When the wheels fall off…in public…

I met a group of mums not too long ago who all have kids a bit older than Wade. As we were talking, a few mentioned how the feelings of grief that some have after diagnosis can reappear at different times, usually around transition times as our kids move from one stage of development to another, like starting school. On an intellectual level, I felt strange about this. In my mind, I have already dealt with the feelings I had around the time of diagnosis. I know that my fears were mostly misplaced and I am so truly in love with who Wade is. I don’t feel like I have lost anything by having Wade. But the more I thought about it, the more I realised this is exactly what has been happening to me over the past few months.

As Wade is getting older, the developmental gap between him and his peers is getting larger. My logical brain tells me that this is ok. I know he doesn’t need fixing or to be made “normal”. I know his value is the same as everyone else regardless of his achievements but as a parent, the universal feeling of not doing enough is a monkey on my back.

I want full inclusion for Wade. I see it as an important goal and one that is not only possible but worth fighting for. The problem is…as Wade is getting older and becoming more of his own person with his own strengths and weaknesses, I am starting to ask myself whether my desire for him to be included in any and every facet of life, is more about me than about him. Trying to balance the concept of “the more I put into Wade’s development the better off he will be” versus “the more I embrace and nurture him for who he is the better off he will be” has been driving me crazy. Continue reading

Part 3. 20 week scan

Before I start telling the story of my 20 week scan, I want to tell the story of what happens when I take Wade out in public. Today I went for breakfast at Marios’ in Fitzroy, where I used to work. If you want to know what the world looks like when everyone is smiling and happy….push a pram with Wade in it. Walking along the street with my happy bundle in his blue glasses who makes eye contact with almost everyone he sees, turns complete strangers into a gooey mess. Almost everyone smiles, some people comment, a few ask questions about the glasses, children giggle at him. Trying to walk along or do the shopping usually results in me having a few conversations with complete strangers, which is lovely. I sat in the front window and sat Wade on the bench so he can look out the window. Watching people’s faces light up as they walked past the window and lay eyes on him and smile, makes me realise how many days he brightened, if only for a minute.

There’s a language warning on this one because sometimes “golly gosh darn it” doesn’t convey the gravity of the situation!

The time between my 12 week and 20 week scan was spent mostly searching forums on the Internet trying to find examples of when test results meant nothing. I would swing wildly between positions of being completely at ease with the possibility of the baby having Down Syndrome then completely in denial about it. These things happen to other people and all that. Continue reading

Part 2. 12 week ultrasound

Counting down the days to my 12 week ultrasound was excruciating. I was so excited to see my baby growing inside of me, I thought the day would never come.
After being called in, we were asked about the blood test and the dating scan. I told her that we hadn’t had either done as we did not want any Down Syndrome testing. And with that, I lay back and watched as my baby appeared on the screen. Just like that. As soon as she put the instrument against my belly, a little person appeared on the screen and I wept openly.

I watched through blurry eyes as she took this measurement and that measurement. Then the same measurement again…and again…and again. I was cooing and sighing and looking over to Mick with the look of wonderment at the miracle I was observing. The baby was kicking up a storm, wriggling and twisting all over the place.

Mick didn’t say much, and the sonographer didn’t say anything. Continue reading