Down syndrome joy

[TheMauveHedgehog]

Hi
I have accidentally over the last few days got sucked into a few threads where people are discussing the possibility of having an antenatal Down syndrome diagnosis and they have made me so incredibly sad. To be clear I am so very much pro choice, and I think everyone should make the right decision about any pregnancy for them selves and be informed to do so, but lumping DS in with conditions incompatible with life makes no sense to me.

we had a post natal diagnosis following low risk screening, so I haven’t had the experiences people are describing and to be honest, I’m very grateful for it.

As I said, I’m pro CHOICE, however, I am finding the descriptions people post of how awful life will be for people with DS and those around them devastating. My child is only 16 months and bar a crappy first 3 weeks in NICU, the only suffering he experiences is when I wipe his face (obviously devastating). He is so social, loves nursery, loves music, has about thirty signs and babbles constantly. He crawls and climbs and likes to empty the washing machine. He loves noodles and does not have a sweet tooth. He Wants to read and cuddle and wave at everything. So when I read how negatively people describe later life for people with DS it breaks my heart. He has brought our family only joy after the initial shock. I don’t want to go through life full of fear (I know some fear is inevitable for all children, but you know what I mean). And I can’t bare that some people think my child’s life isn’t worth living. My partner just says those people are ignorant and why do I read those posts. Both good points. But I want to reassure people that life with DS can be a great life. But I’m worried I’m being naive. Also if these hurtful peopek exist in the world I feel I should know as my son and I will encounter them at some point and I feel like I need to be prepared to protect him from those who are wilfully, it seems, unable to see his value and his beauty

All that said, I would love to see written down some positives about having a family member with Down syndrome. For balance. Maybe a parent will see it when they need it most

thanks

My big sister (in her early fifties now) has a fabulous and full life. She is life and soul of the party and brings people together. People show so much kindness to her. As a child I felt self conscious at times when people stared, but I believe that is less likely now that people with Down’s syndrome are represented on television and often attend mainstream schools for part of their education.

Adding that my sister has never expressed a desire to have her own children, but has been an extremely enthusiastic Aunty and is much loved by her nieces and nephews!

Your son is gorgeous and perfect just the way he is. People are so hopelessly judgemental and narrow minded - it extends to so many things. All you can do is try to challenge what you can manage and otherwise just know that it's not a reflection of your son or your family, but just the ignorance of others xx

Thank you both for your replies. We are fab in our bubble of our family and friends, and if we need to stay in this bubble most of the time, we will. I’ll work on being braver and we will continue to enjoy the wide range of what it is to be a human having a human experience!

Have you seen ourhuddybuddy on Instagram? That’s such a positive, empowering account.