You never know how a little thing will change your life. I thought I would do this little blog challenge and it would sit, unread, in the vastness of cyberspace. I never imagined so many people would read it, or that they would call and send messages to say they looked forward to reading it every day. Even more surprising, I never imagined how much I needed to do it, that it would show me how far we've come and that it would allow me to admit we still have a ways to go in some areas.
There has been something so perfectly cyclical about getting to do it one year after Lincoln was born. Last October, everything about Down syndrome was new and terrifying. Every aspect of our lives seemed to have been thrown up in the air, and we had no way of knowing where it would land. I remember registering for classes last October just days after Linc came home from the NICU, wondering how I could ever re-enter academia after all that had happened. I was surviving entirely on faith. This year, students call me with registration questions, and I get to reassure them.
I forget how recently I was on the other side of the desk, so to speak. But, a few days ago, I got an email from someone in an American Studies class who had lost his notes. He accidentally sent out a mass email to everyone in last semester's class instead of this semester's class. He quickly realized his mistake and sent an apology, but the damage was done: he had reminded me how little removed I am from the days of working for grades and living on faith.
This month of writing has given me the chance to stop, look back, and say: we did it! We survived the first year of being the parents of a child with special needs, survived Nico's terrible two's, survived getting me through school and out in the professional world. We aren't just coping; we are thriving.
I wish I could share all of these thoughts with the frightened woman who lay in St. David's hospital last October crying into her hands. I wish I could stand over her shoulder as she sat in the NICU in a wheelchair fumbling with the cords that bound her newborn son to chirping machines. I wish I could lay my hand on her forehead when she woke, feverish, in her own bed with the sick realization that, while her son was across town under the care of some night shift nurse, she had slept the night through.
I struggle with the advocacy role that comes with being the mother of a child with Down syndrome. I never advocated for people with special needs before he came along, and if we all only advocate for whatever affects us, why should anyone care what everyone else is standing up for? And then I think about the woman I was last October, and I wish there had been someone standing up and saying these things, someone who maybe didn't feel comfortable being an advocate but did it anyway, just in case someone else needed to hear it.
Thank you to all of you who spent the month with us. I hope that reading our take on living with Down syndrome has eased some of your fears about how we are coping and has opened the door to even more honesty about the experience. By grandparent demand, we will try to keep up regular (maybe weekly?) updates, but we will include more about the whole family and not focus so much on the DS.
Yet again, we see that those who truly love and support us have gathered around us as we process life with DS. This October, we are different people in many ways. We have new priorities and a new respect for everyone who has supported us so passionately in the past year. You guys help remind us that we can never feel sorry for ourselves because we have what everyone wants: love, joy, laughter, and something that came along and made us pay attention to it all. So, thanks for reading, and for being there. We love you!
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