Can you remember what you did on Valentine’s Day? Do you recall what, if anything, you were given? The picture on the card? My memory of the card, celebrations and gifts is sketchy (sorry, Gary, I’m sure they were lovely). It seems like forever ago, doesn’t it? Well Valentine’s Day this year was the day I took Lottie to hospital to have her blood and genetics test done.
16 long weeks have passed since that day. 16 weeks of wondering, worrying, trying not to Google what conditions might cause Global Developmental Delay.
16 weeks of hoping that by mixing our genes, Gary and I hadn’t unknowingly passed on a condition which was causing her struggles.
16 weeks of driving myself a little bit mad.
So, yesterday when we received a letter from Lottie’s paediatrician explaining all of the bloods and genetics test results were in the ‘normal range’, you can imagine the relief I experienced. Huge, wonderful and liberating relief. So enormous in fact that I was a little tearful (not at all unusual for me to be fair).
Her microarray CGH did not detect any clinically significant copy number changes. I had to google that last part if I’m honest. Apparently it’s a test which looks at thousands of sections of DNA to identify any deletions or copies.
A weight had been lifted. A positive result at last and some much needed good news.
I know rationally that Lottie is unlikely to ever be developmentally the same as her peers. We were told that if children do catch up, they tend to do so before they are two. There is a slim chance, but it’s probably pretty unlikely.
Yet something somewhere in my head was saying that if genetic problems had been largely ruled out, perhaps she was just a slow starter. Maybe she would start to hit her milestones and in years to come we’d wonder what we’d ever worried about.
It’s human nature to always retain a bit of hope, isn’t it? It can help us through the worrying times.
But then came the good old mum guilt. If the genetics test results weren’t showing a condition causing Lottie’s delays, was it something I did wrong? Did that glass of prosecco at Christmas while I was pregnant affect her? Did I eat something wrong without realising? Was I too stressed and tired out at work to give her what she needed in the womb? I could go on, but you get the idea.
The feeling of guilt as a mum is ever present. But I’ve really felt that ramp up since we had Lottie’s Global Developmental Delay diagnosis. I feel guilty that she will struggle, not me. I feel guilt that perhaps I did something wrong as a mum to contribute to her delay. Again, the list goes on.
And there’s my old friend, worry. Again, it’s what parents do about their children, but I’ve felt a whole new wave of worrying recently.
What if we don’t ever find the cause? Will we be able to help her in the way she needs? Will we be able to offer the right support? A big worry for me is that we are doing our absolute best by Lottie to give her the chance to meet her full potential. I really feel I need to know exactly what’s going on so that I can become an expert in that particular condition and be the best carer, mum, supporter, that I can possibly be. And if we never know what’s causing the delay, how can I possibly do that?
But after all that, my overriding emotion is still relief. That’s the feeling I keep coming back to. And it feels bloody wonderful.
We’ve crossed off all of the initial possible conditions from the first paediatrician appointment now. Her hearing is fine, they don’t think she has epilepsy, her bloods and genetics test results are in the normal range. How lucky we are that thus far, we’re not faced with a scary condition that so many others have to deal with. How lucky we are that so far she is showing up healthy and still rudely happy.