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.

Tuesday, 16 June 2015

Small update

The stroke is worse than we thought. Mike is looking at a 3 month inpatient rehab program, with outpatient rehab to follow. He has major deficits on his left side, especially his left hand.  He is using a wheelchair to get around, which is one of the reasons he is totally hospital bound right now. He can't yet safely transfer into a car or do any sort of stairs. There is no where in the hospital where it is safe to have a visit with the little girls.

It was a disappointing day, to say the least.

Because we are in a major stroke centre, Mike is involved in a number of research
Studies on stroke patients. Here's a few pics of him in the robotics study:





Monday, 8 June 2015

Dad happy?

Phoenix witnessed Mike come downstairs Wed morning and being unable to walk straight. She witnessed the paramedics treat him at our house and she saw them take her dad away.

These are pretty traumatic scenes for most people to experience, let alone a 5 year old with an unknown understanding of sickness, hospitals and major health crisis's.

The most important thing that Phoenix keeps wanting to know, is "Dad happy?"

On the surface, this looks like Phoenix has only a basic understanding of health, wellness, doctors, hospitals etc. She only wants to know if her Dad is happy, right?

Part of Phoenix's personality is to be extremely empathetic. She HATES it when other people are sad around her. It makes her very upset and she cries herself. She just wants everyone to be happy.

So I could look at Phoenix's statement, and think that she doesn't really understand.

But what if she does? What if she understands that when we break very complex ideas like quality of life down, that these ideas can be summed up with one question: Are you happy?

We are lying to Phoenix right now when we tell her that Dad is happy. He is not happy. In fact, he has probably never in his live been this unhappy before. But this is the ultimate goal of his rehab, isn't it? To regain the function that he has lost. To relearn the skills. To retrain his muscles and his brain. To regrow damaged neural pathways. To regain his happiness. To be able to eventually answer Phoenix truthfully that he is happy.

I know lying isn't the best policy, but I think it is best for Phoenix and it is the best for Mike. It reminds Mike what he is working towards. It reminds him who is depending on him. It reminds him not to wallow in the unfairness and to get stuck in the regret.

Fake it till you make it. That's what he is going to have to do, because we are all depending on him to come home to us, however that looks like.