Guess who's back

Yeah yeah, whatever, so it turns out I couldn't stay away. Just shush. 

The SN blogging community has been in turmoil with accusations and assumptions regarding speaking for our children and over sharing. My blog started as a means to balance my mental health and to vent my frustrations at the world. My blogging needs have changed over time, It's become less about venting or the "injustice of it all" and more about education, access and acceptance. As I return to the blogging world it is with these things in mind. What I won't be doing is sharing anything about my daughter. She doesn't want that, and I respect that. Ultimately I need to remember that I blog for me, and no one else. 

What I must do is mention that the SWAN UK community has been rocked by the recent passing of Ethan, Rufus and Olivia, and earlier in the year by Alanna and Jack #saytheirnames, each leaving a devastating hole in the lives of their families and all who knew them. This means that three of my SWAN drinking buddies have had children pass in the last year- Liz, Nicky and Cindy. I think about them all the time. 

Many of us know, and to a variable extent acknowledge that our children will not reach adulthood, others suffer a sudden loss, neither is an "easier" path. All any parent wants is their child to be there with them. Memories are more valuable that the richest stones or the biggest house. 

This leads me on to Sally Philips' programme on Downs Syndrome. I didn't  watch it. I don't want to. Apparently it highlighted the joy a child with SN and their family can feel. It made people rethink the idea of "quality of life" but what it also did was demonise people who did choose to terminate. I'm not even thinking about those late terminations, I just can't. Although the program sounds overwhelmingly positive I have a few issues : 

- firstly I'm pro educated choice. Which means I'm basically for whatever a woman decides once she knows all of the facts around the pregnancy and birth. This means that Down Syndrome needs to stop being talked about in hushed tones as if it's the end of the world, that women should be shown how fulfilling their child's life could be, but on the flip side shown the more severe end of the spectrum and what that can mean. I have read so many posts from families of children and adults with the syndrome who feel only the higher functioning and more able individuals are talked about and shared as examples on TV and social media. 

- we need better education and awareness of special needs. As a society we are under pressure from the media to see disability and illness as a "burden". That's a hard mantle to shift. Without a broader outlook on life we can never accept difference as normal. Yes that might seem a contradiction, but it makes sense. 

-we need to start accepting that while Down Syndrome is the most common chromosomal disorder it's not the only one. There are many other children and adults out there waiting to be understood and accepted. 

- I don't think anyone should comment on who chooses to go ahead with a pregnancy and who doesn't, unless they've been there. It's not a situation you want to be in. I didn't have that choice. Thank fuck. Apparently Nate was "fine". Shows what they know. And to this day I don't know what i would have done if I did know. I can just imagine my face in hearing "well your child won't walk or talk, will be fed through a tube, will stop breathing every night and require ventilation and we don't know how long he will live for, what do you want to do?" I'd love to say I would have gone ahead with the pregnancy but if I'm honest I really don't know. Nate has changed me. The me now would have been ok with it and gone on to savour every snuggle, but the me then was a bit of a dick to be honest. I knew nothing about disability or dealing with medical needs and I would have thought I lacked the confidence to do right by a medically complex child. To be clear I value every day I have with my boy and I want everyone to know how much he enjoys life and how much he gives back. He's an absolute joy. I worry people might think we have it rough, but believe me facing losing him is far rougher. I have absolutely no regrets. Empathy yes please, sympathy no ta. 

- we also need to be honest about how difficult it is to access therapy and supportive/ respite services. I swear I thought if you were struggling that people actually wanted to help! This links back to the lack of confidence I mentioned previously. I suspect had known the huge battle we would have to access adequate services and provision for the whole family I may have thought it all beyond my capabilities. 

Anyway, so me, I don't plan for the future. I plan for now. Or maybe the next 12 months. This is an improvement, it used to be month by month, so uncertain and precarious was life for Nate. This uncertainty we live with means that assessments and funding need to be allocated without delay. Needs change over time and this must be met with urgency. Some things can't be "put off" or delayed, and there is no excuse for inadequate or incomplete assessments. We need what we need. We don't lie, we don't exaggerate. To be totally truthful we don't actually want help, but when we realise we need it, we need it fucking now. And when faced with an uncertain future we really fucking need it now.