I have been planning to post something for a while but couldn’t overcome my crippling procrastination until now. After a 2 week stint in Boston with the family I feel compelled to record my experiences and stop robbing the world of my brilliant thoughts and witty observations. This will not be an update of doctor visits or health status, as Erin can attest, my memory for these things is spotty and I would leave those details to the expert. Rather, this will be my thoughts and experiences as a first-time parent. I have gone against my better judgment and not told Erin of my intentions because she would stop me out of fear of this post going viral and leading to a reality show and international super-stardom. Fame changes people and there is a very high probability that it would turn me into an unbearable douche. I will apologize in advance as these thoughts are not very well organized and I will be hopping around a bit. Regardless, I hope you enjoy what will likely be the only post I am allowed to make.
If you have had the pleasure of talking to Connor & Claire you know that they have developed a language only understood by few. For those that do not speak Connor & Claire, I have included translations for your reading pleasure. Those are in parentheses. I have included a few Claireisms below;
“Ooh, agilhihfjnsjn cuddly?” (Ooh, here are my sunglasses). “Ujergwurein Connor?” (Where is Connor?).
Being in Boston gave us the opportunity to meet other families fighting similar battles. It has however reconfirmed how unique our situation is. Connor’s treatment protocol is far and away more intense than any we have heard or read about, and the toughest days are ahead of us. I knew this was the case from day 1 but didn’t fully appreciate it until now. It crushes us that such a sweet and innocent little boy has to deal with this; however, Connor continues to amaze doctors, nurses, physical therapists, pretty much everyone he meets because he has responded so well to such a harsh treatment plan. He is a true medical marvel. He inspires me more each day and challenges me to be a better and more patient dad. My dad told me often growing up that I was special, and I couldn’t have agreed more. When I hear him tell Connor that he is special I smile because I know Connor is one-of-a-kind and after he is done kicking cancer’s butt he will continue to do amazing things, hopefully with wild financial success so he can take care of me and Erin and we can retire early. I’m not worried about Claire. She takes after her mother, very smart and driven. If that doesn’t work for her, she will still be fine because she is a beautiful little girl and can marry into a rich family, LOL.
Each day I am with them I think they are growing up so fast. I thought I had a few years before my kids would stop calling me dada or daddy but last weekend when making beggies (bagels) I hear “Casey” in a squeaky little voice. I look up and see Connor with a devilish grin say “Casey, cheechios (cheerios).” I almost wet myself. I can’t remember when I started singing along to the radio but on the drive home from Boston Claire made everyone aware how big a fan she is of ‘Try’ by Colbie Caillat. She sang “Twy, Twy, Twy, Twy over and over for almost 4 minutes. Sometimes I wish I could freeze time and relive those moments over and over again, but then I would think about all of the new memories that would not be made and come back to reality. I guess capturing these moments are what iPhones are for.
Being first time parents we frequently find ourselves in unfamiliar situations. Occasionally Erin asks for my opinion but I rarely know what to do, but I answer with confidence so she goes along with it. About half the time things go as hoped. The rest of the time tantrums of biblical proportions ensure. Who knew putting the wrong shoes on Connor was such a problem or turning on Sese (Sesame Street) instead of Me Mouse Cuckow (Mickey Mouse Clubhouse) would upset Claire so much.
I have the best parents in the world, whom I try to emulate each day, but all the training and advise in the world cannot prepare you for changing 7 poopy diapers in a day on a squirming toddler screaming for “Baby” (Claire’s favorite doll) or “Copper” (Connor’s toy helicopter). As frustrating as that can be, it all melts away when we find Connor & Claire hiding quietly together behind the couch cushions waiting to be found, followed by each exclaiming “Again!”
Since February our lives have been turned upside down but for much of that time my day-to-day routine has not changed. I still go to work each day and get to sleep in my own bed. Erin, however, has literally dropped everything to lead this charge. She has spent countless days and nights at the hospital and for the past 6 weeks has only been home for 4 days. She has been Connor’s number one advocate and had to fight many battles along the way. She has clashed with doctors, nurses, techs, 1 poor unsuspecting intern, insurance companies, parking garage attendants, and 1 Boston cop. She is spending every free moment of her day researching and reaching out to other parents to understand how their kids are being treated. All that knowledge will be shared with Connor’s medical team to ensure he is getting the best possible treatment.
When dealing with something like this, one could understand a sibling getting lost in all the chaos but Erin has done everything she can to prevent that. Whether it is coordinating who will be taking care of Claire during hospital stays, arranging her first day of school or planning special mommy/daughter days, Erin has done everything imaginable to ensure Claire is getting everything she needs and more. Bringing Claire up to Boston meant less sleep and recovery time for Erin but that sacrifice paled in comparison to the benefit of Claire having more adventures with mommy and Connor.
Connor & Claire might not know now how fortunate they are but I will remind them every day for the rest of my life how lucky they are to have such a dedicated and selfless mom. I know how lucky I am to have her and tell her all the time that I could not raise our two crazies without her. When this is all behind us I can’t wait to finally go on our first big family vacation and the three of us will spoil her rotten for all that she has and continues to do for us. She deserves nothing less.
I have always been an optimistic person. Even after C&C being born at 1 lbs. 10 oz. and long NICU stays, I still saw the glass as half full. Cancer can make you rethink everything and at times my optimism seemed to be wavering. However, living through this has given me perspective and changed what is important. Whether I have days, weeks, months, years or decades left with them, I learned to not take anything for granted and cherish every moment, no matter how insignificant it might seem, because nobody knows how many moments we have left.
I have rambled on long enough but would like to make this last statement. Since February, I have told Erin almost daily that Connor will come out of this healthy and live a long & happy life alongside Claire. Nothing has changed to deter me from this thinking. Instead I came across this picture, which has reinforced my positive thoughts. I created this picture for Erin on our wedding day more than 6 years ago. It was a view of things to come for our new family. As you can see I envisioned an almost spot-on version of our future family. Therefore, this proves that I have the ability to see the future and have used this power to see our family’s future, and what I have seen is beautiful!