Some Good News and not so good news.
This morning, I saw a post that indicated that a group of church members from some area churches nearby, had a crew of men offering help to those in need in Macungie. I contacted him and he came to look at our garage situation. The flood water came right through our garage and out the front studio window.s etc. This group will help with my family to clear out all the mud and debris next week in the garage. Our garage used to be a business so it’s fairly large and has steps with storage overhead with multiple rooms.
Salem is a church up our mountain and this is where Jennifer went to her first years of school.
The bad news is, that the “roaring waters” of the flood actually came through with such force that it knocked the foundation off in the front studio area. The door does not open because that doorway is holding things up. They will attempt to see if somehow the foundation can be put back in place. This morning I felt like I was that doorway trying to hold up under the pressure. Now I feel relieved knowing people will help me work on this project or perhaps resource me in the right direction.
Thanks for your prayer and support. I have a place to start!
Glory to God.
“Trials teach us what we are, they dig up the soil, and let us see what we are made of” Charles Spurgeon
I forgot to update here that my procedure that was s heckled for Monday. It was postponed, due to insurance approval pending. Like a few have commented to me, perhaps it was a good thing since I’m still not sure how well my body would do with a surgery of this nature. It’s not just the procedure, but trying to recover afterwards. My pain level is very flared up all over and I have concerns with inflammation right now. I have not received clear direction on what my next step is. I will be speaking with the Sarcoidosis specialist next week about my plan of care and test results etc.
I am very concerned about the test results that are coming back for Jenn, Geoff and Britt. On Monday I received two phone calls to inform me that Geoff is aspirating into his lung. It’s a non-productive form of aspiration and dysphagia. The second call was concerning Jennifer and she is also aspirating and having trouble with her esphogas and swallowing. Jenn will need to see an ENT and testing for an area that showed up on the x-ray that needs further investigation. We are hopeful that the area showing up is part of her many surgeries on her airway from her juvenile laryngeal Papillomas. Thankfully, Jenn and Geoff have not ended up with any recent pneumonias, most likely because they are able to stay somewhat active, but it’s serious enough that both of them need to begin a modified diet and all of their liquids need to be mixed with thick-it to the consistency of nectar. Water and other liquids need this to help with swallowing and to help prevent pneumonia or serious aspiration into the lungs. Getting full cooperation will be a process for them, but they are working now with speech and PT/OT. Geoff will also be having an MRI soon. I have suspected for awhile that Geoffrey had symptoms of thyroid disease, but could not impress this upon physicians. The specialist that has helped us recently did test him and he indeed has hypo-thyroidism. Geoff also started a new drug from his psychiatrist and the effects and side effects have not been as helpful. I hope and pray his dr. listens to him and works along side his other drs.
Brittany is being referred to an ENT for some ear concerns. She had her audiogram. Brittany also has some heart concerns. Her EKG showed a incomplete right bundle branch blockage and findings I don’t understand. She has her echocardiogram and sleep study this month as well. Her lungs also need to be watched. Britt will have a test today to evaluate her airway and swallowing.
My heart is heavy and I’m struggling to rest tonight because I can only go step by step and try to come along side them as we walk this road together. There are things that are tugging at my heart and I want to do so much more for them. I want them to soak up as many positive experiences as possible. I want them to hold onto their hopes and dreams and fight. I’m thankful for their knowledgeable, proactive doctor, but I am wrestling with the reality of this disease. Myotonic Dystrophy is not what defines them, but there will be hurdles. Perhaps these new reality help address needs, but I feel like we are all struggling to integrate the new knowledge .
Emily has been a big help. She helps to put each of their eye drops in because their cornea gets dry. She helps to make some of the thick it and picks up prescriptions and much more. She has her own appointments and she is the youngest. She has had lifelong problems with her left hip and feet. She attends Physical therapy twice a week and is anticipating a contrast MRI from her orthopedic doctor. She will be seeing a new doctor in September not only for pain, but to address the supports she needs of her unique concerns. I tell her so often that I want to help her live out her dreams or pursue further independence, but she is comfortable with the helping. It’s hard on her because she indeed understands realities and works hard. I’m glad she is being used as a direct care worker.
