Today we planned on clinic then we would see and ended up having an amazing family day with so much kindness, even though we spent 5 hours at the hospital!
The hospital was great, while I think every decision we made was correct, Morristown sure knows how to do the soft things right, it is either they have much more budget, less patients (never seems to be anyone there and the facility size is a tenth to a quarter of what we are used to) or it is that they have experience in this stage (perhaps people go to NY for cure, once that is off the table maybe they come home), I have no idea but it just seems like everyone on the support staff is so much more present. We talked about finishing out his beads of courage (at this point it is way more for us than him, but we sent child life at NYU the list a lot of times and never got the beads, their response let us know, we just restocked). Then today we worked on fingerprint jewelry, handprint and footprint jewelry, they set the whole thing up and even gave me an extra set so I don’t just have to use their person (I want something that will work on my existing necklace not silver so found my own person), they even did all of Claire’s prints too! In their budget they will give both Casey and I a piece which is beyond amazing! Con loved getting it done, too, which was an added bonus, all while Claire screamed “my turn”!
After this I had to entertain Claire because clinic is not big enough to her, so we went did two acts of kindness (no pics as I had crazy Claire), we made a donation to the prize bin at clinic, and one to the NICU, going to the NICU was special as Claire was her crazy self and one of her neonatologist a (the one that checked them in and was in the OR when they were born) got to see them, she was amazed at how great and “normal she is, Claire even attempted to play ring-around-the-rosy right there, it was amazing! All this in front of a dad I knew just followed his new baby up, because we followed him and he was sitting on the bench worried, I made sure to talk a little louder when I said can you believe this 25 weeker is completely fine! I mean look here, she can’t pose instead needed to run from the sign I took a picture in front of 3 years ago this June when she came home at almost 4 months old!
After clinic we went to the creamery, Casey and I to get a real lunch, Connor and Claire to get ice cream, and we had the pleasure of being joined by my moms friend Michele, it just so happened she was in Morristown. Michele is the definition of random act of kindness, I did not personally know her prior to Connor’s diagnosis, but she ran to the cause, constantly surprising us with the most amazing things throughout the entire journey (including gifting her sons guitar which we got to gift forward to Lou), she also did the toy drive meaning while in the hospital I could concentrate on being with Connor and coming home two days before Christmas there was already a ton under the tree. Just a couple weeks ago knowing Connor loves ice cream, she gave us a gift certificate to the creamery, knowing it would be a great place to go after the hospital, we used it today, so it was amazing to spend some time with her and let her see Connor again!
After this since Claire is obsessed with the Easter bunny (I told her the Easter bunny brings lipstick, since lip smackers are beyond an obsession for her right now) we decided since we won’t get another Santa and did not get Santa this year, let’s try the creepy Easter bunny, they loved him from afar, but once we got close, there is still no love:(. The amazing part of this was the young kids working the stand figured out he had cancer and I went to pay and they said no charge, I said why? They said just no charge, I asked do you know what is going on here, they said all we know is he has cancer and we won’t accept your money, my family has been the recipient of so much kindness throughout this journey, today just struck me though because it was random and as a recipient it felt so good. So thank you to everyone who is participating in kindness for Connor, I can not think of a better way to honor our little boy (expect a big post with all the acts in the next couple of days)!
They preferred, going on a “ride”, the escalator!
We came home to a photo book from my friend Kristin of our Disney trip, which was beyond amazing, Connor calls it his book and won’t let anyone else look at it and pizza and cupcakes (from my favorite bakery in Chester) from Heartworks, kindness is everywhere, thank you!