Tuesday, July 07, 2009

Things I love about being Ethan's mom

Ethan's little lamb modeling booties and the smallest of the hats made for him by his Grandma Getty (the hat is tiny just in case he's tiny when he's born)

On the day that we received Ethan’s diagnosis, the genetic counselor we met with assured us that our medical team would fully support our decision, whether we chose to end Ethan’s life early or to continue to carry him until his natural death. She explained that if we decided to continue his life we would have access to a hospice program designed just for babies, including those who are not yet born. The hospice team, she told us, would help us think about how to enjoy the time we have with our baby and make memories of him while he is still with us.

It felt strange to think about trying to make memories of a baby who was not yet born – and who was, on that afternoon, not even yet named. Just two weeks before that appointment I had begun to feel Ethan’s fluttery movements for the first time, and it was only that morning that we had learned that he was a boy. For most of the pregnancy, my experience of him had come only through my symptoms of nausea and exhaustion and through the sound of his heartbeat at our monthly checkups. I had already planned to write down some of my pregnancy experiences so that I could share them with our baby when he was older, but it was hard to imagine how Eric and I might go about forming memories of our unborn son that would last for years to come and console us when he was gone. And it was even harder to imagine, as we tried to absorb the terrible news of his diagnosis, how we might still find joy in his brief life.

But what we have found over the past few weeks is that, amidst the grief, there is a tremendous amount of joy in being Ethan’s parents. Knowing that his life will be short has made Eric and I much more attuned and attentive to Ethan. We have discovered that his in utero antics can still make us laugh out loud and that we are as awe-struck at the miracle of his life as any other new parents. Our days of waiting for Ethan have been filled with both grief and joy, and I wouldn’t trade the joy of becoming Ethan’s mom even if I could be free of the pain that will come with losing him. These are some of my favorite things about being Ethan’s mom:

Ethan loves jelly beans! Shortly after we received Ethan’s diagnosis, he had several days of relative inactivity. I felt very anxious about his well-being because he has a higher than normal chance of dying before birth. But I soon discovered that whenever I feel anxious, I only need to eat a handful of jelly beans from my co-worker’s desktop candy bowl. Just minutes later, Ethan goes wild with kicking, letting me know that he is still alive and well! (I’m guessing that he has inherited my sweet-tooth!)

Ethan gives us an excuse to play with cute stuffed animals and other fun baby things. Eric’s mom sent us a care package at Easter with chocolate bunnies for the grown-ups and an adorable stuffed lamb for her much-anticipated grandchild (the lamb says “baa…BAAA…baa…BAAA” when you squeeze it!). It was one of the first gifts we received for Ethan and was a wonderful affirmation that this child was loved by his grandparents from the first days of his life. We’re not sure how much Ethan can hear, but just in case, the lamb often takes a frolicking lap around my baby-bump. The lamb has now been joined by a little lady bug - and I’m sure that there will be more stuffed creatures that come to live with Ethan in the days to come. Recently, Ethan’s Aunt Holly sent us her favorite childhood book. We read it to him often – and even if he can’t hear our voices, I know he can feel my belly laughs at the silly animals in the illustrations.

Ethan continues to surprise us with his strength. Ethan often wakes up between five and seven in the morning to get in some of his most intense activity of the day. Eric and I have fun speculating about exactly what he is doing in there…Practicing his soccer kick? Jumping jacks? Using my bladder as a trampoline? Maybe calisthenics to prepare to be a state-champion hurdler like his dad and his Grandpa Olson? One morning I was convinced he was doing kick-boxing! I am amazed that a child with such severe developmental problems has not only made it this far in life, but has continued to grow and get stronger. I think that he must be a very tenacious and life-loving little boy.

Ethan’s heart makes beautiful music. Our Rutba House friends put their heads together to think about how they could help us enjoy Ethan while he is alive, and decided to rent us a fetal Doppler so that we can listen to his heartbeat at home. There is no more beautiful sound to me than the “wow…wow…wow” of Ethan’s heart. The Doppler is from a company called “Stork Radio,” so we call our listening sessions “Ethan Radio” – and we listen at bedtime several nights a week. No matter how sad we feel, the steady sound of Ethan’s heart always makes us smile. Eric (ever the musician!) has discovered that my baby-and-fluid-filled stomach makes a wonderful drum. Keeping time with Ethan’s heart, he often improvises some West African rhythms on my belly!

Ethan’s life has strengthened our ties with the people who love us. Jean Vanier, the founder of the L’Arche communities for people with disabilities, talks about how the members who suffer the most or who are the most in need of care are at the heart of L’Arche communities. Community forms around them because they are vulnerable and need the care of others – and this vulnerability and need is the gift that they give to their community. Something similar has happened with Ethan – we have been surrounded and upheld by the love and prayers of dozens and dozens of people in a way I’ve never experienced before. We’ve heard from many old friends and several people we’ve never even met have written to say that they are praying for us. Somehow this fragile little life has drawn together people who love us and know that we, and Ethan, need their care.

Ethan continues to make us into parents. On Mother’s Day, we were still three days from finding out about Ethan’s diagnosis and innocently confident that there would be many more Mother’s Days with Ethan to come. Several friends gave me cards and when our church handed out roses to all the moms, I was delighted to discover that I was included. Although Father’s Day was much more bittersweet, I wanted to do something special for Eric to celebrate that he is, and always will be, Ethan’s dad. Ever since we found out we were expecting, Eric had been looking forward to the day that our child would be old enough for a trip to the North Carolina Museum of Life and Science. For Father’s Day, we decided to take Ethan there. It was wonderful to have something fun to do with and for Ethan in the midst of all the sad things we’ve had to do to prepare for his birth. We spent a long time in the insect room, where Eric was fascinated with watching all the bugs get fed. I’m sure Ethan would have been equally enthralled in a few years. But it isn’t just these celebrations that have made us parents. It’s that Ethan needs us to continue to love and nurture him every day. Some days I think we’re crazy to think of ourselves as parents. But his little life – the steady “wow…wow…wow” of his heart and his insistent kicks – continue to call us to become more than who we were before he existed and to do all that we can to provide for and protect him.


Blogger Carrie said...

Dayna...this post is poetic. The memories you are making and the happy tales you will have to tell are what is going to make this all okay. It's almost like you're writing a letter to Ethan daily. I can just picture Eric making a beat from the heart beat. HUGS.

3:50 PM  
Blogger Margot said...

I'm so grateful to have found your blog, Sweet Mama. It is a tender gift.

4:13 AM  
Blogger The Book-Satterlees said...

Dayna, thank you so much for sharing. Every time I read your blog posts I am moved to tears. Ethan is truly blessed to have you guys as his parents. You give me lots of food for thought. :) Leah

3:48 PM  
Anonymous Dayna P said...

Have you head of an organization called Now I Lay Me Down to Sleep?

They are professional photographers who assist parents of stillborn or unviable babies by taking rememberance photography of the baby's birth.


2:22 PM  

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