Friday, October 11, 2013

An Open Letter to Jerry Kill, Head Coach of the University of Minnesota Football Team

Dear Coach Kill,

If I ever have the chance to meet you, I might just hug your neck. And I'd probably say "thank you" if I could manage any words at the time.

See, I am the mother of a daughter with epilepsy. Like you, my Ella Claire has seizures that are not well-controlled by any medications thus far. She has benefited from brain surgery which reduced her frequency, but still the seizures come. And I know that her story is not unique, that some twenty percent of the millions of people who have epilepsy do not respond to any medication currently available. Yet epilepsy is barely a blip on the radar of the general public and is, for the most part, an invisible condition. That is, unless a person has a seizure in public.

When I see you on TV--on ESPN of all places, talking plainly about your very public seizures and the need for a cure and normalizing this poorly understood, barely researched, grossly underfunded condition, I am encouraged and thankful. In the macho world of football, and in our greater society as a whole that often values invincibility and the perception of perfection above all else, you are a breath of fresh air with your vulnerability and unapologetic authenticity. You probably didn't set out to be a spokesperson; you might even be embarrassed by all the attention, and some people have said some very ignorant things about you and epilepsy in general because of your story being out there. But I want to thank you for weathering all that for the sake of the cause.

Your advocacy sends a message that just because a person has seizures, and even if those seizures are not well-controlled, it doesn't mean that they should be disqualified from life. It means that we all need to continue to fight the good fight to find better therapies, to raise awareness, and to de-stigmatize and be inclusive of those who have epilepsy.

I read today that you will be taking an indefinite leave of absence from coaching in order to pursue options for better control of your epilepsy. It is my sincere hope that you and your doctors find a combination that works for you, and I wish you all the best. When and if you choose to return to the sidelines, I will be rooting for you and your Golden Gophers. They have supported you well and are to be commended also.

With sincere thanks,
Megan Daniel
Mom to Ella Claire, 4 years old, complex partial epilepsy

Co-chair, Child Neurology Foundation Infantile Spasms Parent Advocacy Committee

Thursday, January 3, 2013

Wednesday, January 2, 2013

Jumping back in with an update

I haven't posted in almost five months? Surely that can't be right. Time is passing at lightning speed these days, I guess.


A brief summary is in order, but you probably already know that I can't be brief.

Husband and I are still at the same jobs, and we still live in the same house--all records for length of time for those respective categories.

The kids are growing like weeds. "Baby" Corie, whom I've talked about maybe three times on this blog, is already one year old as of December. We expect her to walk any, any day now. Just yesterday, she started standing up in the middle of the floor without holding on to anything. She's the silliest, easiest going baby of them all. Except perhaps when you try to feed her something she doesn't want to eat. Ella is big! She is wearing the same size clothes as Cooper, who is two years her senior. She is so smart and sweet and strong-willed that my heart could just burst. Cooper had a slow start to kindergarten, but now I think he's totally buying into the whole thing. He is constantly telling us what blank plus blank equals and trying to read and write words. Also, he loves to draw (fairly amazing) pictures and love notes one minute and the next minute he is karate chopping all the imaginary bad guys in the house. Jackson continues to love school. He loves knowing how the world works and why things are the way they are, so if you are around him any time soon please be read up on all topics in the world or have your smart phone handy. Ha!

Ella is doing well post-surgery. It's hard to qualify that, actually. The frequency of her seizures is way down from last year, but they still come. She had one this morning, in fact. And there was a time last month when she had two within a few days of each other. She had been going more than 2 months in between previous to that. Her doctors have started her on a third seizure medication. It had been well over a year since we tried anything but medication increases (other than surgery, of course), so I was kind of hopeful for a break from seizures. She is still not at the optimal dose yet, so we'll reserve judgement, but it was a bummer.

Ella is probably going to have more surgery soon--this time to correct what is thought to be a congenital bone defect in her skull that is allowing brain tissue to protrude into the sinuses. It makes her a high risk for contracting meningitis, and we wouldn't have known about it if we weren't dealing with seizures, so there's a silver lining for ya. We are waiting for word on when her appointment is with neurosurgery and will know more after that.

