Monday, May 30, 2011

winds of change

Sometimes you are sailing high, feeling the wind on your skin and sun in your eyes and life is perfect. Sometimes you feel like nothing in the world can stop those sails from moving, waving and gaining momentum. Then sometimes, days like today, it all stops. No particular one reason, no major trauma, just life, halting you, forcing you to readjust the straps on your life jacket and take a step back and breathe.

I hate these days. I wish they didn't happen. I wish there weren't so many of them, I wish that the wind would just keep pushing me forward on the amazing journey it has already taken me. But, alas, it has to happen, you have to grow, stretch and reach for more and to do so, you have to break a little, bleed a little, hurt a lot.

I am good with Down Syndrome, we have made nice. I have found the joy in my baby who feels like a little piece of heaven snuggled in my arms. I am more than good, I love him, adore him and wish for nothing more than to be his mama and call him my son. I wish the world saw that and knew that same love. I wish that everyone treated me, him and our family the same. But, in all honesty...they don't. There is always that little something that stops someone from treating him the same and over this holiday weekend that was evident. It can be simple things like complimenting him over and over and over for well...nothing. See, he doesn't do much. He doesn't smile all that much, doesn't play with toys or react when spoken to. He just sits and gazes into your eyes. I like to think he knows exactly what I am feeling and saying and he just isn't all that interested to "perform" like a monkey to all the people who are buying tickets at the circus. But, deep down I know that he is and always will be different. So hard to quantify and express words with how that is to live and be part of our family, but well, sometimes, I just need to cry. Sometimes, I just need to let loose and let it fly.

I feel like everyone I know is pregnant and we are talking endlessly about babies and pregnancy and the pains of fresh in my mind. How jealous I am of their experience and their soon to be typical, perfect babies arrivals. SO jealous that I can barely breathe at times, the tightness overwhelms my throat and I continue to simply smile and congratulate and continue with the typical conversation, baby names, logistics of nurseries and supplies that are required, oh and of course birth stories that always follow with any presence of a preggo in the room. Ah yes, the birth of a baby, the most magical day of a mama's life. Nothing more amazing, precious and in our case heart wrenching. So much of this has healed, found a place of peace and really no more bandaids to be peeled off. But, still in the deep dark crevice it lies, waiting to stop my sails in their tracks and plant me on a dirt road, laden with broken dreams and sleepless nights. A landscape of my family has changed forever.

I constantly tell myself, it doesn't have to change much. Add a couple of appointments, so I carry him a little longer, he snuggles more, tantrums are averted a little longer, no big deal, heck, a bonus in some ways. Yet, when I am standing on that dirt road, it all comes crashing down and the winds are picking up again, but I don't have a boat and the dust is keeping me from breathing and they aren't so inviting anymore. Winds of change don't come in the proverbial warm, sunshine way, they come in the harsh, dusty, alone way too.

It's OK though, because with struggle comes strength if you let it and if you choose to be more than a diagnosis, a label, a one dimensional character, you can walk that road and find that river and get on that boat and use those strong winds and have them bring you to crystal blue waters again. Our life isn't always beautiful, isn't always picture perfect, but it is ours and we have now three healthy, beautiful, sleeping babies, they are perfect.