Since posting yesterday about the unsettling discovery I made about Penelope’s schooling, I have had some time to think about things. Learning that Penelope will not be able to go to the same school as Charlotte has really upset me. I feel almost as sad as I did the day we learned of her diagnosis. In mere moments, the vision I had of Charlotte looking out for her little sister at school; of dropping them off and picking them up together; of watching the two of them in concerts; of knowing that Penelope would feel safer and more comfortable in an unfamiliar environment with the knowledge that she is in the same building as her sister; of Penelope being integrated with her peers- all of that has evaporated. And I am still reeling from the shock.
It just doesn’t seem fair. How can the school board ask this of families? To separate siblings; to make one feel excluded and inferior? I would like to find the person responsible for this policy and ask them how they would feel if it was their child who was being treated this way.
I think another reason why I am so upset about this is the fact that it is forcing me to consider Penelope’s future. I can keep my positive attitude pretty easily when I am focused on the present. I can handle the day-to-day challenges with relative ease. I can revel in the progress she makes. But when I have to look at the big picture and think about what the future holds for my sweet baby, I get scared and sad.
The reality is that she is significantly delayed. And although she has made a lot of great progress- progress I am extremely proud of and happy about- that gap between her chronological age and her developmental age is widening. I have to wonder about whether or not she will ever be able to live independently. Will she be able to have relationships and form friendships? Will she ever be able to have a job or receive any higher education? And I grieve to think these basic things which many people take for granted may be out of her reach.
I find myself in mourning yet again. Somehow, some way, I know will find my positive attitude again. But for right now, I feel sad. And that is a difficult admission for me to make. I am an optimist at heart. I always try to find the positives in difficult situations. It’s hard for me to admit that I am struggling to do that today. I think this discovery has knocked me a bit off balance, and I hope that in a day or two, I will find my footing again, and I will be able to reassure myself everything will be okay.