discovery

I have to thank you all for taking the time and reading and opening your minds to my insights of our personal journey with Down Syndrome. It is so awesome to have so many people in your life that support you as a mom, friend, daughter, it means a lot. I discovered something though, watching your comments, private emails and facebook posts come in. I discovered how uncomfortable it made me feel.

Now, those who know me know that I am not one to shy away from attention or compliments :). But, this is different. This is our child. This isn't because I am amazing, inspirational, courageous. I know it may seem that way. I may feel that way to all of you and I TRULY appreciate it. See, I can listen all day long to how great my cooking is, my decorating is, my hair is (even if none of these are true!). But, to me, this is about awareness for my son and his future. This is about what we all want for our kids. A life that others value, appreciate and acknowledge. Wouldn't that be great? To just live in a world that views our kids just as we do. Our loves, our hearts moving and walking around free in the world. Hoping with all hopes that no one crushes their dreams, stomps on their ambitions, blows out their flame.

That is the real goal in sharing our secret place, our feelings so openly and honestly. I feel like it is time to simply suggest that maybe there is a way that Nolan may hurt a little less if a few people really understood the magic that we as his parents see every day.

Think a little...

So, I have pondered posting and releasing these thoughts and decided that now is the time -bear with me.

October is Down Syndrome Awareness Month, and I need to say I 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 different. One is scared of trying new things and yet loves spicy foods. One of them snuggles, hugs, and does not stop talking unless someone other than her immediate family is around. One has Down syndrome. I struggle with writing this because you need to know me to understand all of this, and well, indeed, that is hard in a post, a blog, or even in this past year- it's deep stuff. This journey isn't simple or 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 family" with the "Down syndrome kid." I thought that this is what we are now. Also, 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 the truth is, I did not know with any of our children. I did not really think about it. I always said no to any prenatal testing; why? Well, because that stuff does not happen to me, right? But, also, in my heart, I knew it did not matter. I would love my child regardless of their struggles from birth and throughout life. Because isn't that the point?

You do not know when, how, or if your children will struggle. You don't know if one of them will 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, and the fleeting nature of life. 

So, when Nolan was born, I am not proud of many of the things that went through my head. I thought, "OMG, what is the point of his life" "Can he learn to go potty in the potty?" Ridiculous- I know! 

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 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...until 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 is old and a burden." Also, "I hope your kid thinks he is cool when she cannot do anything with her life because she has to take care of him." Now I know these are ignorant, cruel comments, but I also know that is what we face; this is what people really think and about my precious baby. 

The reality is 92% of people when faced with whether or not they want to raise a "Nolan," say NO and abort him. That is a pretty disturbing truth as a mother. If you polled 92 out of 100 people, they would not only say but take action and show that your son's life is not worth living. It hurts you at level words cannot describe, and fear overtakes you. Because I am not the only one living with this pain, it is our other children and the reality that they will have to justify their brother's life. The pain that people look at Nolan as less than. So, here I am, as any mother would do for any of her children- to say, my son is SO WORTH IT. Let me help you see why. 

Nolan may not go to Harvard, but Ted Kaczynski did, and he planted bombs, had no relationships with others, and coined the term "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 ruined thousands of people's lives, including his own family.

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 ways we measure people, these superficial "status" symbols in life, are pointless. We think and dream of our kids and hope they achieve great success but with skewed versions of the word and its meaning. I am not proud to say I, too, valued those shallow measures.

However, even before I had Nolan, I had one dream for my children: that they were brave and kind. I want and work to help my children be kind-hearted, and when they need to be brave for themselves or others, they are and know their worth. 

Ultimately, you know what Nolan will do? He will make connections, love, and laugh throughout his life. How in the world is that not enough?

champion

Nolan...what's in a name? well, in his name, everything...it means champion...boy is he ever!

You know it's funny how life works. How when in your deepest moments of loss, sadness and despair. Something happens. Something very interesting happens. All the time you are holding onto whatever it may be, maybe a man that you should have let go of years ago...maybe a job that you thought was the best thing to happen to you, maybe money that you can't seem to make enough of...whatever it may be you find yourself realizing that you are squeezing the life out of that worry. You keep holding on tight to the last fiber of that dream, hope, wish and you know what, when you finally hit the place of letting it go, you know what happens...you do. And with that comes a space, a special place now available for something new....oh the possibilities.

Well, for some reason, in my life, I forget this amazingly true phenomenon and only until after I go through the very painful, lengthy process do I go OH YEAH, this is what happens when you let go of something you are white knuckling holding onto....it is so cool, rewarding and fun!

Well, I was white knuckling a lot this last year. Holding onto a dream of a boy I had wanted. Holding onto a family I had pictured. Holding onto ANYTHING I could, maybe he'll be different, the first boy with down syndrome to be a rocket scientist...um...yep, I actually dream THAT big! Well, these last few weeks, without me even realizing it, I was depressed, really more than that, angry and disappointed in myself that I wasn't at a better place and "holding" it together better a year into this journey. But, I had to put it in writing, my disappointment in my lack of strength during this time. And let.it.go. And, I did, I said, yep, I am not where I want to be....so what.

ahhhh....then it happened. I was. I am. right.where.I.want.to.be.

Nolan is amazing. So amazing. He gave it to me good. He decided why mess with easy babbling, let's go to the hard stuff, no words ever babbled, but BAM, he did it....MAMAMAMAMA! It melts my heart listening to it. I told my husband it is comparable to the first time you ever hear a baby's heart beating inside of you, the best sound I had ever heard until this point. His little mamamama, over and over....yep that trumped it. My champion said to me, "oh silly mama, don't give up hope, stop holding on so tight and just relax. I am here and I will succeed. You will know me and love me, just as I am."

He is right. Oh so right. Teaching me more in a year, than I have learned my whole entire life. Interesting really. How you learn so much from the simplest moments, the tiniest things that are larger than life really, that pull you up and out of a place where you have been so stagnate.

So, guess what, mama has hope. A lot of it.