Today was the first time I have ventured out with both boys by myself. I went to my friend Beth's house to see her and her gorgeous girls. Beth and I met years ago when we were both serving at Joe's Crab Shack. Beth was my trainer. She is an awesome woman and I am proud to be her friend.
Everyone has been writing such amazing things to me about my blogs both on Facebook and also on my page on the Family network on the Upside of Downs website. I always post the blogs I write here on there as well because who better to relate to what I am feeling than families that are experiencing the same things I do.
I am flattered by the kindness and compliments I have gotten. People have been so nice and have told me things like I'm going to change lives with my writing and that I am an inspiration. Those things mean a lot to me but I truly believe that the people who are writing them are a little misguided.
I am just a simple 29 year old mother. I am nobody special- well I hope that's not entirely true where my family is concerned. The point is- if ya'll only knew how wrong you are. I didn't graduate from college. I don't have a job that makes a difference in the world. Before I delivered my guys I was serving at a 16 table Mexican restaurant and doing Merchandising for Kohl's. I make minimum wage and can't afford to donate much to charity. I think of attending church but rarely make it that far. I am opinionated and lately I have been pretty crabby. I keep my house fairly neat but it's never spotless. I am lucky to shower everyday. I read for fun- authors like Nicholas Sparks and Stephen King. I can't remember a word of any true "classic" literature I have read. I have big dreams but lack much ambition for the most part. I hate that I am carrying around WAAAYY too much baby weight and I watch too much TV. My point is- I am NOBODY special.
I have been told that the way I am with my boys is amazing. While we were in the hospital and I was visiting the boys in the special care nursery late one night, one of the nurses told me that I make her so happy that she cries when she thinks of how great I am with the boys. She asked if I'd be willing to share my story with other parents. I said yes but inside my head I couldn't help but think that I was the wrong person for the job.
I love my sons. Unconditionally. But as you know from the letter I wrote to them I had doubts and pain and fear. I am no better than anyone else. In fact, I feel weak sometimes when I think of the fact that it is unlikely that my boys will ever father children and I cry. I cry for the life that I wanted for them and the hopes I had while I was imagining my sons as star quarterbacks or awesome pitchers. I dreamed of them marrying and having children for me to spoil one day. Even before they were born I had their lives planned out. And now, in the wee hours of the morning while I am holding each of my boys in turn- filling their bellies with warm formula (formula!?!see I don't even breast feed!!!) I look at their sweet angel faces and rather than feeling inspirational or special I simply feel- small. I feel like THEY are the special ones. The miracle babies. MY angels.
I read that the odds of having twins who both have DS is 1 in a million births. That doesn't make me feel special. It makes me think why are WE the family that got the 1's in the million? Matthew and I are normal, everyday people. We have nothing over the next guy. Now, don't misunderstand- I am not bemoaning our fate. Not at all. On the contrary- every moment I am near my sons is a moment when I feel truly and profoundly blessed. There are so many things that are SO much worse! I was reading about Duchenne Muscular Dystrophy.This is a form of MD where the boys- who are most often affected- lose the ability to walk in adolescence. They typically die in their teens or in early adulthood. My GOD! Every fiber of my being aches for those parents. I am ill equipped to deal with such tragedy. I couldn't bear to see my sons suffer and eventually die. I hurt for those families. My sons have Down Syndrome. Big. Deal.
I mentioned my friend Beth in the beginning of this long winded mess. She is a hero to me. Her daughter Casey died of cancer when she was very young. I looked at Beth today while we were sitting on the couch at her house and I told her I don't know how she did it. She survived a tragedy I cannot fathom. She remains strong in her faith. She loves her two other children in such a BIG way.
She is the special one.
She inspires me.
She changes lives. She changed me in a way.
And I'd be willing to bet she'd feel the same way I do about those statements- like she is just a normal mother.