Yesterday was a very difficult day. We didn’t know how we would be impacted by this Isaias Storm. Our home is already full of needed repairs but it’s hard to know how or who to contact for the needs. It’s hard when you can’t do some of the care yourself. I used to love tinkering around with projects, now I can’t do the projects that tinker in my head. Before Corona, a friend was helping me look at higher levels of the home where I can’t access or view. I worked on a list, but circumstances in the world in general magnify the repair concerns. It seems like the world concerns are snowballing. Being a homeowner is tough, but it allowed me to be in a home that could house the 5 of us. The mortgage is reasonable, and we have the finances to do house hold jobs, it’s just tricky to get supplies and find someone willing to help carry the steps. I’m reminding myself to go step by step and make the steps.
But yesterday we had severe flooding, so much so that the fire department was called because the flooding came through our yard and from other directions came close to flooding my bedroom, because it was dangerously close to the deck door Leading to my room and first floor. Fortunately It was just our basement that flooded about 5 feet yesterday. This basement has flooded two other times, but this was the highest the waters ever rose. Fortunately when the storm let up, the yard flooding went down. The flooding behind our garage was much greater because trees and debris came down blocking the streams and underpasses that are at the base of the mountain behind us. Everything seemed to be overflowing. Our neighbor was in his garage workshop when things got out of hand. The waters pinned him inside side his garage. He injured his arm and couldn’t be helped to get freed until the storm died down. I have a supply of medical things so Emily took bandages over to use until it was safe to have it addressed properly. Our large garage and much of its remaining contents is covered in mud and debris. The force of the waters went right under the double doors. On Monday, before the storm hit, Emily and a friend were cleaning the garage because there is a studio in the front of it that was a wood working shop, including showcases that the girls were trying to set up as a art area and shelving for others things we could store. The damage to windows and the garage doors is hard to look at. I’m just very grateful the floors we live on here in the home were not affected. The fire and police did respond and thankfully spent hours coming back until later in the evening to help pump much of the water out. My next step is to call a clean up company for our basement and furnace care. We have no hot water, but we do now have electricity. Our community was hit very hard so I’m not alone. This has affected the world. I’m praying there will be no more hurricane or tornado watches today. It sure is hard to see the devastation.
I was exhausted last night and hoped for a good night sleep, I slept a little but pain woke me up and then my mind was my worse enemy. I have much to be thankful for, but the many questions were swirling around about how to proceed.
I once saw a post that said: HOPE....Hold On Pain Ends. We all need reminders that pain isn’t always present. I included a photo above that was found over the weekend. It is a photo of me with two close friends at the beach. We are smiling and I’m jumping with joy and enjoying myself. In hindsight I realize when this trip occurred. We were on a majorette trip with the whole family. I look healthy and happy. This picture was taken only weeks before I became critically sick. It was a year following the break up of our family. It was a time when I felt the stress of the upcoming sentencing of my “husband”. This picture reminded me that even in times of stress, loss or devastation, we still continue on. We remember pockets of tears and bewilderment but their is also joy, laughter and living out the best life we have in that moment. The Debby in the picture jumping at the beach is still the brain and body that I’m living in. Today I May be sad, concerned, even discouraged, but I also have abundant joy. I don’t want to face the medical concerns, the homeowner’s care. I may not know who or how to get the help we need, but I take comfort in knowing God is not surprised by the events right now. I see His faithfulness over the years and even at my weakest, there has always been a strength that has pulled me through, even if I didn’t feel it in the moment or the memory.
I know that all these appointments, connections and responsibilities have not come together without support. I cannot stress enough how much your love and support means. Even when our family works independently, it does wonders to know that there are people cheering us on. My adult children feel that support and I see how they are proceeding with shoes of peace. This is a big part of the battle.. Prayer does matter and I cherish the fact that we can pray for one another.
I’m sending a hug to all of you or elbow bump.if you prefer.
This stood out in a book I’m listening to on Audible....
2 Corinthians 4:7- 9
“ But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed”
I Peter 5:10 “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.“