Lately I've been feeling like I need to start reaching out more to the Down syndrome community. More specifically, I feel like I need to find another new mom, like myself, going through what I'm going through. I've met some wonderful parents of teenagers and adults with Down syndrome and I've met a few new parents of babies with D.S.....but none that I've really clicked with. Because having babies with DS gives us something in common, but it doesn't mean we're gonna want to be friends.
I have this wonderful group of mothers that I've become very close with in the last 8 months. We have supported each other through all the scary, daunting and exciting tasks of caring for our newborns. Most of the babies in the group are now crawling, finger feeding and understanding the difference between right and wrong. Though all these mothers have typical babies, they have nurtured and supported me and accepted Miles wholeheartedly and I cherish the little village we've created. But at the same time, it would be amazing to find a group of women like these who like me, have babies with Down syndrome. Where we can discuss our specific challenges and fears freely, give each other ideas and recommendations.
So far, the people and groups that I've come across want to talk about the Regional Centers and the budget cuts and how terrible the system is. They are angry about the unfairness of the system and the lack of help and how hard they have to fight to get what their children deserve. All of this is true and based on real experiences. I have already come across my own hardships dealing with my Regional Center and trying to get Miles the appropriate therapy paid for by the state. I've already had to fight for him and I know there will be plenty more fights where that came from. And I ain't no Lillypad. I am a Lioness and I will get my son what he deserves. But that's not what I want to talk about when I meet new parents.
I don't want to dwell on the negative and turn my son into a diagnosis. He is not a "Down's kid", as many people might refer to him. He is a baby. A human being and he's got a very unique personality. And that's what I want to focus on. I want to focus on who he is and how I continue discovering and nurturing who he is.
Sometimes I feel like I live in this little bubble world because I have surrounded myself with wonderful people who love Miles no matter what. And I forget that he has Down syndrome. I don't see it because I see him. And that is who I want to see. But I also feel like he would really benefit from having a little friend who is like him, who he could maybe connect with on a different level. And for me, it would be so beneficial to have a mom friend who is experiencing the same thing I am at this moment. There are several women I can call who have gone through this for the last 13, 16 and 20 years who can give me some very wise advice. But they are in a different place. Their children are no longer babies. Their pain and fears have evolved and changed through the years. And that informs who they are now, as time will inform me.
As we get closer and closer to Miles' first birthday all these feelings keep coming up. Fears and doubts about his future, our future. I keep reminding myself to experience these moments and enjoy them. Enjoy the happy little baby I have because soon enough he will be an adult and our lives will be so different. Yet it will all be okay for I am growing at the same rate in which Miles is growing and my mind, with all its questions and doubts, will have caught up to my heart and soul, who know everything will be all right.
One step at a time, right?
My next step? Find some cool moms who have babies with Down syndrome. Maybe start my own group. Who knows....Maybe.....