After a very busy day today, Charlie and I retreated to my bedroom for an impromptu girls’ night. She sat perched in her bouncer and gnawed on a bread stick to soothe her teething gums while I scanned some things on my lap top. Finally, we were relaxing. I scrolled through my email and browsed the numerous message boards that I lurk on.
The message boards can be helpful as a place to rant to others that understand or loaded with useful advice and guidance from others who have been there. On the other hand, it can also be somewhat discouraging.
Almost daily, I see posts from parents who gush about their preemies that have “caught up” or no longer have health concerns. I am happy for them. I would be lying if I claimed I don’t hope we get there one day. However, I have noticed an unspoken void. I wonder why I don’t see posts that read like this:
My twenty six weeker was born weighting 790 g. Now, at sixteen months, she has been diagnosed with spastic diplegia due to PVL, a feeding disorder, minor vision concerns, sensory issues, and a speech delay. She has come a very long way since coming home from the NICU. She is very bright and has “caught up” in the cognitive and social areas. We have a great time laughing, singing, playing, and dancing together. Even her therapeutic exercises are mostly fun. I am so proud of her and couldn’t love her anymore. I, truly, am blessed.
(Now, for the before and after pictures that usually accompany these type of posts.)
Why are the babies (and children) who don’t catch up celebrated in private? These are the posts that would actually give me hope (rather than a discouraging pang of envy). These are the parents who can tell me that things can still be alright. One day, I will have the audacity to make such a post. I want others to know that even if their babies don’t “catch up” or have long term issues… life can still be pretty grand.