Wednesday, April 25, 2012

Peace and Perspective

So,  I'm easily amused - and one thing I find funny is the reaction by a new therapist to my statement that "Evelyn is sleepy today, and she's not going to wake up.".  No one ever believes me, and I mean no one.  I feel guilty lately when it happens because my patience is wearing thin on this topic.  When Evelyn chooses to sleep, it is because her body needs it, and she knows it - so she goes to sleep and will, nearly without fail, remain that way until about thirty minutes before bedtime.

This is hard for people to understand, because most children will go and go and go until they dissolve into a puddle of tears and tantrums (or until someone makes them take a nap - whichever comes first).  I think I should be more sympathetic with those who don't 'get Evs' yet; especially since I do the same thing.  Whether it is emotional overexertion or the work of life, I keep pushing until I find I'm spent - and then I get grouchy, or weepy or downright mean.  It would make sense to just go take a nap; and the adult equivalent would be carving out regular time for myself free of children and responsibilities.  For years my excuse for not doing so was that Evelyn's stuff didn't allow for that, or that I was too tired to orchestrate all the people and things required for me to be away from my kids.  But lately, it was time.

In January we somewhat pessimistically joined a gym, after having exercised at home regularly for a few months.  I say it was with pessimism because I've never enjoyed any form of exercise.  I know that sounds crazy for those of you who have been active all your lives, but even the swim team when I was a kid was just work to me.  It all changed this year, and over the last four months I've spent about 100 hours exercising and lost 15 pounds.  I'm outing myself now - I'm in love with zumba.  I can't even capitalize the 'z' because I'm a little embarrassed - I mean, it isn't long distance running or even something more 'hard core' like P90X or CrossFit... just a bunch of women shaking their booties in the name of a good cardio workout.  Well, I'll tell you this - it is hard work, it is fun, and it is the best therapy I've ever had.  Taking an hour five or six times a week to stop thinking and just exercise has helped me in so many ways...and knowing that working to be healthier is good for me and my children helps assuage the guilt of leaving them to do it.  I even managed to exercise while we were in the hospital (not zumba, the classes didn't work on that schedule) - because I had really learned how much better I feel after.

For my other mommies of special needs kiddos - I don't know if I'll keep it up, from crisis to crisis, but I can say that I don't want to stop.  I think every day about when I'm going to fit it in on the following day, and while there has been an impact to the dust bunnies in the corners of the house - we are all happier.  If you're not doing something for yourself, on a really regular basis - start now.  I don't know how I managed without it for so long; and for me exercise only works because I feel less guilty about that than I would, say, about an art class or book club.  Regardless - if Evelyn knows when to take time for herself, if I'm teaching Owen to take that time, them shouldn't I?

And speaking of the little ones - we have had an absolutely wonderful weekend and early week so far.  The theory coming out of our EEG/hospital visit is that Evelyn's dose of Lamictal is a bit too high.  We've always used a high-ish dose, because it works well for her, but through a series of random events we got just a tad too high.  Immediately upon beginning to reduce her dose she has had some great days.  Saturday we went to a nature preserve, where Evelyn and Owen were able to hold and pet bunnies, ducks and guinea pigs, make bird feeders and animal puppets, and really enjoy being outside.  Evelyn has also slept a bit more, but given the lack of naps these last few weeks I think she needs it.  Monday she took a trip to Target to make a birthday wish list for herself; we don't do big crazy birthdays, but a few gifts are in order.  Tuesday she had a great therapy session with Mr. Ramin and Ms. Rachel - she read a book on her computer and played with her my little pony.  Today she is resting, and reminding us all to slow down, pay attention to what our bodies and souls need, and refuel ourselves.

Sunday, April 15, 2012

the Truth is revealed!

Evelyn is actually Snow White. Daniel made the revelation the other day, and as soon as he said it, all became clear. We have itty bitty birdie eggs tucked into a nest on a wreath on our front door, four adorable baby bunnies snuggled into a nest under our rose bush in the back yard, two cardinals, a robin and various other birds that live in the trees lining our driveway - and that's not counting the dog, cat and occasional lizard that pass through. The creatures of the forest flock to her.

:) In all seriousness, it was pretty neat to find those bunnies this weekend. Daniel noticed them first, and we have some great video of Owen saying 'hi beebee bunnies!' over and over again. They seem to be getting bigger every day, and thanks to Rocky's age-induced failing sense of smell, they seem to be safe in our backyard. On the subject of Owen, he is really cute lately - hearing complete and very descriptive sentences coming out of the mouth of a grubby little boy who isn't even three feet tall - adorable.

