Complicated seems to be an accurate summary of life right now. I’m living with simultaneous truths. One the one hand I am witnessing my older children grow and change and on the other hand my youngest in slowly, inch by inch, regressing. When I’m alone with the two big kids I am increasingly getting a vision of parenthood beyond the exhausting little kid years. We have conversations during which they engage, surprise and teach me in unexpected ways. I feel intense pride watching my years of dedication, patience and love turn into beautiful, thoughtful, kind children. On the other hand, I’m stuck in place watching 4 month olds surpass my toddler in their development and interaction with the world. I’m stuck watching regression rather than progression. Stuck watching the product of my dedication, hard work and patience move increasingly into a realm beyond my understanding where her beauty, thoughts and kind eyes are no match for her underlying defect. I’m stuck under the weight of her body and the weight of my thoughts.
Living with the knowledge of Talia’s demise is manageable in my day to day life, believe it or not. I’m not crying in the corner every day, I’m not dwelling in the sadness, I’m not “putting on a good face”. What I am doing is focusing. Intensely focusing on each moment. The joys of my life, and there are still many, require great focus to not allow them to be overtaken by the great sadness. By focus, I in no way mean that I put blinders on and pretend that the good is all that exists. Without acknowledging the truth of Talia’s situation I put myself at a great risk for the sadness to swallow me whole after she is gone. The focus is more like a camera that sees the full picture and then decides to zoom in and focus on one aspect of the shot at a time. The whole picture is still there, and I can-and do-change my focus many times a day. Not every picture is pretty, but the sum of them is my life right now, and it’s still a beautiful sight.
Some snapshots of the past weeks:
A typical trip to the grocery store, zoom in-
The baby food aisle was so unexpectedly depressing I had to pause in the store and collect myself. Choosing between the apple blueberry mash or the pear pineapple and knowing that NONE of it matters. Talia shows no preference for any of the food. It doesn’t matter what I choose, it won’t change anything for her. The jars of food with vegetables snuck in depressed me even further, they are all an indicator of the ways in which we parents try to make the absolute “best” decisions for our kids all the time. Fretting about them not eating a sufficient amount of string beans in infancy to help their little brains grow. The illusion that these tiny decisions matter to be overall development of our children. None of this matters for Talia. These jars are same ones I’ve been looking at for over six years at this point (and over 18 months of Talia’s existence.) These jars became the symbol of my lack of forward movement and my poor daughter’s lack of future.
Change focus
A vacation to visit grandparents in NYC allowed me to leave Talia comfortable in their home while the big kids and I navigated the subway without a stroller. This is a huge deal in the city where elevators are unreliable and stairs are plentiful. I can see how much more fun our trips are going to get as my kids age and can move about even easier through the maze of transportation and people. It was a joyous experience for me and reminded me of the fun I had growing up in the city. I felt energized by the city, and by my ability to share it with my growing children.
On that same NYC trip we walked through Central Park with Talia in a carrier on my body. The sun was warmer than it should have been for a February day, our moods were joyous, my big kids, my husband and my baby joined the throngs enjoying the day in the park. As soon as we started walking Talia started smiling, she started making sounds and then-a parting in the cloud of her mind- she laughed. Full voiced, full of heart, full of happiness. Every movement of my body caused hers pleasure and she shared that moment with me with as much interaction as she is able to give. It was beautiful. I drank it in. I marked the memory in my mind and in my heart. I hope to be able to recall the feeling of that moment in my bones for the rest of my life.
The Warm Weight of Love 
This is beautiful and thoughtful. You have found a joyful way to incorporate this pain into your life. Your wisdom is inspiring. Love to you, David and your children.
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Dear Carla,
You are my hero!
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As always, heartbreakingly beautiful. Sending you all love.
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Thank you for sharing!
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Just beautiful……sorry I missed you while you were here. I would’ve loved to share some of those moments with you. I know you will recall that moment in your bones for the rest of your life!
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Dear Carla,
The warm weight of your deep love radiates off of the page; your writing is visual and moving.
Sending tender love to you all.
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Stewardship comes to the forefront of my mind as I read this glorious article. When we are given, blessed with, earn something, we naturally become responsible for it…if we are healthy and choose to accept the mission. Effective stewardship is not just oversight but also investment. A bank account, the borrowed neighbor’s snow plow, a house, one’s clothing, one’s marriage. We naturally steward it if we respect it, value the co-owner, cherish it. We appreciate them. And as responsible people choosing to care for them, it becomes often times, many times…an unconscious act. It doesn’t take much energy to think about it…we are committed people and are responsible to the thing we have accepted to manage, monitor, or even grow. Eventually, the practice becomes an unconscious thought, trancelike…a brainless exercise.
As a parent of two healthy daughters and 3 healthy granddaughters (so far), I can confess that this process of stewarding healthy children is also prey to unconscious monitoring, or perhaps a deep denial of fear that something terrible could happen at any moment.
As I witness your process Carla, your lovingly precise and alert stewardship of Talia’s life here as you demonstrate your very conscious and loving care for this sweet angel child, I immediately am enabled to send my own fearful, unconscious thoughts up to the Heavens for transmutation. You inspire, you teach as you share your experiences, you quell my fears as you set the example and name the demons that can follow us. You embolden me, encourage me to think real thoughts and to not be afraid. For fear is the real enemy…fear of screwing up that snowblower, that borrowed gown, that 3rd marriage…fear of being judged, fear of failing.
Fear naturally accompanies us through all of our lives, at the very least just enough to keep us moving forward. But the courage you show us here, the bravery you demonstrate dares me to walk forward without fear’s company. Life here on this Earth plane will never ever be fair, for the shadow contrast is needed for us to grow, to learn, to evolve…to keep us pushing through this never ending birth canal toward our own lives.
I personally thank you for your courage, your honesty, your willingness to be and stay conscious. You have no idea of the enormity of the great work you have been chosen to accomplish. I am honored to witness this life, your life…for something truly grand is being unveiled and you are the sculptor. I love you.
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