Today we made it to the Camden Aquarium, a friend sent us tickets and feel so blessed they did as I did not know much about this aquarium or how great it really was, for C and C’s age I would say it was much better than New England! A couple things happened today that made it great. First, once we got Con out of the stroller and Casey carried him around it was hard to tear him away from most exhibits, he loved the hippos (as did I, the feeding was pretty incredible, the crocodiles (where he even insisted on standing on the ledge next to Claire), the stingray, turtle and shark tank, touching the stingrays, and finally the Penguins, he had a really great time and slept the whole way home!
It was also great because we got to meet up with Stephanie and Grayson, both have them have been supporting us and cheering for us the entire last year as they know what life is all about and what is really important, just recently they sent me a gift card for a pedicure and manicure in town, just because, and hoping I would take some time for myself. Grayson is a miracle and we are blessed to have met her and to see her thriving, we wanted to do this for a long time but with isolation on both sides it was hard. Grayson was born 4.5 months after C and C, at 26 weeks and her birth was much more traumatic, In fact in addition to Grayson being in the NICU, her mom Stephanie was in the ICU, Grayson was given very small chances of surviving, let alone thriving and is the only child I know who has spent more nights in the hospital than Con (Grayson’s NICU stay was longer than Con’s NICU stay and cancer stays combined)! Grayson just recently celebrated being home for two years, has been released from most therapy and is starting in a traditional nursery school next year, seeing her and Claire interact was magic! I fell lucky to know Grayson and Stephanie and it felt great to hangout with another strong mom in a no judgement zone / love what you got way!
The last thing that happened was someone I don’t know walked up to us, said you don’t know me but your family is amazing, I thought for a second maybe she lost a child to brain cancer and could see what was going on (con does not look like a cancer patient anymore now that he has hair so I think people just think he is special needs, not terminal) then she said I read your blog, there was a connection somewhere, but that was crazy! First, our family is not amazing we are doing what anyone would do, sure we are sad, but try to remind ourselves he is here so we need to enjoy him and make sure he enjoys life, this house is super boring for him so we try to get him out and will continue to do so, we do everything last minute depending on how he is doing and are hopeful if he stays stable we can get him to a zoo, on the great adventure safari and to seseme street live when it comes back to NJ, maybe even the bubble show! That is not amazing just trying to make sure your kid is happy and feels loved every moment they are here, same thing everyone else is doing. Second, I do this blog for a few reasons, first as a way to keep people updated, second to have a journal, and third to raise awareness, I am thrilled to see awareness is really being raised!