“What about the steroids?”

Well, now, you didn’t think I was going to make it any easier for you to get the answer to that question than it was for me did you?

I’ll keep it somewhat brief.

Daniel was admitted to the EMU by a smiling Nurse Jen on Thursday afternoon and was connected to the EEG leads by his buddy Dennis within a couple of hours. We had a robotic discussion with Dr. Gupta a bit later, outlining the objectives for the admission, and headed into our first night.

I watched the EEG monitor as Daniel went off to sleep. I am a novice, of course, but it looked quite a lot smoother to me during the sleep transition than it did a month ago when we were at Cleveland Clinic the first time, so I was eager to hear what Dr. Gupta would have to say Friday morning. His report was very encouraging. There has been a 25% reduction in the ESES (epileptic spikes during sleep) as a result of Daniel being on the steroid. Dr. Gupta wanted to get data over a few nights to see if this change was consistent, and to provide the opportunity to possibly capture some seizures. Again Daniel had no seizure activity during the time he was being monitored.

On Saturday we were able to ask Dr. Gupta questions about what to expect now that we know the steroid is helping. He told us that the degree of improvement is extremely individual. Some kids get no benefit; very rarely complete resolution of ESES happens with steroid treatment; some kids get 25% improvement and no more; some kids get 80% improvement. Most kids get between 25-50% improvement. There’s no way to know what Daniel is likely to experience. He did tell us that he has been on this high dose as long as is best and tomorrow we are to begin a slow decrease in the amount we are giving him which should lead to coming completely off the steroid on June 9th. In the meantime we will be increasing the seizure medicine he is on to try to get a good balance of seizure control from the two medication sources.

Of course we are really happy about the reduction in ESES for Daniel and we hope that during the next couple of months the reduction will continue. We definitely need to try to keep our perspective on the long view because more weeks of steroids is not at all a joyful prospect. Daniel is really difficult to deal with right now and I admit to some fear about getting through these next couple of months when we are home all the time and trying to homeschool the kids and work and manage their outbursts and meltdowns. One interesting thing was how well Daniel slept in the hospital. It was amazing! I’m not sure if it was because he felt safe and I was there in the room or if he has made some progress in this regard or what. I guess we will find out as we get settled back in at home. One thing is for sure – my lack of consistent sleep is completely unsustainable. We need a better schedule/plan, but implementing that when I have to go back to bed in the morning after having been up with Daniel in the night just hasn’t worked so far. Both kids do so much better with structure and structure is much more easily implemented when the parents are rested. We had planned for Dave and I to get away for a weekend at the end of March and I had plans to spend next weekend in the mountains with a friend, but both of these trips were canceled due to CoVid-19, stupid virus. This was really discouraging. Instead of rest, more is required of us than ever before in an already depleted state. I know we are not alone. This is a very weird time in our country and so many families with young kids are all collectively going bananas.

I guess that’s enough for now. We were discharged this afternoon around 2 and are driving back to South Carolina. I am not sure we are going to make it all the way tonight – it is already 7 pm and we have over 300 miles to go. How to find a CoVid free hotel … hmmm.

Living in the Light this Easter

I am writing this morning from the 5th floor of Cleveland Clinic’s M Building on what is arguably the strangest Easter morning most of us have ever experienced. Our family is separated – Daniel and I in his hospital room, David in an AirBnB nearby, Hannah with a friend’s family back in Rock Hill. Guess which one is having the best time?! Yep, Hannah for sure! We have been tuning in to services from our churches and trying to keep in mind that even on this very strange day Easter has broken through, just as Christ broke through the bonds of death and the stone covering the grave so many years ago.

I have been wondering if, maybe in this time of social distancing and quarantining, we might most be able to identify with the disciples and the people who were closest to Jesus. On that first Easter weekend the disciples were reeling, stunned and in fear, and then bewildered and confused, before they got to the point of rejoicing. They had watched their dear friend and leader be killed on Friday afternoon. Shocked and grief-stricken they spent Saturday laying low – afraid of what might happen to them if they were out and about. Then Sunday morning came the discovery and subsequent joy mixed with confusion that Jesus was alive! They didn’t yet understand all that it meant, all that he had done for them that weekend. It would take time for him to explain, and for them to come to understand the magnitude and significance of Christ’s death and resurrection.

