There is a heaven… and a hell

I’m writing this with my second glass of wine in hand so we’ll see how this goes. And…I have at least 3 other blog posts on the go – so stay tuned, but I felt this was what I was supposed to write about today.

We have very few actual good (ok, I mean, great) days with our Panda. The last time we had a “great” day was February 26th and that was the first day in months. Yes you heard me months! ONE. GREAT. DAY in MONTHS! Pretty much unbelievable for most people. But I’m sure it’s something that other PANDAS parents are all too familiar with. It is April 6th as I’m writing this and the last “great” day we had was February 26th!!! When this happens, and you can see it is a rare occurence for us, we just soak in the deliciousness of the day as much as possible. It’s like someone has taken our son with PANDAS and left us with the lovely, pleasant, easy-going child we remember who does not have OCD, anxiety, tics, or rage. We actually feel like we’ve been transported to heaven. It’s like we have been given our beautiful happy son back, for now. Today, he was even writing his Christmas list to Santa.

When this happens, we feel lighter, freer. We can breathe again. Life is enjoyable and happy. This must be what it’s like to be a “normal” family. But, and there is always a BUT… we know that tomorrow could be hell on earth. And it was, last time, on February 27th. On February 26th, he was exposed to a friend who was getting sick and the next day was pure hell. PANDAS kids are like radars for illness. And the angel who was gifted to us on February 26th was taken and replaced by what seemed like the devil on February 27th. That sounds harsh and a terrible thing to call your own child, but deeply, sadly, it’s what it felt like.

When we have this day-in-heaven, I can completely understand why other families have loads more children. Completely understand. If it wasn’t for the fact that I have progressively worse pregnancies where I vomit so much I can’t even keep water down, and even worse deliveries, I would want more, many more, of these lovely creatures who make my heart swell with impossible love. It’s a miracle we have two children. We often joke that our son tricked us into having a second child. He was having a few good days back then and we had always wanted two children, and the experience of raising a boy and a girl – so predictable – yes. And, fortunately, 9 months later, we were blessed with our baby girl and got exactly the family we wanted. Kind of.

So today, on what was actually a pretty dreary weather day, I soaked up my happy-go-lucky sweet boy. I fully enjoyed his company, how his intelligence, insight, and sensitivity continue to amaze me. I put him to bed and whispered gratitude and prayers knowing full well that tomorrow he might be taken from us again. That tomorrow could be hell, but hoping with all of my heart that it isn’t.

xo

 

 

 

2 thoughts on “There is a heaven… and a hell

  1. Hard to believe there are so many of us suffering from this kind of lifestyle. Our 3 year pandaversary is next month on May 24. We have been blessed to have gotten our son back for months now, following a strep infection in the Summer, but I always worry about the next one…

    1. I’m so happy you have your son back and I hope he continues to do well. But I know it is a huge worry all the time that strep or something new will make these kids flare again. It is unbelievable how many of us there are suffering (usually in silence) with this terrible disorder that’s robbing our children of their childhoods. I hope you’ll keep reading.

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