Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.
I wrote this poem last night. I needed an outlet for the pain and frustration I was feeling in my parenting of Matt. Today is already a better day, I have had bonding moments with Matt that have connected us, we have understood each other on other levels. Though the frustration does remain, it is not as intense. I felt I should share it as part of my commitment to authenticity and recognising that life with someone who has RTS is not easy, rewarding yes, but not easy.