Life with a child who has development delay can be bittersweet. So much time is spent comparing, worrying and fretting over what they are not yet doing. On the other hand, the littlest achievements and meeting of milestones means so much more.
Having had many months of wondering where progress was going (and in my darkest moments wondering whether any of the numerous therapies we do with Marigold on a daily basis were helping at all) this week several things happened that made me suddenly look at Marigold and realise all the hard work is finally paying off.
On Tuesday, we had a major assessment with physio, occupational therapy, community paediatrician, SALT….the whole shebang. Usually, in social situations, Marigold will go into herself a bit, so I always warn people they may not see the best of her. But on Tuesday she sat there in the middle of the floor with seven adults staring at her every move, chatting, engaging, laughing, initiating games of peekaboo and generally winning everyone over by being super, super cute. Given toys that just months ago, she would have stared at without comprehension, she now tried to play with. Objects that she wouldn’t even have attempted to try to pick up before with her delayed hand control, she picked up and transitioned between her hands. The occupational therapist said it had “made her day” to see Marigold doing so much. And I can’t really explain how proud I felt in that room on Tuesday, watching how far my little girl has come despite her challenges. I know I will get a report through in a few weeks which will bring me back down to earth again as it will benchmark her against a younger baby and that can be hard to read, but the progress and the potential is now so much clearer for everyone to see.
The next day we had Marigold’s speech and language session. Our therapist remarked that Marigold has almost unusually high levels of attention for a child her age, neurotypical or not. And it’s true that Marigold will happily sit there for hours whilst I sing nursery rhymes to her. Or 80s power ballads. Or all the songs from Phantom of the Opera and Les Mis. (She is the best audience I have in that respect, totally non discriminating against cheese and show tunes.) The other week we took her to the cinema and she watched the whole of Pixar’s Inside Out, nearly two hours, as good as gold. The speech therapist said this is overwhelmingly positive as if the attention and engagement is there is paves the way for the neurological development.
The other thing that happened recently is a silly thing really. Her beautiful golden hair has become so long, I have started putting it in little bunches. She has turned into a proper little girl. And again, it is bittersweet as at long last, after 18 months, it feels like she is finally progressing and moving on….but it also means I am finally saying goodbye to her as a baby.
I wondered whether I should write this blog. I worry about celebrating today only to be faced tomorrow with another unexpected challenge. And I know given her unique genetic condition of 3q11 trisomy mosaicism this is likely to happen. But then we can’t let the fear of tomorrow put us off celebrating the uplifting moments. So I would like to remember this week as one where we looked and saw just how far our clever little Marigold has come.