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

The holiday season is rapidly approaching. A time that was long rooted in family and joy for me is now a time where I try to enjoy the moments while holding my breath. Connor’s health journey is a wild rollercoaster ride. We are never quite sure when it will jump off the track or how long it will take to get back on once the unraveling begins. Up to this point we have been extremely fortunate to have not spent any major holidays in the hospital. Unfortunately, other families are not so lucky. The past two years life has taught me many lessons. I personally feel the most important lesson is to share gratitude and give back. Even in the face of medical troubles and adversity, I can still see that our family is extremely blessed. We are surround by the most kind, caring, thoughtful family, friends, and community. When we are down, they pick us up, and when we reach out, they are always there to help in any way possible. At the moment, one of my biggest fears is Connor’s health decli...

    If you’ve been around here for a while, then you’ll know that most days I go through life holding my breath hoping for the best. When it comes to life with a child who has a chronic illness, you never want to get too comfortable because the fall will be a lot harder when the rug is pulled out from underneath you. Instead I choose to expect the worst and hope for the best. It makes the blow a little easier to deal with. You have heard me say that while we try to the make the best of every single day, there is always a small part of us that is waiting for the other shoe to drop. Well, guess what? The other shoe is starting to slip.      Since the beginning of August Connor has had some ups and downs in relation to his IBD. For the most part it has been situations that we were able to handle at home and had not interrupted our lives too much. Two weeks ago that changed. From that point forward his symptoms got worse by the day which prompted some convers...

     The days are long but the years are short; a quote that some find cliché, but one that I’ve found to be extremely relatable. For me, it feels like yesterday that we found out I was pregnant with our miracle baby after having my tubes tied. In reality, that was six years ago this past April. It also feels like yesterday that Connor was diagnosed with VEO-IBD, but this past May was the two-year mark of receiving that news. Today, that sweet baby boy (who will always be my baby no matter how big he gets) started kindergarten, and I cannot for the life of me figure out how we got here so quickly.      After a very difficult year, our family was blessed with one fun summer. From vacations to fun with friends and family, hosting our first golf tournament fundraiser, and everything in between, we made some pretty great memories with minimal flareups/symptoms/issues. The beginning of August brought a few small hiccups for Connor midway through a trip to Vir...

    Booker T. Washington once said, “Those who are happiest are those who do the most for others”. These words have been resonating with me over the past 10+ days. In a year that has been filled with so much uncertainty and anxiety up to this point, I finally had a few days where I was at peace and at my happiest.      On Saturday, July 15 th , the Inaugural Connor Cup Golf Tournament went off without a hitch. It was absurdly hot and humid, but that did not deter us from having one of the best days of our life! Our family, friends, and even some strangers turned new friends came together to support our little IBD warrior and his doctor in ways that surpassed our wildest dreams. There was A LOT of behind the scenes work that went into pulling this day together. The support that we had from our family and best friends leading up to the tournament and the day of is something that I will hold onto forever. The depth of our support system is something that I wil...

    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...