If you don’t already know, Sophia has a rare condition called Prader-Willi Syndrome. It’s a missing chromosome that affects mostly her hypothalamus, which controls a lot of her basic life functions – hunger, thirst, temperature regulation, growth, hormones, etc.
She was diagnosed early on so I have been managing her challenges for nearly 6 years now, from therapy, to special education, to special doctors, to behaviors, to helping her get through the day sometimes. It could be worse, but it definitely isn’t easy. I initially joined several groups to help myself get through the challenges, because in order to survive something like his, you need a strong support system. And who can be better support than people who have been there, or are going through it? I joined a lot of Facebook groups, and I became heavily ingrained in the Facebook PWS world. And I still am. I still read posts for advice and guidance. But sometimes I do come across posts that are just maddening.
Sometimes I come across posts that criticize the parents of the younger children of being too hopeful and having too much of a positive attitude towards the condition. Look, I get it. It’s an ugly condition to have. Nobody could ever think that a condition that makes you feel hungry ALL. THE. TIME. is a good one to have. I certainly don’t. But if we aren’t allowed to have hope and think positive, how are we supposed to survive this?
I need to believe my daughter has a chance in this world even if I need to be prepared that she won’t.
I need to believe that one day, the hunger will go away even if I need to be prepared that it won’t.
I need to have hope, or I might as well drive my entire family off a bridge right now.
And what is absolutely baffling to me is that sometimes we’re accused of being privileged because we have happy families and have money.
Let me stop you right there. I walked away from a very long-term relationship with nothing but my kids, and I was adamant on taking the car. I had no money, no job, an unfinished education because I had to make decisions to sacrifice all that to make sure my daughter stayed healthy.
I WAS a single mom. And I worked hard to rebuild a life for me and my kids. It was a blessing that I found someone in the process who loves my children as if they were his own, but honey, don’t be fooled, everything I have right now came from having to start from the bottom all over again, and working hard to earn money, respect, and my life back.
I did NOT have money, and I still DON’T have money. I am in debt, trying to provide for my family, and I make sacrifices ALL the time to make sure my kids have what they need, and pursue their dreams, and live comfortably.
My positive attitude does NOT come from privilege, but rather lack thereof, and it is a conscious decision I make every single day to make the most of everything I have, and work on getting what I don’t and knowing that everything I have is worth way more than everything I will never have. My positive is a decision.
Do NOT accuse me of being privileged.