Just when you thought this blog had fallen by the wayside, yet another victim of the fat trimming we’ve done in our life over the last several months, just to stay afloat… Well, this thing isn’t done, though there really hasn’t been a whole lot going on that has merited its own blog post, I guess. In a way, it’s been so long that this will probably feel like one of those Christmas letters that you love so much and never throw away… unless you’re like me and throw them away before reading.
I’m happy to report that Pearl is doing really well. At the moment, she’s battling the same horrendous cold that the rest of the family has been battling over the last few weeks. She’s had more viruses this year than a public library computer, but she keeps beating every one of them! It’s incredible to think that we are starting to look at what her one-year birthday party will look like. In one sense, I want to throw a party so big that it’ll make the fraternities at Vanderbilt blush. The other side of me says get quiet. I go through and read the blog posts that I was posting last year this time, not having a clue that we’d be where we are today. That is simultaneously a reason to shout to the top of our lungs and a reason for silent tears of gratitude and awe. In a way it calls for a bit of reverence as Pearl’s story, just like everyone’s, is about God and not about her. Who knows what we’ll do, but it sure looks like we might actually get to do something!
She has also started something called the Ketogenic diet. If you’re not tube feed, then this particular diet looks a lot like eating sticks of butter for lunch. Actually, with some folks it looks exactly like that! Wikipedia does a good run down of the diet in their first paragraph, but it is basically a diet that hopes to reduce seizures. Sometimes it yields amazing, life changing results, and other times it doesn’t work at all or can make seizures worse. Ruth did a bunch of research, and in spite of my skepticism at first; it seems to be helping. According to the lab work they’ve been doing on her, it isn’t helping much, but according to what we can observe, it really seems to be helping. And as seizures decrease, mobility seems to increase. Her muscles don’t seem to be staying as tight, and she appears to be doing more voluntary movement. She has however, started loosing a little bit of weight but we’re all watching that close and just trying to see if this is something we should stick with.
So that’s how Pearl is doing. Well, that and she now has a swimsuit and will hopefully be joining us at the pool this summer. That’s awesome.
As for the rest of us, we’re hanging in. There’s a lot of difficulty to life these days, and there’s a lot of hard stuff that I don’t really talk about much anymore. Perhaps we were so awestruck by those first few months, celebrating every moment, and I forgot how to talk about the hard stuff. Or maybe after being so publicly vulnerable with this whole process, I’ve started to retreat inward a bit.
I’d be lying if I said we find it easy to relate to most of our peers these days. Our lives are so dramatically different than most of our friends, it’s tough to find tons of common ground. I don’t say that as a judgment as much as I do, “that’s just how things are right now.” The upside of this is that our family as a unit has grown much tighter than it ever has been. Maybe that’s because we get each other. Obviously, we know quite intimately how difficult life is for the other one, and it’s something that you can’t really know unless you’ve been there. So many well meaning people try to offer guidance on things, but life with a special needs child is so different than life with healthy children. So, when you ask how we’re doing and we say, “We’re doing good,” that just means that we’re doing good on our family’s scale, which is probably a different scale than what your family uses. That’s not a good or bad thing. It just is what it is.
It’s not as if we sit around with heavy hearts all the time, though. In fact the opposite is true. Ruth said it well one day when she said, “Yes, we celebrate all that we’ve been given and all that Pearl is to our family, but there is also a level of grieving that constantly goes on.” It’s not easy to see kids that are half of Pearl’s age, smiling, giggling, and moving their body in a controlled and fluid way, while she struggles with the most basic things. I know it’s really not sexy to use the word, jealousy, these days, but I suppose there’s an element of it that is there. So shoot me. It’s tough.
Last week, Ruth and I made the decision to not put our house on the market and to not look for something bigger than our current 700 sq feet. We just can’t do it right now. It’s too daunting of a task. We don’t have enough in the tank to try to attempt a task as big as that, and it seems as though last week, God gave our hearts closure on pursuing that for us. We’ve said since day one that we didn’t want to press the issue, and that at any point, if it seemed like something that he wasn’t doing, we would bail on the idea completely. Maybe he is teaching us contentment. Maybe he’s working a plan altogether different. I do know that what he plans for us is so much better than what we settle to strive for. Yet another lesson that we’ve been taught through Pearl.
So that’s it, in a nutshell. Life is hard, but everything is fine, and God is teaching us contentment and gratitude. Yeah, believe it or not, we struggle with gratitude over here at Brown International. God has given us all the desires of our hearts, and yet we still struggle. Unbelievable. The older kids are done with parents’ day out for the summer, and Ruth and Brennan have been dipping their toes into the home-school water, trying to get their sea legs before the fall hits. That’s sweet to see. Abbey wants to sit in on every lesson and learn as much as she can… for about 3 minutes. We continue to be amazed at all that God has done with, through, and for Pearl. Having her in our lives is something greater than we could have ever imagined or dreamed up for ourselves, and we are grateful. We’re all doing ok… at least according to our families scale.