.In fact ... she was ticked off when I got her out.That's my girl.. adapts so effortlessly.The little video's shows a couple of Zoey's new tricks.The one shows two things:her nodding and her new sign.Her new sign is .. Daddy.Which is very appropriate because she so loves her Daddy.Today she did two really cool things using that sign too.First, I was talking to Mark on the phone and I put it to her ear.Mark started talking to her and she,unsolicited,signed daddy.The second thing was again about daddy,I was on the phone again,with Zoey's vision therapist Christi and I was repeating the daddy on the phone story and she heard me say daddy and signed daddy again, unprompted.She really amazes me.We know, because of her stroke especially,that she has some serious motor planning issues but just when I question the connections she is making,she does the things she does today.I really should learn to never, ever question this child.The other video is her dancing.We couldn't quite get her going as fast as she usually does but you get the idea.
I also wanted to go ahead and share with you Caitlin's entry in the book Gifts 2.She looked back in some correspondences she received from the publisher and they had in fact given her permission to publicize it elsewhere,which I thought was so generous of them, so I really want to encourage everyone to go purchase a copy for yourself.It is filled with amazing stories and inspiring children,some of which you will most likely recognize if you do this blogging thing.So go here and purchase your very own copy of Gifts 2: How People with Down Syndrome Enrich the World (Woodbine House, 2009)
Through Rose-Colored Glasses
By Caitlin Needham
MY MOTHER IS as blind as a bat. She literally could not function without her contacts or her glasses. I’ve seen some pictures of her in her childhood, and let me tell you, she wore some nice, thick glasses. My dad’s eyes are pretty much the same. He has recently bought a pair of reading glasses (from what I understand, this is some rite of passage in middle to late adulthood). My sister Jessica has worn glass- es since fifth grade, and she too cannot see a thing without glasses or contacts. But my sister Taylor has perfect vision. My brothers Jake and Joe, we have yet to find out.
Then there’s me.
I have 20/20 vision. Nothing medically wrong with my sight. But as of the last year and a half, I have begun “wearing” a type of glasses. I guess you could say they’re rose-colored glasses. Typically, that phrase carries a negative connotation: ignorance, denial, feigned optimism, perhaps even foolishness. But is this really so? Or is seeing the world with a soft pinkish glow actually a gift of sorts?
I would support the latter.
My littlest sister, Zoey, came into my life at a time of grayness. By gray I mean that I was going through the motions of life, skat- ing by, taking all for granted. My existence up to that point was a self-centered one that revolved around my schedule and my agenda only. My days were filled with a monotonous routine of school, an after-school job, and socializing with friends as I saw fit. There was no color. Even the warmest, sunniest days seemed dull. I found it much easier to remain apathetic in so many areas of my life, rushing around and trying to do what was best for only myself.
But everything changed the day I met Zoey. Though she made a relatively smooth entrance into the world, her tiny heart strained and pumped, trying to oxygenate her fragile body, compromised by an atrioventricular canal defect. Instead of taking her home with us, her home became the NICU at Children’s Hospital Los Angeles. Underneath a tangle of tubes and wires, her ferocious spirit battled for life, giving me a run for my money in the courage zone. As I gazed at her, she wordlessly told me, “Slow down. Stop and look around for a minute.”
So I did. And that’s when Zoey handed me a pair of glasses with rose-colored lenses.
My new glasses felt a little funny. The discomfort stemmed from somewhere deep inside myself, in a place that knew that my priorities needed to be reordered. I wanted to step outside of myself and begin to take steps toward looking forward instead of backward. I wanted to be the glass-half-full type, not someone who dwelled on setbacks, adversity, or doubt. So even though I’d never really worn glasses like these before, and I wasn’t even sure they fit correctly, I gave them a shot.
It was amazing: When I put on the glasses, everything took on color. The senseless seemed more manageable, and hope over- took discouragement. With my newfound faith and optimism, ev- erything seemed a little brighter, a little more vibrant. Sometimes doubts would surface—was I really cut out to wear these glasses? But as I persisted in a new way of seeing the world, the twinges of doubt became fewer and father between. More often than not, I felt warmth and joy shining through the usual gray of my life.