What about you? Can you identify with those feelings this weekend? Confusion? Fear of being out and about? Feeling like you’ve never experienced a weekend like this before – what is typically a celebratory weekend, but has taken this strange, surreal twist in our current circumstances? I sure have been having those feelings. We have the isolation, the separation, the confusion – on multiple levels. Confusion about our society, what will it be like on the other side of this virus? What will happen with school for our kids? How will we get through the summer of kids home, everything cancelled? (I feel my anxiety rising just thinking about that.) But we also are experiencing confusion on a more personal level – what is going on with Daniel? How long will he be on the steroids? What is the right solution or treatment for his seizures? How much longer can we handle the side effects?

As we have been processing the results of our last trip to Cleveland, and the disappointment that went along with it, and the struggle of the side effects of the steroid treatment, and the wondering concern about Daniel’s future, I have used a technique that has helped me through the years when I am processing something I am struggling with. In the past at times I have actually written out columns on a page – “What I Know Is True” and “What I Know Is False” and sometimes a column “What I Am Feeling”. Invariably I end up identifying my beliefs about God and what I know from Scripture to be true and false. For example, when God doesn’t answer my prayers the way I want, I may put in the “Feelings” column things like, “I am mad at God”, “I am disappointed”, “God doesn’t care about my stuff”, “I am confused”, “I am scared!” And then in the True/False columns I write what I know to be true or false, based on God’s character that I have learned about in the Bible and Scriptures in general that speak to those emotions.

You may ask “Why do you think the Bible is even true? Why do you consider it a reliable source?” For many people these days it is considered only an ancient text with little to no relevance for our current experience and certainly not anything reliable or authoritative. Some of the reasons that I believe the Bible is reliable and true are these: The Bible was written over the span of 1500 years by more than 40 individuals from different walks of life – some scholars, some commoners – who were separated in time and space and yet their message is remarkably consistent, improbably consistent, perhaps impossibly consistent, without the inspiration of the Holy Spirit. The Bible frequently uses prophecy, and the prophecies have come to pass (some are yet to come to pass, but many have been fulfilled) and only a God who knows all things could inspire prophetic scripture hundreds of years in advance and then very specifically fulfill it. The message of the Bible is deeply personal, even in its breadth and depth, and it points the way to the answers to the issues of our lives and most importantly to the salvation of our very souls. For these reasons and others, I do believe the Bible is the Word of God and it does set the standard and is authoritative in all of the areas it speaks to.

And so, when we left Cleveland last time with our biggest prayers for the trip unanswered in the way we had hoped, it was once again an opportunity for me to bring these feelings and doubts and questions under scrutiny. I didn’t write them out specifically as I have in the past in other situations, but I did remind my heart of truths that have supported and sustained me in the past and that I cling to now and which give me hope for the future. Does God not care about my son? I know from Scripture and from the story of Daniel’s life so far that God loves him profoundly, as he loves me and my husband and our family. I know from Scripture that God knows tiny details of our lives – even the number of hairs on our heads – and if it matters to him to keep track of all that stuff (and to do so without effort), then the number of seizures Daniel has and when and how they impact him also matter to God. Did God just not hear our prayers? I know from the Bible that God always hears when we talk to him. God is never too busy, or distracted, or listening to music, or planning the next century such that he doesn’t hear little old me when I pray – not to mention that I spread far and wide our need and Daniel’s testing and had people all over the world praying for Daniel. There’s no question but that God heard our prayers, every one of them. So why didn’t he do what we wanted? Why were there no seizures while Daniel was being monitored by EEG? Why was there a seizure as soon as he was disconnected?  If God controls all these details of our lives then that just seems mean! Well, I had that thought, but I know that the personal character of the God of the Bible does not include being mean. He is always loving, always kind, always just, always holy and always wise. And therein lies the answer to the whys. “I don’t know” is not a satisfying answer. But in addition to knowing that God is always and infinitely wise, I also know that I am greatly lacking in wisdom comparatively and I will either fight for understanding and demand that I get the result I want, or I must bow my knee to the most loving and wise and powerful being that ever existed and accept that he is working out something in a way differently than I expected or hoped.

