Join Team Daniel

Most of you are aware of the seizure Daniel suffered a week ago. Since I was young, writing has been therapeutic for me, and this is not the first time I have written about a seizure situation. As usual, Join Team Daniel is long overdue for an update, and I had a draft in the works, but this post will come first.

Dave and I had been planning since September for a respite getaway for the two of us. Daniel’s regular aide (as of August), Rachel, and her husband, Maurice, are wonderful caregivers and had agreed to stay with Daniel and Hannah for a week while Dave and I took a getaway to Curacao. The weekend before we were to leave, I had gotten sick, and after testing negative for Covid, flu, RSV, and strep, we decided to go ahead and go, even though I was not feeling well. Things at home went really well for a few days. Rachel and Maurice had done a beautiful job preparing for their time with the kids, and the kids were thrilled to have these days with them. They did some fun things together as well as the usual day-to-day things.

Curacao is beautiful and warm, and we enjoyed the all-inclusive resort where we were staying, but we were very run down, and my sickness was not improving. We snorkeled off the beach a little on Saturday, but I found it exhausting and ended up sleeping much of Sunday. A doctor came to the resort on Sunday evening to see someone with an injured knee, so he also saw me, diagnosed me with bronchitis, and prescribed a couple of medicines.

Back at home, the kids had gotten to bed, and the seizure alarm triggered Maurice to go in and check on Daniel at 8:09 when he found Daniel seizing. Rachel and Maurice handled this situation really well. The night before, Maurice had told Rachel that he wasn’t comfortable if Daniel were to have a seizure and felt they needed to go through the action plan step by step so he would know exactly what he needed to do. They did so, dividing up tasks and determining who would do each thing if Daniel were to have a seizure. This was clearly God’s grace in prompting Maurice to speak up about this, as the very next night, they would need to implement the seizure action plan.

I wrote last Spring about Daniel’s upcoming surgery to implant a VNS (vagus nerve stimulation) device. That happened on May 1st, and Daniel recovered from that surgery well. The VNS discharges an electrical impulse to Daniel’s brain every five minutes to regulate or calm down any aberrant electrical activity and reduce the likelihood of seizures. In addition, in the event of a seizure, a magnet can be swiped across the location of the implant on Daniel’s chest to trigger a minute-long electrical impulse to try to stop the seizure. The VNS not only reduces the likelihood of seizures, but it can also help people with epilepsy to think more clearly. Daniel experienced this benefit and had told us in the summer that since he had the VNS turned on, “it is easier to think”. This has been obvious in the depth of communication he has had and the level of processing he has been able to do with school work and general conversation. From the time of the implant until December 18th, there had been no seizures. December 18th, he had a seizure, and I swiped the magnet, which stopped the seizure within 2 1/2 – 3 minutes. It was one of the shortest seizures Daniel had ever had, and we were very encouraged at how effective it was.

Since he had had this recent seizure, and the magnet had worked so well, we felt it was unlikely for him to have another so soon but that the magnet would again work effectively. This proved not to be the case. Despite swiping the magnet several times, the seizure did not stop. After the first swipe, Rachel tells us that Daniel took a deep breath like he does when a seizure is stopping and seemed to calm down with less twitching. However, this only lasted a short time, and the seizure continued stronger than before. By this time, Maurice had called 911, and Rachel got us on FaceTime, so we could see what was going on. Rachel administered the rescue medication, and for the first time in years, the paramedics arrived in just a few minutes. It was evident that this seizure wasn’t stopping, so I urged the paramedics to get Daniel in the ambulance and do their assessment there because they needed to get him on the way to the hospital. One of the paramedics picked Daniel up and carried him to the ambulance with Maurice right behind. Rachel would stay back at the house with Hannah, who was sleeping.

Maurice kept Dave and me on the phone, so we knew and could see what was going on. Daniel continued to seize, and we all agreed that another dose of medication was needed to try to stop the seizure. They were initially heading to Levine Children’s Hospital in Charlotte. As is often the case with additional medication, Daniel’s breathing slowed, and it became necessary to go to the closest local hospital to stabilize him. There, a trauma crew took over and really hammered Daniel with medication to get the seizure to stop, which still took a long time. Overall, Daniel seized for well over an hour, which is terrifying. Some people believe seizures don’t cause damage, but our doctors have warned us that brain damage can occur within minutes, and lengthy seizures can cause devastating neurological damage.

