I wrote a post while Wes and I were on our spring break road trip. While away, we were able to let go of a lot of our sadness, and focus on the fun of being on the road, seeing amazing natural wonders, and spending quality time with family. It was awesome. I didn’t send the post, because I couldn’t get the photos to insert properly using my ipad. I figured I’d wait until I got home, and then use our PC to do the work.
We were so glad to see Greg, and the house looked better than ever – clean, fresh, inviting. We had sun filtering in all the windows (and the blossoming trees were visible from every window), and Greg had everything spotless. Anna had spent the week helping us find homes for a lot of Hannah’s baby items, so the clutter was reduced to a minimum. It should have felt great. But it didn’t. Wes and I both felt sad, and tentatively walked into the house.
Waiting for us was a small pile of mail, including the book that we had made of Hannah’s Caringbridge, as well as a package from an organization called, “Songs of Love”. I was thrilled – this was a nonprofit that we connected to through Hospice, that creates custom songs for loved ones that are sick. We were able to have two songs written and recorded – one for Wes and one for Hannah. We began this process way back in January, and I talked to the woman who would write Wes’ song back in February. Sheira Brayer is a delightful woman who lives in the town of Amenity, NY. She has had a successful children’s PBS show in New England, and is a mom and songwriter. We talked for a long time in February, about Wes and Hannah, about our family. She had her own family health issues that hit her in March, so she emailed us early in the month to say that the song would be delayed. We emailed back and forth after Hannah passed away.
I opened the package with the CDs, thrilled to have them and not thinking about the fact that it might make us even sadder. The minute the guitar started, Wes said, “mama, turn it off!” I did, and we both burst into tears. We went into the play room, sat on the love seat and cried. I realized later that evening when I was talking with Greg that it was the one month anniversary of Hannah’s death. We have yet to listen to the CDs – we will in the coming days or weeks. I’ll link them when we finally listen – I have the lyrics and know that both songs are really beautiful.
We feel Hannah everywhere, but most especially when we look out the skylight in the upstairs bedroom that was hers before we moved her crib to the family room the final month. The skylight is beautiful – the only natural light in this little room, but so large that you see the top of a giant Douglas Fir tree in our neighbors yard, the sunset to the west, the clouds, and last night – a full, bright sky of stars.
Greg and I talked a lot last night. We miss Hannah, and continue to miss the possibility of the healthy child that we had so hoped we would have. We still linger on that sense of hope, the “what if?” that we held on to, even as we accepted her body’s decline. We do not regret our course of action for her – we feel we really listened to her. I will hold tight forever to that amazing knowing that I will always have, from the experience of graciously holding her as she passed away. I’ve never known anything to be so right.
Now my work begins. I will start exploring what life looks like in this post-Hannah life. My first deep dive will be seeing what and where Hannah’s story might make a difference. I was in a bookstore this weekend in Salem, OR, browsing while I had a few precious moments of quiet. I picked up a memoir by the journalist Ian Brown called “the Boy in the Moon,” about his journey with his son who has a degenerative genetic condition different than Hannah’s in many ways, but also with some similarities including profound disabilities. I wonder if there are many memoirs written by families with children like ours that have chosen a different path? A different outcome? Would it be a story that might be worth telling? And if so, how do you do it – what does it look like?
Hannah’s neurologist Dr. McDaniel sent us a note about a talk she heard a few weeks ago from a visiting doctor, Chris Feudtner, MD, PhD, MPH, from the Children’s Hospital of Pennsylvania. He is focused on palliative care now, and his Grand Rounds talk at Seattle Children’s was focused on his work that was summarized in a recent journal article (Arch Pediatr Adolesc Med. 2010;164(9):831-839). I was moved by his findings – which so fit our situation with Hannah. As he stated in his paper,
Conclusion: For pediatric patients receiving palliative care consultative services, higher levels of parents’ hopeful patterns of thinking are associated with subsequent enactment of LOI (limit of intervention) orders, suggesting that emotional and cognitive processes have a combined effect on medical decision making.
In other words, the more hopeful a parent, the more likely they are to provide orders to the team to limit life-sustaining intervention, with a focus to “prevent suffering and promote comfort, quality of life, and dignity”.
The question Greg and I held so dear over the past year was “what is right for Hannah?” We know that it is not the same for any two children, and there is truly no one right way. For us, the path of listening and enacting LOI orders felt right, and I hope that my future work may enlighten others that are in this same, awful place of having to sit in the question of what to do for their beloved child.
How might my past direct my future? I’m looking forwarding to exploring.
I’ll upload the photos from “Wes and Mom Spring Break Road Trip 2012” to the Redwood forest later this week. What an awesome place to sit in wonder and really feel the past among 2,000 year old trees.
