Friday, November 26, 2010

Thankful That We Are Not Alone - Guest #16

This lovely lady requested to be involved in the Thanksgiving Project and after reading her blog, I was ever so pleased to say yes. I highly recommend running over to Garden of My Heart and seeing what else the talented Melissa has to say!

Please welcome Melissa:

"I stumbled upon this blog and this Thankful That We Are Not Alone Project when one of the entries was discussed elsewhere on the internet. I was surprised at the negative reaction and it really had me thinking about the authenticity, truth, and the Down Syndrome community.

In the short 6 months since I've had my daughter, I have struggled with how best to share our story. On the one hand, I feel pressure to show how normal my life has been despite Down Syndrome. Our kiddos have a hard enough time with acceptance in this world due to the fears and misinformation out there about Down Syndrome, and I genuinely feel sometimes, that if I say one negative word about it, I only perpetuate the stereotypes and make things harder for my daughter. On the other hand, I feel that it is not genuine to constantly spout rainbows and butterflies about my life. I feel that it somehow lessens my experience and that of others to leave out some of the difficult aspects of this diagnosis.

I wonder how many mommas out there feel the way I do? I know part of this is a function of my newness to it all. I have yet to fully develop my voice and I have yet to fully develop any definite feeling about what Down Syndrome means to me as a mom or even just a human being. All I know for sure is I love my daughter through and through.

I have come to realize that authenticity is the greatest thing I can bring to the table, both for my daughter and the Down Syndrome community. With any diagnosis, with any kind of life there will be peaks and valleys. The lessons we learn in the valleys make the peaks that much more amazing. To be honest about the valleys is to recognize them for what they are, work through them, and come out on the other side a stronger momma, person, and advocate.

To hide those valleys for fear of painting a negative image of Down Syndrome is counterproductive. They are nothing to be ashamed of or the shy away from. They are just are. Authenticity and honesty in this respect, I feel, brings the Down Syndrome community closer together. We can learn from each other in our stories of acceptance, or lack of acceptance, in our stories of outright joy over our children's accomplishments or despair at their struggles. All voices and all stories are important.

All stories need to be accepted for what they are - glimpses into someone's life, an opportunity to learn from that experience, a chance to celebrate or lift someone up on a difficult day. Judgement, need not apply. We may not agree with someone's approach and we may even be hurt by the words they have chosen but we need to allow room for authentic voice and the truth in our stories.

In that spirit of authenticity, I want to share where I am today. This is how I truly feel, no filter for how someone may take it.

I love my daughter. At 6 months old, I swear she already has a sense of humor. She knows her momma and daddy. I love that I know exactly what will make her smile. I love that I know the difference between her various coos, babbles, and cries. She has the biggest blue eyes and, surprisingly, beautiful orange hair. She handled her open heart surgery like a champion and can do tummy time like nobody's business. I have days that are all rainbows and sunshine. I have days when the words "Down Syndrome" don't leave my lips. I have days I laugh so hard my face aches the next day and my heart feels like it may very well burst from joy at this precious life in my hands.

But...I struggle with the fact that she still has an NG tube. I am sad that my child started speech and physical therapies at just 6 weeks old. I worry about her future and I selfishly worry about mine. I have times when I despair. I have days when I am mad at Down Syndrome, sad at Down Syndrome, frustrated with Down Syndrome. I accept that my daughter has Down Syndrome, but that doesn't mean that I need to like it.

My biggest struggle right now is the concept of "they" - anytime I read or hear anything along the lines of "people with Down Syndrome are so nice"(sweet lovable, etc) I feel a twinge of sadness. You can't say that about any other group of people without being slammed for stereotyping. Imagine walking up to someone and saying, "My cousin is white! All white people are so nice!" It just wouldn't fly. Yet it appears to be completely acceptable within and about the Down Syndrome community. It is hard to think that my daughter's personality is already somewhat predetermined, or at least if she falls into any of these stereotypes it will not be attributed to her individuality or my parenting, but that she has this extra chromosome so her kindness must be some foregone conclusion.

So that, in a nutshell, is where I am. I hope that someone reads this blog entry and understands exactly how I feel. I hope that someone reads it and disagrees completely, but takes something from this point of view.

In the future, I look forward to reading more and more about life with Down Syndrome - the good and the bad. I look forward to adding my voice to the mix and I hope it brings comfort to at least one person to know that they are not alone in their thoughts and feelings. I am thankful that I am not alone in this."

1 comment:

  1. I believe the honest voice is the most encouraging for us as parents! Truly!