We've had a weekend of ups and downs - which isn't dissimilar to the last couple weeks in general. Evelyn seems to be going through a 'rough patch' with her seizures - something that happens about every six months. Often this means some tweaking of medications, and occasionally a night in the hospital. This time, we're seeing some different seizures (milder than normal) and some unusual reactions to her 'extra' seizure meds (sedatives not making her sleepy?). Saturday Evelyn was snoozy in the morning, and feeling very happy and relaxed in the afternoon. She and Daniel had a swing in the hammock, and Evelyn informed us that she'd like to go to the zoo for her birthday. We'll be working on that. :) We spent nearly the entire day outside; bubbles and sidewalk chalk in the morning, a picnic for lunch, and grilling for dinner on the back deck. The weather was beautiful!

Overnight Saturday night we didn't get much sleep - between some equipment quirks that've kept us up and down a lot lately, and Evelyn having a need for diastat it was a busy night. Today as expected she slept most of the day, then woke up in a great mood just a little before bedtime. On the upside, we've seen Evelyn feeling like herself more this weekend than the past two weeks put together - but on the downside things are still not quite right. Usually after a couple weeks we'd be turning a corner on the seizure craziness - but not yet. SO, joy of joys, we're going to go back to the hospital Tuesday for a 24-hour EEG. This means we'll be in the hospital overnight and Evelyn will be connected to a video EEG so we can capture as much information as possible in hopes of finding a solution. Luckily, it is only an overnight stay.

We're trying to keep it all in perspective by remembering that prior to February, Evelyn hadn't had any major medical stuff in nearly two years (and by major I mean more than a couple days in the hospital). Things have been busy (or rather, Evelyn has been sick) since Valentine's day - so we are all ready for some normalcy; or at least our version of normal. We'll get there; hopefully sooner than later! Until then, we'll keep looking for the good in things - even on a bad day there are plenty of bright moments to be had.

Sunday, April 8, 2012

On Suffering

So, today is Easter Sunday (unless you're orthodox, and then it is next Sunday, or so I'm told). At any rate, this past week has not been stellar for miss Evelyn, and as a result Daniel and I have been feeling down as well.

Evelyn has seizures. It just happens, and though we work very closely with her doctors to minimize them, with her syndrome they just don't behave very well. This week Evelyn didn't seem 'right' neurologically. You've read in some of my past posts about how sweet and 'smart' Evelyn is - so when something isn't right we can clearly see it in her eyes and face. It had been nearly two months since she'd had Diastat (her emergency seizure medication) and sometimes we can tell that she 'needs' it (or the seizure that would require it) so that her brain can do a little reboot and move on. Wednesday we decided to give her Diastat, and she slept most of Thursday as a result.

Friday we hoped she would wake up feeling like herself - but unfortunately that didn't happen. She was again 'glitchy' and just not herself. By early Saturday morning she also had a low grade fever and other symptoms of a cold. That, coupled with some crying Friday night was just enough issues for me to feel a trip to the ER was warranted. Primarily I wanted to rule out another bout of pancreatitis and make sure her lungs looked okay. Her labwork was normal, her lungs looked great, and by Saturday evening she looked really good. We now feel that she just has a cold (or perhaps her mommy's allergies) and the seizures were a prelude to the cold that was brewing. So, Hooray! right? well...

In addition to all the worrying, it really hurts sometimes to see Evelyn experience so very much suffering. When she feels good, there is no better example of pure joy and kindness. She loves her little brother all the time - in spite of his bumping, knocking, kicking, shrieking self - and will say so anytime you ask. She is just such a lovely person, with such a lovely spirit. It is always hard to see your children endure challenges; whether they're big or small. It is hard for me to see Owen fall down, or struggle with something. It is heartbreaking to see someone so loving, so kind, so joyful - struggle so often. Usually I'm a glass half full kind of person, but when the struggles pile up, the optimism usually wanes a bit.

I was thinking about that yesterday, and realizing that of Evelyn's five Easters, we've had at least three where she's just not been doing well, and a couple that must've been unremarkable - because I can't really remember them. It can be tough when during those special family times one of your children is absent, or unwell - and today Evelyn slept all day. What I also realized, though, is the very direct parallel between Evelyn's struggles and Jesus' life.

