99 percent of the time I do not even think about Spina Bifida. It doesn't cross my mind and most days, parenting Grayden is no different than parenting Zander. Don't get me wrong, parenting in general is hard and is definatly a learning curve, but the same things that I worry about for Zander, apply to Grayden. But some days, out of nowhere the wind is taken out of our sails and we are forced to have to think about SB and decide how to navigate. We are forced to have to pull out our roadmaps, consult with our friends, and put on our advocate hats. Friday was one of those days.
I have to start by saying that growing up, I was never good with things not being fair, mostly if it had to do with my sister. Maybe it was a second born thing, but I hated it when things didn't feel or seem fair. I thought that I had gotten better with the whole idea of "sometimes life isn't fair", and that I had matured over the years, but now that something doesn't seem fair for my child, well it just plain sucks!
We are beginning to plan for next school year regarding who will be going to school where, and who will be watching Kinsen and when. My mom is retiring and has offered to watch Kinsen and Gray two days a week, which means we need to find care for them the other three days a week. One of our neighbors has offered to watch Kinsen and I was hoping to find a three day a week, all day preschool for Grayden (which is very difficult to find, as most preschools do not design their time around two working parents' schedules). I found out yesterday that the preschool that Zander has been going to since January has openings now in their three day program, so I was relieved to think that we had found our solution, until I found out that they were not willing to accept Grayden, because he does not meet their requirement to be potty trained. And to this I say "It's just not fair"! It's not fair that they can not allow him access to their program over something that he has no control over, something that we are working on, but is going to take time and problem solving.
So now I sit here trying to decide, do I fight and advocate or do I decide I don't want him there if they are not even willing to consider how they could accommodate for him?
The good news is, I love the childcare program at my school, where Grayden currently attends. His teachers are amazing and Grayden LOVES it there. He can stay there until he goes to Kindergarten, but they don't do part time care (we would pay for full time, even if he only goes three days), and the majority of the kids are between 2 and 3 years old, so I was hoping to eventually give him a preschool type experience with older kids before he goes to Kindergarten.
I am mad, sad and frustrated! I am sad for Grayden that he doesn't have the same options as Zander did for preschool! I am mad that it feels like he is being discriminated against! And I am frustrated that to even possibly get him those opportunities that I will have to advocate and fight and spend extra time. Of course, I am willing to, and I would travel to the moon and back for my kids, but sometimes it is just plain exhausting to think about! And mostly, it just doesn't seem fair, and I am just not okay with that!
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