Can We get a Do-Over?

Do you ever feel like you’re trying to climb out of the deep end of a pool and someone just keeps throwing bricks at you? That’s how I’ve been feeling lately – what else could go wrong? It’s a question I typically don’t like to voice because I’m a little superstitious; so to me, verbalizing that statement is like opening Pandora’s Box. It appears the universe doesn’t need to hear me say it though, because 2024 ended on a downward slope and 2025 hasn’t shown any sight of an upswing.

On December 30^th, I lost one of the greatest loves of my life – my sweet Grandpa got his angel wings less than two months shy of his 89^th birthday. I knew it was only a matter of time before I’d have to say goodbye to him, but a part of me always hoped he’d defy the odds and live forever. It’ll take some time to get use to him not being here; his words of wisdom, unwavering support, bear hugs, infectious laugh, and the literal twinkle in his eye are things I will miss as long as I live. As if that loss wasn’t enough to have to bear, two days later my dad’s best friend passed away. He was like a second father to me growing up. A constant source of support not just for his family but also his friends, he will be missed beyond measure.

So now it is January… you know, one of the months I hold my breath through and hope we make it out without Connor having some type of medical episode. Based on the title of this blog post I bet you’re assuming that we weren’t so lucky – and you’d be right.

Three weeks ago, we paid a visit to Connor’s primary doctor where we found out he had an ear infection. He began an antibiotic and we held out hope that that was as eventful as the month would get. Two weeks ago we ended up in the ER at CHOP because he was experiencing severe belly pain. After some labs and x-rays, we left with a plan to work through the cause and alleviate the pain. As the old adage goes “things happen in threes” which was the case for our sweet boy. On Wednesday he was admitted to CHOP. His initial diagnosis was thought to be RSV and pneumonia and he was showing signs of dehydration. Further imaging showed that he has lung inflammation consistent with RSV and does not have pneumonia. RSV is a challenging respiratory virus for any kid – give it to a kid with IBD and the complications are exacerbated. In Connor’s case, the original issue from his ER visit two weeks ago has not been fully resolved. He’s still dealing with some belly pain and inflammation and has not been able to return to his baseline. His IBD medication works to calm inflammation, but it also creates a barrier in fighting off other illnesses which is why he is considered to be immunocompromised. He developed a fever along with the RSV. Because of this, his IBD medication has to be paused until he’s able to maintain a fever free status. We thought we were in the clear as of late last night, but this morning my sweet boy (who as we all know has been giving me heart failure since conception) had a little set back. His blood pressure was reading low along with his pulse ox level. This earned him some oxygen which he is still currently on. The plan is to try and ween him as he is able to tolerate it and get to a point where he can be discharged to continue his recovery at home.

As I sit in this familiar hospital room on the 5^th floor of our home away from home compartmentalizing my feelings and holding my breath that we don’t have any more setbacks, I can’t help but wish that we had a different start to the New Year. Even though we are only 24 days into 2025, it feels like we’ve dealt with enough sadness and anxiety to last the whole year. I keep trying to remind myself that the only way forward is through – through the grief of our losses, through the anxiety of Connor’s disease and of keeping life as normal as we can for our other kids. I find myself repeating the mantra that I tell our kids; every day isn’t good, but there is good to be found in every day. The painful losses are a reminder that our time here is finite so we better be living life to its fullest. The doctors’ visits and hospital stays are a reminder to be grateful for the hardworking people in the medical field and that Jason and I have the ability to provide the kind of care that Connor needs to be healthy. I try to remind myself that things could always be worse, but above all I try to lead by example in showing our kids that despite life being really freaking hard sometimes, there is always a way through.

I miss my babies, our fur-babies, and the chaotic “normal-ish” life at home. For now I’m going to keep holding my breath and praying that we get to go back there soon. I’m going to remind myself that sometimes it’s okay to not be okay. Better days are ahead, and I’m going to keep pushing us all through to get to them.