I love that FaceBook has reconnected me with so many family and friends. I have FaceBook friends from my high school and college years. I have FaceBook friends who are former parents and students that I have worked with or taught in the past. Many extended family members are friends as well. I enjoy reading their posts and seeing what they are up to. However, sometimes it is hard to see what a great life they are living. They are basking in the sun while vacationing. They are excited that their child just got accepted into a major university or baseball club team. Their daughter just completed her very first ballet class. FaceBook is a place where I can rejoice alongside of them. It is also a painful reminder of how very different my life is.
Since Princesses Purple Spots flared up so badly this summer, we were restricted to where we could go and what we could see. Most of Princesses days were spent at home swimming, doing crafts and reading. We know from experience that the more outside activities that Princess participate in, the worse her Purple Spots become.
The other day I was talking to my husband. I made the comment that while
some people tour the Major League Ball Fields or the famous California
Missions, our family has toured other lesser known facilities. At one
Purple Spot Clinic, I told the intake staff member there that perhaps my
family should get their own parking space. I mean we are now becoming
regulars. We know the staff members on a personal basis and they know
As a result of Princess's condition, we had a very limited repertoire of events that we participated in this summer. When Princess was not confined to home, many of our outings consisted of checking in at the Purple Spot therapist's office or the Purple Spot doctor's office. Sometimes our only outing for the day meant a trip to the pharmacist to pick up more medication. Princess really wanted to go to the beach or have play dates over but those activities only exacerbate her diagnoses. Come to think of it, we did not go to the beach once this Summer.
If you know me, I like to be on the go. I am an extrovert. My energy comes from being with people. If I am cooped up too long, I become rather difficult to live with. My husband knows this even though he is the antithesis of this. He would rather stay home doing work around the house. Since he realizes what I need, he will watch Princess so that I can attend bible study or get together with a friend. For my part, I will stay home with Princess so that my husband can go to Home Depot or any other masculine store so that he can get the supplies that he needs for his garden or any other current fix-it project he may be working on.
And so as Summer vacation draws to a close for us, I can't help but to notice what a very different experience our family had this Summer than many of my friends and family. It may be this way for a while. And I am OK with that as long as Princess gets what she needs. It is also important that my husband and I, who are caring for her, get the breaks that we need so that we can be the best possible caregivers for her.
P.S. You can read more about Princesses Purple Spots here.