I haven’t posted an update on here in close to four months. I’ve started to multiple times, but I never quite know what to say.
In four months, the life of our family has changed drastically. A new home, new job, kindergarten, high school… big life changes. It’s been a season of transition and adjustment.
For the most part it has been good. It always comforting knowing that you are where the Lord has placed you, and we know this is where He wants our family to be right now. However, change, even good change, is still change, and it hasn’t been without its difficulties. We are finding that the stress of the last few years has taken a toll on all of us in different ways, and we are working through some of that as a family now.
Harper has done well with all of the upheaval, and loves the new house and her new school. She is super excited about kindergarten and new friends, and we are so proud of the progress she has made. It isn’t perfect and she has her struggles, but she doesn’t give up.
Over a month ago we did some road-tripping to Duke again for a check up and to have an ambulatory EEG study done, which means she was hooked up to the machine and we carried it home for the weekend… sounds like a nightmare for a five year old, right?
Well, let me just tell you once again about the power of prayer. We spent a lot of time praying over that experience, and that girl rocked it. She was completely amazing and handled it far better than I would have. She was patient and cooperative and did not complain the entire weekend.
We finally got the results of that test today. It’s never a good feeling when you get a call from the nurse who wants to schedule a time for the doctor to call you because she wants to personally discuss things. In our experience, personal conversations with doctors after tests don’t tend to lead to good news.
Basically, Harper is having constant misfirings in her brain, particularly from the areas that have been affected by the cyst, hydrocephalus, and earlier hemorrhage. These are not full blown seizures but little “blips” that shouldn’t be there. They are much worse when she is sleeping.
The study also indicated two significant seizures in those few days that we missed- they both occurred while we slept.
This was not the news we had hoped for, and it means more changes on the horizon. Medicines must be increased yet again, a process that will take about a month because of the potential dangerous side effects. After that, they will evaluate how things are going and the next step will be a hospital admission at Duke for an extended study.
My heart is heavy today as I’m processing this. I have all faith in my God as Healer, and I know without a doubt that Harper’s life is in His hands. I know His plans are good, and I know He isn’t finished with our family.
But right now, in this moment, I’m sad. I say that to encourage some of you out there. So often as believers we feel that we can’t feel sad, that we always have to put on a smile and say that everything is okay, even when it’s not.
That’s an exhausting mentality. We live in a broken and fallen world, one that we are in but not of. There will be bad days. There will be sad days. There will be pain and sorrow and heartache and uncertainty. And it’s okay to admit that and feel sad sometimes.
But it is temporary, praise God! No matter how sad I feel in this moment, it won’t last forever. I may feel beat down today, but the ultimate victory has been won. “Weeping may tarry for the night, but joy comes with the morning.” (Psalm 30:5)
But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; Great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” The Lord is good to those who wait for Him, to the soul who seeks Him.” (Lamentations 3:21-25)