Whew. Like the rest of the world, we are in the throes of chaos and busyness, but I wanted to do an update for our prayer warriors out there with some specific requests…
First, Harper completed her feeding study and sleep study at Duke, so those are behind us. Feeding study was a breeze, as we expected- we know she can eat! The purpose was just to rule out swallowing issues as we move forward, and we did that. The sleep study was nothing short of a disaster. Harper is now aware of what it means when we say we are going to Duke, so all the way there she asked me why we had to go and proceeded to tell me that she is not going to Duke anymore. When we arrived and she saw all of the monitors and wires, she completely flipped out, and thus set the stage for one of the longest nights of my life. We won’t get the official reports from that until sometime in January, but due to the fact that she actually slept very little and the fact that they were not even able to place all of the necessary monitors on her, we don’t have high expectations of valuable information coming from that study.
Harper has been doing amazingly well with her medicine transition. We are completely off of one of the older meds, and the change in her personality has been remarkable. She has a new-found joy now that she isn’t clouded by that downer drug! I love it. We are still in the process of working our way into the new med- it can cause some serious side-effects so we have to take it very slow, but we are about halfway into that process right now. She takes it like a champ, but we are seeing more seizure activity. She’s had two clusters in the past week already, but we are hoping that will calm down as her dosage continues to increase.
We are preparing now for our (hopefully) final trip of the year. It’s time to travel north for the neuro-psychological testing at the Kennedy Krieger Institute (through Johns Hopkins). We do have some specific prayer requests regarding this:
- Traveling safety, of course!
- Harper to be a happy traveler this time around.
- Harper’s cooperation for a full day of testing (Monday).
- Valuable data and results that will help us in preparing for future treatments as well as making school decisions.
- Peace for this mama’s heart… It is getting more difficult to push through these appointments as she gets older and protests more- I want to do what’s best for her, but I know she is over it, and we’re all a bit weary. We are also hoping for good information from this testing, but with that comes the chance to hear things no one really wants to hear. It’s difficult to explain, but you can know things about your child and still find that it hurts to hear someone else point it out or tell you problems they see.
Now, along those lines, I’m going to throw something out there. We are very open about this journey we’ve been on for almost five years now. We don’t hold back from telling people what’s going and what we go through, and we do this so that people know exactly how to pray, but also so people can see how God is at work, and to possibly encourage someone else out there who may be facing difficult circumstances. It can be helpful when you’re struggling and wondering to know that there are other families out there who get that struggle, that you aren’t alone.
However, when you put it all out there like we do, you subject yourself to all kinds of comments and opinions and advice. We have heard quite an array of things over the last few years, but there is one discussion that I would like to advise against, and that is our faith. It has been insinuated by some that perhaps our daughter has not been completely healed yet because we don’t believe enough, because our faith isn’t strong enough, because we don’t speak it and claim it enough, because we seek the advice and guidance of doctors and listen too much to their opinions, etc, etc.
I know that most people are truly, genuinely well-meaning in their words to us, but these kinds of words cause harm. They cause us to feel guilty, to question things we don’t need to question, to doubt… to just feel beat up a bit. Believe me, there have been times that I have wondered if we are lacking in these areas, that I have felt as if my faith wasn’t strong enough, that I have questioned what I could be doing differently to change things for my daughter. But those are very personal spiritual battles, conversations that I have with the Lord, and not things we need to have pointed out to us time and time again.
To clarify, this is what I believe. I believe the Bible to be the inerrant Word of God, that every word in it is divinely inspired and true. I believe that when God makes promises, He keeps them. I believe His plans are for good, that He never leaves nor forsakes us, and that He can bring beauty from ashes. I believe He loves me and my family enough to send His own Son as a sacrifice for us. I believe He is omnipotent and able to do absolutely anything, far beyond what I could dream. I believe He is a miracle-working God- I’ve seen Him do it! I believe in the power of prayer- I’ve witnessed it firsthand.
I also believe in the omniscience of God, and know that He sees a bigger picture than I see. He knows more about what I need than I do. He has a greater purpose than I can understand. I do believe He could absolutely heal my daughter completely and totally with a single word. He could speak, and the cysts on her brain could disappear and the extra fluid could dissipate and the damaged areas could be like new, and she could never have another seizure. But that hasn’t happened yet, and I don’t feel that it’s because of a lack of faith on our part. Rather, I believe God is still writing our story. He is using Harper to bring glory to His name in ways only He can do. He is drawing us nearer to Him on a daily basis, reminding us of what this life is all about and what our purpose here is. He is still at work, and just because His plans don’t match up with our plans doesn’t mean that we believe any less.
So, if you see a person in the midst of a battle, and you think that maybe they’re there because of some spiritual inadequacy, be cautious with your words. Make sure that you have consulted with the Lord before passing along your wisdom, and season your speech with grace. There are times when we need to speak hard truths, but it’s important to do that in God’s timing and with love.
That’s just my two-cents from someone who has walked that road. We are ever grateful for our encouragers and prayer warriors. Life is not always easy, but God is always good. We’ll update you next week on our trip!