And that brings me back to Easter. The expectations and hopes of the followers of Jesus Christ during his time on earth did most certainly NOT include watching him be arrested, tried in a court of mockery, and hanged on a Roman cross just a week after he had been praised in the streets to shouts of “Hallelujah! Blessed is He who comes in the name of the Lord!” and he was even called the King of Zion. Talk about confusing! Talk about struggling to understand! Talk about greater wisdom than our own. Talk about the mystery of the Gospel. God is not a God of ease and sweetness and rainbows and unicorns. He is a God for hard times, a God for times beyond our understanding, a God of mystery, and yet a God who makes himself known, who makes his character clear through the outworkings of Scripture and circumstances in our lives. So in our current struggle, which is very small in the big picture of the world but very big in our experience, I bring these questions and these struggles and these hurting feelings to the light of God’s Word, and I find it is the same light that came streaming out of the open tomb in the garden and cascaded around Mary and Peter so many years ago. It is a light that truly illuminates the troubled mind and brings peace to the struggling heart. It is the light of the risen Christ and in my dark and stumbling way it is the light I turn to, the light I cling to, even when the extent to which I understand what is happening in my life and the life of my son is still quite shrouded. HE is not, and for that I rejoice.

He is risen!

He is risen indeed!

Life in the Crazy and Back to Cleveland

We returned from Cleveland Clinic late on a Thursday night, and Friday was a teacher in-service day, so there was no school. Little did we know that there would be no school again for a long, long time! Daniel hasn’t been to school now since the end of February!

Launched involuntarily, with the rest of the country, into a social-distancing, mostly isolating, home-schooling world with one child who had been well-loved and cared for, but missing us, and the other child on steroids affecting behavior, emotions, eating and sleep, with two already exhausted parents has been very, very hard. Having everyone home all the time has been very hard on David who regularly works from home anyway, but in healthcare IT has been even busier than usual, and now has the constant interruptions and noise of the family.

Daniel’s sleep has been severely impacted by the steroids and every single night has had multiple interruptions. Most nights I have been staying with him for at least half the night to help to calm him. David has very kindly let me go back to bed in the mornings while he manages the kids early in the day, but we are on a trajectory of progressively greater sleep deprivation overall. My work has been significantly impacted and I am just doing what I can to accomplish time-sensitive tasks. Daniel continues to be very emotionally reactive – with highs being very high and lows being very low and irritability, angry outbursts, name calling, throwing things and the like happening multiple times most days. He’s also eating like never before – asking for things like mac and cheese and cheeseburgers for breakfast. His face is looking rounder, as is expected when on steroids long-term. Thankfully we have Daniel’s aide for 20-30 hours each week. This is a huge help, and you might think we shouldn’t have any issues with that kind of help, but she can’t be responsible for all of the disciplinary intervention, mediating sibling conflict, and home schooling, meal planning, activity planning, etc.

I see comments online about what kinds of things people are doing with all of this “extra time” they have being quarantined at home – house projects, baking, cleaning, learning new languages and taking up new hobbies – and it blows my mind! Really?!! None of that is happening here, so don’t be looking for any amazing sculptures or posts in Lithuanian from this household! That’s not to say there is nothing good happening here – we’ve been reading a chapter together in a book each evening before bed, the kids have had some good “Art” classes and made some nice paintings and they’ve been fed every day and even dressed some days which I’m considering an accomplishment. We also have friends who live right across the street from a very lovely quiet park and we have gone there numerous times where the fresh air is wonderful and the kids have appropriately distanced interaction with a friend. This also helps David when the rest of us can get out of the house and he can work in peace for a bit.

In regard to Daniel’s seizures – it has been concerning that he has had four seizures since the EEG monitoring at Cleveland Clinic. This is a pretty high rate of frequency for him, and we don’t believe that we are on the right medication for controlling the seizures. When we were there last month and Daniel was started on the steroids we were told that in 4-6 weeks he would need another 24-48 hour EEG to assess the effectiveness of the steroids. If the nighttime ESES pattern looks better, he will continue on the steroid for a six month course. If it does not look like it is being effective, he will come off the steroid. We had an admission scheduled for April 21st back at Cleveland Clinic, but last week we decided to move it up. Our rationale originally was that we would give it maximum opportunity to see if it is working. But, it has been so hard and we are so tired that our rationale is now that if it isn’t making any positive change then we need to know that as soon as possible so we are going back this coming week. We leave on Wednesday and Daniel will be admitted on Thursday at 1:00 p.m., right in the middle of Nurse Jen’s shift! She knows we are coming and both she and Daniel are very excited to see each other again. We do have a little bit of concern about going to a large hospital in the midst of this CoVid-19 pandemic. We will be taking precautions, of course, and would be grateful for your prayers for our protection on this trip.