Monday, February 21, 2011

Together But Apart

When we planned our adoption of Jingju we thought long and hard about how she might be effected by her father having multiple sclerosis. For many reasons, we came to the conclusion that we should go ahead. We were perhaps a bit pollyannaish in our outlook, but when we considered the life Jingju might have in China and the possibility she might never have a family, we felt that all the things we could provide; family, love, safety, our guidance, an education, outweighed the challenges of Kevin's illness.

We knew that Kevin would become more disabled, but we never imagined his MS would progress so quickly. Just before Christmas, Kevin got sick with what for most would have been a minor infection. For him, it landed him in the hospital because it doesn't take much to exacerbate his MS symptoms. He got better medically, but as with all his hospitalizations, he needed rehab to regain his strength. Kevin has been at a rehab facility since New Years, but he has not made the progress he needs to make in order to live safely at home. Our insurance company has refused to cover more rehab at this point. The outpatient coverage we get for visiting home care services is not adequate to keep Kevin safe or comfortable while I am away at work all day. Kevin and I met with his care team last Friday, and we all agreed that it is time for Kevin to go into long term care. This is a very sad time for us, but especially for Kevin. It's so hard for him to be away from Jingju.

So how is Jingju? As I've said before about her, it's difficult to always tell how Jingju is feeling on the inside. On the outside, she is almost always happy, inquisitive, and fearless. A few weeks ago as we were walking down the hall to visit Kevin, Jingju spontaneously said, "I don't think Daddy should come home." I asked her why, and she said "because he's safe here." All these months I've had to collect myself before opening the door when I'd get home, bracing myself for what I might find; Kevin slumped over asleep in some precarious position on the couch, or worse, on the floor among broken bits of glass from a plate he dropped. I've assumed that Jingju has had the same anxieties, but it was hard to tell. When Kevin did fall, she was always there being sweet and sometimes humorous, for example taking advantage of his compromised position to use him as a chair or pony. I suppose we both hid our fear to be strong for each other.

Jingju does voice that she misses her daddy, and I think as is typical of a seven year old, she's concerned about what this all is going to mean for her? The questions she asks are about where are we going to live (with my parents for a awhile), and where will my bed go, and can I bring my Teddy bear? I am more than ever now trying to create a sense of safety for Jingju by keeping her routine going, and communicating our plans in advance so she knows what to expect each day, and in the near future. We talk with Kevin every morning on our drive to school, and at night he calls in (soon Skyping) to listen in on bedtime stories and to say goodnight. We visit about 3 days a week, and usually have a meal together. Sometimes we take Kevin out to eat at a restaurant or we go to a movie. Jingju also gets some father/daughter time because I can now leave Kevin alone with her knowing that she is safe. The nursing home has a rec room with air hockey and a pool table, so Jingju loves to hang out there. A few weeks ago I started keeping some books, games, and art supplies in Kevin's room so he can have activities to do with Jingju when we visit. And Miss Jingju has made herself a friend of everyone in the place, beginning with the receptionist with whom she practices telling time as she enters our names in the visitor's log. She has a fan in Kevin's roommate who calls her "Bright Eyes," and she rides around the place on Kevin's lap waving to everyone. They have a rule at the nursing home that children are not allowed to be quiet. So it's a very welcoming place for Jingju, and she is very comfortable in the setting.

I am reinforcing all the time to Jingju that we are still a family and that her father isn't dying. I'm trying whenever possible to defer to Kevin when opportunities to discipline Jingju arise to emphasize that he is still involved in her parenting. There are some positive aspects to our new situation, which is that since Kevin has been getting more support in his personal care, he's more alert and has more energy when we spend time with him. I am less stressed and therefore have more energy as well. I am looking forward to being able to be more of a wife and less of a caregiver, and a better parent to Jingju.

Our work now is to establish a new normal family life.


  1. Lisa, I'm sorry to hear about Kevin's health problems. I can see in the photos you posted that Kevin and Jingju have a sweet relationship. I hope things continue to improve for your wonderful family.

  2. Wow, so much as happened in such a relatively short time....thanks for posting, it was good to catch up a bit on how things are progressing with Kevin's health and Jingju's reactions....thank God for resiliency...your daughter has that for sure! As Greta said in her comment, you DO have a wonderful family, and have been truly blessed in so many ways...Love you all, Shirley

  3. I am sorry to read that Kevin has had to move to long term care. It sounds like you are all making the best of the change and holding each other close. You are in my thoughts as the three of you adjust to this new life as a family. Thank heavens for cell phones and Skype! (P.S. Even though I've never met you, I have loved reading about your life with Jingju.)