Gentleness – it helps

I have read oh so many articles and blog entries about a range of acceptable and unacceptable ways to speak with a parent of a child with special needs. 

In each one, one common theme that struck me was how unacceptable it is to ask another SN (special needs) parent ‘what is wrong with your child?’ 

Today, for the first time, I was asked this very question.

My response?

Nothing.

How did it make me feel? 

Terrible actually. 

There is absolutely nothing ‘wrong’ with my child. Wrong, by definition means, ‘not correct or true, inaccurate, inexact, invalid, untrue, false, faulty …’  and the list continues. You get the picture I’m sure. 

When I responded, I simply said “nothing” and followed it with, “he’s beautiful.” I knew what she intended to say but I answered her in truth and I meant it. He is perfect to me. Yes, he has challenges but this does not define him. I don’t want this to be what people remember about him. He has so many other beautiful qualities.

 Just ask and I will tell you. Or don’t and I will anyway!

The lady then asked if he will ever walk. I said, questionable. I don’t know this?! I find that most people ask this which tells me that we have become so square. Black and white. That we need to define people based on their ability to meet milestones. 

Does it really matter in the end?

I think not. 

What about making sure your child feels happy and safe. 

That’s all I care about.  

 

A short dream

Dreams. 

I enjoy dreams. I don’t have many dreams as sleep is so often interrupted. However, the times I do dream, I like to dwell on them a little. Think about what it might signify about life or how I’m feeling at the time.

I do not recall having many dreams during my pregnancy. Since having Thomas, I don’t think I’ve had more than a handful of dreams about him. I wonder why is this so? 

I had a rare dream about him the other night. I shared this with my husband and I had decided that although the dream was fairly pleasant, it was a reminder of a reality that is the not so distant future.

It made me reflect on why I dream so little about Thomas and how he features in my dreams. I do not often see Thomas in my dreams. He is present, but never visible. In my dreams I find this unnerving because I would wish to see him in order to know that he is safe. 

The other night I did not see him but I heard him. He was crying. It was because he was being held by a person who did not know how to hold and comfort him. I remember telling them how to comfort Thomas. During this time I was trying to remember how to put together Thomas’ new wheelchair. I was struggling to remember how to put it together. It looked like silver, and very shiny – brand new in fact. I was feeling frustrated for not knowing how to assemble it. We needed it for Thomas to get onto a plane. It was just Thomas and I and this other individual who was tending to Thomas. I figured it was a minder for the flight. Where we were going I have no idea?

This was my dream. Just a short one but it left me thinking about the day that I know will be coming when we will receive a wheelchair specifically fitted for Thomas’ dimensions. I will diligently listen to the visiting technician tell and show me how to use it and then will come the first time I actually do use it and I will hesitate. I know this because it happens everytime Thomas receives a new piece of equipment. Equipment that is big and complicated. Equipment with lots of straps with loud Velcro which Thomas abhors. Equipment that is a necessary requirement for Thomas. 

I recall the dreams that I used to have back when Thomas was maybe 6 months or so where I saw him crawl or walk. I remember how beyond happy I felt to see him do these physical feats and then I woke up. It was a nice feeling but it wasn’t a reality in our distant future. This I knew. 

I don’t have these dreams anymore.