Archives for posts with tag: intractable

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_2413While Graham and Kevin ran to the library and then to get Grace birthday cupcakes today I fed Grace. As I fed her I turned on Gilmore Girls- the pilot episode.

When I was home on maternity leave with Grace – no knowledge of what was to come- only dreams of how it would be as she grew- we watched a lot of Gilmore Girls. I loved all the relationships on the show – some complicated, some easy, some fun, some hard, all with some kind of love holding them together.

 

And the theme song…
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

As a new mom, I was sure that I’d be able to go wherever Grace led. I imagined our family as a team navigating life ahead. I never considered that we’d take an alternate path.

As I held her today in my lap, feeding her formula through a syringe and tube, watching Gilmore Girls, in some ways, it wasn’t so different from those long ago days snug in the living room of our house on Carpenter Ave. In reality, though it’s much different.

She’s four feet six inches tall now (a foot shorter than me), currently weighing in at 76 pounds. Holding her and feeding her is becoming a bit more challenging. She’s undergone several surgeries. She has seizures. Once they started we’ve never really been able to make them stop. We had to leave our little Carpenter house for a house in Johnston in order to achieve the integration and education we wanted for her. In some ways that has been brilliant, in other ways it’s a continuous struggle. We’ve never had long conversations or embarrassing ones. She did, however, the other night at dinner use her talker several times during the meal to say “I love you,” “no,” and “I want to watch TV”. She’s not playing any musical instruments, singing, or playing any competitive sports. She is, however, a pretty good tambourine player when accompanied by her music therapist, loves toys that play music, calms when I sing to her, and plays a little baseball – where no one ever loses-with Miracle League.

Way back then I’m sure I wanted her to try dancing – although I didn’t imagine the team it would take to have her dance. I’m very grateful that dream came true.

Even when we’d just had Grace we always knew we wanted a brother or sister to join her – to make our family complete. Graham has brought noise to Grace’s life and competition for our attention that she doesn’t always appreciate. This morning when she would rather have slept in Graham insisted she get up at 7 am. As Kevin went in to wake her up Graham turned out all the lights and asked me to hide in the kitchen with him so we could jump out and yell surprise when she came into the living room. I never would have thought to do that. But Graham has forced Kevin and I to think bigger. There were so many things we didn’t know about growing up based on our experience with Grace.

There are a lot of things I wish for her that I’m unsure of still.

I wish I knew that she had friends in her class in school. On tough days I find myself annoyed that any child that comes into contact with Grace seems to be referred to as her friend. I’m feeling truer friendships just won’t ever come and stick.  This does not mean that she is unloved or doesn’t have a community. It’s not the same as that. It’s so hard to explain.

I wish she could have the independence that comes with an experience like college or a trip by yourself. But she will always be dependent.

I wish for her to experience some of the really fun and beautiful places in the world but recognize it will be physically harder for her.

I wish for her to not fade as she gets older. I don’t want her to be less and less in the world.

I wish for her likes and interests to expand because as you get older the world gets bigger. Kevin and I will have to drive that for her.

All of that to say that it’s not going to be exactly the Gilmore Girls song way.

There are times we will lead Grace, way more than we ever will for Graham.

There are also times we will follow her as we work through the system of checks and balances in place for her in the world. We will also follow as her health needs, physical abilities, and communication change. And we will lead the teams and people that surround her to accommodate those changes.

It will be complicated at times, easy at others. I hope we will have fun, but the reality is there will be hard times. Through it all our future will always be based in love.

As the past 11 years have gone by I’ve often caught myself singing Grace the Gilmore Girls theme song. I still will. Even though the meaning isn’t the same as when I began singing it to her – it still applies.

So Happy Birthday Gracie Lou! I can’t believe you are 11. You are wonderful. You are kind. You are funny. You are brave. You are strong. You are quick. You should not be underestimated. I love you very, very much.

 

And …
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

Love, Mom

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It’s epilepsy awareness month. I wish I was organized enough to come up with a thought for each day to share – instead I’ve made this list of 20 thoughts I’d like to share. My list isn’t super-scientific, and it’s filled with my own opinion. I hope it can be a conversation starter if anyone reading this wants to know more about our experience with epilepsy.

