Category Archives: worry

Sniffles should be a piece of cake

A year ago Bridget and I almost spent Christmas in the hospital. She had been so healthy and then BAM! A week before Christmas she was so sick we almost lost her. Again. That she was discharged on Christmas Eve was all the gift we needed.

2015 has been a good year for Bridget. No hospitalizations. Her doctor’s visits have been uneventful. Kindergarten started and she has made friends. We are merrily living our life and I was just starting to feel like we did not just survive 2015. We triumphed over it. Continue reading

Challenges related to a disability

Last week I was late and well, I’m still technically a week behind the postings. This week’s prompt in the Summer Blog Hop Challenge: Talking Raw, Talking Real: Challenges Related to a Disability. 

I kind of wish Boo could write this post. Or Abby. I bet they would say, Challenge? What Challenge?

The truth is, though, loving a child with a disability doesn’t mean you do not see their challenges. They are pretty out there. If you see Boo you might say her challenge is communication. Or motor planning (then you didn’t see her climb on the counter and remove all knives from the strainer to get her Sophia cup). 

As I am unsure how Boo would perceive her challenge, I will explain how being a parent of a child with a disability presents a unique situation. 

The true challenge related to Boo’s disability is that sometimes I am not sure if I am dealing with her disability or if I am dealing with toddler-like behavior. I waffle with pushing too hard to not pushing enough. I make allowances where maybe I shouldn’t. 

I wonder when I pick Boo up and carry her am I doing it for her safety, because she cannot walk that far or am I doing it because it is just easier?

Searching for schools, daycare centers, camps…a whole other challenge. Recently I was talking with a friend whose son has a cardiac condition. She was sending him to “real” camp for the first time. Not a special needs camp. Not a camp that was prepared to deal with health concerns. When you have a child with a disability every decision you make is important. In P’s case if her son has a cardiac event will the camp be prepared with how to help him? In Boo’s case if we decide to send her to camp will they understand she wanders? That she has a sensory processing disorder which may make activities difficult for her. That she turns blue if chilled and red/clammy when overheated. Each decision we make has direct impact on our child, the other children in the school/daycare/camp and their caretakers. Unlike Abby where I basically drop her off in the morning, P will have to make sure that she reiterates every day what to do in the event of an emergency.

That is something a parent of a “typical” child never ponders.

We worry more. Sorry, but we do. I worry more with Boo than I ever do with Abby. Every decision we make we have to balance on: is she safe, is this challenging enough, does she have enough support? I research every activity she does before it happens. 

Abby? Not so much. She wants to start riding, okay let’s go to XYZ barn. I knew nothing (and still do not) about horseback riding. I didn’t even know we should choose a style. Boo on the other hand? I never would have allowed her to begin riding without doing a few hours of research on the best type for her skill level.

It is hard to define the true challenge as it relates to Boo’s disability because she doesn’t have just one disability. Our challenge becomes balancing working with her disabilities while determining what is typical behavior. 

Even if it means we worry more.