Monday, October 3, 2011

Think a little...

So, I have pondered posting and releasing the few things I have put down privately, and just putting it out there. And well, I decided now is the time. So bare with me.

October is Down Syndrome awareness month and I let me first say, "despise" this whole, I am an advocate, lecturer, educator, blah blah blah, you know what...I am not. I am a mom, to three children and one has something different than the others. They all have something a little different really. One is scared of trying new things and yet loves spicy foods. One snuggles and hugs and doesn't stop talking unless someone other than her immediate family are around, then she clams up. One has down syndrome. I struggle with writing this because you need to know me to truly understand all of this and well, that is hard, to get to truly know me in a post, a blog, or really even in this past year. This is deep stuff. This journey isn't simple or can't be a cliche. It is real life and with that it isn't always pretty.

When I had Nolan and in those first few weeks, which is documented in earlier posts. I despised being different. So scared of being defined as "the famly with the down syndrome kid". I thought, that is what we are now. That is who I am now, the "poor" mom that this happened to. And the questions are all the same. "Did you know before he was born?" "Oh you must be over 35?" "Did he have a heart issue?" And the answer is NO to all of those. Not that any of that really matters. Because truth be told. I didn't know with any of our children. I didn't really think about it. I always said no to any prenatal testing, why, well, to be honest because that stuff doesn't happen to me, right? But, also in my heart, I knew it didn't matter. I would love my child regardless of their struggles from birth or throughout their life. Because isn't that the point?

You don't know when or how or if your children are going to struggle. You don't know if one of them is going to make it to see another day. It is a reality I learned at a young age, I was three when my 8 year old brother died suddenly. It changes you, the value you put on life, and how quickly it all changes.

So, when Nolan was born I am not proud of many of the things that went through my head. The thoughts I had of OMG what is the point of his life, can he learn to go potty in the potty? Ridiculous I know! But these are the things you think of when life slams you hard. I began questioning and reading so many things. And then one day I found an article in the NY TIMES of all places. It referenced a blog of a woman who was putting value in her son's life with down syndrome and stating that it was magic and her daughter was lucky to have him as her brother, it was beautiful. Then it took a horribly wrong turn. I read the comments. And they hurt. They said things like, "I hope your kid likes your retard when he's old and a burden." Also, "I hope your kid thinks he is cool when she can't do anything with her life because she has to take care of him." Now I know these are ignorant cruel comments, but in truth, I thought...that is what we face. This is what people really think and it is about my precious baby. The reality is, when 95% of people are faced with whether or not they want to raise my Nolan, they say NO and abort. That is a pretty disturbing truth as a mother. That if you polled 95/100 people they would say your son's life isn't worth living. It hurts you at a level words can't describe. And then fear over takes you. Because it isn't just me living with this pain, it is our other children as well and the reality they will have to justify their brother's life. It is Nolan's pain in people looking at him as less than. So, here I am. As any mother would do for any of our children. Here to say, my son is SO WORTH IT. Let me show you why...

Nolan may not go to Harvard, but Ted Kaczynski did and he planted bombs, had no relationships with others and well coined the phrase "unabomber".

Nolan may never lead a country, but Hitler did and killed millions and himself.

Nolan may never run a company, but Madoff did and he ruined thousands of peoples lives and his son killed himself.

Nolan may never have children or get married, but Warren Jeffs married and raped his children and said it was for God.

You see, all of these things we measure people by, these superficial "status" symbols in life. We think and dream of our kids and hope that they achieve great success. But, I am so proud to say, before I had Nolan, I only had one dream for my children and that was to be happy, good people. And you know what, that is exactly who my boy will be. And how in the world is that not enough?


  1. Oh Grace! When you let your heart open it really hits the moon! Your journey is yours and I thank you for sharing some of your heart with us. You are one amazing Mama. Love you, Linda

  2. You inspire me to be a better person. I admire everything about you and I hope you know what a gift you and Nolan have in each other. I'm thankful for our friendship and I'm thankful for my time with you and your amazing family. Thank you for sharing so much of yourself.

  3. Grace,

    Dont know it you remember, but I have a cousin with downs. I would say I feel for you, but it isn't needed. Nolan is going to be the most difficult of your children, but will also be the happiest. He couldn't have asked for better parents.
    God never gives anyone anything they can't handle!

  4. OMG can I just say that I totally love this post. You took the words right out of my heart. Thank you so much for these words that I so needed to hear today.

    gratefully w/ love,
    a fellow mom to a little boy with a little something extra;)


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