Sickle Cell Disease and the Journey of Virtual Education
Last updated: March 2023
A new virtual journey
Last year I wrote an article about the challenges I encountered at my daughter's school. Some of the accommodations we had in New Jersey for the 504 plan we don't have them in Florida, so she misses a lot when she's sick.
Although she is doing much better here, as a mother I still felt the need to give her better support at times when things were not going so well. By this, I don't mean hospitalizations, but also moments of a pain crisis at home or being uncomfortable. On days when she is not feeling well, she goes to school late or does not go to school.
Decisions to make
October last year, after a number of intense discussions with the school, I decided to enroll her in a virtual school. There were several options and after research I chose a virtual school that best suits my princess.
She has now been at her virtual school for a few weeks and she likes it very much. Especially with the cold weather, I feel comforted knowing she doesn't have to go outside and be at risk.
From the moment she was officially admitted, it was a big party at our house. We have redecorated her entire room, making everything as beautiful as possible so that she feels comfortable and motivated.
Virtual school gives us the opportunity to enjoy life together in a special way. We can have breakfast and lunch together, in between meetings and classes we can be together, walk her dog, and if something happens at school or she has a question, I am immediately there to help or guide. This has been the best choice I've made for my little princess so far.
I see her grow enormously as a young beautiful girl. She is so independent and I feel proud when I see her busy managing her meetings. The other day I asked her how she feels about going to a virtual school and if she still likes it. She indicated that she really enjoys it, but she needs to work harder than regular school. I understood what she meant, because sometimes when I listen in on the meetings, I hear those conversations. I think the kids are so mature. It's so nice to see how smart children are.
As parents, we are the greatest advocates for our children. My only goal is for my child to be healthy and successful in her educational journey ahead. And sometimes that means that I approach things differently than I am used to. I believe that when my daughter grows up and looks back on her childhood, she will look back with a sense of happiness, love, security, understanding, respect and joy.
We are on this journey together
Why am I writing this article? Before I took this step there was a feeling of uncertainty, because it is new and I didn't know if this was the best choice. But during this journey I spoke to a few mothers who also have children who went to school virtually and those conversations have given me that peace as a mother. I hope that my story can also give other parents that peace and belief in yourself.
The most important thing in this journey is that my princess knows that she is doing it TOGETHER with me and that she will never feel alone. She can handle the world because she believes in herself thanks to her support system.
I'm looking forward to sharing more experiences about our new virtual journey.
Are you interested in connecting with other sickle cell warriors?