Back on the island, Dave and I were a wreck. This was the worst-case scenario we had discussed and planned for, but it was still very frightening. We prayed out loud for God to stop the seizure, spare Daniel’s life and prevent any brain damage. It was so hard being so far away and having no control over the situation. That we have control is an illusion anyway, but when I am present when something like this is happening, I provide information about Daniel, try to help in the ambulance, hold his hand, whatever I can do. I felt like my prayers were bouncing off the ceiling, and wondered if we were wrong to have been on a getaway or if this was going to be the end of Daniel’s time on earth. Dave voiced concerns about possible impairment resulting from the seizure and how that was as frightening as Daniel dying. I paced the room, praying and praying. It felt like absolutely forever before Maurice told us they had stopped the seizure.

With all of that medication, Daniel stopped breathing and the team took control of his airway, intubating him. They then tried to get a helicopter to transfer him to the children’s hospital, but there was bad weather around the hospital in Charlotte, preventing the helicopter from taking off. By this time, Rachel had turned Hannah’s care over to Dave’s mom, Lorie, who lives in the apartment adjacent to our house, and Rachel had come to the hospital to be with Maurice and Daniel. They waited for hours for an ambulance to come transport Daniel to Levine Children’s. During that time two trauma nurses kept close watch over Daniel and adjusted his sedation medication as needed to keep Daniel calm and from pulling out the tube down his throat that was keeping him breathing. Rachel and Maurice did amazing, staying with Daniel and talking to him to calm him. Finally around 2:30 a.m. an ambulance took Daniel and Maurice to Levine and Rachel followed in the van. Close to the hospital Daniel began to come to and was struggling with the tube in his throat. Maurice told us they just took off running to get him inside and medicated as soon as possible. He was admitted directly to the PICU and before too long they took the tube out to see if Daniel could breathe on his own. He did, and then proceeded to sleep for a while.

Dave and I were soon on the phone trying to get our flights changed to come home as soon as possible. To our chagrin, the earliest flight was at 5:45 p.m. Monday. It was a long night and a long day Monday. The staff at the resort were very kind. The lady at the desk at breakfast took one look at us and thought we were hung over. We explained what had happened, and she was very sweet in trying to take care of us. We walked to the botika (pharmacy) and got my prescriptions filled, took a nap and packed up our stuff. Our flights went without issue, though customs in Miami was nuts and we had barely any time to make our connection. We finally got to the hospital around 1:00 a.m. Rachel and Maurice had been with Daniel continually for the previous 24 hours plus. Often the first day after a seizure is very challenging with Daniel’s behavior and frustration with IVs, feeling horrible because of all the medicine, and the general trauma of having been through the seizure. Rachel and Maurice handled it like champs. They went home with Dave, and I stayed in the hospital with Daniel. It was SO GOOD to see him and to hug him and kiss him.

Daniel seemed to be doing well. He had a sore throat and cough from having been intubated, but the medical team cleared him for discharge and we were able to head home late Tuesday morning. He has done quite well this week, though he has slept in very late each morning, which told me how much his brain needed rest. He is not a sleeper-inner at all, so for him to sleep til after 9 or 10 each morning was notable. There does not seem to be cognitive impairment as far as I can tell. I think there is a little physical regression, but he has been quite weak so we have not pressed him to do his walking practice or to go to school. He has had some emotional struggles, yesterday being very acute. As Christians, we talk about heaven and how people are healed from their bodily infirmities or sicknesses when they die. For Daniel, this means that when he gets to heaven he will be able to walk, and he talks about wanting to die so he can walk. I don’t know that this is coming from depression, so much as frustration with the inability to walk independently and feeling embarrassed that everyone else at school and in our family walks around. He wishes that all the kids at school used wheelchairs, and I can’t blame him. These feelings and thoughts about dying seem to be logical conclusions from his perspective, but it is very hard to hear him talk like this. Yesterday there were lots of tears, angry outbursts, and pleading with me to call 911. He had an appointment with his counselor yesterday afternoon, and that seemed very helpful. He has been his usual cheery self today.

Dave and I continue to be very run down, and I am still not better. I haven’t heard well out of my right ear since our flight Monday night, and I probably need to go to the doctor yet again. We are so weary, and our getaway ended up being not at all restorative. We didn’t sleep well at night because I was coughing so much, and then with the shortened trip and the trauma of the seizure on top of everything, we are as tired as we were before we left, if not more so. This morning I woke up at 8:30, went out to the couch where Dave and Daniel were, and fell back asleep until noon. We have all been in our pajamas all day, and now it is almost time to go to bed again.

