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.

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:

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.

Update

Today marks 4 days since Sday. It's been pretty stressful, but today there had been a slight easing of the pressure and devastation we all have been experiencing.

The worst day by far was Thursday. For me that meant a frantic scramble to get a sick note for a leave of absence from my teaching position. This involved 4 calls to my doctors office, 3 visits to 2 different walk in clinics because it turns out that only the clinic your family doctor is in will provide you a note for a stress leave because another walk in clinic couldn't possibly verify second hand information and it wasn't as if the stroke happened to me. 

That doctor (and his receptionist) were given a piece oft mind for agreeing to take the appointment at all when I was very clear from the beginning what I was looking for. 

Kudos to me for despite losing my shit a number of times that day, not once did I verbally insult or personally attack anyone   

There were quite a few F bombs dropped, there's no doubt about it, but I kept my head (and ethics) despite being in the middle of a stress meltdown. I rock.  

I finally did get my sick note, but it involved loading all three kids into the van in a rainstorm and letting Phoenix go where ever she wanted in the doctors office, just to prove a point (that they should have given me an appointment and not made me come as a walk in).

The low points were contrasted with some surprising moments of levity. Like when the stroke research assistant was chatting with us and I asked her how many research participants she gets a day. She replied "Well, on a good day I get 3!" 

I got to use my ironic "You didn't REALLY say that out loud did you?" look that I save for when people make total assess of themselves because they speak without thinking. We were all good natured enough to laugh it off, but my feeling is that she'll never say that to anyone ever again. 

There was also the emergency room nurse who told is about how bad her day was because it was a new hospital and she couldn't find any of the supplies. 

Or when the neurologist told us that we should be optimistic about Mikes recovery and I replied "Oh, don't worry, Mike's full of optimism, he's an Oilers fan". 

Yesterday seemed to be the worst for all of us. Mike was pretty low about the loss of muscle strength in his left arm and just how long a road it could be to get full function back. And I feel bad for Mike, at what he is going through and that this happened to him at all. 

Phoenix is a bright point for Mike, and an area where I can emphasise parallels. "Look how long it took Phoenix to walk, but she got there, didn't she?" "It's harder for her than the other kids but she always keeps trying". It's really inspiring to be honest. Because she does keep on trying, again and again. She's a fantastic role model for Mike to have. 

Right now we are telling Phoenix that Mike is with the doctors and that he is happy (she's very concerned that he is happy so we emphasise that he is). She didn't react too well to him on Fri during a visit, I think because she picked up on the intense emotions he was feeling about the stroke and about fatherhood and how it will all look like with this new disability. 

I'm hoping that everyone has calmed down enough that we can have an enjoyable visit tomorrow. As important as it is for Phoenix to see her dad, it is even more important for Mike to see that he can be a good dad, even with the loss of some of the function of his body (hopefully temporarily).

That's it for now. I'll update soon. 

Major family setback: stroke

Yesterday I got a call at work from my mother. She told me that the paramedics were at my house and that they thought that Mike had had a stroke.

Time seemed to slow down. I was hoping that my mom and the paramedics were wrong. I didn't know what to expect  and it was toturous to wait in a 30 minute triage line just to find out where my husband was and what his condition was. 

I finally found him and he had been given a bed immediately.  It was definitely a stroke. Mike told me, slurring out of one side of his mouth "There's nothing they can do". His devastation was obvious. 

It's interesting the words one clings to when they hear upsetting news about their health. He didn't remember "It's mild" or "The blockage is gone". The first words out of his mouth were "There's nothing they can do". 

But for some reason, it didn't faze me. Because there's nothing they can do about Down syndrome either and look how great Phoenix turned out. 

So it's a stroke. There's weakness on the left side of Mikes body. It affects his arm and leg, his balance and his speech. His mind and memory are fully intact. It could be much worse. It could be so much worse. 

But this is life. He's alive and with us. There is still much to be thankful for today.  

Wordless Wednesday

 

Micro preemies and the disability bias

I read an article this weekend about the ethics of treating micro preemies.

The article talked about how the commonly accepted protocol right now is to deny life saving measures to babies born before 23 weeks. One of the reasons given for this policy is the large percentage of these babies who end up having disabilities including cerebral palsy, blindness, lung disease etc. However, a small number of these babies, even those born in the 22nd gestational week, survive and prosper with no discernible disabilities at all. 

An excellent point that was brought up was the inconsistency of how and when doctors recommend life saving measures. Because if a teenager was badly hurt in a car accident, that all efforts would be made to save their life, even if there was only a 22% chance of surviving and a 9% chance of escaping without disability. These are the exact statistics of the survival and disability rate of micro preemies born at 22 weeks.

It was also mentioned that babies born with Down Syndrome are treated with life saving measures, despite the fact that almost all of them will grow up to experience serious disability. It has finally been recognized that it is unethical, immoral and unconscionable to deny medical treatment to an entire group of people solely based on their diagnosis or their disability.

However, when looking at the micro preemie issue, it is easy to see the disability bias which continues to runs rampant through the medical community. There is no other reason for doctors to deny or withdraw life saving measures to micro preemies other than the high chance of disability.


This article brings up some important questions which need to be examined at a deeper level.

Why are doctors counselling against life saving measures in the case of micro preemies if there is a chance that these babies lives can be saved? 

Why would a doctor counsel one set of parents to pursue all options to save a child, and counsel the second set to let their child die where the only measurable variable that differs is age?

Why is disability so frightening to these doctors that they believe that it is better for babies to be dead than to live a life with disability?

Why would you think that it is better to grieve a dead child, than to have the experience of raising a child with a disability?

What makes doctors experts in the quality and value of a life, with or without a disability?

Why do doctors feel that it is their right to attempt to qualify what a meaningful life entails?

There are questions I am still trying to answer for myself, because they are totally bewildering.

I can't understand how a doctor with little to no experience with disability themselves would feel competent to counsel others on what to do in the case of child having a life long disability. What insight could they give?

How could they possibly understand the joy and heartache that can go hand in hand? How could they understand the fierceness for which you fight with your child to make slow gains? How could they know the feeling of bursting pride when a new skill is learned? How do you quantify that? How do you measure it?

How do you measure the impact of a child's presence in your life?

The answer is, you can't. You can't qualify these things. And because you can't, they are ignored by the medical community.

So that parents of micro preemies aren't told about the positive aspects of parenting your child with disability. In fact, they are often actively discouraged from letting their child live as well as being given the worst case scenario for the child's outcome.

I have to wonder, how is this possibly considered to be best practise? How is this the ethical way to treat parents and children at one of the most vulnerable times of their lives?