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.