She was evaluated last month for an augmentative communication device, and it was recommended that we get her an iPad because she is already familiar with and shows preference for the platform. My parents graciously gave us theirs, and right away we decked it out with a military-grade case in, you guessed it, purple. Ella is very interested in talking and being understood. She takes comfort in knowing what sounds are and needs reassurance that everything is going to be okay. She squeezes me so tight when I get what she is trying to say; it melts me. I can only imagine all the more trust and love that will come when we get her acclimated to using the speech app to help her make those connections. We are also looking to integrate more signing in our home. She apparently is the poster child in her class at school for signs--she already knows all the colors, hers and all her friends' names (shorthand of course), and several other nouns. It exciting!

Friday, August 17, 2012

The mara-coaster

Having a child with seizures, and I would say any disease or disorder of a chronic nature, has been compared to both a roller coaster and a marathon. I like parts of both of these analogies.

The roller coaster is obvious with its ups and nausea-inducing drops, dark tunnels, and the pressure of so many G-forces through unexpected turns. But eventually the ride stops, and you get off and go about your merry way. So, this analogy breaks down after three minutes.

The marathon works for a little while because it is supposed to remind you that you must pace yourself through so many trials and tests. You must not let your mind and body sprint through the diagnosis and beyond or you will collapse. But see, in real life, with real things, you do collapse sometimes, and even then you are not disqualified from the race. It keeps on going even if you must be dragged on your face through it for a while. And in real life, we never pace ourselves. We try to outrun the sad stuff or to soak forever in the hot tub of the good stuff, as if we never have to get out. The marathon analogy leaves me wanting too.

It's really some hybrid of the two, but even than breaks down after a while, as do all analogies really.

Words are just words.

And there are times, even for a logophile like me, that words have no meaning. During those times, platitudes and analogies fail, and I just want to be sad in the silence for a while. I'll get over it, sooner than later most likely, and sure I'll "deal," but I have decided to give myself permission to grieve things along the way. And not apologize for the fact that I need to grieve things. I don't think I ever lose sight of the blessings in my life or the hardship in anyone else's, just that for a few moments The Most Recent Disappointing Thing is the worst thing I am currently dealing with.

Yesterday's Disappointing Thing was that Ella had a seizure, her second post-surgery. I already know this: it's all relative because last year alone she had over 80. Prior to surgery we would be celebrating so few seizures. But surgery changed the rules of the game. And now we don't expect any more seizures. Ever. We put her through this hard thing with the hopes that seizures would piss off forever, even though we knew that statistically the chances were good that they may not. But we had to try. And we know that she is way better off now than before. It's just that we're greedy. We want normal and whole and healed. Yes, we may still get that, and we will never stop fighting for it, but sometimes the bumps and twists and turns bog us down for a minute or a day. And I gotta believe that it's okay to not be okay.

Romans 8:26
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
Holy Bible, New International Version®, NIV® Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

Wednesday, July 25, 2012

Kiddo Update

I am growing a little weary of this summer--what with it's drought and brown and hot everywhere. I had great intentions to be more structured with our time and to plan at least one big activity per week for the kids. I have gotten away from that lately, and so we are all going a little stir crazy. Five and seven year old brothers tend to either be at each others' throats or really, really hyper and playful. I'm not a fan of either extreme, personally. I have at least taken to implementing a "quiet time" in the middle of the day; sometimes I require that the 5-year-old take a nap, but other days I am content that they be in separate rooms with all TVs and other screens off. They can be "in the real world" and play quietly, as my friend Sue calls it, or they can read, draw, write, create. It has not been as well-received as I hoped, but usually it affords all of us a much needed little time out. I enjoy spending so much time with them, I really do. I get to see all the frustrating behavior, sure; but I also see all the amazing creativity and growth and becoming-a-person-ness too. Several times a day, I hear myself saying, "I like you, Coop." or "You're a neat kid, J." and they agree with me too :). That kid confidence just kills me; remember when we had that?


