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.



7 thoughts on “Reflection

  1. Julie,

    She WILL do many things. She already knows friend/family from stranger, so she will make friends. There are so many opportunities out there and Penelope has the best thing- a mom who will search them out, find them and fight for them. She is special and other people will learn that just the way you have- she may do it in her own time and in her own way, but she seems more amazing and inspiring everyday. She doesn’t hear it when the doctors, the specialists, the stranger say what she can’t or won’t do- she just keeps being and growing and loving. I know you have lost hope at this moment, but you’ll find it again. She has years to go before she’s ready for school and there will be so many changes, in the school, in your home, in the world before then. Try to remember you and Penelope are amazing, and that even people like me who barely know you have really come to believe. Sending all the positive energy I have your way today.

    • Thank you, Ali. It means so much to hear that. I do know all of that, logically, but some days it is hard to truly believe it. Thank you for giving me a wonderful and timely reminder.

  2. Just keep doing what you have been doing Julie because from where I sit, you have been doing an awesome job! One day at a time is good advice for all of us because “worrying about tomorrow takes the joy out of today” as the old saying goes. It is normal to have those moments of doubt and uncertainty about what the future holds … just don’t let those moments hold too much sway. When the time comes, you will make the right choices for Penelope and regardless of where she attends school, she will be just fine because she has you in her corner. The smile on her face in the photos that you post speaks volumes. She is a very loved and happy little girl. BTW I loved what your friend Alison said …. very wise words.

  3. I endorse the above comments about taking it one day at a time Julie. You never know where life may lead you. You can only live in the present (which you’ve already said you can handle) and never in the future. As a father I can understand that you want Penelope to go on and live life to its fullness. But I hope you also know that God loves Penelope as much as anyone else in this world and this has nothing to do with what she does or achieves.

    • Thanks for the support, Dave. I am feeling better about things after spending the day with Penelope and seeing how happy she is- her happiness is what matters most to me, so I’m just going to stay focused on that.

  4. Lucas went to a different school then Oliver and I. To this day, my dad has nothing but great things to say about the program at his school.
    Mom loved the program as well, she used to tell is that Lucas went to his own school with his own friends because was learning different things then we were.
    Id like to think the school board does things the way they do so the program can be its very best.

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