I've been quiet over here for a while, but life has been anything but. After our hospital stay in March I had hopes of easing into the end of the school year and into summer with little to no issues. It seemed like that could be the case for a week or two, but on April 15th all of that changed. That was the day Connor started bleeding again.
If the past three years have taught me anything, it’s to not immediately panic when I see red. Our process is to notify CHOP, give it a few days, and if things don’t improve we get some labs. The labs after this particular episode showed that Connor had a GI infection which is always best case scenario. We just had to let it run its course – typically two weeks – and watch for dehydration and/or lethargy. I was able to breathe a little easier knowing we weren’t sliding down the dark slope… or so I thought.
Two weeks went by and Connor’s symptoms worsened which pushed my anxiety into overdrive. Every day there was a little more blood, and he had a little less energy and no appetite. He lost two pounds and wasn’t his happy-go-lucky little self. It is always hard to watch him battle through; especially when his siblings are their wild and crazy selves and he doesn’t want to join them. The only thing that was keeping us out of the hospital was the fact that he continued to drink a lot of water so his usual dehydration held off. Constant pain and trips to the bathroom kept him out of school for a week. It’s times like these that are hard for him to understand – he’ll ask why he’s the only kid in his class that has belly problems and misses so much school. He misses his teacher and friends and just wants to be a ‘normal’ kid. With an escalation in symptoms the decision was made to increase his medication. I am happy to report that it seems to be doing the trick (for now). My sweet baby is acting more and more like himself every day. We are still working on food intake, but we gained back a pound and are clawing our way back up the slope.
Like I said before I’ve been quiet over here. Every time things take a turn for the worse with Connor I find that I close myself off. The internal fear and anxiety becomes very loud in my head. I compartmentalize my feelings when I have to, but when I’m home I have a difficult time of not letting the fear of the worst sprint to the forefront of my thoughts. I actively try to remind myself that I need to hope for the best, but am constantly questioning how much hope I have left?! Enter a higher power (whichever one you believe in), but for me God – always placing people on my path at the right time to remind me that better days are ahead.
Yesterday was one of those days. Connor had a good week back at school and things are still trending in the right direction, but there is always a little voice in my head saying ‘don’t get too comfortable; things can change in an instant’. Sometimes it is really hard to block it out, but yesterday I was able to close it off for a while thanks to a very special meeting with a guy who started out as a knowledgeable acquaintance, turned friend, turned extension of our family.
You all remember Adam, right?! We got to meet up with Adam in person yesterday! He was in town for a wedding. We were able to hang out with him for an hour in the lobby of his hotel and introduce him to Krispy Kreme donuts (he’s originally from Boston). It’s weird to think that was our first meeting since I feel like I’ve known him forever. Thanks to technology we have been able to video chat a lot of the course of the past year and a half. He has become such a bright spot in all of our lives in a variety of ways – from helping Connor work through the hardest parts of his IBD fight, to showing our kids that hard work and determination can help you achieve your dreams. For me though, Adam is a pillar of hope. He is a constant reminder that there is a light at the end of this long dark tunnel; that Connor will have consistent brighter days ahead and will be able to achieve any dream he sets his sights on. Connor is already talking about when we might be able to see him again because he wants to challenge him to a Mario Cart race.
I woke up today feeling a little lighter. The heavy burden of worrying is pushed to the back of my mind. Yesterday was a good day; a day where I was able to forget about what could potentially happen and instead be present and enjoy the day. From our meeting with Adam to an afternoon in the pool, Sadie had a school dance, then we all celebrated one of my favorite high school graduates, the six of us had a fun day with a lot of laughs (and the usual sibling bickering). I know some days will be harder than others to quiet my mind, but this weekend reminded me of the importance of holding onto the hope and ignoring the slippery slope.
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