I have probably cried like this 4 other times in my life, when the babies were born 3 short but long years ago at 25 weeks, the day of and following diagnosis, the day and few days following recurrence and today. The first three occasions I was able to stop crying by a desire to fight, other people lifting us up and showing us the good in the world and because I had HOPE. I know it might sound strange that after recurrence I am able to say I had hope, but I did, I knew Connor would eventually die, but I knew it would not happen the next day and my hope was fueled from giving him as much life in as little time as we could. I think we did a good job of that, Disney was unreal as was his party, he got to go to art class, music class, have play dates with almost all my friends kids, go to the crayola factory, build a bear, multiple train museums, and much more. We did not finish our list, one day we had hoped to go to the liberty science center but he was having a rough day so we had to skip, another day we were too tired to go to Sesame Street live, and it is not back until April which will be too late. This weekend we had hoped to celebrate their birthday by trying the please touch museum and Camden aquarium, and next weekend we had hoped to go to the st Patrick’s day parade (which in his current state I think might still memorize him) and the circus, I am not sure we will make it to any of it. He is declining so fast, I have talked to a few other parents today, apparently this is what happens. This time we have no HOPE, just the dreaded end and the process to get there which will be horrendous with no clue how we can or will ever survive without our little boy, even though a really large part of him is already gone. To make things worse we have to figure out through our Saddness, our grief (the grieving process has started because everyday we lose a part of him, we have been losing him since last February, but then we would get moments of him coming back like our summer in Boston, this time we are really losing him) how to be good parents to Claire, how to after everything give her a happy and safe place because she has been through a lot too, more than most people in their lifetimes. She senses it too, she always has to be touching me if I am around, she is acting out through tantrums, and I feel us losing some of the progress we have made since getting out of the hospital and rests listing trust. To really pull at your heart strings, Claire just figured out that she is a twin, and she is now obsessed with birthdays, with their birthday being Friday, she has been singing Happy Birthday to both Connor and Claire all week. Yup, this is going to suck, but a wise cancer mom who also lost her son reminded me life is a gift and the “little people” will keep you going and deserve to become the best possible versions of themselves. For now we are hoping that we can get him his Avastin Thursday afternoon (we have opted out of chemo for this round as we want to see how he reacts) and that stabilizes things a bit. We will let him rest too, in hopes we can somehow salvage their birthday, somehow do something fun. I thought I was prepared but I was not, nothing can prepare you to slowly watch your child die.
Heartworks, however like they always do, has stopped my tears a bit, it is like they know. They came up with the idea of throwing a very small family party at Penguin (just cousins/2nd cousins) on Sunday, which is great because ice cream is a great consistency food wise for how he is eating and Connor loves his cousins, I am hoping he stabilizes a bit and we can all get one last happy memory, Claire will get a great memory too, with her bestie Maddie there!
They also came up with the most amazing idea and I challenge you all to participate, as over the course of the month this may be the only thing that will truly get us to smile, and hey consider participating over the next year too at random times because trust me, this is the one thing that will keep our son alive, show us how his short life meant something to all of you and give us a feeling that through all this tragedy good wins and cancer loses. I saw another family do this to honor the year anniversary of their daughters death from brain cancer all while raising awareness, and it warmed my heart on that day, gave me happy tears and raised a ton of awareness to childhood cancer, so here it is, #kindnessforconnor and Megan’s explanation: “Also, if it is ok with you, starting tomorrow we would like to have Heartworkers sign up for all the days in March to choose a day and do an acts of kindness for someone in their life as a way to honor and send love to Connor- So March would be “Kindness for Connor” month and we can do it quietly or put on FB so other people who love you can also participate- it cod be giving hot chocolate to a crossing guard on a freezing day, bringing dinner to someone who is struggling, paying for someone’s coffee at Starbucks etc”, she also asked if she could open it to Facebook and I said absolutely as seeing these acts will be our smile for the day, so if anyone wants to participate, pick a day, post a picture or status on FB or Instagram with the hashtag #kindnessforconnor and do me a favor add this hashtag too #kidsgetcancertoo. Oh and if we aren’t friends on Facebook, find me, friend me because it will be amazing to see these pictures, every single one of them!