If you follow Pearl’s story on twitter at all, then you probably already know that we had a bit of a difficult appointment with her pediatrician yesterday. It was difficult not because of the way the information was discussed, but because of the nature of what needed to be discussed. I can’t sing the praises of her pediatrician enough, and even as our discussion progressed, it was obvious that this wasn’t easy for her to talk about, either.
As you may know, Pearl has had an extreme increase in seizure activity over the last few months, and at this point they appear almost uncontrollable. Whereas we were hoping to discuss ways to get them under control before they really started to take a toll on her body, our conversation yesterday was that they have taken a significant toll on her body already.
The night before this last appointment, even as I scrolled through pictures from 6 months ago, it was obvious that Pearl’s awareness, energy, and overall health aren’t near what they were back then. Each seizure that she has makes her more susceptible to another seizure, and each one chips away at her physical and mental reserves in a fairly severe way. As we discussed this with her doctor, it became quite clear that yes, these seizures have been wearing her out for quite some time now, and because we see her every day, it has been less obvious to us just what a downward slope she’s been on.
I want to be clear and say that our discussion was not that Pearl’s life is certainly coming to a quick end. There is no way to say for certain at what point she will have her last seizure. We can’t know these things, but what we can say is that she has obviously been on a downward trajectory and as long the seizures can’t be controlled, that will likely continue.
Nor was our discussion that Pearl has days or weeks to live, and we should reconsider hospice care right now. Our discussion was that as we delve into looking at some other and maybe experimental treatments, we make decisions based on comfort and immediate quality of life for her more than on what treatments will mean for her, long term.
We’ve really been trying to find a sort of normalcy over this last year, and as Pearl has grown, we’ve been more intentional about trying to go about life at our normal pace, and had even planned a beach vacation for July. Well, this puts an abrupt halt to that type of living for us. There’s not a normal life for Pearl. It makes no sense to try and carry on as if that’s possible or even good for her or the rest of our family. The closest thing I can think of to compare this to is right after 9/11 when we were told to get back to the mall and act as we hadn’t been hit hard by terrorists, so they wouldn’t “win.” Well, the reality was that we were hit really hard. And it stung. And life ought to stop long enough to work through these things. You don’t carry on as if nothing happened. They won. Not long term, but for that moment, they won. Maybe that makes no sense at all but I don’t know how else to explain it in a relatable way.
So that’s where we are. We all had a bucket of cold water thrown on us yesterday, and we are wide-awake to the reality that Pearl is not doing well and that her body is worn from the seizures. We’re not giving up, and we hope to try some new things, but we are processing things through a different perspective than we’ve had in quite some time. Pearl’s body is weak and tired, and we’re going to operate and make decisions based on that more than we have been doing.
We’re still going ahead with plans for a 1-year birthday bash for her. In fact, go ahead and mark your calendar for the afternoon of July 27th. We’re planning a picnic/potluck style party at Dragon Park here in Nashville. If you’re not familiar with Dragon Park, it’s fittingly right across the street from Vanderbilt Children’s. If you are reading this, we’d love for you to come out. We’re hoping that having the party there will help those who we may not know as well still feel comfortable coming to celebrate. I’ll post more details here as plans come together.
Please continue to pray for healing. Please pray that her body will be able to rest, and that she will be able to find enjoyment in whatever days she does have with us. My mom said it well to me last night, when she said that God has been so good to gift us all with these days with Pearl, and at some point he will be so good to her to give her no more days. I think that’s a good perspective to maintain. Oh, to be privy to that conversation that Christ will have with her when she comes home… To hear him explain it all to her, to watch her face light up as he explains all that she has accomplished for the Kingdom, without even trying! To hear him tell her about himself, and all that he has done for her! That’ll be a sweet day for Pearl, and a bittersweet day for us who are still on the way home. Thank you for praying, and thanks for sticking around all this time.