I’ve been holding back from posting this to you guys — not that I don’t want to share it, but there is always a fine/blurry line between sharing and over-sharing in blog land. Especially when it comes down to your kiddos.
One thing I have learned though, is that through sharing, I’ve learned, I’ve connected with others, and in the end I’ve found support and the ability to relate to so many people (like you!) The truth is, this past month or so has been a complete blur to the hubs and I. Those super close to us know why, even those close enough don’t really know what’s been going on. Lack of asking, avoiding talking about it, or just not going into great detail.
This morning just tipped me over the line of sharing, because I found myself at B’s school – with Dan, talking with faculty, who they themselves were getting choked up about B’s situation. When other people get teared up about your kiddo, it really brings to light that how we’ve been feeling the past month is completely justified and okay. I think it was so reassuring to see that other people truly understood – took the time to talk with us.
So I kept my hormonal pregnant self in check, kissed the hubs goodbye at the car and then lost my shit when Josh Groban + Celine Dion’s song “the prayer” came on my pandora. Yes, Celine Dion and Josh Groban are two of my favorite singers. You don’t have to listen to the whole thing, but it could not have come at a better time.
I know, cue the tears.
I’ve spoken a bit here and there about B’s diagnosis of Ulcerative Colitis. We were lucky enough to go 2 years since his official first flare up + diagnosis. Unfortunately, he caught C-diff somehow in the beginning of the school year, and then hit with the stomach flu a month later. Leaving his body out of sorts and apparently opened the doors to yet another flare up. He’s 6 now, so fully aware, super in touch with how he is feeling and his emotions and the entire flare up knocked him on his ass for a few weeks.
He missed 8 days of school, following with a week of “1/2” day to make a gentler transition (as his symptoms were still going strong), but it kept him in the loop. Last week we started with full days … and well, it’s been an absolute mess. Tears, I mean, epic-hyperventilating-to the point of almost passing out hysterics before school in the morning. During the day we’d get phone calls with him whaling in the background. It wasn’t just him being emotional, he’d feel sick and panic – not knowing if he’d get sick in front of his classmates. We’ve had to filter each day and figure it out as we go.
It’s left Dan and I super flustered – because this is NOT the B we know. We did not know if he was in pain, if we pushed him back too soon or what. I spoke with his doctor last week, officially hearing what I was hoping… the steroids he was on (the amount) unfortunately was bringing all of this on. Some kids get super hyper active, and some kids get depressed/anxious and sad.
No parent wants to see their child sick – on top of that go through all of these emotions and breakdowns, all because of medicine. We thankfully got the pass to lower to steroid amount by his doctor which has helped a bit. It’ll take time for it to get out of his system. Then we meet this week to discuss the next steps to get him into remission.
As overwhelming as it is, the hardest part has been keeping our composure – trust me when I say it brings tears to both of our eyes to see this little guy so not himself. The looks we get when out when he has a meltdown, or gets worked up. It angers me so deeply when people judge, or assume — HE’S SIX! That’s all I want to yell at people. What his body is going through most adults couldn’t handle.
He’s having a hard time in public a lot. Most family functions he wont eat in front of people, we pack up food to go. It’s just been a lot to swallow, a lot to adjust to, and putting on a brave happy face for him. We have no idea what’s next, if he’ll go years before another flare up. His doctor said the disease is progressing – ugh, which I try to push out of my mind.
His falculty today said to us, “You guys are such great parents, he’s so lucky to have you.” and all I could say back was “Oh, thanks, but we’re the ones lucky to have him.” And it couldn’t be more true. This is a moment in time, a tough, shitty moment in time, but he will be okay. We’ll get through it as a family.
I just wanted to put it out there, becuase especially as you’re out and about during this chaotic holiday season to keep in mind that each person you meet is fighting their own battle. To be kind, not quick to judge, and be the light in someone elses day.
Bright red eyes after I let myself cry after todays quick school meeting, I drove through Starbucks and just prayed no one would ask me how I was — in fear I would just lose it all over again.
I pray that he’ll be alright, that this fog the medicine is putting him in is doing it’s part to heal him and will quickly fade to bring him back to himself. It’s only the beginning, we’re learning as we go. But this morning was exactly what we needed. Recognition from practical strangers, TRUE understanding, empathy and support — they know B well (he helps a ton in the office since K) and they too understand this phase is beyond his control and ours. And we are just doing our best to navigate it all.
So, my apologies for the silence around here. The days have been so long and consumed with phonecalls and putting on a brave face around friends and family.
I told him this morning, that the sadness he feels is temporary – that it will all go away, to focus on the happy things in his day. But my gosh, it’s so much easier said than done for a kid whose going through so much.
Love that boy, grateful for my hubs that is beyond loving and just as compassionate as I for our boys and just praying for a turn around over the holidays.
Yes, that’s all I want for Christmas —