I know that everyone says time flies, but these past three years feel like they have gone by at lightning speed. I still can’t get over that the holidays are here again. It’s my favorite time of year, but it’s also when my anxiety skyrockets. Gone is the ease of the mostly germ free summer, and in comes rushing every infection known to man. Everyday I wake up thinking, “Is this going to be the day Connor gets sick again?”.
If you’ve been here for a while then you know all about sweet baby Con Con’s VEO-IBD diagnosis and the rollercoaster ride we’ve been on. Most of the time I talk about how he’s doing or the wild range of emotions I’m going through at any given point, but what I don’t talk about often despite the fact that it is constantly on my mind, is how every single member of our little family is affected by this unpredictable disease.
Two weeks ago Connor had a few appointments at CHOP. The night before we had to drive to Philly, I was in the car with Sadie bringing her home from dance. She was unusually quiet then eventually asked if I thought that me and Connor would be coming home the next day. I said “Yes, why wouldn’t we?”. She shared that a lot of the times that we have appointments, Connor ends up being admitted to the hospital so she always gets nervous when she sees it on the calendar. My heart broke for our sweet girl who shouldn’t be carrying those nerves. Sadie has always been intuitive and a little old soul. I know she has trouble navigating through the times when Connor is in the hospital, but I didn’t fully understand how much just seeing the appointments written on the calendar affects her. The last thing our beautiful tweenager needs is another thing to stress over – the middle school years are torture enough! This conversation with Sadie really got me thinking about how difficult Connor’s diagnosis is on our other three kids. Looking back on the past few months, I’ve noticed little things Cole and Cooper have said that show just how aware they are of what goes on with their baby brother. While they don’t outwardly share their nervousness, the signs are there.
I truly believe that all of our experiences in life are meant to teach us lessons. Not all days are good, but we can always find little moments of hope or happiness somewhere in a day. Jason and I try to teach our kids the importance of finding the good, no matter how difficult it might be, in order to keep pushing themselves forward. We choose to find the positives, even in the worst situations, because we know that better times are ahead.
Recently, Connor has been asking more and more why he has to deal with this medical issue. Why does he have to take medication and go to countless doctors’ appointments when his siblings or other kids his age don’t? Jason and I use these conversations to help all of our kids understand that just because they don’t see something in a person, doesn’t mean they aren’t having a hard time. While we encourage them to share their feelings and give themselves time to be sad or disappointed, it’s important not to sit in those feelings for too long.
In order to lead by example, we participate in a lot of fundraisers for CHOP. One of our favorites around this time of year is the Virtual Toy Drive. Money raised from this event goes to help spread some magic and cheer for the patients/families that have to spend their holiday in the hospital. Luckily we haven’t had to experience this (and hopefully never will), but so many families do. I’d be lying if I said it wasn’t something I thought about frequently as holidays approach. But, this holiday season, instead of worrying about whether or not Connor will stay healthy enough to celebrate at home with our family, we are channeling our nervous energy into doing something good for others and focusing on finding the glimmers of good in every day.
If you are willing and able, we humbly ask for your support by making a donation to our Virtual Toy Drive. Every penny counts toward bringing a smile to the faces of families who have to spend this holiday season at Children’s Hospital of Philadelphia.
Thank you for your continued support of our mission. We appreciate each and every one of you. Wishing you and your family a happy healthy holiday season!
Donation Link: https://chop.donordrive.com/participant/Connors_Virtual_Toy_Drive
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