1. Epilepsy is random. Seizures happen, and most of the time there is no way to predict it. We know that Grace has more seizures when she is waking up (it’s a big transition the brain makes when going from sleeping to waking, so more can go wrong), when she is tired, when she is sick, and when she is stressed. The thing is that when a seizure comes, we just have to wait for it to stop before we can move on. Sometimes we are late. Sometimes dinner gets cold. (Sometimes I want a sign when I walk in late to places that says “Grace had a seizure and we were delayed.”)
2. People can have seizures but not have epilepsy. You are diagnosed with epilepsy when the seizures are recurrent and non-provoked.
3. For some people with epilepsy a helmet to protect your head is a must! For us, we never know when a seizure will happen, and we know her head can go crashing towards the floor at great speeds. So, Grace wears a helmet. Seizure helmets don’t however have to be brown. Grace’s first helmet was an ugly brown color. The man who ordered it didn’t give us a choice. In my opinion if you have to wear a helmet you might as well have a little fun with it. That is why Grace’s helmet is pink.
4. Epilepsy is a central nervous system disorder.
5. Infantile spasms (which was Grace’s original epilepsy diagnosis) is a rare form of epilepsy. It is considered “catastrophic”. Because it is so rare we quickly learned that we’d have to leave Des Moines to get Grace care. It took us two weeks to figure out what it was for sure. I’ll never forget our pediatrician looking at the small screen of our digital camera at a short movie we’d taken of Grace “crunching”. We had to wait 24 hours after that for her first EEG to confirm what we suspected.
6. An EEG (electroencephalogram) is a test that detects electrical activity in your brain. It takes about an hour to get it set up. Because they have to glue sensors to Grace’s head (and she doesn’t like people touching her head) it’s not a very fun process. Then they record your brain activity for about an hour (or longer). I have prayed for Grace to have a seizure more than once when she is hooked up to EEG wires so that the doctor can see what is happening. I have lost count of how many EEG’s Grace has had.
7. Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. (cureepilepsy.org)
8. Epilepsy doesn’t just affect a person, it affects a family. Grace’s epilepsy affects much of our family life. Not all in a bad way. It requires flexibility. Working together. Awareness. Travel. Multiple trips to Target for meds. Patience. Meetings. Paperwork. Emails. Home health nurses. Therapy appointments/exercises. Space in our home for all the medical things that we need for her. We are trying not to let it hold us back from doing things we want to do. Although I admit, sometimes we hesitate, or delay, in order to build our confidence that we can do what we desire.
9. The official color of epilepsy awareness is purple.
10. Epilepsy is not a monster. I belong to some national parent forums about epilepsy. They are helpful. But one thing that constantly gets me is how parents refer to epilepsy or seizures as a monster. I can’t do that for Grace. Here’s the thing. We have tried mightily and multiple things to stop Grace’s seizures. She has tried and failed at least 12 medications. We went so far as to have part of her brain removed. The seizures still happen. I am not comfortable with thinking that try as we might there are still monsters in our little girl. In our girl there is stubbornness, charm, knowing, goo, fun, thinking, wisdom, and innocence. No monsters. Not here. I want to clarify that I’m not judging those other families – I’m just telling you that is not the picture we are going to use here.
11. Epilepsy is isolating. It’s hard for people to understand. Relate to.
12. Grace has intractable epilepsy. That means that she still has seizures even though we are treating her for them.
13. Epilepsy looks different in different people.
14. Epilepsy is not contagious.
15. Epilepsy can’t stop you from dancing. With the right support epilepsy doesn’t have to keep people from doing what they want to do and enjoying life. For us Grace’s participation in dance signifies that.
16. The bathroom is one of the most dangerous places in the home for someone with epilepsy. Think of all things that can break, you can hit your head on, drown in, and there’s a locked door so no one can get to you. Ugh. When Grace is taking a bath nothing can interrupt that. I won’t leave her for anything.
17. Epilepsy is. I can be mad about it, sad about it, nervous about it, but it’s still going to be there. I’d like to help people understand it. Thank you for taking the time to read this.
18. There is no cure for epilepsy.
19. When we are asked to explain Grace’s epilepsy to her peers we explain it like this. We tell them that epilepsy means that Grace has seizures. We tell them a seizure is like a storm in Grace’s brain. Everything can be going along just fine…blue skies, beautiful day, and then all of sudden out of nowhere a storm pops up to disrupt things. (A seizure happens just like that.) The storm can be short or long but then everything’s ok again, the beautiful day returns. (The disruption in her brain is done and her brain goes back to doing its thing.) They seem to relate to that explanation.
20. I love someone with epilepsy. There’s a saying about how having a child is like having your heart walk around in the world outside of your body. I can totally relate with the thought. Grace having epilepsy adds more vulnerability and risk to that. It scares me at times. Her being out in the world has also brought some wonderful people into our lives.

Thank you again for listening.
Joy