Monday, 9:45pm and I write this with the dim light of the computer and the soft light in Nora’s room. The hospital noises outside are dulled by the Songs and lullabies for children of the world CD that has been on repeat in Nora’s room ever since we moved to 7 West several days ago. Jason is comforting Nora as she drifts to sleep, being disturbed occasionally by her worsening cough. I’m cheating a bit on this update and copying below what my Dad sent around this afternoon from here in Nora’s room after they arrived with Kali, who I’m quite convinced grows taller and cuter with each absence from us. I heard she got stretched by my Uncle Jon so she may in fact be a bit taller. She was loved on and cared for so well in the past few days by relatives in West Virginia and for that Jason and I feel so grateful. This evening as the two of us took a “little explore” through the hospital I was asking her how she possibly could have survived without me, her mommy, for five whole days. She very sincerely said that she could because she has such good Grandma and Grandpa’s. Nora, even in her very tired and worn out state, was clearly interested in Kali’s arrival. We’ve felt for a number of days that she has been looking for her. We are glad she is here, even as it is so hard to know how to journey with her in the uncharted waters we face ahead.
From: Herb & Sarah Myers
Dear Friends,
We are back in civilization -
Even though the smiles and coos have continued, Nora's condition fluctuates but overall seems to slowly deteriorate. Janelle yesterday suddenly noted how Nora's cough reminded her of her Grandma Bucher's cough before she died of pulmonary fibrosis. They asked the doctors about this and they are entertaining this as a possible diagnosis.
Today they had a meeting with most of the specialists involved in Nora's care. They felt there is little else to do. If Jason and Janelle wanted they could to lung biopsy and repeat the cardiac catheterization but doubt Nora could survive the procedures. They also are not likely to add information that would be helpful to Nora and may increase her suffering.
As a result of that meeting, Nora is on comfort care. She continues on oxygen along with an opioid for comfort. Her tube feedings are breast milk only. She seems fairly comfortable.
We are the ones who are uncomfortable as we think of saying our goodbyes and living on without Nora who has become such a part of us. We are also trying to help Kali to understand as she is able and wanting to talk about losing her sister. We don't know how long the dying will take. Janelle and Jason are dealing amazingly well with all of this. Even that makes the tears come for me…Herb
I’m not sure I have the energy to put in writing all that is swirling in me from the events of the last 24 hours in particular. What I do know is that this little tiny person has made a big imprint on our hearts. My journey from the beginning with Nora has been one of many emotions for me, sometimes emotions I struggled to understand. And now as I face losing her, I am scared. How do I help sustain her in dying just as we have worked to sustain her in living? And how do we journey on as a family? Since the day Nora was born, I have struggled with wishing many times that we had never gotten pregnant. And I’ve struggled with guilt for feeling that way. How could I wish someone away that I helped to bring into this world? Was I not comfortable with a child who would look different, who would need special care, who would change my life in ways I felt I hadn’t bargained for? I would find myself yearning (selfishly, it felt) for our pre-Nora days when I had choices and freedoms that I felt were stripped from me because of her needs. I felt bitter at times for the way that Nora’s presence zapped me of any extra energy for Kali. But we will never get back our “pre-Nora” days. And I’m glad, as much as I’m heartbroken. And I hope that Nora’s life has had enough precious moments in it to make it worth it to her too. I wish she would be able to understand that her little body was anything but weak, that her personality shone through the struggle, that she taught me so much in such a short time and that she will be missed more than I can begin to comprehend at this moment.
This paragraph through blurred vision has taken me a long time to get out and Nora and Jason are both sleeping. I should join them, but I’m not sure sleep will come easily. I somehow feel I should stand vigil, I should soak up every breath that Nora takes. She has gifted Jason and I with some precious moments in the last number of days. We will cherish those. In the coming days, we will walk beside her as best we can, advocating for her comfort and peace of mind. And we truly feel that we have medical professionals that are journeying with us with care and competence.
We are uncertain of our plans for the coming days. We hope that time will bring clarity to Jason and I. Do we keep Nora in the hospital for the duration of her life? Do we work to get her home? What is best for Nora? What is best for Kali? Who do we want to surround us as we journey with Nora in life and death? For the next few days we need to be here. We are working out learning her cues and having those here help us know what medications or other comfort measures will best address various signs of discomfort. And we will try to listen to Nora. We want to let her tell us when she is tired of holding on and when that time comes we will beg for strength to let her go. And we will tell her that there is strength in letting go, that she can do it, that we will always be so proud of her. Janelle
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