When Ella gets home from school in the afternoons, sometimes she just adds to the crazy, but a few times "quiet time" is still ongoing, and she and I get a few moments to enjoy each other. She really is amazing. I love how her brain works. She makes connections all the time and never misses any detail. She asks questions, and always wants to be understood. I love it when she nods her head and says, "yeah" when I hear what she has just said and repeat it back to her. It's like she is thinking, "Mom gets me, and that makes me feel safe." She loves to "elp" me do chores around the house. She wants to matter and contribute and be appreciated. Even if it may be a big inconvenience or more mess than help, I never regret letting her pitch in. She is so pure and proud of herself it just makes me burst. If Chris is home, she'll go find him to brag on herself and get a "i-fah!" (high five). Oh and her little run. I wish I could bottle it up and sell it to people who are in bad moods because it would make them feel better about the world in five seconds. Here's just a small sample of it, but really the run that takes her across a room is what I love best, especially if she is running toward me.

video

This will probably get lost in the middle of the post here, but it has been nearly two months of seizure freedom for Ella! So this is what it's like to really breathe. I know better than to assume that Never Again is a guarantee, but it sure feels like a possibility with each passing day.

And Corie, my goodness, she is such a gift. Really. I can't explain how much joy she brings me. After all the fear and missed milestones with Ella, I just revel in Corie's perfectly normal-ness. At seven months old, she is in that teething, interested in food, pull everything toward her mouth stage. She is very vigorous and pinches with all her might as she's grabbing at things. Earlier today, she got a hold of both sides of my neck at once and dug deep into my muscles--ouch! I love it when she is in my arms and holds on by grabbing a handful of my hair. It doesn't hurt too much; it's just uniquely her thing, and it makes me smile. She loves to bounce! Just look at her in action.

video

Chris, Corie, and I took a short little trip to Chicago this weekend. Apart from a layover here and there,  I had never been there. I must say, the city treated us well, especially its weather. The temperature was in the 70s and 80s as opposed to the triple digits here in Arkansas, and there was a nice breeze blowing between the high rises. Our trip was for the annual IS Parent Advisory Board meeting. Lots of great progress has been made, and I am excited about the prospects for raising awareness and funding for researching a cure for infantile spasms. This year was all about collaboration, as the president of the Child Neurology Foundation and one of the leaders in the Tuberous Sclerosis Alliance joined us for the meeting. Also, because I am a fairly proficient twittererer, I volunteered to run a twitter account for our nonprofit parent advocacy group called faceIS (Foundation for Awareness of Childhood Epilepsy and Infantile Spasms). That twitter account can be found here.  I plan to use it to post interesting articles pertinent to epilepsy and IS, retweet informational tweets, and reach out to those on the IS/child epilepsy journey (so I can stop clogging up my personal twitter feed :).

Take care everyone, and do stay cool. God bless!


Monday, June 11, 2012

How is it June already?

Summer is in full swing. I am mostly busy trying to keep my older boys entertained and gainfully occupied during the days. Ella started back to school a few weeks ago and will continue to attend through the summer. Within a week of returning to school, she was promoted to the next developmental class. For one thing, she no longer fit under the tables for meals nor on the cots for nap time! Also, during the time that she was gone for surgery, the other children continued to be promoted as well, so she no longer matched the developmental level of the children in the classroom she had been in for a year and a half.

Next week, two months will have passed since surgery. We have yet to see any more seizures, so the official count since surgery remains one (unofficially maybe two). Because of that one seizure, we are in the process of increasing the dose of one of Ella's two medications; we have to go slowly to reduce the risk of rash that is common with rapid increases of lamictal. As far as I understand, she is pretty much still maxed out on her Keppra dose for her weight, and, in addition, it is not advised to alter dosages on more than one medicine at a time because then it is unclear which is responsible for any positive or negative changes in frequency, quality, or duration of seizures.

