Learning a New Normal

The hospital stay after Declan’s surgery was mostly uneventful. The staff all love him of course. There were all the regular nurse and doctor visits to check that he was recovering well. By the end of the first night he was basically back to his old self again, only with some new equipment. We could have checked out Thursday, but since Declan was scheduled for an MRI on Friday we decided it would be best to stay one more night. That way Declan wouldn’t have to have his IV taken out then reinserted the next day. Also, as the Neurosurgeon pointed out, an extra day of observation can’t hurt.

As expected, getting the little guy discharged took quite a long time. We did have a nice chat with one of the pediatric residents who we got along with particularly well. We asked a lot of questions we already knew the answer to because we were scared that we didn’t know them. Towards the end of the conversation Kayleigh said what were were both thinking. Half jokingly she said something like, “I’m not sure we’re qulaified to take him home. Shouldn’t a doctor or nurse be coming with us?” This prompted a slightly concerned look from the Doc, but we laughed and convinced him this wasn’t a serious question.

Then we went home, where we realized that we really don’t feel qualified. There are so many things to look out for. What if his stitches start looking strange? What if Amelia drops (another) toy on his head? What if he spits up? What if, what if, what if? What it all boils down to though, is that we have to adjust to a new normal.

In the new normal, we may have to make a visit to the emergency room at any time. We have to be prepared for that. In the new normal, a simple fever may not be just a simple fever. We’ll have to be prepared to call Declan’s Pediatrician any time he has a fever. In our new normal we have to learn to be always vigilant for signs that his shunt is failing, and there are many. In the new normal though, we still have 2 children that we love beyond words and we’d do anything for them. We also still have each other, and all of our family and friends who have been so supportive. These things will not change.

After some time passes, at least we can know that it won’t be “new” anymore. It will just be normal. We’ll grow used to the fact that everyday will involve the possiblity that we may end up in the hospital. The prospect that our son may have to have another surgery at any time will just be one more thing in a list of pieces that add up to who we are. We’ll grow used to it, and as long as we don’t become complacent, Declan will be just fine. He’ll likely spend more time in the hospital than the average kid, but so did I, and I turned out reasonably well.

I was going to end this with a quote about living with change. Instead, do you know a good one? Do me a favor and throw some inspiration our way.

About Roland B

A dad learning to live.

Posted on May 29, 2011, in Declan's Diagnosis and tagged , , . Bookmark the permalink. 2 Comments.

  1. I don’t read many blogs. They have a tendency to be self serving and an extension of an “all about me” fan club. What’s worse, they’re often poorly written. Nothing could be farther from the truth here. I truly felt a visceral connection to your anxiety, to the questions. Kids are full of “what if’s”. Every day brings on new fears and concerns, and it gets worse. Wait till they start driving. Wait till they don’t make it home when they’re supposed to be. Wait till you get a call saying “Dad, I got arrested”. Ultimately though, the best guide we can have is our hearts. We do everything we do for our children with not just the best intentions, but to try to help be the best we can be so we can be that best for them. Things happen, and when they do, we adapt to that “new normal” and carry on. Declan is truly blessed in many ways, but at the top of that list is having to wonderful parents who are dedicated to learning how to be the best that they can be. No one can ask for more than that, and many can’t hope for that. I was moved by your blog Roland. You have the ability to communicate truths, as well as having your Mom’s gift for telling a story. I don’t know if you’ve read any of her writing, but she’s truly gifted as well. Thank you for sharing.

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