We are so incredibly grateful for the number of people who quickly started praying for Daniel and for us. FaceBook may be a lot of things, but as a quick way to implore our dear ones to pray, we are thankful for it. Many of you reached out right away, and it touched our hearts that you did. Thank you. We are very aware of God’s mercies to us in this time. God would not be less good if this situation had a different outcome. He is faithful, and he is gracious. We are acutely aware that with Daniel’s medical complexity, things could go differently at any time. God’s presence and comfort are there for us, even when we struggle and cry out for mercy. Honestly, in the area of weariness, we are still crying out for mercy and would be so grateful for your prayers for us in this way. Our move this year to a single-level home has been important, but it has been hard, and we have been sick so much of the time since we moved. The kids had Covid in July, Dave had it in August, I had it in September, then Dave had the flu badly in November, and Hannah was sick most of December into January. Now I have this pesky whatever-it-is and will be very glad to see it go. It has been hard to get our feet under us in the new house with all of this going on. And, of course, Dave is working, and I am in grad school, so there is always so much going on. We were without help for Daniel through the summer and were so incredibly grateful when God sent Rachel our way in August. Rachel is in the same grad school counseling program I am in at Gordon Conwell, but we had not met each other when she answered my Care.com ad for help. She and Maurice have been an “over and abundantly beyond what we ask or think” answer to our prayer for help. It is so good to have help from like-minded people who fit into our family easily and enable us to function so much better than we do on our own.

Thank you again so much for your prayers for Daniel, Hannah, David and me. We need your prayers and care for us, and we appreciate it so much.

HAPPY BIRTHDAY, DANIEL!

April 25th was Daniel’s 11th birthday! It is hard to believe eleven years have gone by with the joy of Daniel in our lives. He is a treasure. We had a really fun party the Saturday before with fourteen of his friends hanging out, playing games, absolutely destroying a pinata, and eating cake. It was a great time. He also enjoyed having the rock outside his school painted in honor of his birthday. New Nerf guns have kept our house a danger zone ever since, and a late-arriving, much-requested, excitingly-anticipated gift of an electric guitar will be arriving this afternoon. He can hardly wait. We’ll be getting a mini-amp to try to control the noise.

SURGERY

Daniel is scheduled to have surgery on Monday, May 2nd, very early in the morning, and we would like to ask you to pray for him. The surgery is to install a Vagus Nerve Stimulator (VNS) which is a form of treatment for epilepsy. The goal of the procedure is to provide another way to stop seizures more quickly, to eliminate as many seizures as possible in the first place, and to lower the amount of epileptic spiking happening in his brain on a regular basis. We are very hopeful that this device will help him with better sleep, retaining information, improved emotional regulation as well as direct help with seizures. If you are interested, you can read more about the VNS here.

The Long, Long Road to Tipperary

Last summer I shared that we were planning to build a handicap accessible home for our family and move to Clover, SC, about 25 minutes north of where we live currently in Rock Hill. Our extended trip to Maine at the end of 2020 had convinced us that it was extremely important that we get our family into a single level home. When we returned to South Carolina this was further confirmed by a couple of bad falls on the stairs, one that sent Daniel to the ER and one that has left David with some seemingly permanent issues around his collar bone and shoulder. We have also been planning to have Dave’s mom closer to us in an in-law apartment, so we began looking for a single level handicap-accessible home with an apartment. We found that to be like looking for a unicorn – every option we looked at would require substantial revision. So, we decided to build what we needed and we actually went under contract in late January 2021 to build that home.

As a family we were really excited and drove out to the new home site many times. The kids were excited and we talked about being involved in the building process by installing a web-cam where we could watch the progress. A few months went by, then more months, and nothing happened. The pandemic was raging and global supply issues were affecting so many people, so we figured these were the reasons, but as more months went by and we saw other homes being completed in the neighborhood we planned to build in it became more and more perplexing. When a year went by and we passed the date in the contract when the house was to have been completed and the lot had not even been cleared it became obvious to us that the house was not going to be built. We were very prayerful and tried to sort out what God was leading us to do and finally concluded that we needed to let that dream go and terminate the contract. We still have been struggling in our two-level home and have continued to feel strongly that we need to get into a single level home and have a place for Dave’s mom as well. We began to look more diligently for a single level home, maybe without an apartment, but close to Dave’s mom’s current apartment. We saw several homes. We made offers on a few homes. I felt like watching Realtor.com like a hawk was taking up far too much of my time, but the real estate market is so hot that houses that came available would be under contract in hours, sometimes minutes. We looked at homes where maybe we could add a small modular home for Dave’s mom or build an addition. Everything just seemed like it was going to take so much work, and such additional expense beyond just the price of the home. After talking with planning offices in towns nearby and our county, I concluded that a plan like that was just going to be too complicated. I kind of threw up my hands that day and “gave up”. That night after I fell asleep David decided to do a little looking and got on Zillow for the first time. The next morning he said, “Hey, look at this house I saw on Zillow last night.” It was a single level, it had an in-law apartment, it was in our city, it was on a corner lot with over an acre of land in a neighborhood without an HOA. We went to look at it that afternoon and it turned out that the owner, a Vietnam vet who has had disability issues related to his time in the service, has done a number of things to the house to make it handicap accessible. He also had already thought through many different things that could be done and had undergone conversations about placement of ramps, etc. We made an offer later that day then had to wait an agonizing couple of days for them to receive the offers and make a decision. As you probably guessed, they chose us! Because of our situation and their needs, they just felt led to support our family in our pursuit of accessible housing by selling the house to us. Oh, and guess what? The owner’s name is Daniel.

