Some days are harder than others as a mama to a beautiful daughter with special needs. Some days Kasey seems no different than a typical child. The only difference sometimes is that Kasey crawls or uses a wheelchair to go around. However, there are days like yesterday where the whole afternoon is tough and a reminder of how much Kasey is going to have to miss out on because of Spina Bifida.
We were invited to a birthday party and I decided to be brave and take both girls on my own even though we just got back from a 13 hour trip in the car. I realized as soon as I got out of the car and started to put Kasey in her wheelchair that things were going to be difficult. There was a slight incline to get to the front step and then I would have to lift her. Thankfully I had Kora on my back in a carrier or it would have been impossible. WE got inside and I breathed a sigh of relief because the floors were all hardwood or laminate so Kasey could get around. I soon realized though that we were all going to be outside for the party… and my heart sank.
Kasey was excited because she was going to get to play in some kiddie pools but did not understand why I said no to taking her chair outside. It wasn’t flat ground and I knew that if I took her out in her chair she’d cry cause she couldn’t push easily or she’d cry cause she was “stuck” or that she thought she was going to get hurt.
I finally convinced her that playing in the grass would be fun. Of course, then she noticed a bug and flipped out and it went downhill from there. I know part of the problem is that she’s at a very emotional hormonal age and that everything sets her off but part of it was the fact she couldn’t walk. Two other girls her age were running around “racing” and she was heartbroken because she wanted to run. She kept asking me why she couldn’t and I had to remind her that her legs do not work like theirs. She’s like “make my legs work mama.” My heart broke.
ON days like yesterday I think about the future and wonder how much she’s not going to be able to do. I know there is so much that she will be able to do but thinking about how she’s never going to feel what its like to run barefoot in the grass breaks my heart. She won’t ever feel the sand between her toes at the beach.
I Just wonder if its ever going to be easier for this mama to deal with. Will I find peace with it? Or will I constantly be in this cycle of acceptance and then sadness.