German Invasion Day 9

Our exchange students Betty and Vanya have been with us for nine days now. I believe they are enjoying themselves and getting a lot out of their visit. I KNOW we are. It's an amazing thing that in such a short amount of time these girls have become such a part of our lives.

Vanya and Betty are in a group of about 14 students who came from Germany. The kids are spread out among various host families connected with the high school.  Most of the host families have students at the school. Our connection is more tenuous, my brother is a teacher there. I was glad to get two students (who are already good friends) because they don't have a host student in the house.  Maggie attends a different high school and, though you may find this hard to believe, she is not that hip on the social aspects of being a San Francisco teenager.

Betty went with the rest of the visiting German students to Los Angeles for four days. Vanya stayed in San Francisco. It was interesting to watch Vanya adapt to school and to us without her friend around.  Of course she did great. But when Betty returned last night, I realized how much I had missed her and saw how happy Vanya was to have her back again. It was a sweet reunion for all of us.

These girls are 16 years old and I can tell you that teenagers are teenagers regardless of their country of origin. They giggle and converse and give each other a bad time. Vanya told Betty that she (Vanya) was now our favorite daughter because she bonded with us while Betty was in Los Angeles. Betty just stuck out her lower lip in reply and we all laughed.  They joke with each other and with us and even get Steve's sarcasm. It feels like the energy level in this house has increased in a very positive way.

In addition to the constancy of teenagers, there is also the constancy of parenting. Steve and I find ourselves worrying about them and wondering where to set limits. There has not been any issue whatsoever, but there is a dance at the school tonight. Also Halloween is Monday and they are invited to any number of parties. Fortunately it's a school night so they won't go too crazy.

You have to realize that the only teenager in this house now is Maggie. We have many worries about her, but heading out to dances and Halloween parties unsupervised are just NOT among them. I worried about stuff like this with my sons too, but let's face it, the issues are different with boys than with girls. Also, I had known all of their friends for many years and knew what to expect. I also knew their friends parents and could track them down with relative ease.

It's been several years since we've had to consider these issues. We will figure it out, but we are realizing that we both feel somewhat energized by the circumstances. I just have to keep Steve from roaming the streets on Halloween looking for any signs of mischief.

Talk about scary!

Parenting for $10, Alex

This morning I sat on a panel with another parent describing what it is like to care for our children with “chronic life threatening conditions.”

I know. You are sorry you missed it.

The parent panel was the first installment of a long day of classes/seminars/whatever for the health care professionals enrolled in the continuing education program. I have done this many many times in the past and greatly appreciate the interest that the nurses, doctors, respiratory therapists and other professionals have in Maggie’s story, and in the story of other families . It never ceases to surprise me that during the course of the panel discussion, something or another will make me emotional.

People inevitably ask questions about how the news of Maggie’s medical problems and other issues were communicated to us. They want to know because that is one of the most difficult parts of their job and they want to know what goes right and what goes wrong for families. I appreciate that very much, but as soon as I start talking about it I am right back in the room when I first learned of (some of) Maggie’s problems, and the anguish we felt. I can feel tears welling up in the back of my eyes.

It happens every time and it surprises me every time.

My response to this concern about communicating – there is simply no good way to give someone bad news. There are a hundred bad ways, but I cannot think of a good way. I was appreciative at the time that the doctors came in with information and some idea of what was wrong so I could focus on that; but it was still not a positive thing for me. It would have been a lot more negative if they were cavalier or flip about things, but no one was.

We were asked to recount a time when communication with and between medical providers really worked in a positive way. Even though I had days to prepare this, I could not come up with an example. I told them honestly, 95% of the time the communication works fine, partly because I don’t let up until I get answers. For purposes of remembering, however, only the other 5%, the bad ones, come to mind. You remember and recount the bad ones, not the good ones. We take the good ones from granted. I hope they realize that 95% is still an A.

It is good for me to do these panels, even though they can be emotional. I can focus on how far we have come, the things we have learned and the person Maggie is. Sometimes all of that is lost in the day-to-day care and management of all of this.

Caring for a child with chronic life threatening conditions is a ton of work, physically and emotionally. However, being Maggie’s mom is fun. Participating in these panels allows me to transform her from the medical definition of her status to the person she is. She's a lot more intersting as a kid outisde of her numerous diagnoses and issues.