We are excited to move into this pretty home. We hope to move Dave’s mom this coming weekend and complete our move right after the kids finish school near the end of May. There’s a lot going on and we’d be grateful for your prayers. Please be praying for Daniel and Hannah as they will have to change schools and neither of them is really excited about that. Perhaps they can make some friends in the neighborhood over the Summer that they can start school with come fall. The name of our new street is Tipperary Road. I didn’t really know what Tipperary meant or was, so I looked it up. I discovered that it has been mentioned in a couple of songs, one being a patriotic song by John Carpenter written in 1917. Part of the song goes “For the long, long road to Tipperary is the road that leads me home.” How perfect! It has been a long, long road since we concluded we needed to get into a single-level handicap-accessible home, and now it is the road to Tipperary that will lead us home for real.

Hi Friends,

Many of you know from FaceBook that we reset the clock December 23rd after over a year and a half seizure-free (19 months and 11 days). We don’t know exactly what caused Daniel to have a seizure. There are several possible contributing factors, but for a child with a baseline abnormal EEG, the reason will never be clear. It has been a week since the seizure. Daniel is not showing cognitive impairment after that very long seizure, for which we are incredibly grateful. He had noticeable Todd’s Palsy for a number of hours and continues to have a little bit of a drooling issue and significant behavior issues since the seizure. He did begin an anti-epileptic medication a week ago after the seizure and that appears to be taking a bit of adjustment, which is no surprise. Please pray that he can transition to this medication and have his body adjust to it before starting back to school next Wednesday.

I am specifically asking for prayer for David and me as we try to make decisions regarding Daniel’s care in light of how this seizure transpired. This seizure was different from past seizures in that his convulsions were slight, not triggering our seizure monitor. We are trying to determine if additional devices should be used, such as a motion monitor that goes underneath him and a pulse oximeter that could alarm if his O2 sats were to go low. David, myself, and Daniel’s aide were sitting in the living room talking with Daniel’s monitor right there. What was thought to be just Daniel adjusting himself turned out to be a seizure. The next day when we were able to go through the recordings on the monitor we were able to tell that he had started seizing 13 minutes before we went into his room. He had vomited without us hearing it or seeing it and for a period of time had been face down in his pillow (and the vomit). This discovery was very frightening for us, as this is often how people are found after SUDEP (sudden unexplained death in epilepsy). We have an anti-suffocation pillow for Daniel, and I believe that contributed to Daniel’s survival last week. Once we finally recognized what was happening and began to treat him, the seizure rescue medication which we administered did nothing because he had been seizing for so long. In the past we have found that if we don’t give the rescue med within 3-5 minutes, the seizure will be hard to stop. As usual, it took the paramedics about 15 minutes to arrive and we got Daniel into the ambulance as quickly as possible. He continued to seize while we were all discussing what medication he could or couldn’t have within a short time of the rescue med we had already administered. Then the paramedics had to calculate and recalculate what dose he should be given and all of this seemed to take forever. Whether the wrong medicine was decided on, or whether it wouldn’t have mattered, I don’t know, but once the medication was given the seizure stopped (good!) but Daniel’s breathing tanked (bad!). We were still parked outside of our house, both paramedics and me working on Daniel, and no one able to drive the ambulance. They told me they had called someone else to come drive and that it would take that person another 15 minutes to get there. Meanwhile they had decided that we needed to go to the closest hospital to get Daniel stabilized and we would go on to Levine Children’s Hospital later. I held Daniel’s head and neck in a position to keep his airway open while the paramedics communicated with the hospital and squeezed a bag to keep air going into Daniel’s lungs. Daniel began to turn purply-blue across his face and we were still sitting in front of our driveway! I prayed out loud and cried out for help while it seemed that we were very close to losing Daniel. Finally, one of the paramedics got out and started to drive and we went as fast as possible to the hospital. We were met by a room full of doctors and nurses and they began to work on Daniel. In talking about it since, we have discussed the “stab-fest” that ensued as they tried in five different places to get an IV going. Daniel writhed and screamed, which was tremendously reassuring to me – he was breathing! Breathing and conscious enough to object strongly. Hallelujah! This week he has shown off his bruises like badges of honor to anyone who will take a look. Amazingly, his wit and verbal abilities, and reading and mental calculating have not been impaired. Praise be to God. Brain damage can begin to set in after 20-30 minutes of seizing and he had seized for at least 45 minutes. We are immensely grateful to God and all who worked on Daniel that our family is still intact.

