Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Can I talk about how much this sucks?

on October 4, 2012

Since Sept 5 -one month – I’ve been in my own home 7 days, not consecutively. I’ve seen my own kids for 7 days plus breakfast one day when they visited. That’s 7 days out of 30.

One of the benefits of being a stay at home mom is that I’ve never had to hear about what my kids are doing from other people. I have never had to rely on other people to essentially raise my children like I would have to do if I were working. Now, suddenly, I do. My kids have had experiences that I will never hear about. They’ve seen movies I am not aware of. Read books with which I’m unfamiliar. Gone places and done things that I don’t know about. And it’s different from if I were working. Randy comes home from work and hears about our day over dinner – if we went anywhere, what we learned in school, chores we did, crafts we made, whatever. I often don’t hear the details of their days.

Here at the hospital, I run into random people I do not recognize in the hallway who know Teddy because too, too many people in this hospital see him often. I like that the lunch line checkout guy knows him and me. It’s comfortable and friendly and makes it seem like a small town when we go there. But I hate it, too. I hate that the lunch line checkout guy knows us. What the hell? What kind of pathetic person has a relationship with the lunch line checkout guy? Same thing with the patient library manager and volunteers. I’m on a first-name basis with the janitorial staff.

And whereas I know people who’ve had far longer hospital stays (and, to be fair, a portion of this time away from home has been outpatient) and who are in the hospital for far worse reasons… that doesn’t mean this sucks any less.

I miss my kids. It’s not realistic to drive back to see them during the week – I can’t leave Teddy here by himself. Randy can’t come out and stay with him. I have to be here. They have to be there.

Though I will note that I’m starting to worry about their mental health. Not like I think they have mental problems, but I think they’re just really stressed out and having trouble dealing with the uncertainty and Genna feels a little betrayed and I feel like I should be able to help them, I should be able to wave the magic wand and make it all go away, but I can’t. I don’t know how to help them.

And then when I do get home, I’m usually pretty stressed out, and they’re stressed out, and it comes out as misbehavior, and I don’t have the highest tolerance level when I’m already stressed out… and we struggle with that, too. sigh.

And? School. What are we going to do? If I get out of here in 2 weeks, take no breaks except 1 week for Christmas, our last week of school starts July 1. Please note that schedule is extremely unrealistic, though perhaps if we can avoid additional infections, any unplanned hospital stays would be short (less than a week) and allow us to still get in a full week of school.

And yes, as everyone tells me, the benefit of homeschooling is that it’s so flexible! Don’t worry about it! You can catch up next year! Blah blah blah! Yes, yes, that’s all true. And I keep our plans pretty loose, because I tend to stress out when I’ve made concrete plans and then must change them. But the things we want to learn for 3rd grade (which include finishing our 3rd grade math book and our 3rd grade language book) are just simply going to take a set amount of time. No matter how much I might want to, we can’t power through 3 math lessons in one day and expect any of that to stick. It just takes a certain amount of time to learn and to percolate, and you can’t rush it. And I’m not willing to just wave it off and decide to finish 3rd grade during the 4th grade year because I have no confidence that things are going to get better. I don’t feel like I can let things slide this year, because then what if I need to let things slide next year, and the year after that? We’ll still be doing 3rd grade 4 years from now!!

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2 responses to “Can I talk about how much this sucks?

  1. Steve Parker says:

    Yes that does suck

  2. Jamie Burdorf says:

    Sarah,
    My husband asked me a couple days ago if I had read your blog. I hadn’t. He told me to go read it because you had problems with Teddy’s catheter, again. My heart just aches for you. The frustration of the non-working catheter, but like you said, the being away from your kids. That’s what life is all about, your family, and to have to mess up the routine and being away from them just SUCKS. I think of you and pray for you all often. Hang in their mama!

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