Archives for posts with tag: assistive technology

IMG-9604This is Grace’s communication book from school. She’s had a lot of “not great” days this year. I’m glad the school tells us, but it’s hard to see. First, it makes me sad. I want her to do well. I want her to pay attention, learn, be part of the action. I want her to succeed. I want her to not cause her teachers more stress than she should.

Then I wonder what I can do about it.   She could get a “not great” related to seizures, tiredness, or unwillingness to participate.

Seizure control continues to evade us. (I don’t expect total seizure control – I expect minimal disruption from seizures). She went through a period where she was having some really hard seizures. That period seems to have passed.   But we still have some med changes to get through.   I’ve been putting off the med changes because I just don’t feel like she’s ready.  At times I feel guilty about that.  I don’t want to have her on more meds than she needs, but every time we change her meds it messes up her equilibrium. Sometimes it’s easier to stay with what you know than to take a risk that things will be worse. That’s especially true when things feel hectic.

If seizures aren’t bad enough seizures make you tired. But she’s also tired on days when she isn’t having a lot of seizures. This weekend I woke her up at 9 am. I’m 100% certain she would have kept sleeping but she had to play baseball. Is she just tired because she’s 11? Is she tired because her brain activity isn’t allowing her to rest well? Is she tired from meds? Is she tired from stress? Is she just bored? Is it something else? I don’t know.

And then there’s the whole thing about her being unwilling to participate. So then I wonder if what she’s doing is not interesting to her? Is she bored? How do we spark her energy? How much imagination does she have? There are times I delight in her attitude – it means she has spunk! “Not great” days don’t really bring out that delight.

I can’t incentivize her. I can’t punish her. I can pep talk her all I want but all she does then is look me in the eye or lean her cheek toward me to rest her head on mine.

So I’m stuck. The “not greats” tell me something but the rest of the picture is incredibly vague.

In the midst of not knowing I have to stick to what I do know. Something will become clear, but in Grace’s time, not mine. I can’t be scared to push – she needs that. I know her team is working hard. I continue to thank them and try to signal I hear what they are telling me. I update them on all things Grace I can think of.  And finally, I just have to believe that this will pass. The good and great can come again.

Joy

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Maybe it’s because the laundry is piling up- because there are smaller loads caused by Grace’s random “schedule”.

Maybe it’s because Graham can’t quite grasp the concept that he should put a toy away if he doesn’t want Grace to chew on it.

Maybe it’s because Grace had five days of one hard seizure a day because of an illness that should have shown up other ways. And it wiped her out. (At least we have it figured out now!)

Maybe it’s because the medicines she needs to get better are hard to find, even with all the pharmacies in Des Moines. And then there are all the phone calls that go with illness.

Maybe it’s because Graham is having trouble separating from me morning and evening.

Maybe it’s because no one person seems to know how to work the assistive technology we are trying with Grace, but the rep thinks we should just call the help line…..like we don’t have three million other calls to make. Why can’t it just work?

Maybe it’s because caring for Grace means caring for her 24/7 – always, always, always, being “on call”?

Maybe it’s because we are planning for if Kevin or I or both of us would die. And it’s depressing. Big. Messy.

Maybe it’s because the teachers at school can do better at Grace’s hair then I can.

Maybe it’s the threat of a surgery that would reroute Grace’s urine through her appendix and out her belly button.

Maybe it’s because I’m feeling like I have to redefine inclusion for Grace or risk driving myself nuts.

Maybe it’s because I’m trying to eat healthier and not eat ice cream very often.

Maybe it’s because Grace is about to turn 9, and I’m not a big fan of her birthday- the day that signifies the gap- the unrealized dreams- and the momdom journey I never thought would be mine.

Maybe it’s because my hands are so cracked from washing, bathing, and cleaning that they are painful.

Maybe it’s because when I’m with Grace and Graham by myself I still don’t feel like I can meet both of their needs effectively….someone gets a late supper, or someone gets to bed late and gets rushed through stories and bedtime snuggles.

Maybe it’s because Kevin and I both have jobs that take us out of the picture every now and then and there’s a lot of prepping and planning that needs to happen for that.

And maybe it’s a combination of a few of those things…..

If you took the time to read all that, let me give you a happier ending. One morning this week I got to work and took off my dress coat and had a moment. I went to put my car keys in my pocket and noticed that my coat is covered in fuzz. Pink fuzz. The fuzz is from Grace’s coat. I have earned that fuzz lifting Grace in and out of the van to therapy, church, appointments, errands, school, etc. In my coat pocket there was a pill crusher we used for Grace’s meds (that I never took out after we went bowling with friends over the weekend), Graham’s kaleidoscope, a prize of Graham’s, a pink pen I put in my pocket to take to a presentation I made about Grace, and Kleenex from wiping two little noses.

In that moment I just let it soak in that my life is intertwined with these two little people and the man who I share them with. Inescapably so. Funk or no funk. I promised myself I would find a way to relax. I have to. None of it is really their fault. It’s just a lot. It’s just part of how our family works. There are times like this when it feels like Grace is just falling apart and it takes everything we have to put her back together. The world keeps on spinning as we do that…and that line we walk between handling things and being overwhelmed gets crossed. We try so hard not to be defined by any one member of our family, but it happens from time to time. I needed to write about it this time- to remind myself. And maybe, just maybe it will remind me to relax somewhere else down the line.

Joy