Tuesday Thoughts

22 Apr

Everyone has gone back to school, spring holidays are over, and once again I find myself alone in my house talking to my dogs.

I’ve had moments this week where thoughts pop into my head.  Things I don’t dwell on because, frankly, there is no point in dwelling on them.  But in the spirit of “I shall overshare so others don’t feel alone”, I’m going to share these thoughts…

Thoughts like…

On Saturday, I took Miriam with me to a free makeover event at Ulta.  We got our nails done and tried on colors we wouldn’t normally go for.  We had fun.  Before leaving, I was in the shower thinking about how Mim was going to enjoy this…and that in a way, Miriam is the only daughter I have that I can do such stuff with.

Not that Maura doesn’t enjoy girly things.  On the contrary.  But it isn’t the same as going out with Miriam, who has very solid opinions on make up, for both herself and for me.   With Maura, there is a level of interaction that is missing.  But instead of dwelling on what I could and couldn’t do with Maura, I decided to just be grateful I have one daughter I can share such afternoons with.

Then there was last night, as we were getting Maura ready for bed, when I realized there was blood on the side of her head.  Dried blood.  I started wiping it away, to find the source…and realize the source wasn’t on her head.  But there was blood on her hand as well, and a little under her chin.  At that point, Josh is questioning the teens, who didn’t know anything about blood (and they are pretty good when it comes to Maura and injuries), and I started checking her scalp while asking Josh to check her mouth.  Turns out she must have bumped the inside of her lip, sucked her thumb and thus blood getting here and there.

That was just one of those cases of “My child can’t tell me what’s wrong.” that we deal with more than we’d like.  Maura could understand just enough to start saying “I’m sorry” for whatever she did, poor girl.  We told her NO! Don’t be sorry!  You’re good!  We just wanted to know where the booboo was! And she relaxed.

And Monday morning, I had to shower Maura,  only for me to realize yet again that she’s getting really tall.  She’s nearly my height.  She’ll be taller than me by the time she finishes growing.  And I’m stretching as is now to wash the top of her head, thinking how we need a tub she steps down into, so she’s at a lower level than me, so I can still get the top of her head.  And that maybe we need some hand holds in the tub so she has something to hold onto when she steps in and out of the tub.  Which lead to the thoughts about having a child with only minor physical disabilities, really barely even that, just more motor planning disabilities and how there’s really nothing out there for people like Maura.  There’s no guides on having a house with just minor adjustments.  But at the same time, we’re renting, so we couldn’t do anything anyway, not permanently, so I have time to plan out things for when Maura does get taller than me.  That said, she has to sit down now if I’m doing her hair, just so I can see clearly what I’m doing.  Yes, the straight part is important to me!

But when these thoughts about what Maura can’t do invade my head, I’m also reminded at how she just keeps chugging along, trying out everything.  She’s trying to figure out how to make her own hot chocolate, which results in a big mess and a mug full of powder with a touch of milk.  She’s really into learning how to cut her own food, and is very determined to do so.  (Thank you God in Heaven for butter knives!)  She is getting quite able to dress herself these days, when she wants to.  Her independent streak is as bright and bold as ever, which delights and terrifies us at the same time.

I should probably hide the car keys now.  At some point, she might think she can drive.


8 Responses to “Tuesday Thoughts”

  1. Janet McIntosh April 22, 2014 at 3:30 pm #

    You might consider a bath stool so she can sit when you are washing her hair. We have one for our daughter. She is not taller than us, but she is unsteady in the shower, so we find it safer to have her sit through most of her bath/shower.

  2. Liz Palika April 22, 2014 at 3:33 pm #


  3. saracvt April 22, 2014 at 4:07 pm #

    You need a tub chair–only one you can take in and out so the other kids can use the shower, too. Hmm–a plastic folding chair?

    Sorry–I’m not at my best today. I’m titrating off one epilepsy med and onto another, and while I KNOW the change is good for me, right now the combo is giving me intense nausea. Such that I have a barf bucket by me at all times & can’t even THINK about chocolate. Or even crackers. Yeah, that bad. But it’ll get better.

    I keep telling myself that.

  4. Joy M. Newcom April 22, 2014 at 4:17 pm #

    I connect. We are a bit farther down the road than you – into “where will we retire?” territory and “can we afford to remodel ANOTHER home?” Because we always want our son to be able to visit our home even after – eventually – he gets into some sort of supported living home/apartment/center (he will be able to, won’t he?). Some place where we are not the only ones caring for his (major) physical and intellectual disabilities, because we are getting old enough that our bodies are breaking from some pretty intentional overuse for things like wheelchair assists, bathing, exercising, and just plain fun (bowling, hiking, concerts, etc.). I find I have adopted the Scarlett O’Hara method of coping. I’ll do whatever it will take – but tomorrow. After all, tomorrow is another day.

  5. Marci (@TheMarciFactor) April 22, 2014 at 4:36 pm #

    I’ve not had to deal with a child with disabilities for a while, but I do have my husband. As a result of Iraq, he has hydrocephalus and TBI along with a little PTSD thrown in. We have to constantly be careful because he does fall a lot. And the only good thing about our house that we’re renting is that the owner was handicapped, so there are the wide doorways, which we don’t really need, but the bathroom is a little more accessible than most. We have a ramp on the front porch, which covers the only stairs in our house and takes one less worry from me. We always focus on how he can play with our son, instead of what we can’t do. Though we do have to remind our son not to hit daddy’s head when they play. And, I don’t like to leave them alone often. Those of us with adults that have disabilities are often forgotten. We worry about the here and now, and less often with what has been or what should have been. We have the happy times, and that’s all that matters! You have a very happy child, and she knows nothing else…though I would second that hiding the keys thing. Even a two (now five) year old, thinks they can drive on a farm!!

  6. April 23, 2014 at 9:39 am #

    Thanks for putting in words some of the same feelings I have. I so enjoy reading your blog!

  7. phoebz4 April 23, 2014 at 10:27 am #

    It wouldn’t even have to lock – just be a manipulative she can’t manage (there are benefits to fine motor skill issues, lol!) – a puzzle lock that doesn’t need a key…

    Hmmm…now I’m thinking…

  8. wendy April 23, 2014 at 1:36 pm #

    I looked in to a few things for my balance-impaired parents. Bath/shower seat, suction cup grab bars, and handles that clamp on to the edge of the bath are all removable for a rental. Maybe something like that would work?

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