As Christians I think we often talk about the fact that Jesus died for our sins. It is a pretty simple statement, and one I've heard all my life. At this time of year especially, we hear it a lot, and even those who don't share our faith know the story. The truth though, is that Jesus didn't just die. Before he was ever born, his father knew what was in store for him. A life on Earth of being misunderstood, encountering skeptics at every turn, winning some hearts but ultimately dying young, and REALLY suffering through the end of his life. Some of us, who've had difficult pregnancies, have been given the choice to end them. God knew what was in store for his son, and still he sent him. Rest assured, if you've ever made the choice to keep a child, that no matter how hard it seems (for them or for you) it was the right choice. Imagine if God had decided that watching his son suffer would be too hard...

What an incredible comfort to remember that our savior suffered so much for us - more than any of us can really imagine. That he suffered for Evelyn is remarkable, and that she isn't alone in her suffering is a gift that I, as her mother, can never give her. But Jesus did. He knows her pain because he took it upon himself. When we, who have children facing incredible challenges, feel helpless, we can remember that Jesus lived his life on earth enduring many of the same difficulties our children face. People can be very skeptical of Evelyn's intelligence, those who don't know her very well rarely understand her easily, and she suffers far more physically than your average child. She is sometimes persecuted just for being herself - when people see her in a wheelchair, not speaking with her voice or making good eye contact - and assume she has nothing to offer. I think if anyone really understands what it feels like to be Evelyn, it is Jesus. Now, I don't consider Evelyn to be a savior - she's a little girl who, in her own ways, has probably sinned from time to time. I just realized as I was lamenting her suffering, that Jesus didn't just die for us, he SUFFERED for us - and not just at the cross, but throughout his life here on earth. How wonderful, and beautiful, that I can tell Evelyn that no, Jesus didn't have seizures, but YES he does know her pain.

Monday, April 2, 2012

All Together Again

We had a fabulous weekend. Friday evening Daniel and I bought a van. woohoo! I mean, really, when you're ready, you're ready - and there is SO much more space. Saturday morning was a little overcast, so we decided to head up to an outdoor shopping place called the Avenue - Evelyn had a little beauty session at Sweet & Sassy (including a 'diva' hairstyle and sparkly purple nail polish). She really enjoyed it; big smiles and lots of excitement. The stylist was kind enough to give both Evelyn and Owen lollipops and balloons (though none actually made it home) so Owen was happy too.

We then browsed around a few stores, and Evelyn chose a new spring outfit. I tried to find something for Owen, but the sizes weren't working. He did score some bright green shoes later in the weekend though. After some shopping and walking around enjoying the beautiful weather, we had lunch outside to wrap up the outing. Everyone's eyes were bigger than their stomachs, so we all had the leftovers Sunday - but man are the Ted's Buffalo burgers good.

Sunday Evelyn made her joyous return to church, where she was greeted by many of her prayer warriors. That girl is special; and she brings so many wonderful people into our lives. Our church and several friends have been feeding us generously, and I am so appreciative. There is such a peace at our house around 5pm - because I'm not racing around pulling a meal together. :) So thanks again. I keep mentioning it because it is SO great.

Evelyn's afternoons have been a little grouchy; in part because she has SO much energy she isn't napping (but probably should be) and in part because she's having far fewer seizures (awesome!) but the ones she's having she is anticipating for a while prior to having them. So that means she gets anxious and grouchy and twitchy for nearly an hour prior to having a seizure; then she's just grouchy until bedtime. Overall though, I have to say it has been amazing. I really can't quite keep up with her - I'm used to a very sleepy little girl who has maybe six hours of active time per day. Now she's the first one awake in the morning and going strong until bedtime. It is definitely an adjustment we are thrilled to accommodate.

As for Daniel and I, we had a nice afternoon date Sunday; Caro and Jonathan (Auntie RoRo and Uncle Joe) babysat with nurse Ivey. We went for a walk on the Greenway, got some Starbucks, did a little shopping, and each had a 15minute massage (which was wonderful, but too short!). I think we're each having bursts of energy and bursts of exhaustion as we work towards recovering from the hospital stay. I think Evelyn is sort of doing the same thing with the grouchy afternoons... figuring out what 'normal' is now. For the most part, things are pretty much 'business as usual' around here - we have a few housekeeping things on our schedule (yard, deck, painting?) and I'm trying to figure out how to entertain the kiddos during spring break this week. I think lots of time at the park and some Easter crafts will probably cover it. :)

I'm hoping to write a post about our sermon this past Sunday; there is something particularly inspiring and comforting about feeling like your ears, eyes and heart were opened at the right time to receive a message of confirmation. More tomorrow on that.