Honestly, I am still suffering from the trauma of this experience. We are keeping his current monitor at low settings which involves alarms going off whenever he moves around in his bed for longer than 25 seconds. So, we are being woken up multiple times each night and checking on him numerous times as well. This is very wearing. We have requested night nursing, and Daniel qualifies for an LPN monitoring him at night. As you may know, there is a shortage of nurses right now, so please also pray that we will be able to hire someone for this purpose. The aide who has been staying with us three nights each week will be moving away and her last day is in three weeks. We haven’t had her stay this last week because I am just too nervous so far and Daniel has been very sensitive to who is caring for him. He has been very anxious as well and often says he wants to stay awake all night so he doesn’t have a seizure. He has also talked about wanting to die and hating his body and hating that he has seizures. This is very hard to process for all of us.

I think I had gotten to a place, after 19 months, where I thought maybe Daniel wasn’t going to have seizures anymore, and maybe we had even gotten a little complacent. This experience last week was a sharp call to vigilance. This is the thing that people who don’t live with epilepsy, or don’t love someone with epilepsy, can’t really understand. Epilepsy is dangerous, and you always have to be prepared to deal with a seizure. It is a challenging way to live. My faith is not shaken – I know God has us in his care – but it doesn’t remove the need for careful monitoring and preparedness. I am shaken, however, and I know the lack of sleep and constant attention is draining me. We are struggling with being back in a place where a seizure can happen at any time (ha! We were really always in that place, but as the months went by we had settled into a new normal that didn’t have frequent seizures), and Daniel is back on anti-epileptic medication. That itself is a quandry for us – when he was on AED’s before they didn’t stop him from having seizures, and in fact, our records show that he had more seizures ON AED’s than he did OFF of them. Now, we sense some of Daniel’s behavior issues stem from medication side-effects, which are another issue to try to solve. My head is spinning much of the time with details about seizure monitors, oxygen monitors, medication, behavior issues, being on high alert, etc. I’m a little dizzy.

Anyway, I guess all of this is to say we need to be upheld in prayer. We need wisdom. We need peace and sleep and the right people to care for Daniel at the right times. David and I had planned a get-away for mid-January (to St. Lucia! So exciting!), but it seems that we will need to cancel that trip as it is just too soon to leave Daniel in what is currently an unpredictable situation and requires more people to care for him than we have arranged for. Maybe we will be able to push that trip into the Spring. It is okay to cancel it, but it is disappointing as we had been really looking forward to it, so I guess I am processing feelings about that too. If you have read this far, bless you. Thank you so much for caring enough to do that. Please pray for us as you think of it. Love to you all – Ruth for all of us

Just a quick update especially to ask for prayer for Daniel, Hannah and our family.

Since a couple of weeks after school started Daniel has been on a roller-coaster of behavior struggles. Without going into the details, I’ll just say he’s been sent home early from school twice, suspended once, suspended from his physical and occupational therapy appointments, and hospitalized for two days as a result of these behaviors. There are a lot of complex emotions underlying all of this related to his disability and just being a strong-willed child. We are terrifically challenged as his parents to know just how to help him with all of this. He has started counseling and will also be seeing a psychiatrist this month. This is very hard on all of us, and heart-breaking in a number of ways. It impacts Hannah as well, and is very hard for her. The Lord knows all the details, and he knows how to help, but we need his wisdom.

Here are just a few pictures of late. Daniel’s Halloween costume was turning his wheelchair into a John Deere Lawnmower and pretending to run a lawn crew. There is a picture of him in the hospital. An EEG was done to be sure he wasn’t having subclinical seizures that were contributing to him being out of sorts and having these behavior issues. The result of that is that his EEG remained unchanged from the last one which is good news. Still no seizures, so we are at almost 18 months seizure-free. Praise God! Lastly, a recent photo of Hannah, just to remind you of this sweet girl who has so much to process in her life. She saw the eye doctor last week and she needs glasses. For a child with no ears, wearing glasses presents some extra challenges and we are trying to sort that out in a way that doesn’t cause her to feel obtrusive.