Developmentally, Ella is doing well I guess. This is harder to quantify for me. Physically, she is doing everything that she could always do. She is talking more than she was immediately after surgery, and I would consider her back to her baseline before surgery. She is now able to say more complex things occasionally, but certainly isn't attempting this all the time. A few days ago, she did say "luh you" to me without any prompting. She is very observant and often labels the things she knows in her environment. She gets a lot of pleasure out of being understood, which is incredibly endearing. Sometimes her sweetness just overwhelms me.

I try to include Ella in much of what I do with the boys, but she isn't always able to handle it. Never was this more clear than yesterday, when I tried to take her to the movies. She was not really interested in the show and continually tried to get up and walk around. It wouldn't have been so bad, but I had Corie with us too, so I couldn't really do as much as I wanted to in order to hold her. And any time I reached for her and brought her back to her seat, she would squeal, "Ow" even though I know I was not hurting her (she's learned she gets proper attention with this). Completely embarrassing. Maybe some day she will be able to manage.

Overall, I am happy that surgery is an increasingly distant memory and that Ella is doing quite well.

Thursday, June 7, 2012

Mini Update on Ella

Ella is doing well in so many ways. It's been nearly 8 weeks since her brain surgery. She is getting stronger and more talkative all the time. She seems very aware of her environment. She is showing empathy and spontaneously saying things such as, "I luh you." All very positive.

Unfortunately, she did have a seizure last Tuesday. We were very sad to see it. The difference between one and none is huge. And my mom thinks she saw a minor one 10 days before that even. But if you think about how many she would have had before surgery in an eight-week period, it does make you feel better; I think the number of seizures could have easily been 15-16 instead just of 1 maybe 2. So we will be going up slowly on her seizure medication, and she is scheduled for an EEG at Children's again soon. They tell us that even if total seizure cessation is not obtained, patients who have this procedure respond to medicine whereas before they did not. Let's hope so!

I once again am nearly too tired to keep my eyes open. I will try to post a longer update soon.

Wednesday, May 16, 2012

A Special Needs Mother's Credo

I promise to talk to my special child as though she understands me even if I know she does not. There may be a time when she will understand, and I would not want to miss it because of an assumption.


I promise to not be too disappointed if she never does understand something I have said. Because even if she cannot understand some of the complexities of life and language, somehow she still knows that I love her and she loves me right back.

I will celebrate her accomplishments and compare her only to herself.

I will be a tireless advocate for her.

I will do my best to take care of myself. I will shower regularly, have girls nights out, get a pedicure occasionally, and read that book I've been meaning to get to.

I will ask for help when I need it.

I will learn when to let things go and when to keep fighting. I will pick my battles carefully and my friends even more so.

When appropriate, I will take our family on vacations and allow us to experience the world together.

I will not make excuses for my special child nor bring attention to her unnecessarily, even if it means swallowing my pride when she makes a scene instead of trying to defend my mothering skills to judgmental strangers.

I will remain approachable to typical moms. I will not make them feel guilty for the milestones their children are meeting but instead will rejoice with them. I will not scoff if they say that mothering is hard because I know it to be true for all of us.

 I will not bother with the impulse toward one-up-man-ship of who has it worse than whom.

I promise to cultivate conversations that do not center around diagnoses, individualized education plans, adaptive equipment, medications and the like. I likely will talk about those things but in moderation.

I will treat everyone with the grace and dignity they deserve and remember that while we may have similar circumstances we do not necessarily share the same opinions. I can only speak for myself and my child. I cannot expect to know how anyone else is thinking or coping.

I will reach out to new moms who are just starting this journey. I will answer direct questions and give my opinions, but I will not liken my advice to that of a doctor nor will I judge them for the choices they eventually make. I will not pretend that this is a black and white world we find ourselves in.

I will practice the gospel of "whatever works for you and your family."

When someone is going through a tough situation, I will refrain from saying, "I know exactly how you feel" and will instead say, "That must be difficult for you."

I will share my special daughter's story without expecting everyone else's world to stop turning as mine did when we got The News.

I refuse to wear a chip on my shoulder or throw myself a pity party.

I will never give up hope.

--Megan Daniel
   2012