“Love is composed of a single soul inhabiting two bodies.” ~Aristotle

I received an email the other day from a new reader of this blog. With her permission, I am reproducing it here, with my answers / responses interspersed. Please, feel free to add your input in the comments.

Thank you so much for your blog-I appreciate your honesty and the way you advocate for Pearlsky. It’s nice to hear someone articulate so many of the things I think but don’t want to articulate to anyone around me because they’d probably freak out.

That is preciesly why I keep the blog anonymous. There is so much that we are all afraid to say.

I have a 14 year old son with complex medical needs-he has a very rare progressive neurological disease with a “?” at the end of it.

That in its own right is difficult. The not knowing is always the scariest I think.

First off, I’m so sorry for the prejudice you encounter as a dad caring for his daughter. Argh. Even as a mom, I don’t advertise that I let my son sleep with me when he is having a lot of pain or seizures because people just don’t have a clue.

I appreciate the thoughts. I do not tell people that I bathe Pearlsky, I either avoid the subject or just lie. I miss that I cannot lie down with her and cuddle anymore, but I won’t even mention that on my blog.

Ooops.

I don’t want to ramble on and on about myself, but I do have a question about something that scares me. As a single parent, what do you do if you get sick? Like, a horrible flu with a fever that makes you black out with when you try to get out of bed or something? Do you know what other people do in similar situations do?

My son needs medical intervention that schools and community programs won’t touch (7 injections a day for brittle diabetes, seizures; complicated by developmental delays and behavioral/mood issues), but he is not sick enough that we qualify for nursing care. (I haven’t been able to work since he got sick 11 years ago)

I ask because while I don’t often get sick, I got the flu a couple of years ago and didn’t have anyone who could take care of my son for more than a couple of hours. Even if I did, there is a lot of preparation (medical supplies,etc…) and instructions that happen before he goes anywhere, which I was incapable of doing at that moment. I was on the verge of calling 911, even though I knew he’d probably end up in foster care and his health would suffer with me not being able to train whoever would be taking care of him, but I was so sick I was scared I would mess up his medication or pass out and he would get very, very sick or die. (he is not able to call someone for help-I’m not even sure he’d be able identify that help would be needed- for a variety of reasons)

What do you do if you’re the only one who knows how to take care of your child for more than a few hours?

Sorry if you’ve written a post about that and I missed it…I haven’t gotten through all the archives yet.

First of all, Single Dad does not get sick, nor is ever out of commission, so this is all conjecture. But if Single Dad were to say, have a severe disc rupture and suddenly find himself bedridden, maybe he would think about such things.

As I have mentioned before, I have several copies of Pearlsky’s med / feeding list. There is one in her room, one in her kitchen (yes, she actually does have her own), and very importantly, inside a luggage tag on her wheelchair. I fear being in an accident when we travel and my not being able to communicate. The list has everything an emergency room physician anywhere would need (see it here) and any caregiver in the house. Granted, it does not go into the how to¬†administer, but that would be figured out.

I am lucky in that I have had a series of nannies for Pearlsky and that, in one form or another, they stick around. In an emergency, any one of them that have not worked with Pearlsky for a time would come and help.

More and more I am trying to make sure that there are multiple people who know how to care for Pearlsky. One problem is learning the first and last routines of the day since I am the only one around for those. During my “back incident” I was able to describe what needed to be done by those helping.

Who are these people? I am in the situation where the government gives me money to hire anyone I want to offer care for Pearlsky. I have no family around and Pearlsky’s mother is … ummm … not the help one would hope. You have to have help, this is something none of us can really do alone. If you are not in a position to pay for help, nor get the proper (hoped for?) support from the government, possibly finding other sources, maybe a religious or educational organization is an option.

I’ve had a couple of incidents where I was instantly incapacitated, and several while alone with Pearlsky. That scares me, a lot. One of the incidents found me on the floor of the bathroom, with Pearlsky, and I was unable to move. After that, a dear friend (who, once having a idea, rarely lets it go … but I love her anyway) demanded that I get a “help, I’ve fallen and can’t get up” thing to wear at all times. Yeah, that will fit my macho image real goodly. I did get a similar device that does not use a service, but for now I have made it a point to never be out of reach of a phone. Seriously. I have a phone in every room and I am never without my cellphone. Even while in the shower, it is within reach. Not as good as a button around my neck, but close.

But what of the response? Will the responders know how to do Pearlsky’s total daily care? No. If I die tonight, will anyone know? No. But those who do know the pieces will get together and quickly figure out the big picture. I have contemplated making some videos of her care, but somehow that creeps me out. Not sure why.

The woman who emailed seems to have minimal, if any, help and that confuses me a bit. Are there others in such a situation?

Thanks! And keep on keeping on and all that.

PS I’m ecstatic to find someone who hates the Welcome to Holland crap as much as I do!

I appreciate the email and let’s see what others have to say.

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