The last few months or so have been very noteworthy and exciting for Daniel. It is high time I update the site! In late April, we celebrated Daniel’s tenth birthday. We have told the kids that for every fifth birthday they can have a big party, and we certainly did that for the big 1-0! Daniel invited several friends and we had a really fun Nerf themed party at a nearby Bowl & Bounce place. It was a great time of celebrating the ten precious years Daniel has been in our lives.

May 14th we had another big celebration – one year seizure free! Honestly, we could hardly believe it and were elated and abundantly grateful. Last year when we left Cleveland Clinic with such disappointment, we had no idea that the course of treatment we began following was going to be very effective. In March 2021, Daniel had an inpatient EEG for 48 hours which showed his ESES (Electrical Status Epilepticus of Sleep – the kind of epilepsy he has) spikes were down to around 50%. Last year in March (2020) at Cleveland Clinic, they were around 99%. Now, writing in mid-July, he has been 14 months seizure free. The impact of this has been so good for Daniel. One very typical side-effect of ESES is great difficulty learning and decline in cognitive skills. Being without seizure medication and with no seizures for over a year has helped Daniel so much academically. He is reading much better, remembering things and conversing at a more advanced level. This is so much more than what we had hoped for. We remain vigilant, and keep our safety bag with us at all times and keep our seizure monitor on him at night, but are still so excited for each day, week, and month that goes by with no seizures! Hallelujah!

Another fun event in May was Hannah’s ballet performance in The Nutcracker Reimagined. She was an adorable clown, showing off her new ballet skills that she had been working on since February. Both kids participated in a virtual triathlon as well. This came about through a divine encounter with a special couple who work really consistently at exercising. Daniel met Heather as she was entering the Y one day about to swim her portion of a virtual Ironman Triathlon. Daniel had quite an impact on Heather, and she has subsequently had quite an impact on him and on our family. One challenge that we are experiencing is the weight that Daniel has gained over the last year as a result of different medications he has been on (almost 30 pounds). He is growing, and the pediatrician expects to see a burst of height soon, but in the meantime, Daniel is struggling to bear his own weight when he tries to walk and finds it quite painful. Our “chance” encounter with Heather and her husband has served to begin to inspire and motivate us toward more physical activity as a family. This is a big challenge for us, but something that is important.

Near the end of May, Daniel’s wish through Make-A-Wish of South Carolina was fulfilled. Covid had impacted the types of wishes that were able to be granted and the time it took to do so. Daniel’s first wish had been cancelled in Spring of 2020, and he had decided that he wanted a camper. So, Memorial Day weekend found us in Charleston, SC where Daniel’s Make-A-Wish ceremony took place and our family became the owners of a new Coleman camper! We headed straight out on our maiden voyage that weekend and have camped a few times since, including spending Fourth of July weekend in Jacksonville, FL and we have plans to spend the first week of August camping in Maine near family.

On our first camping weekend, the whole purpose of the camper and specifically it being “Daniel’s Camper” was very apparent. You all know that Daniel has “never met a stranger” and will talk with anyone anywhere. Very often people tell me how blessed and impacted they have been by Daniel (and our family) and this was certainly the case that first weekend we camped. The granddaughter of the campground manager connected with our kids and apparently has been pretty lonely for some friends. She ended up being with us for most of the time we were camping there, swimming with us, playing mini-golf with us, eating with us, etc. This little girl has had some instability in her life and was clearly soaking up the love and attention in our family. What a blessing it was to include her and love on her. The kids really enjoyed having her around as well. We haven’t for sure settled on a name for the camper yet, but we are thinking “Wishing Well”. It is a play on words as a Make-A-Wish gift, but also as an expression of what God seems to lead our family into repeatedly as we meet people – wishing others well through encouragement, humor and blessing as they interact especially with our children.

In June we also celebrated Hannah’s 7th Gotcha Day. How very, very blessed our family is to have her in it! She is growing in beauty, knowledge, humor, grace, and understanding.

The summer is going by quickly, as the kids have had many activities and we have been squeezing in these little camping trips. They have participated in two art camps, two Vacation Bible Schools and a few day activities which have made the summer really fun.

Hannah had her tonsils out last Thursday so this week is pretty laid back for all of us. She is doing great, but understandably uncomfortable. Sunday, July 18th, was a special day for our family as Daniel was baptized. He has been asking about being baptized, literally for years, and over time we have become more assured of his understanding of what it means to be a child of God, to trust in Jesus Christ for the forgiveness of his sins and the salvation of his soul. It was a joy to celebrate this with him.

