This is what they said..

A beautiful video, of parents of children with disabilities, imagining what they would have told themselves on the day of their child’s diagnosis.

For all parents of children with disabilities here – I share it out. What would you have said?

13 comments

  1. Thanks for sharing, its very moving & inspiring 🙂 My youngest son has a few problems going on-number 1 being severe ADHD. Every day is a new battle/struggle for him to deal with whats going on in his wee head. Words & phrases like these are encouraging for me & him to get through the next couple of hours, day, week. Sending much love to you all, Kia kaha & arohanui xxx

  2. Lovely video Sarah. I just watched it and kept saying, “true”,to many of them. We are a pretty strong couple and have done pretty well through all of this! And we have a pretty long road ahead too. Looking forward to it!

  3. I would have said to my earlier self, “You have no idea of the places Albie will take you, the love people will show you and how lucky you all are.”

  4. Beautiful..my own one would be “there is light at the end of the tunnel, and it shines so very, very bright” (I always feel like my congential heart son,(cctga,ps,vsd,mvr, heart block) is going into a dark tunnel when he goes into theatre…)..then the sun comes back out when in PICU and recovering..my way of dealing with it :-). Thank you for posting this and hugs to that scrumptious Albie!

  5. I actually thought A was going to die, right before we found out, as he had to be resuscitated a few times and then was intubated. That was when I broke down in tears. A couple hours after that we were told about his CHD and that he needed emergency surgery or he wouldn’t live any longer than two more days maximum.

    I think I needed to be told that there was hope. That the surgeons do this kind of thing every day and the success rates are very high. It would have been good to have an earlier diagnosis, when I was pregnant, as then we could have gone into it as an elective surgery and I might have met other heart parents who could have said things to make me feel okay about it all.

    I needed to be told that in exactly a year A would be shining and growing and healthy and all he would have was a zipper.

  6. Having my daughter fall asleep at school one day and to be told 48 hours later that she needed emergency open heart surgery to survive endocarditis – I would have like to have been told that “you will get through this The rollercoaster ride will have so many ups and downs, twists and turns and you’ll want to get off the ride so many times – but eventually when life settles down again – you’ll look back and say “we survived”. You are stronger than you know, take one day at a time.”

  7. I watched this days ago, but have taken a while to reply as it really affected me. We got an antenatal diagnosis along with the discussion a lot of parents mention of termination. (At 22 weeks. Just so unimaginable). I would say to my then self…this will be harder than you can imagine, but much, much better than you could ever dream. Nurture your boy and nurture your marriage.

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