Sunday, May 25, 2014

Okay With Being Human

I had the opportunity to attend the Down Syndrome Conference at the Phoenix Childrens Hospital a few weeks ago. I learned a lot and feel more prepared to get Eli ready for the preschool in the public schools in a year. Of course there was the chance to say hello to friends, love on some cutie babies and chat with Gina Johnson. She introduced to me a gal who lives in the Glendale area who is pregnant and has just discovered her baby will have DS. She is a mother of two already and it was obvious she was feeling overwhelmed. I had to admire her being there trying to take in as much information to be prepared for this new little one when I know I would have been at home just trying to process it all.

We chatted for a while, about how Gina is a force of nature and in her enthusiasm she catches you up and whirls you forward. We talked a little about our other children and then I just felt I had to tell her that in all the 'doing' not to forget to take time to mourn. That's when we both broke down and cried a little. I wanted her to know it was okay..... because it really is okay.

Mourning occurs because of loss - of an individual, a job or circumstance. Some losses aren't as obvious, like in the case of a child with Down Syndrome. You experience conflicting guilt, the instinctual fierce feeling that you love your child no matter who or what they are and yet you experience the loss of certain hopes or dreams or even images of what you picture life will be. There's fear in the open unknown. It feels as if acknowledging that feeling somehow lessens your love or taints it and makes you less of a mother when in reality all it does is to affirm our humanity. Loss is loss and mourning is the process that allows us to let go and move on to embrace a new future. No loss is unworthy of this process. I'd rather set aside the everchanging image of a perfect mother and experience it than to stay forever tied to something that may not be and miss the beauty of what will be.

That being said, I mention that things are a process and processes always take time. But I do know from experice that with mourning and with faith (and for me, particularly in God) healing occurs and what replaces it is a deep gratitude for joys and hopes experienced, and those yet to come that I could never have imagined for myself. So as cheesy as it sound, I ascribe to the popular phrase, "better to have loved and lost then never to have loved at all".

Before Eli I loved and experience the joys of two typical children, their growth and learning, just the pure joy of discovering life. With the unknown of Eli's diagnosis, I mourned those things, never knowing what and when or even if I would see those things in his life. Now I love that I have lost those expectations and in it is a new sense of wonder because nothing is taken for granted any more, no achievement is small. It is replaced by the sense of awe at life, our souls, that God can do so much with so little and that joy can be immeasurable.
Little man looking so grown up as we wait for a ride home from the dealership.

I felt I had to write this post and just to let others know its okay to mourn. Life is a journey and experiencing the moment - good or bad - and moving onward with hope is what makes the sweeter taste sweeter because I know the bitter. I'm okay being just human!

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