The kids have a Code Ninja camp scheduled for the last week of July where they will learn about 3D printing, then we are off to Maine for a week of camping and visiting with family and friends. School starts up here on August 16th. The plan is for the kids to go back to public school this coming year. We are in the process of getting a new wheelchair for Daniel. He has had his current power wheelchair for five years, and it is showing the wear and tear. There is new technology available as well called LUCI, which is like the technology in new cars that keeps them from running into the car in front of them in traffic. This technology on a power wheelchair increases the independence and safety of power wheelchair users, especially kids who are easily distracted in a school setting and might accidently run over other kids or off curbs, etc. We are really excited about this new chair – please be praying that we can get it very soon. These things can take a long time, and Daniel’s is the first chair being submitted to South Carolina Medicaid with this new technology. Our doctor and physical therapist are on board and many pages have been written already explaining why this chair is medically necessary for Daniel. It would be a miracle for sure to have it before school starts, but that is ultimately what we are shooting for.

Finally, in the way of Harris family news, we became convinced at the end of last year that we need to move to a single level living situation to better care for Daniel, lessen risk of injury, and increase his independence. We have been unable to find a house on the market that meets our needs, so we are excitedly awaiting the construction of our new house to be built in Clover, SC, about 30 minutes from where we currently live. Stay tuned for updates. With the supply chain issues across the world in many industries, it promises to be a lengthy process. We hope to be able to move next Spring.

We are grateful for your continued interest in Daniel and our family and for your prayers for us when we come to mind. We are encouraged with where things are currently in regard to Daniel’s health, especially the absence of seizures. It is wonderful to be able to write such a positive report!

Lyrics/Music by Martin Rinkart (1636)

“The author, Martin Rinkart, wrote this song during the horrendous 30 Years’ War and was the only clergy left alive in his city of Ellenburg. Due to the disease and famine in his city, it meant he had to perform 40-50 burials per day. In this midst of such, he wrote this amazing song of thanksgiving.”

This traditional Thanksgiving hymn seems more relevant this year than ever given its origin. Perhaps the purest kind of thanksgiving does not flow out of comfort, ease, peace, health … but out of struggle, challenge, illness, unrest. When you look for the good, the blessed, the joyful in the middle of the hard, thanksgiving can flow. I think that is where we are this year, and I am sure the same is true for many, many others in this most challenging time.

Verse 2 of that hymn especially resonates with me this year. “O may this bounteous God through all our life be near us, with ever joyful hearts and blessed peace to cheer us, to keep us in his grace, and guide us when perplexed, and free us from all ills in this world and the next.”

It has been several months since our last update on Daniel, and one thing we are extremely thankful for and so happy to report is that he has not had a seizure since mid-May, just over six months ago. He has also been off anti-epileptic medication since the end of June. No seizures and no mind-altering medications have enabled us to see more of the “real” Daniel. Until this summer, he had been on one or more anti-epileptic drugs (AEDs) continually for at least five years. The effects of the medicine, the effects of long seizures, and the effects of the rare form of epilepsy, ESES, all caused Daniel to have a very hard time learning and also a hard time with emotional issues. His brain injury in utero caused his cerebral palsy and has significantly impacted his ability to regulate his feelings. It was hard to tell what was caused by what, and until he was off the AEDs we weren’t sure what was medication related and what was brain injury related. Being off the meds has helped us in sorting out some of that, but the process has been quite a roller coaster ride.

On the positive side, we have been very encouraged by Daniel’s progress academically in the last six months. He has been able to retain information that he is learning and at this point he is able to read, which is huge progress. It is hard, but he can read beginner level books, and he is learning third grade level sight words. He is also showing growth in his math skills. Because of his steroid therapy earlier in the year, he was immune compromised and we could not send the kids back to school with the Covid-19 situation going on, so I have been homeschooling them, which has been freeing in some ways and extremely challenging in others.