But new challenges surfaced as time passed. I struggled to bal- ance my increasingly busy schedule, and I began to worry about my future and about Zoey. Her medical setbacks seemed overwhelming and daunting. Zoey had arrived with a few unexpected tagalongs— namely, transient myleoproliferative disorder (a type of leukemia), feeding issues, and a middle cerebral artery infarction, more com- monly known as a stroke.
Each diagnosis was devastating enough on its own, but when all these issues teamed up at once, there seemed to be nothing we could do but wait and try to make sense of the senseless. Percentages and statistics intimidated my courage. The glasses seemed powerless to soften life’s harsh truths. There were times I chose to take them off. There were times I threw them across the room, there were even times I contemplated stepping on them. When Zoey developed infantile spasms, a devastating form of epilepsy, it seemed that she would never be cut a break. She seized throughout the day, fogged in an epileptic haze. But Zoey never gave up, so I didn’t either. And through rose- colored glasses, I came to see the stark contrast of all that is worth- while and meaningful and all that is void and purposeless.
How did such a little baby know about these glasses? How did she know to give them to me? The amazing thing is, Zoey has a pair herself.
She was born wearing them.
The blueprints for her glasses were located on her third 21st chromosome, and they genetically formed right into her very being. In every cell of her body she contains the secret to living a beautiful life: optimism, perseverance, and joy. Zoey is a world-class hugger and snuggler. She willingly thrusts herself into the arms of strangers. She waves to anyone and everyone who passes by. She dances and wiggles when she hears the beat of a drum. She is a professional kiss- blower, offering not one kiss, but twenty to the privileged recipient. She tolerates multiple interruptions for g-tube feedings and medica- tions a day, though she’d rather be rolling around the house to keep up with her brothers. Unlike nearly every other two-year-old, Zoey is most content sitting on the lap of her mommy or daddy, reading books, poised and ready to turn the pages. She endures endless blood draws, checkups, invasive diagnostic procedures, and toxic chemicals being pumped in her veins so that she might overcome her latest medical enemy, AML, acute myelogenous leukemia.
The day Zoey was diagnosed with leukemia, I went through a gamut of emotions. I felt despair and anger. I wished I had been diagnosed with cancer instead of my precious sister. I felt numb. I felt invincible and resolute that Zoey would overcome such a terrible dis- ease. I felt weary. I felt strong because I wanted to provide strength. Highs followed lows and vice versa. And, though I felt a little silly saying it, I was heartbroken to think of Zoey’s little head, bald from chemotherapy. I couldn’t imagine her without her auburn curls. I dismissed the thought, telling myself, “It will grow back. She can be bald for a while and have a lifetime to grow back her hair.”
When chemotherapy commenced, I prepared myself to see Zoey with a new hairdo, or lack thereof. Rounds one and two came and passed, and her curls were intact. Every time I would go to visit Zoey or see her between rounds at home, I prepared myself to see her hair thinning and disappearing, but that day never came. Now, as she completes her sixth and final round of chemo, Zoey’s hair is as long, thick, curly, and wild as ever. Between the smiles and the curls, she looks perfectly healthy. Her reddish brown waves and curls shim- mer in the sunlight. Ringlets dangle down her neck in flawless spi- rals. She is a work of art. She is a warrior in every sense of the word, pressing on and fighting the good fight without flinching. A cancer patient, a stroke survivor, an open heart surgery alumna, an epileptic who hasn’t seized in a year, a sister, a daughter, an inspiration.
Zoey’s rose-colored glasses are not a mark of her ignorance or her foolishness; they are a symbol of her ability to persevere in an unfair world. She didn’t have to buy these glasses, shop around for them, or try them on for size, they just came perfectly tailor made for her. For me, wearing glasses like Zoey’s hasn’t come so naturally, but I am learning. Down syndrome is beyond human control. But many other things are not. I have been empowered with the power to choose. I can choose an optimistic attitude. I can choose to take the time to appreciate joy amidst pain. I can choose to push on during the times when giving up seems like an easier option. I can choose to rejoice in the unimaginable promise of my life and Zoey’s life. I can choose to embrace this ephemeral existence for all it’s worth. I can choose to share my point of view with others.
And from my point of view, life is looking pretty rosy these days.