Tuesday, 23 June 2015

Letting the sadness creep in

I'll start this by saying that I am a tad bit sensitive these days. Spending all my time trying to balance babysitters and the household and driving back and forth to the hospital is taking an emotional toll. None of us have the reserves any more to deal with the unexpected or the challenging or when something is upsetting.

So when things like this happen, I can normally brush them off.

Today I couldn't.

A family member came over today to babysit so I could visit Mike and then have an important celebratory dinner out with close friends. It was an incredibly kind gesture, and one that I appreciate immensely.

However, the fall back reaction of many of Mikes family members when they don't understand something is laughter. They laugh. It's a great quality and during family get together there is a lot of humour and frivolity.

Today this laughter hurt. We are making a big push at potty training right now. It's a difficult process not just because of the body awareness and control needed, but because of all of the skills which are also necessary. Putting the potty on and off the toilet. Pulling underwear or pull ups and pants up and down. Putting the stool in front of the sink. Pumping the soap and turning the taps on and off. There are a huge amount of steps involved, all of them impacted by Phoenix's low muscle tone.

Yesterday Phoenix peed on the potty 5 times. This morning she peed 4 times before her poop accident. I'm extremely proud of her and more importantly, SHE is very proud of herself.

So today, when this family member noticed that P was in the bathroom and looked in, she laughed at Phoenix for sitting on the potty with her pull up still on. She laughed. Am while I know that this family member would never do anything to intentionally hurt my feelings, I look at this situation and see that Phoenix was laughed at because of her disability. Because this person, like so many other people, does not recognize that DS is a physical disability. That her low muscle tone makes it difficult to pull her pants down and that unfortunately Phoenix gives up when frustrated. The result of which was her sitting on the potty with her pull up still on. And she was laughed at.

Today my heart hurts. Not because of Phoenix, or because of Down syndrome, but because of ignorance, and a little bit because I have failed. I've failed in teaching the family about the scope of Phoenix's challenges. I've failed about educating them.  I failed to remind them that DS is a whole body syndrome. But how could it be otherwise? The extra 21st is in every part of her body.

Today the steely case that protects my heart cracked and sadness crept in. Because I do not have the resources or the resilience right now to keep it protected. I just don't.


  1. This makes me so sad. While I understand that out of context it is a funny image, it isn't a funny situation. Especially with all that is going on in your family at the moment. I hope you are feeling a bit better today.

    1. Thank you. Today is a better day! And I finally got around to replacing the toilet seat with one that has a potty in it, so a step has been taken out of the process! I'm excited to see how P handles it.