A House Hot Mess



We’ve been seriously looking at zero-entry, handicap accessible houses.

I’ve started de-cluttering and cleaning and organizing in order to get our house ready to show.  ‘Cause we can’t buy a house until we offload this one.

So it’s serious.  Scrub-the-shower-and-put-the-extra-towels-away serious.

Do we need to move today?

Nope.  Our house fits us.

But we don’t know how quickly things will change.  David holds out hope that they won’t.  That with Cee’s hips pretty close to fused, she’s already at the peak-worst-mobility.

We’ve been going back and forth for a couple weeks.  Should we?  Shouldn’t we?  Should we?  Shouldn’t we.

I’ve been in Camp Move.  David’s in Camp Stay.

They say it’s not right to make decisions out of fear.  

I want to move now so that there are happy memories in a new home before things go south-er.
David wants to stay so we don’t leave the house with happy memories if things go south-er.

Same fear.  Different conclusion.

What are the chances that Cee will be come completely wheelchair bound in the next year?
Can our house accommodate that possibility?
Should we upgrade to an accessible house just because it’s accessible, and even if it’s not perfect for us?

There’s no way to know.  Should we?  Shouldn’t we?  Should we?  Shouldn’t we?

Plus things are…complicated.

This is the house where Cee used to run.  For real, run.  No just the awkward, quick gait she calls running now.

This is the house where she would race up the stairs to see David when he came home from work.

This is the house where she would jump from couch to piano bench to chair playing hot lava.

This is the house where everything changed.

Where we watched her waste away, begging her all day to take a sip of water or bite of food.

Where I searched for new sites to inject her daily medication because her poor legs and behind were so clustered with old injection marks.

Where we couldn’t hug her or jostle her or touch her or even breathe on her because it hurt too much.

We agonized over purchasing a wheelchair because it meant accepting a reality we didn’t want to face.  This is like buying a million wheelchairs.  Where do you put the emotional baggage of a million wheelchairs?!?!

Ghosts of memories we can’t bear to leave.  Maybe that just takes care of that.  Maybe we can’t leave because this is our last tie everything Before, the mystical life that gets fuzzier and fuzzier as the years pass.


I have tried to be positive and excited about the possibility of moving.  We had figured we’d outgrow our house eventually, so this just moves up the time table.

Leaving this house doesn’t mean we’re letting go of Before.  Or does it?  Maybe that’s a good thing.  Maybe it’s good to let go of any expectation that things are going to return to Before.  That ship has sailed.  We’ve known that with her diagnosis, we have hope of short periods of remission, but not much hope of anything permanent or long-term.  She will not get better.

Our life now is hospital visits and physical therapy and sharps containers.  Even if everything goes completely perfectly, that is still our reality.

I don’t want to make the wrong choice.

While our house moving discussion involves ramps and wide doorways and office space, it dances around our biggest fear.

Our biggest fear is facing life without Cee.

There.  I said it.

That’s the thing that is most terrifying.  This week another family in our online SJIA group lost a son.  The group has only 600 members.

If we lose Cee, would we want to still be in this house?

Then again, do we want to live here forever, even if the perfect house comes up, even if we outgrow it completely, because we are afraid of leaving memories on the off chance that our battle ends?

This is the weirdest house moving issue ever.  She is here.  She is happy.  Why is this such a concern?

I hate that my brain works like this.  I hate that these thoughts are even in there.

This is our life.  How do we make the best of it going forward?  Is it a move (just to get ready for the next nosedive)?  Or is it staying right where we are?

Could someone please just tell me what the prudent, rational, grownup decision is?  Should we stay here forever?  Or should we find something new that addresses our future?

Okay.  After hashing it out for the hundredth time, David and I got to the same page.

What we want to do is find an acre or two in the country and build a house that checks all our boxes.  Ultimately we want a house that we choose because we love it and want it, not because we feel like we don’t have any other options.  Not because we are afraid of how bad the future will be.  But because we are excited about how good the future will be.

We don’t want to make a big decision because of fear.  And that’s where we are right now.  Running around trying to do something, anything, so it feels like we’re making progress.

What we really want is a covered porch (so Cee can read outside in the rain) and a backyard with lots of bugs for Elle to investigate and dirt for Moe to poke with sticks.  And a main floor laundry big enough for me to nap in.  And enough bedrooms and bathrooms on the main floor so Cee doesn’t ever have to go downstairs.  It’s really not a super long list of musts.

If you’re local, please pass along any hot tips about little bits of land or already built handicap accessible homes.  We want to be excited about the future again instead of just being perpetual puddles of worry.


  1. // Reply

    I was going back and forth with you while reading…my heart not really knowing the answer for you either. And then you and David got on the same page and….yes. Yes I feel such a peace and beauty from what you have described as your “same page”. That. Do that. (Not that it’s really up to me. Not that you are taking votes.) It sounds so beautiful…so right…and so very very good.

  2. // Reply

    There is so much emotion surrounding this move! This makes me think of how agonizing it is for the elderly to move out of a decades-long family home into one accessible for their diminishing needs. I am going to pray for you to feel peace and that God will place in your path an absolutely lovely home for all kinds of new memories to be created.

  3. // Reply

    Prayers for your house hunt and house selling! Leaving a house with deep memories is a struggle. As many problems as our last apartment had (like we’re talking mold that made us sick and interesting structural quirks) it was a little sad to leave it because it’s the place where our daughter was born. That’s not replaceable but moving on (and out) was truly the right call.

    I hope y’all can build that dream house and let yourselves have dreams for the future! I cannot imagine how hard this is for you, and I admire how positive you’ve been.

  4. // Reply

    I will add you to my St. Joseph prayer list. You told me he would help us, and he did. And now I’m sure he will continue to pray for your family.

  5. // Reply

    “A house that we choose because we love it and want it, not because we feel like we don’t have any other options.”

    I think that’s perfect.

    I resonate so much with so much of what you are saying; we are also getting our house ready for sale and trying not to be consumed with worry, fear, and pining for better times, though our situation is not like yours, really, at all, and I feel that your burden is much heavier than mine. Prayers!!

  6. // Reply

    You are such a powerful writer, Alicia. I can just feel your agony over this decision and I’m as confused as you as to the “right” thing to do… if there ever is such a thing. Houses are powerful things. They have SO many memories and just leaving them behind, especially when they’re so loaded as they reason why you’d be moving, well that just complicates things all the more. I think you’ve come to a good conclusion. Prayer works.

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