I’m taking a time out. Right now, I could be in Sunday School, and to be honest, my heart breaks a little bit every time I can’t be there. Keeping yourself spiritually afloat is harder when you have to do too much of it on your own. But I could not push my little Patrick any further today than attending an hour of sacrament meeting today. His little body has had enough for one weekend. It was time to slow down. And so we are home having naptime. (Mine begins as soon as this post is written and my mind begins to rest. Blogging is therapeutic.)
My Sunday School lessons will have to come from LDS.org today. And in lieu of his nursery class, Patrick and I will have a nursery lesson of cutting pictures of Jesus out of church magazines to make a sacrament quiet book when he wakes up.
Our afternoon will slow down for a couple of hours. And we’ll make this a day of rest.
Some of the burden of this necessary time out falls on me. Sometimes, I try to make us do too much. And this week has been one of those weeks. Since Thursday morning, our family has participated in an Easter Egg hunt, a webinar on SBS diet, a 2 hour conversation with the IRS, Boy Scout roundtable, a relief society fireside, an elementary school jump-a-thon, music class, and two hockey games. On top of that, we’ve shopped, cleaned, and worked in the yard, moved large furniture, sorted medical bills, done 6 batches of laundry, and planned Sunday dinner to be hosted at our house for us and 6 other people.
I don’t know why we try to do so much sometimes. We are certainly abnormal in the community of parents with severely medically fragile children for trying to do many normal things. This is a blessing to us and we feel helps Patrick to live his life to the very fullest.
But sometimes one little thing goes wrong, and like a tiny string when pulled can unravel a larger garment, a slight glitch can unravel the delicate balance of “normal” in our lives.
Patrick wasn’t quite himself yesterday. He seemed a bit dry and he seemed a bit tired.. But when I checked, his pumps were running, so I just programmed his replacement fluids to run all day instead of for just a couple of hours and went on with the to do list of the day.
He seemed tired early, so I put him down for a nap.. which lasted a long time and I finally woke him because we’d promised to help with some work for Brian’s parents. But when he woke, he was tearful and sleepy. So much so that I didn’t make him wear his brace and let him bring his pacifier.
While Brian worked, to stay out of the way, I took Patrick to the dollar store to shop a bit for Easter. We’d been gone for about an hour and he’d seemed tired, but mostly himself… Until he wasn’t. He put his head down in his arms and kind of whimpered and I knew in my core that something was wrong – not just a little, but a lot.
I rushed to the checkstand, bought what was in my cart and made a hasty retreat back to Granny and Papa’s.
But he wasn’t running a fever and nothing else obvious was wrong. Nothing I could tell a doctor about, at least. His TPN beeped that it was done for the day and I took it off, then sent Patrick outside to play with Papa while I got the next day’s TPN ready.
That’s when I found what was wrong. The bag was full. The pump had said it was running, but from the appearance of things, little if nothing had actually run. The replacement fluids alone had been sustaining him for the day.
To put this in perspective, because Patrick is 100% TPN dependent, he doesn’t get nutrition or hydration from any other source. For him, 24 hours without TPN is like 24 hours with no food or drink… only worse, because his stomach and gut still continue to lose fluid and nutrients, causing severe dehydration. And, because his body depends on a constant slow flow of IV sugars, when those aren’t running, he also becomes hypoglycemic.
I was amazed that he was still up and going.
Brian and I worked together to rush and get TPN back on, praying that the pump would come back to life enough to run while we got home to our spare. We gave Patrick a candy cane to get his blood sugar, which was 55 when we checked it, back up to a safe range. (Sugar is absorbed in the mouth, which is why you give juice and hard candies to a diabetic in trouble.) Then we rushed home.
While Patrick slept in the car, I started some additional fluids running and got a new pump ready for the TPN. He rested for the next hour, and was doing well enough to proceed with our plan for him to go play at my mom’s house while we went to a playoff hockey game.
But today, well, it’s obvious that his little body is still recovering. He’s been trying his best, but we could tell that he needed sleep.
And so here we are. At home, having a time out.
And as much as I wish I were there, I know that it was time to slow down and take care of essentials.
One of the speakers at the Relief Society meeting that I attended this week shared this quote from President Dieter F. Uchtdorf, a member of the first presidency of our church, a prophet and apostle:
“It is good advice to slow down a little, steady the course, and focus on essentials when experiencing adverse conditions. This is a simple but critical lesson to learn… but it’s surprising how easy it is to ignore this lesson when it comes to applying these principles in our own daily lives. When stress levels rise, when distress appears, when tragedy strikes, too often we attempt to keep up the same frantic pace or even accelerate, thinking somehow that the more rushed our pace, the better off we will be.” (Of Things that Matter Most, October 2011)
Now – one day, I will learn to simplify the rest of the week so that it won’t spill into Sundays and sabbath worship quite as often..So I won’t unravel so easily. For today, I’m just going to take a day of rest. Or at least an afternoon.
Patrick Hoopes 