The dilemma is: If both parents are incapacitated, who could take over as guardians for the children? There is a super-stressful topic that hovers around the minds of all parents. This topic is even more difficult to manage for parents who have ill children.
As a parent of two children who have Lyme Disease with co-infections (one of whom also has PANDAS), I occasionally worry about this. The original people designated to care for our children have divorced and we will need to alter our will. But who in their right minds would sign up for this job?
And to whom would I trust my children?
Another PANDAS/Lyme parent, yes, and I can think of a few who are loving and caring as well as on top of the research. These people are not family, I haven't known them for many years, yet I trust them. However, I really only know the moms and they already have their hands filled taking care of their own children.
I have a couple of friends who don't have daughters; they adore mine and would be so good with her, if need be. But I also have a son and my kids are close. It would be so much to ask anyone to take in two sick children.
A typical child, is by definition, needy. These diseases result in children with many more needs than the typical child. We're talking about many doctor appointments monthly, a lot of time doling out medications, managing anxiety and other symptoms of these diseases, as well as handling regular life.
In most cases, you need at least a partnership to deal with children who are suffering. There are single parents who are managing sick children, but that's as far from ideal as you can get; the stress is great. Then, it's much more helpful if both of the partners do not work full time out of the house. One person needs to be around for home-schooling or home-tutoring, or picking up sick kids early from school or bringing kids to doctor appointments.
Of course, these children must be provided for financially. Good life insurance policies and estate planning can aid in this. Unfortunately, quite a few families struggle with finances after paying for medical care that is often not covered by insurance. Until PANDAS and Lyme and Lyme's co-infections are given more recognition by the medical community, finding adequate medical treatment will be a challenge and paying for it yet another obstacle.
So, whom to choose? I found this website which has step-by-step guidelines as to selecting a guardian: 12 Tips for Choosing a Guardian for Your Children.
There are so many factors to consider: religious values, educational values, parenting values, patience, love, affection. I know of very few people who have the same religious practices that we do. We have high educational expectations but we also know that Lyme will cause many obstacles for our children and we need to work with the educational systems to support our children so they can learn and do their best. We are pretty lenient as parents for some things and strict with others. My husband checks the kids' Instagram accounts several times a week. We insist on protein at meals, usually. We push gluten-free and organic. We also let our children decide what kind of clothing they want, but we put our foot down to other ideas (like nose-piercing, etc.) We're not perfect parents but we listen.
I need to know that if my son has a Herxheimer's reaction which results in depression or rage, that the guardians will not send him to a psychiatric hospital. He's medically ill (although today, he's feeling just fine, after bicycling 41 miles yesterday with a best friend.) I need to know that he will be supported in his bicycling and horseback riding endeavors, or anything else he chooses to pursue. I need to know that my daughter will not be derided for streaking her hair. I need to know that my kids will be cuddled, which I know, gets harder when they're older.
I need to know that if I'm not around, someone will teach my children how to dole out their own medicines and how to live a healthy life in order to get that Lyme and co. into remission.
One of the ideas at this website is to choose a guardianship panel; I especially like this, becuase needs can change over time. To have a small group of people concerned with the welfare of my children would be so beneficial. And together, they might come up with solutions that work. I like this idea very much because this group can become a family to my children, if need be, or even right now. The over-used "It takes a village" couldn't be more true.
I only have ideas, no solutions. It's a topic I dread to discuss. I will rive safely, wear a helmet when bicycling, and hope for the best. I know that I didn't grow up until my late twenties and that my kids will need me for a long time. I'm much older, but even now, it's sometimes nice to hear a parenting voice saying, "Are you doing anything for that cough?" Our children need the best, and while that's us, we must provide for them just in case.
It's hard.