We recently purchased a colorful, 8 feet in diameter, beach umbrella for Owen. Our yard gets so hot in the summer, we wanted a shady place for him so that he can enjoy the sights, sounds and smells along with us. To make his experience even more enjoyable and beautiful, we wanted something that was bright and eye-catching. He and I have spent a good deal of peaceful afternoons lately under this rainbow umbrella.
Peace is good and finally came to me a few weeks ago. I know it will not be the last time that I take a few steps back (or down) only to once again work my way back up again. The first few weeks after Elliot's arrival were difficult. Not in that we now have two babes at home as Elliot, compared with our experience with Owen, is easy. Not because we weren't happy because, truly, we've not been this happy in almost two years. Not because we were sleep deprived as Elliot has always been a good sleeper and our experience with Owen has trained us - if we get 5-6 hours of sleep, we consider ourselves extremely lucky.
These weeks were difficult because we finally had a normal experience and it has been so easy and so good and so happy and so full of joy and we wondered, "Why couldn't we have had this with Owen?" It is different, seeing other people's babies and understanding that yours is different. But when Elliot came along, it put a very intimate magnifying lens on the experience we had with Owen. No throwing up, no constant fussing, easy to bond with, nursing so naturally. No intensive care units, no tubes, no monitors, no seizures (which had just started when Owen was three months old, Elliot's current age). Elliot now makes eye contact with us, smiles and is giggling, splashing in the tub, clasping his hands together, playing with toys, "talking." Owen smiles, but the rest of these behaviors, we may never get to see.
So we mourned the loss - again. The loss of a normal experience with Owen. The loss of certain functions he will never have. The loss of never hearing him say, "Mommy," or "Daddy," or having him reach for my hand when he needs me so that I can help guide him. It is really hard and it really, really hurts.
But you pick yourself back up, and you are stronger than you were before and once again, your perspective has changed. I am even closer to Owen than I was before Elliot was born - both Kesley and I feel this way. When Owen looks directly at Elliot and smiles, it is beautiful - in the purest sense of the word. When Elliot smiles at Owen, we know that there is now one more person in this world who will really know and love Owen. It is hard to explain the joy this brings us. And now that there are "the two brothers," I cherish my time alone with Owen more than ever.
So in honor of Owen and our peaceful times under the umbrella, I wrote a poem.
Reflections of a Rainbow in His Eyes
Do you see what I see?
I see a boy, who has seen the halls of the neonatal intensive care unit, the walls of children's hospitals, the ceiling of the surgery room...
yet I see a boy who stills knows innocence.
I see a boy who struggles to communicate with sounds and his body and the harder he tries, the harder the language is to master, the signals always reaching a roadblock...
yet I see a boy whose voice is clear and whose language I understand.
I see a boy who stiffens and arches and is tormented by the curve of his spine, the tightness of his hands and the limpness in his neck...
yet I see a boy whose body moves in water with the grace and fluidity of a dancer.
I see a boy who has a hole in his stomach, who recognizes the sound of the food pump and who cries with resistance to being fed...
yet I see a boy who eats up smiles and laughter and music and hugs.
I see a boy who cries because he is confused and frustrated and angry and he hurts...
yet I see a boy who smiles when he feels joy.
I see a boy who sees unlike most of us, in fragments and pieces and in shifting patterns...
yet I see a boy who sees rainbows and I see those reflected in his eyes.