October 4: Yesterday hospice came to visit with Caeli and Hope. They explained what they can do for Hope and her parents when she nears death and when she passes. It was a mixed visit. In some ways it comforted Caeli because she knew she had some additional support available to her, but in some ways it was difficult because they told her things that were hard to hear or believe...
Hael has to leave to go back to Alabama today, so we are driving over there for Hael's last visit. He many not be able to get time off to attend a funeral, but he feels it was important to come when he did and meet Hope and support his sister.
While Tyler is at work, I will stay with Caeli and Hope. Hope continues to eat only about once each day and only about an ounce or so.
Today I am planting a little Hope garden outside their living room window. It is totally the wrong time of year to plant a garden, but I am planting perennials that will bloom each year.
October 5: Tuesday was the second day that Hope has not eaten at all. Caeli tried to feed her several times, but Hope was not interested. She is very sleepy now, more than ever. When Thom (Dad), Hael and I arrived, Tyler was working in the vegetable garden (digging up ripened squash, beets, and tomatoes) and Caeli was sitting in a chair with Hope in the sun in the garden. They were all three rather somber...
I spent most of the day outside finishing the Hope flower garden and Caeli sat outside with Hope just going in to try to feed her and to visit with more Hospice people until it started to rain...
Caeli said she used to be afraid that Thom or I would die, but not any more because she knows we will be with Hope. She is thinking more of the beautiful place where Hope will go and how it will be nicer for her than here. Tyler is very quiet about Hope, except to kiss her and play with her and love her. Just before we left, Hope opened her eyes very wide and gazed at us. It is such a thrill to see her look out at us.
October 9: It has been a few days since my last update because it is getting harder to write them. Hope is still with us, yet very weak and is getting about 1 ml of oxycodon syrup under her tongue every four or more hours. She has not eaten since last Monday at 3 am and she was eating only once each day for a few days before that. Caeli has tried to feed her unceasingly but Hope will not eat. She has tried to feed her by every means, but Hope just spits it out or it drools down the side of her face. She grows thinner and weaker every day and this is difficult to watch. The thought of a feeding tube has entered their thoughts many times, but they are resisting that thought because the doctors warned them before Hope was born what the outcome would be if they chose any form of life support. Once they start, they will never be able to stop and she will live as a semi-conscious being for the rest of her life (which will likely be short). If she can not do any function on her own it will be permanent. They continue to surround Hope with their love and tender care. Caeli has put her down only to change her diaper and bathe her. She holds her all day and sleeps with Hope on her tummy all night. She watches her every expression and savors every moment. Tyler is by her side almost every moment (except when he is doing chores or at work) and continues to play with Hope and kiss her and blow "zerberts" (Bill Cosby's word) on her. Her smiles are dimmer now, but they still appear and every now and then she will peek at her Mom, Dad, or visitors.
The above picture is one of my favorite Hope smiles.
We have this picture on our fridge here in Massachusetts. We had it on our fridge in Utah as well. It hung under one of our engagement pictures. Above the engagement picture Tyler had arranged the magnetic words on the fridge to say "I am in love with you." About a day after Hope passed away, I noticed the words had changed. They had moved under the picture of Hope and now said, "I am with you." I know Tyler changed them, but it makes me smile so much to think of Hope saying them.
Next time I will post a video I am working on that has a few clips of Hope from the beginning of October.
Love, C
No comments:
Post a Comment