Drowning Out the Voice of Fear

    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 Virginia, but thankfully it has not progressed to anything that we are unable to handle at home. He currently has more good days than bad, and for us that’s a win! The problem is, those little hiccups stirred something in me that I had been able to keep at bay for the past few months, and now I am having a hard time keeping the voice of fear away.

    Last year at this time I missed the first week of school because Connor was hospitalized for 5 days due to a flare and medication failure. From that point on, I was constantly waiting for the other shoe to drop. Another 5-day hospital stay in January, a 2 week stay in March, and a hundred trips to CHOP in between, that feeling just continued to get worse. Toward the end of May things finally started to settle down, and Connor was living the life of a typical 5-year-old. School was over so his exposure to germs was minimal – a great thing for an immunocompromised kid; also, a great thing for a mom who always has a little voice saying “don’t get too comfortable, it can all change in an instant.” However, the closer we got to the first day of school, the further that feeling of comfort moved away.

    Connor spent the last week talking about how excited he was to go to kindergarten. He was especially excited to FINALLY ride the bus with his big brothers. When I asked him how his day was today, he said, “Mommy I ‘woved’ it and can’t wait to go back!” Hearing the excitement in his sweet little voice made my heart so happy, but that voice of fear and anticipation of the worst is always close by.

    I have always been a “glass half full” type of person. I try to find the good in every situation, and often remind myself and our kids that although every day is not a good day, we can always find a small moment or piece of something that was ‘good’ on the bad day. That thought process has always helped push me forward, but the deeper we get into this journey of life with VEO-IBD kid, the harder it gets to keep the nervousness away. These days I try to keep busy, or at the very least, keep my mind busy. In doing so, I don’t have the opportunity to worry about what might happen or when the other shoe is going to drop and send us on a tailspin to get Connor healthy again.

    Seeing Connor excited and happy about school is one of the greatest feelings in the world. Worrying about what could potentially happen to him or what illness he can catch is enough to push me over the edge. I make a conscious effort to focus on the positives and try to keep my mind clear of the negative/worrisome thoughts, but that is much easier said than done.

    Thankfully, Connor (and the rest of our kids) go to a school where the faculty and staff treat everyone like they are family. The administration, teachers, and support staff go out of their way to make sure every child has a safe, welcoming learning environment to grow in, and for that we will forever be grateful. So tonight, while my mind wants to wander to the worry of whether or not this year is going to be a repeat of last, I’m instead choosing to focus on the good. The happy faces of all 4 of our kids today after their first day of school. The kind caring adults and kids that they get to spend their days with, and our army of family friends who help lift us up on the bad days and share in the joy of the good ones.

    I am going to end this blog post with one of my favorite quotes from Tiny Buddha because it is something that I remind myself of daily and it might just resonate with you, too.

 Never forget yesterday, but always live for today because you never know what tomorrow can bring or what it can take away.