Happiness with a Side of Fear

     Last week, our sweet baby Con Con graduated from preschool. The last Pensack kid is finally off to elementary school next fall, solidifying the fact that time flies and we aren’t getting any younger. Words can’t describe how proud me and Jason are of Connor. This year was undoubtedly the hardest of his little life. He missed so much time at school due to illnesses and hospital stays, but he never missed a beat. He loved being at Dream Big and was always excited to get back there. He loved his teachers, his friends, and finally having the opportunity to ‘go to school’ like his siblings. We followed up the fun and excitement of Connor’s graduation with a busy weekend filled with Sadie’s dance recitals and some Memorial Day family fun. We laughed a lot (I may have cried a little too), and enjoyed everything the busy week/weekend had to offer.

    Through all of the good times there is always something nagging at the back of my head trying to push itself forward. That something is fear. Even though Connor got on stage and sang his little heart out at his graduation, he was battling a sinus infection and, on another medication to help him kick his latest set of germs. His most recent bloodwork showed that his iron is very low. He doesn’t have a lot of energy, and he falls asleep at random times, like at his sister’s dance recital; or goes to bed extremely early and sleeps through the night – like the 5:50 p.m. bedtime he occasionally gives himself. The low iron is also most likely the source of our usually happy-go-lucky little guy’s recent mood swings and irritability. We are no stranger to these symptoms, but they just exacerbate my fears.

            VEO-IBD has set Connor on this spin cycle that just won’t quit. One day he’s doing well, within a day or two he is exposed to something that his little immunocompromised body can’t fight off, and then it is a never-ending uphill battle of trying to get him healthy again – which lasts for a few days before the cycle starts all over again. This cycle is draining on all of us. We don’t shield our other kids from what Connor goes through, but we try to minimize the seriousness of it or how it makes us feel because they don’t need to carry the weight of those feelings. Despite us trying to keep things light, Sadie always senses when something is off. At eleven years old, she is wise beyond her years, and she knows when things are on a downward slope with Connor. She asks a lot of tough questions, which we answer as honestly as possible without adding to her own fears about her baby brother.

            Connor’s disease has taken so much from us already, both individually and as a family. I make a conscious effort daily to not let the fear consume me, but sometimes that is easier said than done. I took for granted the days where I could be blissfully unaware of anything ailing one of our children. I miss the days of being able to simply enjoy the good times without the little voice in the back of my head saying ‘don’t let yourself get too happy, the other shoe is due to drop again’. On the other hand, the glass half full side of me is grateful for how this disease has brought us closer as a family. It has pushed us to our limits, created challenges we never thought we’d have to face, and most importantly, sparked a drive in us to do whatever we can to contribute to finding a cure for this disease.

            I pray every single day that we find something that works to give Connor the deep remission that he deserves so that he can enjoy more good days than bad, and so that our family can ignore the fear and enjoy the little moments.