One huge benefit of that, combined with David’s work from home job, was the ability to go up to Maine in mid-October where we will be staying until after Christmas. My mom is dealing with some health issues and had been unable to visit us in South Carolina as she usually does a couple of times each year, so we decided to go to her instead and have greatly enjoyed time with family and friends in our old stomping grounds. Maine is beautiful in the fall, and we got here before the beautiful color had subsided and the kids had fun picking apples at one of our favorite orchards. We have been so blessed by two wonderful rental properties with gorgeous views which have lifted our spirits. I mean, who wouldn’t love to look out the window to this:

As mentioned earlier, Daniel has been improving well. Yesterday, he made a Lego project almost entirely without help. This was a huge accomplishment for him. When we have tried Legos in the past, he has been interested, but hasn’t been able to either understand how to follow the directions or to physically put the pieces together. Yesterday he did both amazingly well and we were high-fiving him and heaping on the praise. He’s excited and looking for more Lego projects to try! We are very encouraged by Daniel’s progress, though the last nine months have been the hardest of our lives. As is often the case, sleep has been challenging for Daniel and so, of course, for us. The rapid weight gain from the steroids has impacted us physically and both David and I, especially David, are struggling with tennis elbow or tendonitis and shoulder issues. One thing we really weren’t expecting at this stage, though we knew it would come eventually, is that Daniel has been more able to experience his sadness and anger about his physical limitations and we have had many days of tears and grief and hysteria surrounding these issues. Trying to help him process this, as well as finding the right combination of supplements and medications to help his emotional regulation and get us all some decent sleep has been a huge challenge and has left us feeling pretty weak and dependent much of the time. We continue to be very grateful for prayer support. We need wisdom and creativity and strength and good humor to get by day by day and we know that God responds to the prayers of His people.

It has been a long while since I have posted an update. You might think it is because things are going so well and we’re all having such a great time that we just haven’t had the time to write an update. That would be lovely, but you probably know that isn’t likely the case. Truthfully, we are struggling a great deal. If you are someone who knows and loves Daniel and prays for our family, thank you very much. We appreciate that so much and we need prayer support.

Covid-19 has caused the summer to be difficult and disappointing for us as it has for everyone. We have been trying to do some nice things – like decorating and setting up the kids’ rooms the way they would like. We’ve been here for almost two years now, and we think we are going to be staying for a while, so we are painting their rooms and decorating and arranging and the kids are very excited and happy about these changes. We went to the beach one day a week or so ago and we had a nice time playing in the water together. We have been extremely blessed to have been approved for many more Personal Care Aide hours for Daniel than we have had before. In addition to his wonderful 20 hour per week daytime aide, we have been blessed by a lovely, gifted nursing student who is covering two nights per week and some extra afternoon hours as well. Because of the Coronavirus situation her internships were cancelled this summer and we have been the grateful recipients of her time, creativity and loving assistance with our children. She stays Tuesday and Thursday nights, which means that every other week David or I get three nights in a row in our own bed! That this is something we get excited about just speaks to the abnormality of our situation. Sleep continues to be a big problem for Daniel and for David and me as a result.

Last week Daniel finished taking the steroids, and we are now eagerly waiting for an EEG to be scheduled to determine what the level of epileptic spikes are in his brain while he sleeps. He has not had any seizures since one in mid-May. This is wonderful and it adds up to only one seizure in over three months. We are glad for that, but we are admittedly on guard each day wondering when the next one will come. We are unsure about the overall benefit of the four month course of steroids. Daniel’s behavior continues to be very difficult to manage, and while we are seeing some improvement in his learning, it is not to the level we were seeing when the steroid was at its highest dose.

Physically, Daniel is also very hard to manage. Those of you who have seen photos of Daniel on FaceBook probably noticed he has put on weight. Here are a couple of side by side photos of Daniel from mid-March and mid-June.

It is shocking to me the difference in this short time. He has gained 15 pounds and when the starting place is 63, that’s almost a quarter of his body weight! That’s like a 180 pound person putting on 45 pounds in three months. Add to this the mobility challenges he has, and the muscle pain caused by the steroids, and you have a boy who has quite a hard time getting around. I cannot lift him hardly at all anymore. He finds crawling or walking in his walker uncomfortable. Thankfully he has been interested in going on family walks in the mornings some days. He rides his bike, pushed by David, but it is at least a little bit of exercise. We are seeing a decrease in his voracious appetite since the steroids have ended and that is a good thing as well. Hopefully he will begin to lose some of this weight and have less muscle pain now that he is off the steroids.

It is hard to put in to words what we are experiencing. David and I are very run down and discouraged by the daily challenges, especially the behavior which can involve, screaming, swearing, throwing things, hitting, biting, and repeated obsessive demands. We are so thankful for the help that we have, but it does not prevent the frequent interruptions and need to address the behavior issues or take away the overall stress of trying to figure out how best to parent Daniel as well as how best to manage his medical needs. Working from home with the kids here all the time continues to be a significant drain on our emotional resources. Pray for encouragement for us, and wisdom in figuring out what is best for Daniel in terms of medications, exposure to others (the steroids have compromised his immune system), and what to do about school in the fall. Thank you for caring about our dear boy!

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.

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!

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.