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.