It's Complicated: A Mom's Diary of Life with a VEO-IBD Kid

    Every summer Jason and I take the kids to the beach with my Dad’s entire side of the family. It is easily one of our favorite weeks of the year. Most would think that having close to 30 family members in the same location for an extended period would be a disaster, but for us it is just a whole lot of beach time, game nights, shenanigans, and laughs.      I was very nervous in the days leading up to this year’s trip because last year’s trip was when Connor’s health began to decline. He did not enjoy himself and spent much of the week curled up in a ball on my lap. Last week we headed to Diamond Beach, NJ for the week with our family and had the BEST time. Sweet baby Con Con was like a completely new kid – running into the ocean, building sandcastles with his sister, brothers, and cousins, eating lots of pizza and chicken tenders, and providing us with endless one-liners and laughs. The entire drive home I couldn’t stop looking at pictures from the week...

     Since I was old enough to recognize it, I knew that I had been blessed with being surrounded by a lot of great people – family, friends, co-workers, neighbors. Throughout the last year, when I least expect it, I’m reminded of just how great all of these people that are in our lives truly are. Today, was one of those days.      I grew up in a small town where everyone knows everyone or knows someone who is related to them. I had the privilege of meeting some of my best friends in grade school and  am still friends with them today. A lot of times, these people know what I need before I do. We have been through a lot of ups and downs together over the past 30+ years; a lot of great times, a lot of laughs, and some not-so-great ones too. After all of these years, they still show up when I need them to without me even having to say a word.      Things with Connor’s UC are relatively stable, but other levels are being thrown off because o...

       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 ...