Archives for posts with tag: stubborn

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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IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.

Joy

S4300182_0089Grace turned 10 last week. We celebrated with a few presents and a cupcake for her to smoosh. There were Cheetos for her classes at school and a few lollipops for those who don’t eat Cheetos. We also sent cupcakes to the people at Target Pharmacy and to all three offices of our pediatrician. The people at the pharmacy and at the pediatrician’s do a ton for Grace – and that’s just the stuff we know about!   I’m sure that there is more that we don’t know. Despite the workload she creates they consistently have come through. They’ve been doing it for 10 years.

What Kevin and I have talked about in the leading up to Grace’s birthday has been less about her being 10 and more about how we have been dealing with epilepsy for 10 years.

Grace apart from epilepsy is a pretty cool kid. Although I can’t stack her up against a normal 10 year old, she’s her own version of 10. She definitely has things that she likes and that she doesn’t. She has personality. She has the ability to make noise. Her facial expressions are priceless. She is learning things. I take pride in her stubbornness. (She will not be messed with. She’s not a pushover.) There are people who love her. She knows what’s going on around her. She is genuine. She is funny. And when she looks me in the eye and smiles I’m pretty much just a puddle. We still snuggle each day, often times with her little hand resting on my cheek.

Just this morning she was in physical therapy doing something that’s really hard for her, at one point she took my hand for just a minute. Then she rubbed her face, a sure sign that she is a bit frustrated. After the rub she took my hand again and she began to navigate the obstacle. She is a very tough kid, which you may not see if you don’t really look.

Epilepsy has affected Grace in numerous ways. She’s never really able to be alone. There’s much that’s out of her control, her own body often times won’t do what she wants it to. There’s a randomness to epilepsy, she can be interrupted at any time. Her ability to speak for herself has been impacted. It takes her longer to learn things. It takes her longer to do things. It’s isolating. She’s completely dependent on others (and for Kevin and I the challenge of finding the right “others” is a constant concern). She never really was able to do “regular” kid things and won’t do “regular” adult things. Epilepsy makes her more vulnerable to judgements, to unkindness, and disrespect.

Epilepsy for us as her parents has introduced fear like we’ve never experienced. We too are affected by the randomness of epilepsy. There’s grief. Judgements we face.   A lack of freedom, we really can’t be spontaneous. Paperwork. Medication administration. There are never-ending big and small decisions to be made, often there is no right answer.   We are caregivers 24/7. Fear.   (I said that before but it bears repeating). Isolation.

Some days I try to picture Grace without epilepsy. I really can’t do it well or for very long. The reality of Grace being who she is (with epilepsy), and loving her right where she is at prevents me from going too far down that road.

Our girl is 10. A decade. My how far we have come!

Joy