Whether you know me personally or have followed me online for a while, you’ll know that I post a lot about Marcus. I like to think that I’m raising awareness and perhaps helping other parents who find themselves on this path that we never would have chosen for ourselves.
The path, I stupidly thought I had avoided during pregnancy by dutifully taking my folic acid; avoiding shell fish, peanuts and blue cheese; attending the recommended scans and check-ups. I didn’t think this would happen to me. When people asked whether I wanted a baby boy or a girl, I replied flippantly: I don’t care as long as it’s healthy!
Marcus was three weeks old when I realised something was seriously wrong. A GP commented on his low-set ears which filled me with rage. I went straight home to Google ‘low-set ears’ and the world of Rasopathies opened up before me. I looked from the screen to my floppy, sickly baby with his low set ears and droopy eye-lid and I knew that he was not the ‘healthy baby’ I had dreamed of.
And so our journey for diagnosis, acceptance and adaptation to our new role began.
It’s not been easy and of course, there have been a lot of tears over the years. There remains a lot of worry and unless you’ve walked this path, you will probably struggle to understand the worry, exhaustion and the daily fights and dilemmas that parent carers face.
Please feel free to share this post or write your own and use the hashtags:
#parentcarerawarenessday #parentcarerawareness #braveparents #cfcsyndromeawareness #cfcsyndrome #cfcinternational
