Creating Our World - Joy amidst the challenges

Dear Family and Friends,

I am inspired to share some thoughts about the challenges we've faced so far with Lucas and hopefully I can also come back and remember to read this every time that I need a reminder.

It's no small thing, this journey. I still remember the feeling of shock that I was pregnant again and it wasn't long after that when I received the devastating news that Lucas was positive for down syndrome. The experience continued all throughout the pregnancy, a whirl of complicated emotions depending on the test, the day, the circumstances. Feeling both positive and negative emotions and then he's here! Followed by NICU stay, then just a few weeks home, and we find ourselves in a prolonged hospital stay again. Life. Dreading what could be next...

It occurs to me that there are two worlds emerging in the face of the challenges that any one of us faces. Filled with emotions both positive an negative. Hope and despair, gratitude and guilt... sometimes at the very same time. All these emotions feed into a world of significance and attachment that gives us our expectations. And you know what I have learned about the world of expectations, significance and attachment? It all fades...

What happens: A diagnosis of Down Syndrome

What Follows: emotions of despair and fear, confusion and anger, helplessness and worry, "why is this happening?" "what does this mean?" "my baby's in danger!" significance of my thoughts and feelings feed into expectations. I don't know anything about this, but it seems like it is bad. We make flash assumptions inside the emotions that things we don't know anything about are scary and bad. Our life is never going to be the same and that's bad. This baby will be different and that's bad and wrong.

And then... after the initial flood of emotions and thoughts time allows their grip on me to loosen and if I can allow discovery of knowledge, learning about this thing I didn't know anything about, perhaps I could realize that fear was misplaced. I could realize that a future I was so certain at the time would happen of doom and gloom wasn't at all so certain.

From this realization emerges a diametrically opposed world that is sustaining, that consoles, that inspires... the world of nothing. A world of being present, a world where meaning and significance have been released and attachment is allowed to fade. A world where expectations are simply limitations on a point of view. Some how all that I find rushing in to fill nothing is Love and God is Love. This space allows us to actually create and declare what we are committed to instead of how we are feeling, and it is out to discover the present moment instead of being attached to what something means or being afraid that something is true. I am discovering perhaps a truer more authentic experience of God who is Love in this world and a truer, more authentic experience of myself and the world around me.

What Happens: My infant son goes into the hospital with a cold and has to remain hospitalized for 3.5 weeks.

What Follows: I notice my emptions, fears and expectations taking hold and playing out their roles inside me, but experience them more as actors in a play that is all too familiar. Anger gets angry, Fear gets scared, etc. I totally get that, of course, they would feel that way in this situation. I can acknowledge the feelings instead of indulging in them and look past them to discover more about what is happening in my present situation and realize that even if it seems very significant whatever might be happening, that I am committed to love and connecting powerfully with myself, my loved ones, and those around me no matter what is happening and rooted in love I will keep a clear head and be able to make decisions most in line with the best outcome.

I believe that being in the 2nd world free of attachment to an outcome, full of love, and rooted in the present connected to all that I am and all I can be - to be in this world requires courage and willingness to give up all that I think the world means or what circumstances arise that mean something about me. It requires practice and developing this freedom as a muscle.

I have three children, I have a child with down syndrome, I am 41 years old - and I am clear that what that means is that I have three children, I have a child with down syndrome, I am 41 years old. That is all that it means. I am always free to Love everyone as much as I can, wherever I am and however I come into contact with whomever I connect with. I am empowered to love everyone whom I love through whatever circumstance we are in. I can discover what is possible in each moment, through each connection with anyone, instead of being slave to my feelings or circumstances. Let's see what is possible and enjoy the ride in love with God, life, and each other.