Thursday, January 3, 2013
Wednesday, January 2, 2013
I haven't posted in almost five months? Surely that can't be right. Time is passing at lightning speed these days, I guess.
Friday, August 17, 2012
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.
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
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?
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.
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
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
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
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.
Friday, May 11, 2012